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coronado and calzada = healing

Jan 13, 2024 by tracy

Today I had a moment.

A few moments.

Of tears.

And breathing it all in.

Nine years ago, in January 2015, I went to Dr. Calzada’s for the first time. On that trip, Connie took me to Coronado Island and carried me across the sand to the beach so I could put my feet in the ocean. Even though I couldn’t walk and even though no one could push that giant wheelchair through the sand, she was determined to get me to the water and, with her super strong muscles, she did!

Today I was able to go back there and stand on the exact spot that my gurney wheelchair was sitting on that long ago January evening. Today I was able to walk across the sand and stand in the ocean for over an hour. Today I was able to hold my sweetheart’s hand and belt out all seven verses of “How Firm a Foundation” and declare with a heart full of gratitude that God has carried us through these years and will continue to carry us.

Nine years of miracles.

Oh, my heart. It’s more than I can describe in words, but I hope those of you who have walked this journey with me will be able to imagine that moment standing on the boardwalk in front of Mr. Sandman’s sandcastle creation and feel a bit of my gratitude – to God, to Dr. Calzada and his team, and to all of you. What a ride it has been!

cliff devries

Jan 25, 2022 by tracy

Oh, my goodness, this man, Cliff Devries, continues to inspire me. I’ve shared videos of him before, but this is the best one yet. Give yourself a gift and watch this year’s birthday dive and really listen to his words, especially at the end.

He became paralyzed 24 years ago during his brain stem/spinal cord tumor removal surgery…which totally hits home in our lives. This year’s video shows the swimmers pulling him up from the bottom of the pool and as I watched them I cried. I’m still crying typing this.

For long years, from 2012 – 2017ish or so, I was a lot like Cliff. I wasn’t paralyzed, but I was injured and had dysautonomia so badly that I couldn’t be alone and I couldn’t do much of anything for myself. I had big hopes and dreams (I always do!), but had no ability for my body to do them. Instead, I had friends who helped make my hopes and dreams come true. They carried me and pushed me and lifted me. Sometimes they fed me and bathed me. Someone always had to transport me to get me from point A to point B. Always, someone was my lifeguard. If these amazing people hadn’t been willing to be my arms and legs, I would have been stuck at home, which literally would have felt like death to me. I’m so grateful for the heroes in my life and in Cliff’s that allow us to live our dreams even when our bodies can’t do it on our own.

thankful thursdays 2/18

Feb 18, 2021 by tracy

Today is a good day. A tender day. A day my mind is drawn back to nine years ago on February 17th, 2012 when I was able to run and do back handsprings and had no idea what was coming in the next few days. Today my heart is full of gratitude for all of it. I know I have some amnesia regarding the pain and the anger and the sheer hardness of it all, but my heart is full of gratitude nonetheless.

I’m grateful for the opportunity to experience exquisite pain and see that it’s possible to come out the other side. Many times I didn’t know if that was possible. But now I do and that knowledge will strengthen me forever.
I’m grateful for the love that has been showered down upon us regularly. I cannot adequately describe how much the notes and hugs and meals and money and smiles and encouragement have done to carry us through.
I’m grateful for stem cells – what a gift these have been in my life. They have helped my body heal from so-called unhealable injuries and given me hope of having functional life again.
I’m grateful for Tami, who has taken me to Mexico fifteen times. I would not have been able to go without her. Her sacrifice for me can never be repaid. Every time you see me living and doing think of her and how she took care of me trip after trip.
I’m grateful for Plexus. These supplements have helped my body feel like me again. Priceless!
I’m grateful for the utter desperation that drove me to God because I had no where else to turn. My relationship with Him is sweet and soul-filling and completely worth the hard.
I’m grateful for my friends and family who have been there for us each step of this journey. So many times I had nothing more to give to this fight and someone would show up with a hug or a smile or a plate of cookies or a meal or money for treatments and my courage would be refueled. Thank you, thank you, thank you to each of you who have lifted and loved us along this journey.
I’m so grateful for our children. They have had to do hard things, face big fears, and carry a big part of the workload. They are each remarkable humans and I’m so grateful for their courage and tenacity and love and patience. May they always know how dearly I love them.
Last of all, I’m grateful for Richard. This man, oh, there are no words to describe how good and strong and kind he is. He has loved me without frustration and served without even a hint of complaint…and instead serves me with joy. He has cried with me, held me, cheered me on, and helped me stay sane. He is my superhero and my dearest friend. Oh, I love him!

Tomorrow I’m thinking of trying to do a back handspring at gym to commemorate the day. I just don’t know if I dare.

i feel good, nananananana

Jan 30, 2021 by tracy

Yesterday I played at gym. Like really, really played for a solid two minutes! I jumped around while playing beanbag catch with Hannah, one of my gymnastics teachers. We laughed so hard. And it felt sooooooo good. I think it might be the first time I have felt the freedom in my body to actually let loose and let the old me out to play.

I love the new me. I miss the old me. I’m feeling a merging of the two coming. And boy, howdy, it feels good. Can you hear James Brown singing in the background?

eight years

Feb 20, 2020 by tracy

Today is the 8-year anniversary of my initial hip injury. For the first time, I don’t have a celebration planned. In past years, we have had dinner parties, breakfasts, walks, and bike rides, but I’m not up to it this year. I’m fighting some immense emotional battles and with the loss of our babies last week, I don’t really want to talk to anyone, much less celebrate with a party, but I am definitely still remembering that day. How could I forget the day that changed our lives forever?

I remember running around the greenbelt on the 17th and how good it felt. It was the first run I was able to successfully manage my breathing and actually enjoy instead of feeling like I was in some sort of torture machine of my own making. I remember the back handsprings I did that day in the gym, a whole string of them across the mat. I remember feeling like Keziah and I were going to have an epic year of training and participating in triathlons, laughing and growing and accomplishing hard things.

That all changed on our run on the 20th. A searing pain started in my hip joint that brought tears to my eyes. My steps became shorter and slower as I struggled to breathe through the pain. I was determined to finish my training schedule for that day and tried to limp-jog while physically pulling my leg forward with my hands. It did nothing for the pain and I slowed to a walk. Keziah told me I didn’t need to keep trying, she would run on her own and that I should go sit down. Refusing to give in, I kept trying to continue, but finally the pain was so great, it was all I could do to hobble over to our Suburban. With tears frozen to my cheeks and pain coursing through my body, I tried to talk myself out of thinking something was really wrong.

But something was really wrong. It took us weeks to find out that I had torn my labrum in my right hip socket. That injury started a cascade of many other injuries and damage to my nervous system. For about six years, I lived in a variety of braces, splints, and wheelchairs. The nervous system damage progressed to sympathetic nervous system responses which look and feel like seizures, but are not brain-mediated. In 2015, after months of my nervous system shutting down more and more and being unable to digest food, I was given a miraculous gift of treatments with Dr. Calzada in Tijuana, Mexico. Since then, I have gone seventeen times and received stem cell treatments along with chelation, magnet therapy, radionics. These treatments saved my life. I don’t know if I would have actually died or not, but they have definitely given me back the functioning of my body. I can now walk and ride my special forward-crank bike and kayak and hike and drive and so much more that I never knew I would be able to do again.

And so today, my heart is grateful. So, so grateful for the many friends and family members who have taken care of me time and time again when I was unable to take care of myself during seizures or injuries. I’m so grateful for the nurturing our family has received, especially the love and support our children have been given as they had to adjust their lives to having a mama regularly pass out, shake uncontrollably in front of their eyes, and spend much of her time in bed. I’m so grateful for the life my friends have helped me to live by including me in their activities even when it wasn’t convenient to haul me around. I’m so grateful for the amazing treatments I have been blessed with that have strengthened my ligaments and calmed my nervous system.

I’m so grateful for Richard. He has taken care of me for the past eight years with so much patience and tenderness. Not a single time has he been frustrated with me for getting injured again or passing out or causing our family great inconvenience. He has willingly served and loved and filled me with hope and laughter again and again. He has sacrificed much, working 60-80 hours a week to provide for our family and then coming home exhausted and willing to keep working here to make up for all the things I couldn’t do. His heart and hands are always ready for one more conversation, one more act of service, one more challenging situation.

And now he needs us. In one short week he is having brain surgery to remove a vestibular schwannoma. We have no idea how surgery will turn out. It is quite possible he will never be able to work in his current profession again. Our lives are about to change dramatically. At times that feels absolutely overwhelming, but most of the time, we are filled with peace. We know we are in God’s tender hands. We know we are not alone. We know we have an army of people who love us. We know we have each other and that we can weather fierce storms together.

So we are sailing forward, with courage, hope, and faith, not in an outcome that everything will be okay, but in confidence that God is with us, that our covenants are eternal, and that somehow, someway, we will come out the other side.

thankful thursdays 4/25

Apr 25, 2019 by tracy

Glorious day! Banner day! Exactly what my soul needed type of day. The sun is shining, we had a wonderful day homeschooling, a visit with a friend, a one mile bike ride around the (empty) lake, and I made dinner, actually we all made dinner together. Me making dinner is not a consistent, regular occurrence at our home, but I really like it when I do. Days like this feed my soul. They remind me of why I do what I do in my mothering and why it is so important to me to be home with them soaking in the hours of my children’s fleeting childhoods.

I made it one whole mile on my Elliptigo around the lake on Monday and though my thighs were burning and I had to stop every quarter-mile to rest, I made it! Today I tried again and this time I made it a half-mile before I had to stop and rest. I’m so grateful to be able to start building muscles, for the equipment to do it, and for children that load all the stuff up and ride along with me very slowly so if I have fall off my bike or have a seizure, I won’t be alone.
Yesterday was our last day of iFamily for the year. While I was more than ready to be done teaching my three classes and all the prep work that they entail, my heart was chock-full of joy to see my Math Alive and GRIT students on fire about what we have been learning. My math students built AMAZING catapults for our catapult contest and my GRIT students have totally taken the growth mindset lessons to heart and made changes in their approach to life. Mentoring students feeds me. Seeing the impact my influence has in their lives electrifies my soul. The cherry on top is our amazing community. We have loved and served each other for so long that the result is a love beyond words.
Fisher has been giggling during math. Not that he enjoys it, but because it is his new coping mechanism. I’ll take giggling over grumpiness every day.
Our Keziah girl was given a huge blessing this week to have her track at college switched to Fall/Winter instead of Winter/Spring. This will enable her to get more credits in before next year and will allow her to come on more of our summer adventures. WAHOO!
Our oldest has been sick this week, which meant I had some precious hours with our grandson. This baby, oh my, he has my heart.
Laughter. Healing this knee and dealing with piles of big decisions, my mom’s recent surgery and subsequent blood clots, long days, full schedules, and very little down time over the past few months has about done me in. But laughter, dark chocolate, and read-alouds with our family have got me through the hard ~~days~~ weeks.

Now it’s time to play our new math games!

sheva

Mar 27, 2019 by tracy

Seven blessed years have passed since March 27, 2012 when Jessica’s father laid his hands upon my head and gave me a priesthood blessing in which God asked me to find my ancestors and do their temple work.

This day is beautifully sacred to me. I feel wrapped up in a warm blanket of my Father’s love and find myself smiling on the outside and rejoicing on the inside.

On the original March 27, I had no idea what lay in front of me. I could not imagine the pain and heartache and grief and seizures and injuries that were coming, nor could I envision the love, miracles, and mountains of JOY that would surround me. All I knew was I couldn’t walk and was in extreme pain. I wanted to be fixed. I wanted to be healed and I knew, just know, that I could and would be. My heart was open wide for a miracle.

And I got one.

Just not the one I wanted.

Instead my kind, wise, glorious Heavenly Father has poured out a miracle that is completely incomprehensible to me even still today. He asked me to find my ancestors and through that process my heart has healed in the most tender of ways. My capacity to love and sacrifice and obey has increased. My ancestors have walked this path of pain and injury with me – they have carried the pain, protected me from injury, and comforted me on dark, lonely nights when I was not sure I could continue to fight the battle that Ehlers-Danlos Syndrome has handed me.

On top of those miracles, He has provided a way for me to receive life-saving and life-giving stem cells. These cells have given me a chance to live a normal life. They have dramatically decreased my seizures and injuries and have given me hope for the future. Oh my goodness, tears of gratitude and joy just thinking about it.

Today I am basking in His peace. His love. His tender, personal care. He has kept His promises to me and I have kept mine to Him…a beautiful sheva.

On Saturday a group of friends and family will go to the temple with us to commemorate these past seven years by doing sealings for my ancestors. There are no words to express my gratitude for the privilege I have had to spend the last seven years falling in love with my ancestors and providing a way for them to make covenants with God and be sealed together as families. What a glorious journey!

p.s. Sheva is the number seven in Hebrew and it encompasses the ideas of promise, covenant, oath. One of our daughter’s middle names is Elisheva which means “my God keeps His promises.”

a bit of mourning and a whole lotta peace

Jan 19, 2019 by tracy

This pic came up in my Facebook memories today.

It was taken January 18, 2012, a little over a month before the fateful injury to my hip. One month before the years of pain, injury, seizures, and exhaustion took over my life. There is SO much joy in this pic. At the time I didn’t super love this pic because all I could see was my crooked, yellow teeth. But now? Now I see her vibrant spirit and uncontainable excitement. I see the lack of pain on her face. I see exuberance. I see her and a small part of me wishes I could go back to that girl.

I posted some of my feelings about it on Facebook and received this response from my dear friend, Robin. She has known me since 1996 when Blythe was a wee babe and we have been through many adventures and soul-filling experiences together.

That girl IS great, but that girl hasn’t yet come to know how strong she truly is. That girl was strengthened and led to things, people, tools and gifts that were preparatory for the upcoming chapter of her life. That girl is incredible and trusting; faithful and positive beyond most people’s ability.

She prepared you for who you are now. She got you through those rough days, the unexplainable pain and never ending surprises that pushed you to your threshold. She helped you become the resilient, STRONG warrior woman you are! Love her. Thank her for helping you grow and become the woman you are today. NEVER doubt your abilities and contribution to others and the world at large.

I love you dearly, friend.

Tears. Sobs. Catharsis.

Robin knew just what to say to help me reach deep down inside and shift perspectives. It’s true. I need to thank that girl and thank this girl. This woman who has grown in faith, courage, gentleness, and wisdom is a wonderful person to be. She has more wrinkles. More depth. More weight. More.

And that is good. I’m grateful for both girls. And if giving up this girl is the price I have to pay to go to somehow go back in time and not get injured, not develop seizures, not have to endure the suffering, then it’s not worth it. The lessons I’ve learned are sacred. The person I’ve become is full of her own brand of beautiful.

Thanks Rob. I love you forever and always.

this day will always be sacred to me

Mar 27, 2018 by tracy

On March 27, 2012, my dear Jessica’s father laid his hands on my head and gave me a priesthood blessing. It was not the blessing I expected or desired. It was far more powerful than any blessing I had ever received in my life. It felt HUGE and full of peace and goodness and His power all at the same time.

God asked me to find my ancestors and to do their temple work for them. I have been dedicated to this work since then (though it took me two weeks to get started). This is big. Really big. I don’t usually stick with anything for very long at all. The fact that I have spent thousands of hours, enlisted hundreds of people in my temple army, and stuck with it week after week shows what a powerful message God gave to me that day. It was a message with staying power, a message that changed me in a way I cannot describe.

I am so, so grateful for that blessing, for that invitation from my Father to find my father’s family and allow them to experience the joy of building a relationship with Jesus Christ founded in temple ordinances.

This past Friday, we had a group of 22 dear friends meet in the temple to do 106 sealings to commemorate the 6th anniversary of my priesthood blessing. It was sacred and joy-filled and glorious.

God knew the healing I needed was far more than the physical blessing I was seeking that day. He knew my soul needed the buttressing of my ancestors to make it through the physical and emotional challenges of the past six years. He knew I needed their love and protection and joy. He knew I needed more of Him and His son. Through family history work, He has blessed me with all of these things. God is good and He is in the details of our lives. Hallelujah forever and always to the God I love.

losing patience and finding love

Mar 8, 2018 by tracy

My boy has been grumpy. Grumpy isn’t even the right word for it as it is SO FAR beyond grumpy. Full of mountains of rage? Obstinate beyond all conception? Having never raised a teenage boy before, I really have no idea what is normal. I have wondered if this is some crazy, anger-filled period that all boys go through (and if so, how on earth have generations of mothers survived it?) or if something is going on inside of him that is outside the bounds of normal.

Today is the umpteenth day of the grumps and I almost lost my cool completely and screamed at him for his refusal to do his math and his angry words and dagger eyes. But I didn’t. I calmly explained his lesson to him again and again and again. When he still refused to even try, I told him he could choose to do housework or math. After folding laundry and doing dishes, he finally lashed out at me.

“How many other kids have to have a mom who can’t ride bikes with them? How many other kids have a mom who can’t really do anything with them?”

Oh my. Big feelings right there.

I was a bit tempted to lash right back at him and say “I JUST bought a bike and we WILL be riding together and STOP your whining about how hard your life is and do your math. For heaven’s sakes, you have parents who love you and food to eat and hundreds of Legos and gobs of books and clothes to wear and you live in America and are not in a war zone!”

But I didn’t. I responded with a soft voice and said, “Oh buddy, I know. I know it is hard to have a mama who can’t do all the things you wish she could.”

At some point, I did remind him that I will be bike riding with him as soon as the snow melts and that we are going to have some epic adventures. And then he started crying and said, “What chance is there that you won’t get hurt again when you ride your bike and you will be in bed for another two years? Not very big!”

So fear and sadness are at the bottom of this grumpiness. It doesn’t excuse his behavior, but it sure does give me a window into his soul.

I know my broken body is not the worst thing in the world, not by a long ways. I know our lives are full of blessings and rich with beautiful friendships and awesome adventures. But today I saw for a brief moment how very heartbreaking it is for my tender little boy to have a mama whose body doesn’t work like normal. More love, more patience, more nurturing, that is what this boy on the cusp of manhood needs from me.

six years

Feb 20, 2018 by tracy

It is early morning on February 20, the sixth anniversary of my hip injury. The thoughts and emotions and heartache and joy and pain and gratitude of the past six years are swirling around in my soul. I can’t actually capture the magnitude of this experience in our lives, but I want to try to share some of my thoughts so I can always remember this moment of the journey.

We are at a place in the healing journey I didn’t know we would ever arrive. Over the past six years, I have been in wheelchairs, braces, splints, and tape continuously. At least one, and usually many at the same time, body parts have been injured and needing to be held together. Hips, sacrum, ribs, wrists, hands, ankles, feet, knees, jaw, vertebrae, elbows, shoulders, and face along with all the muscles and fascial layers associated with those joints. Thanks to hundreds of stem cell injections, I have been out of all my braces since August and have been out of tape since late December. I am actually, factually exercising multiple times a week – muscle building is happening!

AND I BOUGHT A BIKE! Yesterday, in honor of this sixth anniversary, I decided to celebrate in a big way and buy an upright bike. Last week while I was in San Diego after my stem cell treatments, Tami and I rented cruiser style bikes to ride from the beach to a darling restaurant we discovered in January. We rode about a mile and I was in HEAVEN!

It was hard as heck on my leg muscles, but it didn’t hurt my pelvis, so the wheels in my brain started churning. I came home and talked to Jeremy, my amazing PT, about biking. He initially vetoed the idea saying there is no way my pelvis could handle the force of being upright on a bike. After looking at crank forward bikes (which use a very different geometry from normal upright bikes), talking with Jeremy some more, and testing out all our local options, I found a bike that doesn’t hurt my pelvis AND I BOUGHT IT!

This beauty is the Felt Verza Cruz. It has crank forward pedals that open up the hip area, an adjustable, giant, comfort seat that can slide on that funky, curved seat post, and an upright handlebar position so I don’t have pressure on my very weak elbows and wrists. For any of you locals, Dave’s Bike Shop has them in stock and will take care of you.

Yesterday, Keziah and Fisher loaded up the trailer with all the bikes and we went over to the lake to ride in the 20 degree frigidness. It was SO cold. AND it was so fun to be on a bike and riding with my kids.

In a time I almost cannot remember, we were a cycling family. We rode our bikes everywhere, violin lessons, the grocery store, the park. In the first year we were married, Richard and I sold his old Hyundai and bought bikes so we could ride all over Boise. When Blythe was born, we bought a bike trailer and hauled her around with us. In the evenings, I would take my bike out and ride 10-30 miles on a regular basis. It was my time to be with God. Thirteen years ago, I had to stop riding my upright bike after my pelvis was damaged in a car accident when I was 40 weeks pregnant with Fisher. I didn’t let that keep me from cycling for long – when Fisher was about a year old I bought a high racing recumbent bike and happily rode my cares away many a night until that fateful February day in 2012 when everything changed…seemingly forever.

I have held on to that recumbent bike as a symbol that I would not give up the hope of healing. Doctor after doctor told me I would never ride it again and I should sell it. But I held on to that dream of someday getting back on my recumbent. But I never once believed I might be able to ride an upright bike with my family again.

And now I am. Not a normal upright, but an upright nonetheless. It is a miracle. An absolute miracle.

And so today, my heart is full and my eyes are leaking tears of gratitude. While I have a long, long way to go to get my body strong and functioning well again, right now I am grateful for the past six years of beautifully hard challenges.

My Heavenly Father’s tender care. He has whispered to my heart to trust Him. He has held me when my soul has been wracked with grief. He has taken away pain. He has sent angels, both earthly and heavenly, to minister to me. Oh, how I love Him.
Richard. This man. This magnanimous, gentle, full-of-love-for-me superhero. He would never think of himself as a superhero, but he is. He takes care of me with a steadfast, patient, always encouraging love that gives me wings to fly even if I’m stuck in bed.
My amazing children. Oh, the tears. These kiddos have been through a lot. They have had to watch their mother seize on the floor, speak incoherently, be carried out of buildings, and sob her soul out. They have had to be cooks and cleaners for years. They have put up with an often cranky mama, endless doctor’s appointments, and a lack of stability in their lives for a long, long time. The other night when I was trying to express my gratitude to them, Keziah said, “I don’t really remember life before you were injured, so this just seems normal and not a big deal.” Mom being injured is their normal and they have adapted beautifully. There have been hard days, really hard days of broken hearts and angry words, but there have also been many days full of laughter, learning, and a whole lotta love. I am so, so proud of them and the people they have become over the past six years.
My extended family. My mom and siblings and my dad and my aunts and uncles and cousins have blessed my life so much. They have paid for treatments, sent encouraging notes, prayed for me, cleaned my house, nurtured my children, and so much more. They have shown me the power of family again and again. My mom especially has gone above and beyond. She is fighting her own huge battles and she has showered me with love and encouragement on a nearly daily basis.
My absolutely incredible friends. I am richly blessed to have a huge community of homeschooling friends who have wrapped me up in their hearts and taken care of our family. We could not have walked this journey without them. Meals, hugs, rides, and rescues are just the tip of the iceberg. So frequently on my darkest days, a friend would come and lift my spirits or love on my children, and that would be a lifeline to get us through the hard. Many, many events and activities have been interrupted by my having a seizure or by another of my body’s needs and people have responded with love and patience every time. My dear friends have listened and laughed and cried and mourned and hoped and dreamed and everything in between. They are amazing. Oh, how I love the amazing women in my life. I’ve also been deeply touched by my church and online communities. I cannot express how life-giving the words and hugs and meals and encouragement have been. So many times when I didn’t know how we would go on, someone would reach out with a heart full of love and somehow we would make it through.
Stem cells and all that goes with these amazing treatments – the miraculous healing they have given, the money for treatments, and the many trips to Mexico that Tami has left her family for, taken care of me, and been a superhero in all the ways. She has sacrificed much and I’m so, so grateful. There is no way I could have done this without her. Oh, how I love her! Dr. Calzada’s treatments have given me a life again. When I first saw him in January 2015, I was hardly able to digest food, was having seizures on a regular basis, could not bend my hip more than 150ish degrees, had a torn LCL along with many other injuries, and had little hope of ever improving. I had been on a continuous downhill spiral with my neurological symptoms getting worse each month that went by. Each injury made my nervous system more hypersensitive and there seemed to be no way to prevent the injuries as simply rolling over in bed would dislocate multiple joints. I have been blessed to be able to go to Mexico 11 times. Each trip has been hard and wonderful and painful and full of healing. I’m so grateful for the miracle God has given me and the help that has been showered upon me to enable me to go.
My ancestors. On March 27, 2012 I was given a powerful priesthood blessing in which God asked me to find my ancestors and do their temple work for them. I was incredulous that He would ask anything of me when I couldn’t even walk and I was angry that He wouldn’t heal me on the spot and instead was asking me to spend my very limited time finding dead people that I didn’t care about at all. My attitude quickly changed and I fell in love with my ancestors. Researching my family lines, spending time in the temple, and orchestrating an army of people who are helping me do the ordinance work, has been one of the greatest blessings of my life. My ancestors are now dear friends. I know they have helped carry me through the past six years. They have spoken words of comfort to my soul, taken away the pain of injury, and protected our family from multiple tragedies. I’m so grateful God knew exactly what I needed and asked me to find them.
Jeremy, my amazeballs manual therapist. I can’t even imagine where I would be without him. He knows my body and what it needs and is able to put things back in place like a magician. He has stuck with me through injury after injury and patiently helped my body on this crazy adventure. His wisdom, gentle encouragement, and kick-butt skills have been an integral part of getting me to the place I’m at now.
The pain. I’m grateful for the physical, mental, emotional, and spiritual pain of the past six years. I have many wrinkles on my face that testify of the physical pain. I wish they weren’t there, but I guess they are badges of honor given to those who survive the hard. I hope my levels of empathy and kindness have grown in response to the mental and emotional pain. And I’m deeply grateful for the spiritual changes I’ve been blessed with as I’ve come to depend upon God and hear His voice more clearly. The price that I’ve paid to come to know Him more intimately is worth it. I would do it all again to have this relationship with my Heavenly Father.
The lessons. There are hundreds, if not thousands, of things I have learned and there is not space or time to recount them all. Here are a few. God loves me. My husband will stick with me through all the mess and yuck and hard. Miracles happen. A smile can change a life. Sometimes a long cry is necessary. Grieving can be beautiful and it is an essential step on the path of healing. People are good and kind and come in all sorts of superhero packages. Covenants with God provide power in my life. Hugs fill my heart. Hope is critical to a soul’s survival. I’m braver than I believed, stronger than I knew, and loved more than I ever knew was possible.

Thank you. Thank you for the big and thank you for the small. A huge thank you to each one of you who have blessed my life and walked this journey with me. Thank you for your love, encouragement, friendship, and hope. The importance of your influence in my life and the life of my family is immeasurable. We have needed each one of you and are so, so grateful you have been part of our journey.

I have no idea what the next year or six years will bring. But on this day, my heart is grateful for where we’ve been, what we’ve gone through, and where we are right now.

She looked back and marveled how far she had come. She didn’t wonder how she made it. She already knew the answer. Only with God’s help had she powered through. For without His strength, she could do nothing.

I just read through the past anniversary posts and boy, howdy, it has been a ride. If you want to check them out, here they are:

2013
2014
2015
2016
2017 – must have missed writing about it!

letting him in

Jan 18, 2018 by tracy

There is really no way to put the feelings and experiences of the past ten days into words, but I want to remember this time, so I am going to try.

Monday, January 8, was the five-year anniversary of the first time I passed out and had a seizure. I think because of the way my brain catalogs dates of all kinds, anniversaries of hard days are often hard for me.

This one was a doozy. I started bawling in the morning and didn’t stop for about 36 hours. January 8, 2013 played out in my mind over and over again. I saw myself collapsing to the floor, shaking, trying to find my head that was floating far away from my body, and saying all sorts of nonsensical gibberish. As the day wore on, grief filled my soul. I could not stop thinking about how hard the past five years of passing out and seizing have been, the pain and suffering of the injuries, the lost abilities, and the seemingly never ending heart rate issues. Then I thought about my children and all the things they have missed out on by having a fragile, broken mother who is unable to run and play with them.

Then the guilt came. I started thinking about the burden I am to so many people. Pictures came into my mind of the many meals, events, and outings which have been interrupted by my body’s needs. I thought of the money, time, and effort that have been given to me again and again and was overcome with guilt that so many people have given so much to not only help me get my life back, but to also just get me through each day.

Oh my, it was rough.

On Monday, during the crying-fest, a friend called and said we should go to Mexico to get the mesenchymal cells that are far stronger than the animal stem cells I have been receiving. I wanted them so badly, so intensely, but the guilt took over and I started telling God, “No way, this is too much. My life is not worth this much money.” All sorts of emotions were swirling inside of me – guilt at the possibility of getting them, fear that they wouldn’t help, overwhelming grief – and I could not process it all. I could feel the possibility of a big miracle, but I was terrified to actually believe it or to even let myself hope for it. All I could do was cry.

On Tuesday evening, Tami called and after talking for a long time, I finally let out a chuckle. That was the beginning of coming back to myself. Then Kami kidnapped me and took me to The Greatest Showman which did my heart a world of good and reminded me that dreams and hopes and love are worth fighting for.

By Thursday, I was feeling much better, but still fairly ambivalent about accepting the opportunity to go and get the mesenchymal cells. That day as I was showering God spoke to my heart and gave me a powerful message of hope and healing. Later that day, God showed up in big ways again and sent my friend, Karami, with a message. She told me God was working on my heart and to let Him do his work without judgment, without fear, but instead, to let Him in and to be gentle with myself while He is working. I shared some of my feelings about the mesenchymal cells and she said “Trace, I think you have gotten comfortable with THIS level of a miracle, but God has TTTTTTHHHHHHHHHIIIIIIIIISSSSSSSSS big of a miracle for you.”

Those words opened my heart to a flood of ideas. For the next several days I pondered them and I realized I was telling God, “it’s too much.” I had to dig deep and really think about my beliefs about miracles and healing and God’s hand in my life. How could I say I would accept all of the atonement of Jesus Christ, that I believed I could be forgiven of my sins, cleansed every whit, comforted, redeemed, and claimed by the God of heaven and earth, and yet not be willing to take in the possibility of miraculous healing?

More tears. More digging in the scriptures. More pondering.

I left for Mexico on Monday. I received my normal stem cell treatments on Tuesday in my back and hips. Afterwards, we went to The Greatest Showman where I was given messages of hope again and then the temple where we did initiatory work for my ancestors and shared beautiful, sacred moments with those on both sides of the veil. Each experience opened me up a little more to the work God is doing in my life. I cannot explain it, but I felt like a chisel was tapping at my soul, opening me up to His purposes one tap at a time.

On Wednesday, as I laid waiting for the mesenchymal cells, I poured out my heart to God. I told him that I was finally open to whatever healing He has for me, big or small, I was ready. As I opened my arms wide and told Him I was ready to submit fully, tears flowed out of me again. After the IV started, I opened my Daring to Hope book and right there in front of me was exactly the message I needed to hear at that moment.

Katie Davis Majors is referring to the woman with the issue of blood…and to each of us.

I resonate deeply with this woman. I can see her pushing through the crowd, reaching out for Jesus’ hem. I can feel the strain, that desperate reaching, longing to touch Him, just even the very edge of His robe. A longing for only Him. I imagine her inner pleading after tying so long to be healed: Please, please.

And I am like the woman with the issue of blood, except I am the woman with the issue of doubt. I am the woman with the issue of sin, with the issue of flesh, with the issue of forgetfulness. I am the woman who wants to snap my arms shut and protect, fold my arms tight around my chest to guard my heart, which is still so raw and exposed, protect if from being broken yet again. I want to gather my children to myself and shelter them from the ugly hurt of this world. My mind wanders too quickly from He can To I can’t, and my focus turns to earthly struggles before it rests in my Heavenly Father.

Hope is the great expectancy of this woman that Jesus will help her. Hope is our great expectancy that we will know HIm in all our circumstances, even the seemingly hopeless ones. Hope is this mocked-by-the-world, nonsensical reaching through the crowd just to touch Him. To the cynical, it seems like a waste. Why reach in such a crowd? Everyone is touching Him. You’re wasting your time. What if nothing happens? We risk great embarrassment to hope in this way, don’t we? But the reaching shows something about the woman’s heart, something about my heart: a faith undeterred by the world or our circumstances, a faith that believes in what we cannot see. My expectancy grows my heart toward God, grows room in my heart for more of Him, and allows me to see Him here, wherever here is.

Sure, daring to hope feels a little too much like playing with fire, especially when we have been burned before. To hope exposes me, just like the bleeding woman. It lays me bare and vulnerable because I can’t fix this and can’t control the outcome. My hope puts me right up next to Jesus, torn open and defenseless, completely at His mercy, completely surrendered.

Oh. My. Goodness. The tears poured out of me. The cells dripped in. My soul opened up to God and I begged Him to come in deeper, to pour His power and light and mercy and miracles into every one of the 21 million stem cells entering my body and every fiber of my being.

Holiness.

His holiness filled the room and wrapped me up and there are no words to describe it.

I do not know what healing these cells will bring, what healing God has in store for me, but I do know, emphatically, He is with me. I am in His hands and He is taking care of me in beautiful, soul-filling ways.

May I always remember.

summer has arrived!

Jun 13, 2017 by tracy

June is nearly half over and summer is here! We just completed our 14th year of Swim Camp. There were 49 families camping with us, 110 kids in lessons, and many other children not in lessons. SO MUCH FUN.

The next few weeks are full of family reunions and camping with Tami (cousin), Mikelle (sister), and my mama on the banks of a beautiful, slow-moving river the kids will play in all day long. This summer we will also have our regular trip to the Wind Rivers, a wedding for my niece, Andie, in Fort Collins, and many days at our local lakes and rivers to kayak and paddleboard and soak up sunshine.

Summer time is just what I need. Amazing how it comes around every year at just the right time to fill my soul up with family, nature, time on the water, blue skies, and Vitamin D from that glorious sun.

I am recovering from my trip to Mexico for stem cell treatments four weeks ago and I can feel my torn ligaments healing. It is ever so slow, but it is working. We went kayaking and paddleboarding on Memorial Day and my hands were able to paddle. It hurt my shoulder with the still recovering subscapularis tear to pull on the paddleboard, but kayaking was okay. It must engage a slightly different set of body parts. My goal is to be in my boat and on my board as much as possible so I can grow some serious muscle. Last summer I was able to grow 5 lbs of muscle between May and September because of all the kayaking I did. I lost nearly all of it over this long winter of injuries. Now, I want to grow more and then NOT get injured and be able to keep growing muscle all winter long.

Bring on the sun and sea (or beautiful rivers and man-made lakes which populate Idaho!). Bring on the family time. Bring on the camping in the majestic mountains and fresh air. Oh, how I love summer.

he carries me

Apr 4, 2017 by tracy

I had a pretty big epiphany this weekend during General Conference. I started to have this epiphany during the 2015 October Conference when President Monson seemed to nearly collapse at the pulpit, but it came even more strongly into my heart and mind this time.

President Monson, our prophet, is not doing very well physically. Richard and Dallin told me that at the Priesthood session on Saturday night, he only spoke for a few minutes and his words were so slurred that captions were used so the audience could understand him. On Sunday morning, he again spoke for just a short while, but his voice was clear and strong and completely understandable. He was able to announce five new temples and share a message on daily scripture reading and pondering. He did not attend the Sunday afternoon session because he was too weary.

As his situation settled into my heart, a new understanding of my own life started growing. So very often, I can muster the energy, the capacity, the presence to show up and do something big…like present at a conference or teach a class or throw a party or go on an adventure. But then I crash. Hard. I will pass out, have seizures, spend a whole day in bed, stop digesting food, have a crazy heart rate, or the whole shebang of other symptoms of dysautonomia. I often think to myself, I must be making this whole thing up. Because if I can get up and do the BIG THING, whatever it is, I should be able to do big things all the time and be just fine. So, I must be making this up or wimping out or just not having enough grit to do ALL THE THINGS.

This may be a long-term struggle for me, this internal yo-yoing back and forth, but as I heard his voice on Sunday morning and stared at his empty chair on Sunday afternoon, I felt God whispering comfort and peace to my soul. I felt Him telling me that He is helping me do the BIG THINGS and that just because I can sometimes do them does not mean I can always do them.

My mind still doesn’t really understand how I can do a thing one day and not be able to do the same thing the next day, but somehow, in those sacred moments of Conference, He let me know it is the reality of my life and that I am not making anything up, am not a wimp, and am certainly not lacking grit. He helped me to understand, through watching our brave prophet’s example, that He can and will sustain me in doing the big things, at least some of the time.

Beautiful lesson from my loving Father.

five days till our hugs

Mar 30, 2017 by tracy

Our girl comes home in FIVE days. Oh, my goodness! It is so hard to believe that her mission, the thing she prepared for her whole life, is coming to a close.

I had all sorts of goals for while she was gone. I was going to lose twenty pounds. I was going to be not passing out, not injured…I was going to have made so much improvement physically that we would both know it was a mission miracle. I was going to make her a quilt with all sorts of cool mission pictures on it. I was going to have a darling room for her. I was going to have all her emails and photos printed out and made into a book. Certainly the yard would be de-junkified, the garage organized, and the house clean. At the very least, all of her weekly emails would be posted here on my blog for the sake of posterity.

The reality is that none of those things are going to happen. Perhaps some of them could have happened if I hadn’t been hit hard this month with new injuries and dozens of passing out episodes. We are focusing on surviving and thriving on the essentials…morning snuggles, nighttime read-alouds, and people fed some sort of sustenance (most likely not made by me).

Instead of the aforementioned list, our missionary will come home to a real family with real challenges and heaps of love for her that will be shown with lots of hugs, homemade signs, listening ears, and maybe some ice cream. The Pinterest version of a missionary homecoming isn’t all that necessary and I probably shouldn’t have let myself go down that road in the first place since I can’t even figure out how to make dinner or write a blog post on any sort of regular schedule.

Richard has been able to rip out Keziah’s poorly organized closet and build a new space that we are hoping will hold two young ladies’ clothing. Keziah has purchased two new twin beds for both of them and we were able to get new mattresses and bedding. So, she has an awesome place to sleep and a place to put her clothing. Total win, right?

In other news, my body is a mess right now. A hot mess. On the 10th of March, while STANDING and watching Annesley dance her heart out at an Irish Dance performance, my foot dislocated AND a ligament tore. I was doing NOTHING at all, just standing. The next day, while shifting myself in bed, I reinjured my right hand that we have spent the past 17 months healing. I had been out of my splint completely for two months and had been working out of it for about four. It is SO sore. I am back to not being able to write or mouse or do my hair. My foot is incredibly painful. I spend a lot of time in my wheelchair. When I do walk, I am hobbling around, all taped up in an effort to hold the bones in place. My left hand is still in a brace from the fall on October 29th and my left shoulder, though much better since the stem cell shots into the subscapularis tear in January, is still hurting and not able to do much. On top of all that, these new injuries have wrecked havoc with my nervous system and it is going haywire. The prior issues of food not digesting, heart rate skyrocketing and plummeting, passing out, seizures, and constant exhaustion are now pretty constant and I am tuckered out.

This is NOT the state I wanted to be in to welcome my girl home. But it is reality. It is the ride we are on right now and I am determined to make the best of it and not give in to despair and throwing in the towel. January and February were amazing months where I felt normal and capable and had SO MUCH HOPE that I would never pass out again. Everything changed in March and I am learning once again to turn to Him, to listen to His voice of peace and love, and make the best of what I do have control over.

Five days till we get to hug our girl and listen to her stories. Five days to make peace with the reality and NOT make my family crazy for everything we are not.

Life is good. For realsies.

eyes to see and ears to hear

Dec 10, 2016 by tracy

Perceptions are a funny thing. They determine how we see things, how we understand the world around us, how we evaluate other’s motives, and yet, they are so often wrong. Last night I had one of those moments when I realized, once again, how incorrectly I can perceive the world.

Last night was our Ward Christmas Party. When I finished eating, my heart rate went up like it usually does, and I leaned back in my chair and tried to relax and think calming thoughts to help it come back down. But all the stimulation of kids running around, people talking to me, and the mass chaos of hundreds of people being in the same room together were too much for my nervous system to process. I tried closing my eyes and breathing deeply for awhile and that helped it calm down somewhat. Eventually Richard left to go figure out a way to get our car right up by the door and I counted heartbeats, willing them to sloooooowwwwww down and tried everything I knew to calm my system. The men were all working hard taking down tables and chairs, but could see something was wrong with me and left my table and chairs alone.

Fisher, my dear son who hates to be an inconvenience to anyone, came over and said, “Mom, can you move?” Barely lifting my head, I mumbled, “No, no I can’t.” I thought, “Oh, my heavens, can’t he see I am on the verge of passing out? Does he really care more about inconveniencing the men putting away tables than he does about my body’s needs?” He asked again, “Mom, can you move?” Again, I mumbled “No” and tried to get him to understand that I wasn’t using the table and it could be put away as long as they didn’t move my chairs or try to move me. Not satisfied with my answer, he persisted, “Mom, can you move? They are playing basketball.” In my nearly unconscious state of mind, I nearly exploded inside thinking, “Seriously! He is wanting to play basketball when I am having an episode? He wants me to move so they have more room to play!” But I couldn’t say anything because I was fighting with everything I had to stay conscious and calm. Finally, he said, “Mom, I’m worried the ball is going to hit you and hurt you. We’ve got to move you because they are playing basketball.”

I opened my eyes and looked around and saw that there was a group of teens playing basketball and I was right on the 3-point line. They were running all over the floor and the ball was flying wildly near me. I had had no idea any of that was happening and the boys had no idea anything was wrong with me, they were just trying to have fun. Grasping the situation, I told Fisher, “I can’t move, so you are going to have to protect me from the ball.” His response, “That is what I have been doing, I just think you would be safer if we could move you away from here.”

Oh, my goodness, the tears of gratitude welled up inside me for this good, good boy of mine. He wasn’t embarrassed of me. He wasn’t worried about inconveniencing the clean-up crew. He wasn’t wanting to play basketball and have more room on the court. He was watching over me and protecting me without anyone asking him to and without me even realizing what he was doing.

So often I respond too quickly, long before I understand the real situation. I am grateful for a body that was unable to speak and lash out in irritation and was instead able to hear his quiet voice, full of love, trying to help me.

Eyes to see and ears to hear and hearts to understand…those are the gifts I yearn for.

p.s. Yes, I did pass out a few minutes later. As we slowly made our way out to the car, my body collapsed in the hallway with Richard and several other men catching me and taking care of me. I am surrounded by angels, both heavenly and earthly ones. Thank you to those of you who so willingly walk this journey with me.

four weeks with this crazy, dislocating pile of bones

Apr 16, 2016 by tracy

Four weeks ago I did a little baby cartwheel called a monkey jump at gym. It is just a little hop with your feet while your hands are on the ground. A small child didn’t understand what I was asking him to do, so after explaining it multiple times I finally did one. I never thought it would hurt me. And certainly never imagined it would cause the big mess I am in now. All I was thinking about was how this precious child couldn’t understand what I was saying and the only way to help him understand was to show him.

My hand isn’t getting any better. At all. The bones will not stay in place. I am having an MRI on Monday to look for torn ligaments. They are probably not torn as my ligaments don’t normally tear, they normally stretch for a gazillion miles and lay there limp and weak not holding bones where they need to be.

Right now Jeremy has it taped up with about 12 layers of criss-crossing tape.

Then I wear my hand brace on top of all those tape layers. With all the tape and bracing, I can barely move it. Do you see the lasso-type tape around my ring finger? It is to hold that bone up. There are four layers of tape there and it is still sagging. Do you see that?

I am under strict orders to not use my hand for anything. It is nearly impossible, but I am trying. Really trying. I need a How-To guide on how to function without your dominant hand. I cannot figure out how to get contacts in and out. How to brush my teeth. How to wipe. My left hand is not competent at doing any of those things, so even if I go the whole day not using my right hand, I still can’t figure out how to not do those things.

Once the MRI results come back, we will decide how to proceed. Jeremy and I both think I need a hard cast to completely immobilize my hand. Knowing I need it and being happy about the prospect of being in a hard cast for the entire summer are two very different things. I am still holding on to my kayaking dreams for this year, but am coming face to face with the reality that I may not be able to paddle for many months to come.

ARGH. The heartache is nearly more than I can bear. I love being on the water, gliding across the lake or coasting down a river. It is close to the feeling I have cycling and the only outdoor activity my body can handle. So I am not giving it up yet. I am hoping and praying and dreaming of miraculous healing while at the same time trying to open my heart to accepting this new injury and the ramifications it is handing me.

Writing is what I miss most. I feel like part of my brain is gone because I can’t write anything down. I can’t take notes on the books I am reading or write in my bullet journal or attend a lecture and record what I am learning. It is painful to my writing-loving soul. An integral part of my life has been removed and while it may seem like a small thing, it feels huge to me. Writing with pen in hand is a very different experience for me than typing or speaking into an electronic device.

We are slowly figuring out how to function without mom’s right hand and my left hand is getting slightly more competent at household tasks. We will figure this out, I am sure. In the meantime, I will be sporting lots of ponytails and glasses.

my hand is a mess

Apr 4, 2016 by tracy

So my hand is hurt. Not a little hurt, really hurt. It has taken me some time to come to that realization, but this weekend I finally let the truth enter my mind.

At each of my put-my-hand-back-together appointments, Jeremy has told me it is a big, fat mess and is going to take months to heal. I heard his words, but kept thinking it couldn’t be THAT bad and we would just keep putting it back together for a few weeks and then it would be all better.

(I know. I know. I am delusional.)

At times the pain has been intense, at other times, just a throbbing ache. When it is a throbbing ache, I am able to convince myself that this is not a big deal and will be over soon. When it is a shooting pain that brings tears to my eyes, I seriously wonder if I will ever be able to use my hand again. Well, the past few days there has been a lot of the shooting, help-me-not-scream pain and it has got me remembering when my foot had 13 bones dislocated in February 2014. I read all of the posts about that injury and remembered the pain. Remembered the hopelessness. Remembered the sheer courage it took to get through that injury. Remembered how incredibly long it took for those bones to stay in place again.

And then I realized, this hand injury is just like that foot injury. It IS going to take a long time to heal. It might not ever be back to 100%. It is a big deal and I need to face that so I can muster up the courage and skills to give my hand the best shot at healing. It is time for daily BF&C applications, using my Patches essential oil, resting it as much as possible, and clinging to hope.

I really don’t know how to not use my hand. My wrist has been injured since October 30 and I had to start learning how to not use it back then, but this is far worse and I haven’t figured out how to adjust to its new needs. Maybe I need to put it in a sling? Maybe it needs a different type of brace? Maybe I need a new brain, haha!

There are moments when I nearly think amputation would be better than dealing with the pain. Then there are moments I think it isn’t really a big deal at all. I’m pretty sure somewhere in the middle would be the better choice.

stem cells

Feb 28, 2016 by tracy

I am chock-full of courage! It probably sounds ridiculous for me to be shouting about my courage from the rooftops, but I am so grateful to God for filling me with courage and so stinkin’ proud of myself for accepting His gift that I have to shout it far and wide.

The story starts over a year ago when I went to a medical clinic in Mexico with the hope of getting stem cell injections in my knee (and other joints as well, but especially my injured knee). At that time I was told my body wasn’t ready for injections and that my nervous system needed to calm down before they could do anything in the clinic. I came home with oral stem cells to help my nervous system and a lot of disappointment that my quick “miracle cure” (HAHA!) wasn’t going to happen.

I went back in April and my nervous system had calmed down a little, so after much pleading, the doctor consented to try one stem cell injection in my knee. The results were fabulous and within a few short weeks I was in significantly less pain and had more stability in my knee. But I still wasn’t able to receive the other treatments the clinic offers and came home somewhat disappointed.

This past week was once again spent in Mexico. Before I left I was a pile of convoluted emotions: so excited to go, hopeful that perhaps I could receive stem cell injections, terrified of the pain of the injections, and scared to allow myself to get my hopes up at all. The roller coaster ride of going back and forth from one emotion to another wore me out and I spent significant time meditating and praying for several days before I left to get centered on peace and truth. It took lots of courage to choose to get off the roller coaster and go deep inside to the messages God was trying to send me.

Then when I got to the clinic, I was told I could have an IV and if it went well and I didn’t have a seizure, we would do an injection in my knee. Oh my, the excitement! And also a bit of worry about the pain. Last year’s injection into my knee was excruciating and I didn’t know if I could face the pain again. I spent over four hours receiving the IV on a very slow, careful drip in an effort to be as gentle as possible to my nervous system and I used that time to pray and ask God to be with me and take the pain from me.

HE DID! He filled me with courage and He totally made the shot doable. It was a gazillion times better than last April’s injection. Many people were praying for me back in Idaho and I could feel the power of their faith carrying me.

Since my body did so well the first day, we planned more injections for the rest of the week. In addition to the initial shot in the knee capsule, I ended up having both ankles, right wrist, LCL, my hip labrum (twice!), and both shoulders injected with stem cells as well. Before each injection I would feel some fear of the pain come into my being and I would turn to God and plead for courage. Each time I could feel Him giving it to me. It was amazing!

Injections into joint capsules without local anesthetic is painful and the hours afterward are a sore, stiff, barely moving time. But I did it. God did it. He helped me show up with enough courage to get through each injection and to get up again the next day for another round. I could feel heavenly angels attending me and am so grateful for the earthly angels that were with me holding my hand.

Now, it is time to let the stem cells do their job and get to work repairing the torn cartilage and stretched-out ligaments. I am trying to hold my hope of real, tangible healing and dreams of riding my bike in one hand while in the other facing the long, slow rebuilding of tissue and eventually muscles. My doctor told me to take things one step at a time and trust the process. I am committed to doing just that.

My heart is full to bursting with the love of so many people and my Father above who carried me through this week. If you would like to join me in prayer that these stem cells will work in repairing my connective tissue, I would be so, so grateful!

hip, hip, hooray, it’s four years today!

Feb 20, 2016 by tracy

February 20 is the 4-year anniversary of my initial hip injury. I need to both honor and celebrate this day. My heart is SO full of gratitude for the heaps of service, love, sacrifice, and true friendship I have been blessed with over the past four years. You, my dear friends and family members, have carried me, filled me with courage, helped me see hope, and have stayed WITH me in this fight. You have not abandoned me. You have not given up. You have prayed and smiled and hugged and cried and laughed and loved more than I ever knew was possible. Your words of encouragement, acts of service, and downright awesomeness have made all the difference in my ability to keep going with a smile on my face. Thank YOU for helping me stay strong!

Please join in this celebration by doing these four things:

1. Share a hilarious/interesting/touching moment from this hip/ankle/shoulder/ribs/feet/knees/seizing/passing out/peeing journey.

2. Share something you have learned from this journey of mine.

3. Share a message of courage with me and all my friends!

4. Do something kind and loving for someone else today. It will make me SO happy to have hundreds of acts of kindness done in honor of my Hip, Hip, Hooray Party!

If you can’t do all four, choose your favorite…just share something to commemorate this day.

I love you all! Thank you for joining my celebration!

farewell 2015

Dec 31, 2015 by tracy

Today is the last day of 2015. Wowsers, it is hard to believe this year of growth and change and pain and joy is gone. We have all learned a lot about doing hard things, giving and receiving, finding hope, enduring, and most of all, deep-down-in-your-little-toes joy.

The biggest change for our family has been Blythe leaving on her mission. She started the process of filling out papers in January, submitted them in April, received her call on May 4th to the California Irvine Mission, received her endowment in August, entered the Missionary Training Center on September 16, and arrived in California on September 29th. What an experience it is to get a missionary out the door! So much time and money and effort and heartache and happiness and precious moments all wrapped up in the same package. The two days we were able to spend with her in the temple before she left are among the most sacred and glorious of my life. I will always treasure seeing her dressed in white as she made covenants with God. And now, 3 1/2 months after she walked out our door into her new life, all I feel is peace and radiant joy. It has been a huge blessing to have my whole being wrapped up in a blanket of God’s love as my baby girl has gone out into the world to share His message of love and redemption.

We have had so many blessings this year: medical treatments and tests, working vehicles (and rescuing when vehicles broke down!), spending time with family, Annesley’s baptism, our long, bumpy driveway covered in gravel, an unexpected change in Richard’s job that gave him the hours he needed, many, many angels both on earth and in heaven who have taken care of me while I have episodes, Keziah’s job, gifts from the heart, magical days at the lake, camping in my mountains, donations to Blythe’s mission fund, and most of all, love. Heaps and heaps of love have been poured out upon us. My heart is full to bursting with the love I am surrounded with.

There is much I didn’t accomplish this year. I didn’t lose weight. I didn’t grow muscles. I didn’t keep a spotless house. I didn’t find a cure for connective tissue disorders (I mean that somewhat seriously…my brain is continually trying to solve the issue of defective collagen.) I didn’t read as many books as I normally do. I didn’t put on a big fundraising event. I didn’t clean out my closet. I cancelled my book discussion group more than half the months of the year. I didn’t write the book I wanted to. I didn’t figure out how to cook on a regular basis. I didn’t figure out how to make our budget work to save more money. I didn’t excel at personal scripture study (or family study either!). I didn’t finish my chalkboard project…or the skateboard swing project. Or stain the deck. Or clean out the garage. Or clean out under the stairs. Or finish the clothing purging project. Or burn the garbage pile. Or remodel the camper. Or defrost the freezer. Or plant a flower. Or beautify my yard in any way. I didn’t create a fabulous training program for the Primary Music Leaders of my stake like I wanted to. I didn’t make it home to my mom’s house even once. I didn’t start a business to bring in more money. I didn’t clean out Blythe’s room. I didn’t blog about Swim Camp, our GRL camping trip, Blythe’s endowment, her farewell, or hundreds of other important and wonderful things that happened. I didn’t do a lot of things.

But I did learn more about love. I did learn more about sacrifice. I did learn more about receiving and giving. I did learn more about grace. I did grow to love my Savior more. I did enjoy lots of snuggles with my children. I did deepen my relationship with my husband. I did serve and love and give my heart more fully to the people who have needed me. I have missed my friends who have moved away fiercely and have learned that love is worth the pain of loss. I have learned, more fully, that the power of God is real. I have connected more fully with my ancestors. I have learned more about forgiveness. I have chosen kindness more often than anger. I have chosen to feel more and build walls less. Somehow, through the grace of God, I have made peace with my body and its challenges. We did spend many days kayaking at the lake. We did have lots of family game nights. We did read beautiful books together. We did spend seventeen days in the mountains. We did float the river in Island Park. We did attend our family reunion at our favorite location. We did have family pictures taken. We did get our daughter on a mission. We did throw a fabulous ice cream fest at our home before she left. We did pray together. We did laugh and we did cry. We lived, in spite of injuries and episodes and pain and heartache, we chose to live. With hope and faith, we lived. What an amazing year!

God has given me thousands of opportunities to learn needed character lessons and while I am certain He has much more to teach me and I have much more to learn, I am grateful for the lessons I have been given and received this year. I failed many times and I hope I learned from the failures to love and give and serve just as much as from the successes. There have been many days of sorrow and loneliness and hopelessness and fear and despair and He has been here with me, teaching me, comforting me, and helping me to choose love over all else.

There is a lot of pain and heartache in this world. Right now, among many of my dear friends and family, there is gut-wrenching, soul-splitting pain. I cannot solve the myriad of challenges they are facing. I have no magic wand to end the suffering being experienced by those I love. But I can take them into my heart and pray and listen and serve and lift. I am reading For The Love by Jen Hatmaker and it is a balm to my soul. In the introduction, she shares her mission. I wish I had written it, for it is my mission as well.

After a friend of hers asks her child what she does for a living and the child doesn’t really have a good answer and says, “Yeah, but she doesn’t have a job where knows about something. Jen decides to write down exactly what it is she spends her life doing.

Besides being obviously esteemed in my own home, maybe I ought to clarify what exactly I specialize in, since is appears very, very unclear to my own child. Certain foks love numbers and columns and reconciled accounts. (I barely even know what this means.) Some of my good friends love organizing and administrating; they are weirdly good at it. I have family members who excel at web design and creative technology and others who are craftsman and builders. Educators, chefs, sports medicine specialists, realtors; all people people in my circle who obviously know about something.

A little closer to my space, some of my girlfriends are true theologians and love the ins and outs of sticky hermeneutics. Others are preachers with fire in their bellies. Some are academics working on graduate degrees in God. Some are social entrepreneurs doing great good with their companies and organizations. Still others give their lives to justice in hard places. This is how they are gifted and this is what they love.

I love people.

It’s what I know.

God has always made the most sense to me through people, His image bearers. I crave dignity and healing and purpose and freedom for me and mine, you and yours, them and theirs. I want us to live well and love well. The substance of life isn’t stuff or success or work or accomplishments or possessions. It really isn’t, although we devote enormous energy to those goals. The fullest parts of my life, the best memories, the most satisfying pieces of my story have always involved people. Conversely, nothing hurts worse or steals more joy than broken relationships. We can heal and hurt each other, and we do.

I’m hoping to help lead a tribe that does more healing and less hurting.

I consider that my job.

Oh my, isn’t that breathtakingly beautiful? I love her words and my goal for 2016 is to more fully live them – to heal more and hurt less.

We can do this. Will you join me?

back into the knee brace

Dec 20, 2015 by tracy

Soooo, I am back in my knee brace. I don’t know what I did to reinjure my knee, but it is pretty darn sore. It got hurt a little bit and became more unstable back on October 30 when I faceplanted on my front cement and tore the cartilage in my wrist, but it didn’t really hurt tons just a little bit. So we have been taping it to give it some suppport, but it wasn’t bothering me a whole lot and I wasn’t worried about it.

Then on December 10th I held our Closing Social for my Liberty Girls group and something, though I have no idea what, happened. As I was straightening up the house that morning, a sharp, take my breath away pain began to shoot through my knee. It felt like a serrated edge of a glass crowbar was prying my patella off. Oh my goodness, the pain. It took everything I had to get through the Liberty Girls tea party and then I laid down for the rest of the day trying to rest it.

The next day, I was told it looked like the meniscus was torn. A few days later when I saw Jeremy he said the meniscus had a new tear and the LCL was retorn as well and I needed to go back into my knee brace that I wore from December to the end of June. We talked about surgery and he said (once again!) that I am not a good candidate for surgical repair because it will just happen again and again due to my hypermobility. He explained how the menisci work and that in a normal person, they sit in between the tibia and femur helping them fit together and providing cushioning between the two bones. They generally move 6-12 mm during various movements. Instead of moving this small amount, Jeremy says my menisci are bobsledding within my knee joint, sliding all over the place and often getting trapped in places they shouldn’t be and subsequently being torn. So, unless we can fix the hypermobility, it doesn’t make a whole lot of sense to surgically repair it.

His explanation makes sense and I am super duper grateful for his honest and thorough assessments. But, boy howdy, it is hard to hear that the last resort of surgery isn’t a last resort at all. It is no resort at all as it isn’t an option. The options are to live with it or to figure out a way to have Prolozone injections to try to tighten up the ligaments and heal the cartilage like I did with my hip. Unfortunately, my nervous system is so hypersensitive now, there is a pretty big question as to whether my body can handle the injections.

My body didn’t like any of the nine series of Prolozone injections I received back in 2012. It became more and more sensitive to the ingredients until my nervous system was so damaged that at the final injection in January 2013, I collapsed in the office and began walking the road of passing out/seizures/autonomic dysfunction which is probably my biggest challenge now as eating and breathing challenges, temperature control, vomiting, shaking and passing out are such a pain to deal with. So even though the injections worked by helping the labrum heal and bring more stability to my hip, I am left damaged in other ways. Part of me thinks the risk is worth it and part of me is terrified at the very thought of trying the injections again.

Back in April, I received a stem cell injection in my knee and it made an immediate, dramatic improvement. We did it without any of the local anesthetics my body has so many problems with (hurt like CRAZY!) and only injected my own cells, spun and separated, back into me. That was at a specialty clinic in Mexico and if I could do that again, I absolutely would, but at this time it isn’t really an option. If I could find someone in my area that would do stem cell injections that would be lovely, but as far as I know, there isn’t. Plus the cost of stem cell stuff is exorbitant in the U.S. and fairly cheap in Mexico, so I don’t even know if I did find someone in the Rocky Mountain area if we could afford it. I’m not really sure of exact prices, but I was told the same injections I had in Mexico that cost about $100 would be $2000 here in the States, ARGH.

On top of the knee issues, my wrist is in a brace, my arm aches due to both the wrist injury and some entrapped nerves which are causing all sorts of pain and electrical activity. It is called Thoracic Outlet Syndrome and I am hoping all the nerve gliding work Jeremy is doing will fix it quickly. Also, I am having lots of episodes…this week, Tuesday and Wednesday had full episodes and Saturday night and Sunday during church I had some shaking, so we really need to be focused on figuring out how to calm down my nervous system so I can stop having episodes. That most likely means meeting with Dr. Fraser Henderson in Maryland so we can figure out if my brain stem is being compressed and causing all the crazy nervous system dysfunction or not, but in order to schedule an appointment I have to submit a geneticist’s report and the current wait on a genetics appointment at the University of Utah is 14 months…soooo, it is all up in the air and I don’t really know what is the right path to pursue.

In spite of all this, I am doing well. I am spiritually and emotionally in good places. We are having a lovely Christmas season with lots of reading of Christmas books and snuggles in our Christmas quilts from last year. We are trying to spread joy in little ways and not spending lots of time out and about as my knee and the rest of me just can’t take it. Each night we share a story from Jesus’s life, read one of our Christmas books aloud and then listen to about fifteen minutes of The Christmas Carol (if you want it on audio, this version is fantastic!). So, I am not posting this because anything is really wrong or because I am ready to throw in the towel, just as an update and a record so I can remember how I was doing in December 2015, haha!

i guess wrists are pretty important

Nov 19, 2015 by tracy

It looks like it’s time for some more growing – growing of me and my capacity to deal with another injury. One might think I would be a pro at this by now, but I’m not. I haven’t figured out how to accept each new injury without throwing a little fit about it first.

I fell back on October 30 – a sudden face-plant on our front cement when my pants caught on our gate. My arms were full of stuff and I went straight down to the ground like a plank. Somehow at the last millisecond, my right arm shot out and caught me just a hair before the rest of my body hit. I dislocated my shoulder, elbow, and wrist. After getting those joints kind of back in place, I was not in too terrible of shape and I actually went and taught gym for the day. The next day I had a big passing out episode at our monthly baptismal service and when I came to and found a group of men ready to help carry me to my wheelchair and then into my house, I was super concerned about them lifting up under my arm because I knew my shoulder was still super sore and I knew it would dislocate again if they touched it. What I wasn’t too concerned about was my wrist. It was a little sore, but nothing like my shoulder.

A few days later Jeremy put me all back together much better than I had done and I thought my arm was going to be fine. it was sore, but didn’t seem too serious to me.

Unfortunately, the pain is increasing. He has now worked on it three times and not only is it not improving, it seems to be getting worse. Especially with writing. And mousing (the act of using a computer mouse). And doing my hair. And stirring food.

So yesterday we had the gist of this conversation.

Me: You’ve got to work on my neck, my neck really hurts.

J: I will, but we need to check on your wrist. Tell me where the pain is. Tell me what makes it hurt more.

Me: Oh, it is just STUPID. Just a stupid, little injury. I don’t want to spend any more time on my wrist. Let’s work on my neck and ribs and knee today.

J: I will get to those things, but we need to work on your wrist.

Me: Fine. But it is stupid. How can such a small little thing be taking up this much time and be affecting so much of my life? It just needs to stop hurting so we can focus on the more important stuff.

J: Tracy, this is your hand we are talking about. Your right, very dominant, hand. I’d say it’s pretty important.

Me: Well, yes, when you put it like that, I guess my hand is important. But it just seems so stupid that we have to take time away from my neck and ribs and hip and knee to deal with this stupid injury. It’s such a distraction!

J: Tracy, let me tell you about the Stanford Tomato Study. The researchers had two greenhouses with identical tomato plants in each one. Every day they would go in one greenhouse and say, “I hate you. You are bad tomato plants. You won’t grow.” In the other greenhouse they would say, “I love you. You are beautiful plants. You will grow big tomatoes.” The tomatoes did just what they were told. You need to be telling your arm, “You are a good arm. You are hurt and we are going to help you get better. I love you. Thank you for serving me so well. You will heal and get stronger and I will help you.”

Me: Argh. I know that. And the water study and the rice study. All cool beans. But don’t you agree with me that this injury is getting in the way of more important things? I mean just a few weeks ago we were super concerned about brain stem compression and now we are spending all sorts of time on this little ~~stupid~~ wrist injury.

J: It is NOT stupid. This is your hand. A major part of your functioning as a human being is in your hand. It is important and we need to get it better so you can use it again.

Me finally humbled and listening with my heart instead of my head: Hmmm, okay. I will stop calling it stupid and start sending it love and do my best to give it what it needs. What is wrong and what does it need?

J: Well, I think your TFCC or Triangular Fibro-Cartilage Complex is either torn or stretched really badly. You have all the symptoms. Your radius and ulna aren’t tracking together and the TFCC is the cartilage and ligament structure that connect those two bones. You need to not use it. Don’t do things that hurt it like write and mouse and definitely no more stirring pots of soup. You need to brace it if the tape isn’t working as well as it needs to and rest it and send it love. And start juggling with your left hand to build some coordination because it needs to take over.

Me: Okay. Okay. Fine. I will do those things.

I have been trying to work this all out in my heart and mind, to really take his words in and believe them…and while I do, I am still fighting it a bit. It does seem like a silly injury! And it is super exasperating because it is a whole new body part that is injured and the last thing I need is to add another body part to the list of damaged areas…right hip, sacrum, pubic bone, left foot, right foot, right knee, spine, brainstem, vagus nerve, facial nerve, temporomandibular joint, cerebellum, ribs, clavicle, esophagus, stomach, cecum, IT band, hamstrings, left shoulder, right shoulder, and now my right elbow, wrist, and hand. Oh my goodness, what body parts are left? My left hand, hip, and knee? For heaven’s sake, I need to keep the uninjured parts of me UNINJURED. Once something is damaged on me, it doesn’t get back to its preinjured state, it is weakened and much more prone to future injury, so it is really important to not get the first injury.

At the same time, I can see that it IS important and I need to stop thinking of it as stupid. I need to honor this injury and view it as something just as important as my brainstem or hip. It is harder for me to do that though because I can walk just fine with an injured wrist. I can move without wincing. I think something is wrong with my brain’s processing of things because it seems I believe that if I can still move, it must not be very serious – only injuries that completely stop me in my tracks are important. Maybe that is why the first injury did stop me in my tracks and put me in bed? Hmmm. Big things to ponder.

I ordered the new ulnar support brace along with a compression sleeve this morning and am hoping Amazon pulls a miracle and gets them here faster than the estimated delivery dates. In the meantime, I am trying to train myself not to use my right arm for anything…basically impossible, but I am giving it a valiant effort. Tell me, how am I supposed to put my contacts in with my left hand? Or do my hair? Or anything? How am I supposed to not write?

Okay. Deep breaths. Time to learn more lessons and grow.

annes on injuries

Nov 17, 2015 by tracy

My little Annesley has decided she is a speech writer. Keziah is in the middle of writing two speeches that she has to give this week and I guess Annes has caught the bug. Yesterday she presented her Anything Is Possible If You Have Love speech and today she gave us this speech on injuries. This is word for word what she said.

Warning: grab a tissue.

My name is Annesley and I am writing about injuries. You can fall off a skateboard. You can fall off of a tree. My mom has injuries, but even if I am sad she can’t do the stuff most mothers can, I am still happy I have a mother who takes good care of me and loves her family. I love her, too.

Injuries don’t mean it’s the end of your life. Injuries can sometimes help you to realize what is ahead of you in your life. When you have an injury or when you have a family member who has an injury, it doesn’t mean that she or he won’t take care of you. It means that you will be able to fight trials and you will have to get used to those trials because it will happen.

My mom is suffering through a tissue disorder. She has been passing out, but this week she has been doing okay. I like that I have a loving mother who takes good care of me.

My mom has an injury and I love her. She teaches a good homeschool group and she teaches gym. She doesn’t actually do all the tricks, but she has people do it for her. She has Grant and she has my sister, that is technically all.

Injuries might make you feel like you need to stay in your room all the time, but that is not true. You should try to help the people in your family who are injured. You should get used to having a family member who is hurt. Once I had an injury. I did a front flip into the pit and hurt my back. It hurt so much, but then it calmed down. But that is not what happens with my mom. When she gets hurt or passes out, she shakes for about two hours or maybe three. I do not like that, but I try to help her as much as I can.

Even when you get hurt it doesn’t mean you will never, ever be able to walk or look behind you again. It means you are hurt. Just plain hurt. It might seem like everything is aimless, but anything is possible with Jesus Christ. He will heal you.

Oh my, the tears. This precious girl doesn’t even remember me before I was injured. This has been her life. She sometimes wistfully says, “Mom, I wish you could run around the yard with me.” Or, “Mom, tell me what you were like before you were like this. Tell me about how you would ride your bike. Tell me about how you would played baseball and volleyball.” Oh, how I love her. I remember so clearly the feeling I got the first time I looked in her eyes. She told me spirit to spirit, “Mom, it’s gonna be okay.”

And now, it is time to trust her message.

brains should stay where they belong

Oct 21, 2015 by tracy

I have an Upright MRI today to start the process of discovering if the ligaments holding my brain in place have become so lax that my brainstem is being compressed or CSF flow is being blocked. If those things are happening, the answer is most likely brain surgery.

Oh, my goodness, this feels big. And yet I am doing quite well at staying calm and in a place of trust in God.

During the surgery, they open the skull, trim the cerebellar tonsils, cut away part of C1 and possibly C2 to make more room for the drooping brainstem – so it is not being compressed – and make some sort of covering for the dura matter. Then they fuse C1 and C2. It is a big deal with lots of risks and a big recovery period.

At this point, we don’t even know if I have this problem. Several things have pointed us in this direction, but we don’t know. And if I do, we don’t know that we would decide to do surgery or if it is even my best option. Often I have a pretty good attitude about this whole connective tissue thing, but right now part of me is scared and overwhelmed and a huge part of me doesn’t even want to find out if I have it or not. The thought of my brainstem, the thing that is keeping my alive, being compromised, is a lot for me to take in right now and part of me wants to run away from the whole discussion.

I’m a little nervous about starting down this path and would be ever so grateful for your prayers that one, I make it through the testing without an episode and two, that the people doing the testing will be guided by God to get the images we need to see.

celebrate good times, come on!

Jun 29, 2015 by tracy

Can you hear me belting out those words from the old Kool and the Gang song? I have been singing those five words over and over all night.

There are a gazillion things I need to post about and I keep thinking I will get to Swim Camp, Jennifer leaving, my family reunion, my cruise, missionary shopping, Keziah’s play, and so many other things that have happened in the past two months, but tonight, instead of worrying about all that, I want to savor this momentous day.

I GET TO START EXERCISING!

For the first time since December 8, I have been cleared to ride my Elliptigo! Woot! Woot! I am so silly excited! Now I have to be super careful and only ride for a minute or so, but a minute is a huge sixty second improvement from the past 6+ months. And in the interest of full disclosure, I injured my inguinal ligament back on October 10 and was only able to start exercising after that injury on December 2.

This is huge.

It has been almost 9 months since I have been able to do any exercising at all and now it is here. The day I have been praying and yearning for for months.

Tonight I rode.

And it felt magnificent.

Imagine me holding up a lovely glass of sparkling cider.

To muscles!

thankful thursdays: 4/23

Apr 23, 2015 by tracy

The MRI on my knee today went fairly well in that I didn’t freak out about being stuck in a tube and the loud noises didn’t drive me absolutely batty. While I was in there for who knows how long, I closed my eyes and prayed. I knew if I kept my eyes open I would go into freak out mode, (ever since I was held captive in a sleeping bag as a child, I cannot handle being confined, especially when something or someone is on top of me) so I closed them and naturally started talking with God.

I thanked Him again and again for the many blessings of my life. And then I realized it is Thursday and it has been a long time since I posted a Thankful Thursdays post.

My dear Richard. As I lay inside the tube, my heart filled up with deep gratitude for this man who has given his soul to me. He loves me and helps me to be my best self. He serves and sacrifices and keeps us all grounded. I cannot imagine going through this experience without him by my side cheering me on, holding me when I cry, and keeping me laughing with his deadpan sense of humor.
I next thought of my children and how dearly I love them. I am so grateful to be part of their lives and to have the privilege of mothering them. Last week, the orthopedic surgeon I met with was surprised I had four children and I was reminded once again how blessed I am to have even one child, much less four children.
Then I thanked Him for the technology of the MRI machine and asked Him to help me hold still, stay calm, and for the machine to be able to get clear pictures of whatever is wrong.
My mind moved to the many supplements, foods, and treatments I am receiving right now that are helping to calm and heal my nervous system. I am full of gratitude for the vegetables and other foods placed on this earth to fill our bodies with the nutrients we need to thrive.
I thought of my free green drink from Jamba Juice this morning and how the act of kindness lifted my spirits immensely and helped me to see the beautiful things in the world today. I don’t completely know why I was so nervous for the MRI, but I really was and the free-smoothies-for-all event at Jamba this morning helped me get refocused on the good things of this world instead of being weighed down with fear.
I thought of Jeremy, my full-of-awesomeness Manual Therapist. I started seeing him two years ago this week and he is by far the most important care provider I have. He understands connective tissue – how it works and how it affects the body. Even better for me, he totally understands how *my* connective tissue works (or doesn’t work, however you want to look at it!) and how he can help it to work at its best. He has put me back together hundreds of times, listened to me cry, rant and rave, get super grumpy at the difficulty of injury after injury, and given me solid data to help me make wise decisions and make progress. He needs to be cloned so many more people can be blessed by his phenomenal skills and excellent care.
Then I thought about the sunshine and how much joy that radiant light in the sky gives me. I am so grateful for the sun.
Then I thought of the many people who have been part of my journey and I started naming them one by one and praying for them as individuals. Each time I thought of someone, specific words would come to mind to share with Father. At this point, I thought my heart might burst and explode all over the MRI tube because I was overcome with gratitude for all the love that has been poured out on me over the past three years.

And then it was over and as I reentered the world of lights and people and conversations, I was a little shocked to be so suddenly back into the world of busyness and I realized what a blessing it can be to have these forced moments of aloneness during medical tests where I can only think and talk with myself and my Father in Heaven. It is probably true that I need to make more space in my life for uninterrupted meditative time, but with four children and a myriad of other things calling for my attention, my prayers are often short and frequently interrupted, so today I am grateful for the many hours I have spent waiting for appointments, waiting for tests to be run, lying on hard tables waiting to be seen, and yes, even lying in a cold, loud, MRI tube where I was given the chance to talk to God for a good, long chat.

lift up your heart, lift up your voice, rejoice, again, i say rejoice!

Apr 5, 2015 by tracy

It’s Easter night and my heart is full to bursting with joy and peace and love and gratitude. Tears of deep thanksgiving have flowed freely throughout the day as I have thought of my Savior’s sacrifice for me and all the rest of God’s children throughout the world who have ever or will ever live.

When I last wrote I was hurting and pleading for some measure of hope. One of the many conclusions I came to was that this whole connective tissue disorder journey is hard, really, really hard, because there are no actual answers, nothing to measure and have charted out. It’s not like I can do x, y,and z and reasonably expect a, b, or c to happen. There is no schedule of treatments, no way to predict what will happen. At one point in those hopeless days of last week I actually screamed out that I would rather have cancer than Ehlers-Danlos because then I would at least know how big the tumor is or what tests could be done or what probability success rates might be. For the record, I DO NOT WANT CANCER. But going down that rabbit trail of thoughts helped me to understand for a moment why this can sometimes feel so challenging – there is no data, no answers for my information-loving brain to rely on. It can feel like I have no control of my situation. Instead I do a lot of waiting…waiting for ligaments to ever so slowly heal, waiting for my nervous system to calm down, waiting for my stomach to digest food, waiting for inflammation to subside, waiting for bones to stay in place, and worst of all, waiting and wondering what the next injury will be. The not-knowing is driving me crazy.

We are at 17 weeks with this knee injury and it is still incredibly unstable and while it doesn’t hurt very much if I lie around doing nothing, the simplest activities like riding in a car, walking, or even crossing my ankles up the pain level dramatically. And really, all I can do is wait. I can’t have surgery, I can’t take some magic pill and get those collagen fibers to knit together, I can’t do an exercise or eat some special food to make it heal. I can wait and pray and hope and wear my brace and ice it down and use my oils and herbs and drink lots of water and give my body good nutrition. It can feel so incredibly hopeless to simply wait.

And this car accident has really done me in emotionally and physically. The pain in my neck and face and sacrum, oh, my goodness, it is constant and it seems as though we are not making much progress. Every week when I see Jeremy, the pain that he works on is either eliminated or greatly diminished, but a different pain takes its place. All the vertebrae and facial bones are so loose from being jarred in the accident, that shifting some of them back into place seems to move other ones right back out of place. I think we are making progress, but it is soooooo sssssslllllllllooooooooowwwwwwww that sometimes discouragement gets the best of me.

In spite of all of this, I woke up on Friday and my heart leapt with joy. It was Passover and I could tangibly feel the joy of being delivered and redeemed and loved by God himself. My feet had a bounce in their step that hasn’t been there in months and my heart felt light and happy. Kate, my new gymnastics assistant, said she had never seen me like that and Grant, my long-time assistant smiled a huge grin and said “I have, but it has been a long time.” The joy of the Lord is real – I know because it filled my heart and took me out of that place of despair.

We had a lovely Passover dinner on Friday evening with my dear friend, Jennifer, and her four daughters, three of my Worldviews students, our friends, the Cardons, with five of their children, and our friend, Paula, who jumped in at the last minute to fill Jesse’s (Jennifer’s husband) spot. Then on Saturday and Sunday we watched General Conference and my soul was lifted and strengthened even more with the messages of faith, the great love of God, and the hope the atonement and grace of God can give to each of us.

After Conference, I decided I had to completely ignore the vice-grip pain in my facial bones and read the last 32 pages of The Wingfeather Saga on this special Easter Sunday. I have been so incredibly frustrated at my inability to read more than a couple of pages to my family since the car accident before the pain in my face is so excruciating that I have to stop and ice it down, but today I realized it has worked out perfectly. I knew (since I have read the ending of the series twice already) that the last few chapters are a type of Christ’s redeeming sacrifice and resurrection and that the story would touch our children’s hearts and help them to see the atonement with new eyes as they learned the fanged monsters could be changed back into humans devoid of the anger and cruelty of their past selves. I have known for months that these chapters contained beautiful messages of God’s grace, sacrifice, and love that would reach deep into our children’s souls and give them truths they need and I have been hungry to give it to them, but I couldn’t make that happen very quickly because it hurt so much to read aloud. But now, with perfect timing, we have spent our Easter Sunday evening crying our eyes out as our hearts were broken with the sacrifice offered, the healing of the fangs, and the price of blood that had to be paid to bring it about.

Oh, my heart! It is so full with the love of God and love for God. I love Him. I trust Him. I rejoice in Him.

This song by Charles Wesley (the son of my beloved Susannah Annesley who Annesley is named after) captures the feelings of my heart tonight.

Rejoice, the Lord is King!
Your Lord and King adore!
Mortals, give thanks and sing
And triumph evermore.

Lift up your heart! Lift up your voice!
Rejoice, again I say, rejoice!
Lift up your heart! Lift up your voice!
Rejoice, again I say, rejoice!

The Lord, the Savior, reigns,
The God of truth and love.
When he had purged our stains,
He took his seat above.

Lift up your heart! Lift up your voice!
Rejoice, again I say, rejoice!
Lift up your heart! Lift up your voice!
Rejoice, again I say, rejoice!

His kingdom cannot fail;
He rules o’er earth and heav’n.
The keys of death and hell
To Christ the Lord are giv’n.

Lift up your heart! Lift up your voice!
Rejoice, again I say, rejoice!
Lift up your heart! Lift up your voice!
Rejoice, again I say, rejoice!

With Christians around the world, I rejoice that Christ was willing to come to earth and make it possible for each of us to return to our Father and become like Him as we learn to love and serve and sacrifice.

I know more dark days will probably come, but tonight, this glorious Easter night, I want to savor these feelings of peace and joy and gratitude for all He has done.

hope needed

Apr 1, 2015 by tracy

“Jeremy, do you have any hope for me?”

This was the question I should not have asked, should not have pushed him into the corner with.

But I did. And I can’t stop thinking about his answer, both what he said and what he didn’t say. I can’t unsee the look in his eyes.

At first, he tried to joke it away by alluding to the idea that we all have hope in Christ. I said, “Yes, but that is not what I mean!” Then he said, “Faith, hope, and charity, they go together.” I think this was the point I reached up from the table and swung wildly in his direction and ended up whacking him across the chest. When I continued protesting, he said, “Sure, I have great hope that the resurrection is going to be very good for you.” I said, “CLINICALLY. Clinically do you have any hope for me?”

And he got quiet. And didn’t know what to say. And the fear welled up inside of me – because if this man, this expert in muscles and ligaments and fascia, who knows my body and how it is put together better than anyone else, cannot answer this question with a heap full of hope, how on earth can I have any measure of hope?

Finally he answered. “Tracy, you are a very slow healer, but you do heal eventually. We’ve seen it with your feet and your hip and your jaw and your shoulder. So, yes, I have hope. But the thing that is most concerning to me is the number of injuries and that they keep piling up on top of each other. We need time in between the injuries to build muscles and we can’t seem to get it. You keep getting hurt with a new injury before the last one is healed. Your body needs time in a non-injured state so we can get you stronger.”

Which I know. I KNOW THIS INSIDE AND OUT. I have said those very words myself.

So, why is it so painful? Why did it cut me to the core to hear those words come out of his mouth? Why does my situation feel so hopeless as I hear his words play again and again on the stereo of my mind?

I think because it makes it more real.

And his eyes. They were full of painful sadness. He knew I needed a lifeline of hope and this is all he could give me and stay in a place of honesty with himself. I could see he was trying to give me hope…and yet, there just isn’t a whole lot of hope to throw around.

The tears have been welling up inside of me for the past 36 hours, but they won’t come out. One of my skills (and weaknesses) is keeping these heartbreaking kinds of tears buried deep inside me until they burst out in a sobbing, messy, flood. I used to not be able to cry at all, but now I cry at beautiful, happy things quite often and I cry for sad, terrible things in books and movies. But, it is still really, really hard for me to cry for myself.

But I need to cry and scream and sob and let these feelings have a life of their own instead of being trapped inside me. I need to figure out a way to know I am really, really broken and be okay with it instead of trying to convince myself I am not nearly in as bad of shape as it seems.

In a moment of rashness, I decided I would come home tonight and get my beloved bike down from its hanging peg and go out and ride. I thought, “I’ll show them all I am still strong. I am still capable. I can ride and be just fine. Besides, even if I am not fine, what more could happen? What do I care if I get another injury, surely I’ll be no worse physically than I am now, but I will be HAPPY riding my bike and I will know I can do it.”

But I didn’t. Wisdom prevailed over my rebelliousness. Instead I am resting and thinking and making my giant get-ready-for-Passover list, but I still wish I was out on my bike or doing yoga or riding my Elliptigo, or doing SOMETHING to build some muscles instead of sitting on my ever-growing behind waiting for the pain and swelling from the car accident to go away and praying for my knee to heal.

It’s maddening.

And heartbreaking.

And right now, it all feels too big and too hard and too much.

And the tears are starting to flow…

three years of family history

Mar 29, 2015 by tracy

Treasured days.

Sacred days.

This week is the 3rd year anniversary of the epic trip to Utah in the invalid mobile in which Kat and Jessica took me to Utah, insisted on me getting an MRI of my non-functioning hip joint, and we laughed and cried more than I ever thought possible. March 27th was the day Jessica’s dad gave me a priesthood blessing and God invited me on a precious journey of family history work.

A large group of friends and ward members joined us at the temple for a night of sealings. I spent almost all of the evening leaning/laying on a small couch with my knee propped up and beaming with joy. I could not stop smiling as I thought about the past three years of doing family history work and falling in love with my ancestors. We were able to complete 261 ordinances…which is a ton. A ton. My heart was full to bursting as family after family was joined together with priesthood ordinances.

There really are no words to describe the exhilaration and peace that came to me last night.

I am a different person than I was on March 27, 2012 – my body is more fragile, my muscles are weakened, my emotions are closer to the surface, I have less capacity to do what I want to do and more desire to do what God desires for me. I am more somber, less spontaneous, more prone to tears, more prone to grumpiness, less able to think clearly, more able to see clearly, more able to cope with pain, and less willing to want to do so. I feel things. More. The good, the bad, and the ugly feelings pile up inside me and I don’t always know what do with them. Crying is often the answer. While I am not at all sure I like all the changes, I am grateful for this journey. It has been hard, climb Mount Everest kind of hard. It has been beautiful and sweet and powerful and sacred and joyful.

I have not undertaken this journey alone. There has been an army of friends and family cheering me on from the sidelines, taking care of my body, helping me with the ins and outs of daily life, and showering me with love. Piles and piles of love that have been a lifeline to my soul. I have learned how important the love and support of fellow human beings is in getting one through hard stuff.

And then there is Richard. Richard, with his patience, rock-solid stability, faith in God, great ability to forgive, soft-heart, and willingness to do whatever he can to ease my burdens has been a fortress of strength. He has shown me again and again what love is. How love acts. What love looks and feels like. He has taught me what marriage can be. He has shown me what the love of a good man can do for a woman.

There has been a multitude of heavenly help as well. Angels have been by my side, lifting and protecting. I have been guided on my journey by God – He has often planted ideas in my heart, surrounded me with His comforting arms, and given me new perspectacles to see a situation with His eyes.

No, I would not give back these three years if I could. I will keep them and savor them and try to allow God to mold me into what He wants me to be.

Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make any sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of – throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were being made into a decent little cottage: but He is building a palace. He intends to come and live in it Himself.

C.S. Lewis in Mere Christianity

I am still a run-down beach shanty with holes and leaks and all manner of building code violations, but I can feel God working in my life, making me into something else. It is painful and beautiful all at the same time. And today, I am grateful. Grateful that He cares enough about me to transform my life with His love and the things He has asked me to do.

how are those joints doing anyway?

Mar 19, 2015 by tracy

We are fourteen weeks out from the knee injury and while it is not hurting nearly as much as it used to hurt – it hardly ever takes my breath away with pain and I can stand on it for quite a while without it throbbing – it is still super-duper loose and not able to function well without my brace. So, I guess leggings and knee-length yoga skirts will continue to be my wardrobe of choice (force?) for awhile longer.

Unfortunately, the top half of my body is a different story. We are almost seven weeks out from the car accident and oh, my stinkin’ heck, the pain! The agony. The sleepless nights. The headaches, face aches, jaw aches, neck aches, ARRRRRRGGGGH. The rib pain as they shift in and out of place ALL DAY LONG with nearly every breath I take. The sternum torture from the bone that is visibly out place and poking out all skeewampus out of my chest. My back has been taped into military posture for the past two weeks and while it is GREATLY helping, it does not take away all the sternum pain. It also makes it really hard for me to do my hair, use my arms for the simplest of things, or get myself undressed. My sacrum feels like a hot ball of fire that is approximately the size and weight of an 8 lb. therapy ball. I cannot believe the amount of pain this teensy weensy accident has caused.

And the passing out/shaking/tachycardia episodes have returned with a vengeance.

Seriously. This is enough.

We are basically ignoring my knee, hip, and feet issues because there is not time or energy to even attend to them right now. All my emotional stamina can handle focusing on is getting better from this car accident.

I have given in to the world of modern medicine and am taking a muscle relaxant at night and Ibuprofen throughout the day to reduce the global inflammation this accident has caused. After not taking over-the-counter or prescription drugs for twenty years, this is a big deal. It shows just how willing I am to do what it takes.

Today I tried out a tens unit…and all the angels sang! I must get me one of these miniature miracle workers. The muscles in my back felt relaxed and warm and gushy and I nearly shouted with relief!

Speaking of angels, have you seen this painting? It is my favorite thing ever and thanks to my friend, Jodie, it will soon be hanging in my room, infusing me with hope and faith every day.

helping them find their way

Mar 10, 2015 by tracy

Living with a genetic disorder is hard. I don’t care what the condition is or how life-altering it is, it is hard to face the reality that one’s genes are messed up.

It is even more difficult to realize and then go on living with the reality staring me in the face that I have passed this on to my children.

On Sunday we had a family council and explained hypermobility and what it looks like and what it means. Our children have always known they were more flexible than their peers and that I was super flexible and, of course, they have lived through the past three years of my nearly constant injuries, but amazingly enough, they didn’t really know they were at risk for these same type of injuries. We tried to present the information in a “Let’s all work together and get super strong and take care of our bodies” sort of way, but that message only goes so far with children who have their brains turned on to evaluate the message and can see right through the rah-rahs to the grim prognosis. Responses varied to our rousing cry of “We are going to start an exercise plan to build super strong muscles! When people are flexible like we are, they need more muscles to hold them together. Does anyone have any suggestions to build our muscles?”

Fisher: Are you saying my hips are going to break like moms? (For the record, my hips are NOT broken – the labrum on the right side is torn.)

Blythe: But we aren’t as bad as you are, right? Right? We won’t end up like you, right?

Keziah: I AM NOT EXERCISING WITH THE FAMILY!

Annesley: When can we start? Do I get to do DDP Yoga with Papa? I am so strong and now I will be EVEN stronger!

Fisher: Am I going to start passing out like mom?

Fisher: Why did this happen?

Blythe: Just because we are so flexible, that doesn’t mean we have to end up like you, right? You were more flexible than us, weren’t you?

Keziah: I am FINE.

Annesley: I will get super strong. Look at my backbend, look, look, I can almost touch my feet with my hands. LOOK!

Fisher: Are you saying my ligaments are like mom’s?

We tried to be reassuring. We tried to calm fears and give hope and help them understand, but they couldn’t. All they could see was the string of injuries their mother has become and see themselves on the same path. Some of them tried to reject the whole thing, insisting they are “fine,” some of them got scared, some of them tried to solve it logically, some of them just aren’t willing to look it square in the face yet.

I understand all of that, having felt all those same emotions myself. It will take some time for them to figure out how to deal with it. It is going to take lots of encouraging words from us as parents and lots of real, deep, heart-to-heart listening.

At the same time, we do not want it to be a focus of their lives – we want them to run and play and laugh and live without a constant worry hanging over their heads that they will end up like me.

And that is what I don’t know how to do. They see me everyday. They see me shaking, passing out, crying in pain, taking piles of supplements. They see me unable to lift my arms up to drive, unable to carry things, sitting in my special chair, and going to endless physical therapy appointments. They see it up close and personal. They have helped dress me, cleaned up my vomit, pushed me in wheelchairs, called out for someone to help me, taken my heartrate and so much more. We have tried to protect them and I often put on my very bravest face when they are around, but our talk on Sunday took off the last of their blinders and they started to really internalize that this is not just about me. It is about them and their children and their children’s children. It is real. It is not something we can just wish away or grow out of.

How do I help them balance out the plain facts in front of them with a huge dose of hope and optimism and free spiritedness? How do I help them build muscles without it being done in a spirit of fear of what could happen if they don’t? How do I lead them in developing habits that will lead to a lifetime of strengthening activities when I cannot participate myself? How do I look in their eyes and see their fear without it breaking my heart?

It is time for courage.

Against all odds, God gave me these precious children and He expects me to teach them how to deal with the life they have been given, not the one they wish they had. None of us wishes to have something wrong with our bodies, but the reality is something IS wrong and it is time to learn how to thrive.

On top of the exercising they are doing, I think they need a host of stories planted deep in their souls of people doing hard things. I want them to know they are part of a plucky family so we are going to be sharing more family history stories. They need to hear and hold in their hearts more stories of bravery, sacrifice, service, compassion, duty, and love. I plan to fill them up with stories of American patriots, fellow Christians serving God with full-purpose of heart, and stalwart men and women from all over the globe. They need to know that even though their collagen may be made of weak materials, they are made of tough stuff that can and will do hard things.

I have learned that while the physical challenges of this disorder are great, the emotional, spiritual, and mental battles are far more critical to my well-being. If I can stay in a place of mental toughness, open-heartedness, gratitude, commitment, and peace, I can function well, regardless of what state my body is in at the moment. When I give in to hopelessness, fear, anger, self-pity, or try to close myself off from the world, that is when I am really in trouble.

So, building their muscles is essential. Absolutely. But far more important is building their spirits to know who they are, what they are made of, and the nature of their God.

Be strong and of a good courage; be not afraid, neither be thou dismayed: for The Lord thy God is with thee whithersoever thou goest. – Joshua 1:9

Fear not: for they that be with us are more than they that be with them. – 2 Kings 6:16

Therefore now let your hands be strengthened, and be ye valiant. – 2 Samuel 2:7

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. – 2 Timothy 1:7

And they were all young men and they were exceedingly valiant for courage and also for strength and activity; but behold, this was not all – they were men who were true at all times in whatsover thing they were entrusted. Yea, they were men of truth and sobernes, for they had been taught to keep the commandments of God and to walk uprightly before Him. – Alma 53:20

They need to know that when hard days (and weeks and months and years) come, for we all have them in various ways, they can and must turn to the Lord and He will strengthen them. He will infuse them with power to keep trying and courage to choose to do so. He will pour down healing that cannot be explained by medicine and He will wrap them in His arms of love during the pain. He will love them with a love that is pure and precious and sanctifying.

And as this knowledge grows within them, they will be able to face EDS and all the other challenges that this life will give them.

I guess that is my answer…rely on The Lord, courageously fight my battles, share stories with my children of brave men and women and children doing hard things, and trust that they will turn to Him.

Small marching orders, eh?

let’s build muscles…not mine yet

Mar 5, 2015 by tracy

I have known I was hypermobile my whole life…not in a diagnosable sort of way, but in a “look, how cool I am, I can bend in half” sort of way. I knew my ankles rolled really easily and were sprained more often than not. I knew that to compete in gymnastics or play volleyball or basketball, I needed my ankles to be taped. I knew when I had shoulder surgery 20 years ago that the surgeon had to cut off 90% of the ligament before it would hold my shoulder joint in place properly. I knew he said I would never be able to have children because of my unstable, hypermobile pelvis. I knew he diagnosed me with Mixed Connective Tissue Disease with Ligamentous Laxity. But I didn’t really know what a big challenge hypermobility was until the past three years.

And maybe I still don’t.

Even though I am living this experience of constant sprains, tears, broken bones, nervous system dysfunction, and pain, I still don’t really know what is coming or what this really means for me or my hypermobile children.

A few days ago, I had to drive myself to PT because Blythe was at work and I didn’t feel like I should ~~bother~~ ask any of my friends to take me, so I decided to take Fisher with me and have a little date with him (big mistake…driving still hurts a whole bunch…but it was lovely to spend some on-on-one time with my boy). While we were there, I asked Fisher to sit in butterfly position so Jeremy could see how flexible his hip joints are. Then Jeremy asked him to W-sit and upon seeing Fisher’s legs flop flat on the floor without pushing or straining in any way, he agreed with me that he is extremely hypermobile as well. I already knew that – I have eyeballs and can see my children walking with their toes folded underneath their feet and their hands and feet touching during backbends – but it was interesting to hear it pronounced from a medical professional.

While I know that my super-strong-gymnast muscles were my strongest defense in preventing injuries and the only reason my body was able to carry and birth our four beautiful babies and make it to 37 years of age before I started falling apart, I didn’t really know deep down in my little toes ENOUGH to do something about it. I have certainly thought about it a lot and hoped my children were getting enough exercise at gymnastics and riding bikes and running around in the yard and going to Irish Dance classes, but I didn’t think about it enough to make a plan to build their muscles.

But now I know and we are making a plan to give them the best shot at holding together for long past 37.

Jeremy said “Tracy, from what I have seen of your children, they all have it and they all need muscles. Lots of muscles. Way more muscles than they currently have. You need to start a family exercise regimen to build their cores with lots of stability exercises, muscle control, and muscle building.”

His words have been playing in my mind for the past few days. I can’t stop thinking about them and what we need to do. When I think about how many sit-ups and push-ups I did as a gymnast and how much good those thousands of exercises did for me, my eyes well up with tears. I am positive that the crunches, laps, sports, running, biking, and hiking that I used to participate in are what gave me the last twenty fairly injury-free years of my life. My children need at least as much muscle strength as I had so they have a good shot at life as well.

Now that I know, really know, deep down in my toes, I am brainstorming ways to build their muscles on a daily basis. Today Kez finished her two trimesters of seminary for the year, so our daily schedule is about to change again and I am working on a great plan to use that early morning time to build muscles.

We will be utilizing our awesome Elliptigo and our DDP Yoga videos as well as my balance pads and resistance bands. I am still on a no-exercise protocol until the inflammation from the car accident calms down some more (How on earth has it not calmed down????? I have even given in and am taking 2400 mg. of ibuprofen every day!) so I cannot exercise with them, but I am hoping Richard will be able to or they will be able to do it with one of the big girls directing them.

Jeremy strong recommended martial arts, so I am thinking about that, and also considering a weekly swimming trip, trying to figure out family bike rides (again, I can’t ride), and trying some exercise videos from the library.

I don’t know why it has taken me three years to think about this enough to actually do something about it, but it has. If you have some kid-friendly muscle-building tips, send them my way!

three years

Feb 20, 2015 by tracy

I remember the snow lightly falling on my nose as I warmed up my body with lunge walks, butt kicks, and grapevines. I remember feeling strong, capable of doing anything I set my mind to, and full of excitement for a summer full of races with my girlie. I remember running on Friday, the 17th, down at the greenbelt, with the sun shining – I ran further and faster and could actually see myself as a runner instead of just a mother of a runner.

I remember the take-my-breath-away pain deep in my groin as I brought my right leg forward. I remember feeling like an at-the-hip amputation would be better than the pain I was feeling. I remember hobbling back to the Suburban bringing my leg forward with my hands. I remember Richard carrying me to bed that night when I couldn’t put any weight on my leg at all.

I remember the weeks spent in bed covered in ice packs and the neverending pain of both body and spirit. My children fighting, crying, whining, unable to cope with mom spending day after day in bed. I remember sobbing myself to sleep many a night and being completely frustrated at my body, my situation, and my children.

I remember the first Priesthood blessing and how the heavens opened and poured love, light, and power into every fiber of my being. I remember the beginning of my family history journey and how insatiable my desire was to find each member of my family.

I remember the army of friends who brought in meals, cleaned my house, drove my children to activities, sent me cheer-up notes, prayed for me, and surrounded me with love.

I remember Kat, Jenn, and Jess taking care of me – gently helping me see reality, laughing, driving me to appointments with doctors, holding my hand as needles were inserted, holding my whole body as I sobbed all the pain and frustration out into a pile of snot. Kat and Jess went the extra mile and cleaned up my very stinky, post-MRA pee.

I remember the patient, calm, nurturing of my husband. I remember spending my days alone in my bed feeling completely broken and like a burden and failure. And then he would come home and give me that look. And my heart would fill up with a little bit of hope and a pile of love for this man who loves me more than life itself.

So many memories of those first few months, I want to remember forever – those were hard, hard days – too precious to forget.

Now it has been three years since that first day of pain and injury. Three years full of hundreds of little injuries and lots of big injuries. Three years full of more pain than I can describe. Three years of our children learning to be self-sufficient, run a household, take care of each other, and take care of me. Three years of learning to rely on God and submit to His will for my life. Three years full of the miracles of God, prayers answered, blessings poured out upon us. As hard as it has been, I am grateful for this experience – the pain, despair, and agony of soul AND the love, service, and joy. It has all been a powerful blessing for our whole family and many others as well.

Last night I showed this movie to Richard and with tears in my eyes, thanked him for all the work he does both behind the scenes and in full view that allows me to stil have a somewhat independent life. Tonight we are celebrating by watching Unbroken…for that is what we are, unbroken, full of faith, and determined to make it through.

I sent this thank you out to hundreds of people this morning. I share it here so that all my blog readers can know how grateful I am for you as well. Thank you for walking this journey with me and sending me so many words of encouragement. They have lifted me more than you know.

Dear Loved Ones,

Today, February 20, marks the 3-year anniversary of my original hip injury. I could spend today mourning all the freedom and body functions I have lost, but instead I want to celebrate and focus on the many blessings that have come from that injury. I want to pay tribute and give thanks to each of you – the many family members and friends whose support has meant so much during the last three years. We are surrounded by an army of goodness!

As our family has been called upon to make significant changes to our life, we have been held in God’s keeping. We could not have made it through these past 36 months without you. You have truly been God’s hands and you have spread His light.

Some of you have given generously of your time. Some of you have driven me to appointments or taken me shopping. Some of you have given us money or paid for therapy, equipment, and medical appointments. Some have given food, cleaning, and other acts of service. Some of you have held my hands through painful treatments. Some of you have held me during seizures. Some of you have prayed for me and with me. Some of you have given smiles and hugs. Some of you have written notes full of faith and encouragement. Some of you have cried with me. Some of you have given Priesthood blessings. Some of you have helped me with my family history work. Some of you have listened. Some of you have carried my zero-gravity chair all over Timbuktu. Some of you have taken care of our children. Some of you have repaired our home. Some of you have been the support team for Richard and our children. Some of you have worked in our yard. Some of you have put my body back together again. Some of you have picked me up off the floor and carried me. All of you have lifted burdens. All of you have loved.

Today our hearts are full of gratitude to you and for you. Thank you for walking this journey with us. Your service has made all the difference.

In the past three years, I have had a labral tear in my hip, a broken left foot, a dislocated right foot, dislocated ribs, dislocated jaw, dislocated shoulders, nearly constant pubic bone issues, stretched MCL, torn LCL, torn meniscus, hundreds of seizures, thousands of passing out episodes, and many more injuries I am forgetting. I have been diagnosed with Ehlers-Danlos syndrome, a connective tissue disorder that means my collagen is defective and my ligaments do not hold me together very well. As a result of my injuries and the subsequent damage to my nervous system, I have also developed POTS, which is Postural Orthostatic Tachycardia Syndrome, and Dysautonomia, which are just fancy ways of saying my body has a hard time running the automatic functions of my body, such as heart rate, blood pressure, digestion, temperature, and blood flow.

Two weeks ago I was in a minor car accident and we have yet to see the full results of these injuries as we are still in the figuring-things-out-stage – all I really know is my face, neck, shoulders, ribs, spine, and pelvis are in a world of hurt.

I have absolute faith in God and know He can heal me. While a complete blessing of healing has not come, many dear and precious blessings have been poured out upon me. At the same time, He is teaching me how to live in this oft-injured state. I never know how my body will function from day to day and am learning to be grateful for the really small things in life.

There are not sufficient words to express my gratitude for your kindness and generosity to me. Thank you for everything you have done and will do in the future.

Your presence in my life and your generous service have filled this difficult journey with light, love, laughter, and most of all, faith, hope, and peace.

I love you,
Tracy

Richard, Blythe, Keziah, Fisher, and Annesley also say THANK YOU!

up to somethings

Feb 18, 2015 by tracy

Oh my, the time gets away from me and before I know it, a whole week (or more!) has gone by without me posting.

Here is what I am up to:

Paperwork and medical appointments for my oldest who is getting ready to serve a mission for our church. The process is pretty easy and quick, but, boy howdy, it is a lot of hard decisions and work for those of us who don’t have a family doctor and easy medical history. We are facing some pretty big decisions regarding medications and so far, I still don’t know what to do. These are the times I *almost* wish we could just be normal people who go along with the masses and just do what everyone else does, but since there are all sorts of immune system issues, allergies, and a firm belief in whole foods, herbs, natural medicines and alternative treatments, I simply cannot go along with masses.
Trying my darndest to heal from this car accident. It was SUCH a small accident and yet, my body is really struggling. The pain, headaches, numbness, inflammation, and exhaustion are quite the humdinger. I actually went in and had x-rays taken last week and they showed my spine all wonkified. On the advice of the doctor I saw and Jeremy, I am giving in and taking some prescriptions to help the muscles and the generalized inflammation in my body calm down.
Dealing with the car accident phone calls and paperwork. ARGH. It really isn’t a big deal. It is just a deal and one I don’t have time or energy for.
Got my bangs cut when my sister met us in Utah during Blythe’s dentist appointment on Monday. We did a quick bang fixeroo in the parking lot and were laughing so hard at the looks people were giving us that my bladder had a little incident. They were almost to my upper lip…after being cut above my eyebrows just 2 1/2 months ago. I think all the collagen and other supplements I am taking are making my hair grow a wee bit too fast.
Researching therapy pools and brainstorming HOW ON EARTH I could ever afford one and where it could go in my house so I could work my muscles everyday without fear of injury, time and expense of going to a pool that is a 20ish miles away, and having to find someone to take me since many days it would not be safe for me to go to a pool alone. It seems like a huge impossibility, but since I know it would be fabulous for my body, I am going to keep researching, thinking, and praying.
Fisher and I have started a new geography adventure with Holling C. Holling books. We are starting with Paddle-to-the-Sea and loving it. It traces the journey of a little canoe from Canada, down through the Great Lakes, and out to the Atlantic Ocean. We have some big maps from Beautiful Feet and are using their curriculum guide to give us a bit of structure on our journey.
Annesley and I are almost done with Little House in the Big Woods. I think we will just continue on with the series until she grows tired of it.
I am still teaching Worldviews to my five stellar youth and am also teaching an adult class on How To Talk So Kids Will Listen and while I love both of them, I have to admit, this car accident has really impacted my effectiveness as a teacher. I simply cannot move, talk, and prepare the way I would like to. They are going well, but my heart wishes for the situation to be different and I could be standing up and be the dynamic teacher I normally am. Teaching from a reclining position is pretty tough…and boring.
It is Ward Conference season which is an LDS term meaning a special Sunday meeting is held with each ward (generally small geographical area) in a stake (usually 7-10 wards) where instruction and training is given by stake leaders. Since I serve with the Stake Primary Presidency, I attend each of those ward conferences. This means lots and lots of meetings. Almost every Sunday, I am attending church services in other congregations than my own and then helping that ward’s Primary with any questions or concerns they might have. It is a wonderful opportunity to serve, be blessed by the many relationships I get to be a part of, and the Sunday inspiration I receive is beautiful. I love it. I also miss my own ward. Theoretically, I could attend my own ward on the weeks my other meetings are at a different time than my ward, but my body cannot barely handle the three to five hours of meetings it already has, there is no way it could handle another three hours on top of that.
I keep setting goals of things to get done each day and for the most part, they aren’t getting done. I have gobs of paperwork to get done for my classes and my church calling, but my body hurts to much to do any of it for very long. Cleaning or cooking are not happening at all and my children are ready to rebel at how much they are doing and how little I am doing. I am focusing on the basics of our family life and homeschool: phonics, math, stories, snuggles, scriptures, art, outside play time for the kids, and lots of art projects while listening to audio books. Blythe is doing almost all my driving and running around children along with lots of errand running. All the rest is going to have to wait till body recovers from this accident.

I don’t know what the typical recovery is from whiplash, but it is looking like mine will not fit that norm since I am still in so much pain. In the meantime, my knee has taken a complete back seat to my upper body. Jeremy hasn’t even been able to work on it my last few appointments, so I don’t know how it is doing. Tonight it is more sore than it has been recently, but I am hoping that with some ice and anti-inflammatories, it will feel better tomorrow. I have to keep reminding myself that we are hastening the healing…not doing nothing as I lie around with my ice pack.

The three year anniversary of my hip injury is coming up on Friday. Yesterday marks the day of my last good run. I am thinking about how to celebrate…it will either be a day of mourning or celebration and my spirits cannot handle the mourning, so we need to find a way to celebrate somehow!

fatigued

Feb 10, 2015 by tracy

Oh my heck, I am tired. So incredibly tired. I have been exhausted for days on end. Annesley and Richard could not wake me up for scriptures this morning. When I finally opened my eyes around 7:30, she said I looked like I was dead when she tried to wake me up. Richard tried to rouse me for some snuggle time and gave up after my dead fish appearance showed no signs of changing.

I finally pulled myself together long enough to take a bath and tried to soak the soreness out of my neck, back, and shoulders, but instead my heart rate shot up to 130 and I collapsed after I got out.

Now it is an hour later and I finally feel strong enough and alert enough to start learning time with my little ones. Just for kicks, I looked up symptoms of whiplash and to my surprise (but not shock, since I am living it) fatigue is one of the symptoms. I should say it is, my goodness, I don’t think I remember ever feeling so completely and totally exhausted before (though I’m sure I am forgetting all those new baby years when exhaustion is just par for the course).

Time to get a move on it, Trace, there are two little ones ready…today we start Paddle To The Sea!.

that knee is starting to heal!

Feb 5, 2015 by tracy

I totally forgot to post my good news from this week! The LCL in my knee is tightening up! The sideways stability is increasing and the pain is decreasing and my walking is improving.

We passed the eight week mark on Sunday and if prior injuries are an indicator, I have another four to eight weeks of healing to go. My outrageously expensive brace is helping a lot and I continue to ice it when it is sore, but in the past 11 days I have only needed to ice it once. Isn’t that exciting!

Not to dampen the good news, but just to document…my jaw hurts like heck and is clicking when I open my mouth very far. The bones around my eyes are super tender. I can barely move my head to the right, but to the left is pretty good. The vertebrae in my spine feel compressed and my sacrum, oh, my goodness, the sacrum is hot to the touch and feels like screws are turning in it. My right foot, which must have been hurt somehow in the accident, is pretty sore and unstable. Jeremy taped it all up on Monday, which is helping, but the bones feel like they shifted out of place yesterday with all the walking at iFamily.

I took Blythe in yesterday and she has whiplash as well. Not as bad as mine, but it is causing her neck and head pain.

Time to cover myself in some menthol-y oils and start learning time with the kiddos.

anything that can go wrong…

Feb 3, 2015 by tracy

You guys don’t want to hear this. I don’t want to type it. But I can see it is going to impact my life for the next little while so I better record it for my posterity’s sake.

Saturday I finally felt good enough to go to a homeschool conference (the one I was supposed to speak at, but cancelled because of my knee injury) and didn’t pass out or even have many episodes of tachycardia. It was amazing to feel so good! Sheri and I had a lovely time and I left feeling renewed and full of ideas to implement into our routine. As we sat at the stop sign ready to leave the parking lot of the conference, we were rear-ended. YES, you read that right, REAR-ENDED.

In our new-to-us car that we got around New Year’s after Richard’s car finally bit the dust completely.

The car is okay.

I am not.

My facial bones ache.

My jaw aches.

My neck aches.

My back aches.

My ribs ache.

My hip aches.

My foot aches.

My head, which never gets headaches, aches.

Ice and therapy and more ice and sleep and more ice have been the tasks for the past several days.

I am not complaining to God, but I am asking Mr. Murphy, “Isn’t it enough that my LCL and meniscus are currently torn? Isn’t it enough that I pass out regularly? Isn’t it enough that my pelvis is so incredibly unstable that someone bumping into me can dislocate my pubic bone and femur? Isn’t it enough? Really?”

a new direction

Jan 26, 2015 by tracy

We are at the seven week mark of this vagal nerve and knee injury and have been working hard to discover what direction we should go with my treatment and I think we have found some answers.

A few weeks ago a friend of mine came over and worked on the foot zoning points of the vagal nerve. After that appointment, I stopped throwing up and my burping decreased significantly. She taught Richard what to do so he could work on my feet each night and as he has done so, the burping has continued to improve. She has come several times since and the tachycardia and digestion issues are improving as well.

Last week I was able to see a doctor at a specialty medical clinic for four days. Jen accompanied me to take care of me and we had an amazing and eye-opening experience. We had a ton of fun and learned a lot about my body’s needs. I was really, really, REALLY hoping to get stem cell injections into the LCL and meniscus to jumpstart their healing, but there is Procaine in the solution and he said my nervous system could not handle the injections without it, so we created a different treatment plan.

This morning I started an oral stem cell regimen that I will stay on for 3 months and then we will reassess the state of my body. The doctor gave me a very involved nutrition plan, supplements, medications, and stem cells, all of which is going to be a full-time job to get inside me on a daily basis. Yesterday I was able to program my phone with the 17 different reminders of food I need to be eating or medicines I need to be taking throughout the day and with three reminders already done for today, we are off to a stellar start.

The nutrition plan is aimed at two things: one, maintaining and hopefully increasing the amount of lean body tissue I have and two, giving my stomach all the help it needs to be able to digest food so my intestines can absorb nutrients. One of the new things we are implementing is drinking 1 quart of water with 1 TB. of baking soda and the juice of 3 limes at specific times of the day in relationship to the food I am eating. This is supposed to change my pH and help my food digest easier. Let me just say it is pretty disgusting. I did get 1/2 quart down me yesterday and today will be the full quart.

I also have to eat 6 tinsy meals a day that are protein heavy with lots of veggies as well. I can eat some very limited carbs, but not at the same time as I eat proteins as that makes both the proteins and the carbs harder to digest.

Interspersed with all this food are supplements, medicines, and stem cells and at first it was mind-boggling to me how to make it all work, but I think I have created a workable schedule and with the help of my phone beeping at me to remind to take this supplement or eat that food, I think it is doable.

Today my heart is full of gratitude for the opportunity I have been blessed with to start on this new treatment plan. The Spirit has been with me this past week and testified to me that this is the right course of treatment at the time. So as a family, we are going to pull together and give it our best effort.

Now on to reminder four.

a little peek into my heart

Jan 17, 2015 by tracy

The depths of despair have not hit me. I am okay emotionally and spiritually and am in a pretty good place of both gratitude for this experience and acceptance of what is currently my life.

But I am sad for the things I am missing and today my heart is hurting a bit. There have been a lot of things missed over the course of these injuries. We have just passed the two year mark of the shaking/passing out episodes and in February it will be three years since the initial hip injury. Even though it feels like an entire lifetime ago, I still remember so clearly lying on the floor of Jessica’s parents home and trying to convince everyone that even though I hadn’t walked for 5 weeks, I was FINE and did not need an MRI and it would get better with time. Well, my friends insisted on me seeing an orthopedic surgeon who subsequently found I have severe hypermobility in all my joints and arranged for an MRI that found the labral tear in my hip socket.

And while my labral tear was helped greatly by the Prolozone injections, the havoc played on my body from that injury, bedrest, and muscle weakening has been challenging. It seems every few months there is a new orthopedic injury that takes about sixteen to twenty weeks to overcome and during those weeks of recovery time the rest of my body gets weaker and more prone to injury. The current injuries we are dealing with are a torn LCL and torn meniscus, sensitive vagus nerve, impinged left shoulder, and severe pubic bone instability causing quite a bit of pain throughout my pelvis.

Each of these injuries cause me to miss out on things that are really important to me. Like chasing my children, going on walks, riding my beloved bike, hiking in the woods, having the freedom to go where I want to go, teaching gymnastics, and holding my Annesley in my arms. This month I was scheduled to speak at a huge homeschool conference down in Utah about two of my favorite subjects, teaching math in fun ways and How To Talk To Kids So Kids Will Listen and Listen So Kids Will Talk. I was over the moon excited about this opportunity to share my passions with hundreds of people. A few weeks ago, I decided I simply cannot present. My knee will not allow me to stand for more than about five minutes and my vagus nerve is acting so unpredictably that I was concerned that even if I taught from my wheelchair there was a good chance I would pass out, throw up, or have an episode of tachycardia right in the middle of my presentations.

So I bowed out. And I am super sad. Sad for the growth it would give me as a speaker. Sad for the missed connections with people. Sad for the missed influence I could have on other’s lives. Sad for the impact they could have on my life.

One of the hardest things for me is the limitations I have in connecting with others. Connection with people is something I live for – it energizes me and brings happiness to my soul to talk with other people and learn from them, laugh with them, and love them. And I miss that. I still get it, but it is so much less than it used to be. Many times I do not have the ability to go and talk to someone across the room. I have to wait until a person comes to me to visit. Often, the person I want to give a hug to or thank or compliment or share something funny with does not come. Sometimes I ask Richard to go get that person and bring him or her to me, but it often feels a bit too awkward…because that fluid, light, happy conversation that happens naturally when you are nearby and start talking with a person has now been turned into a formal event requiring an invitation to come and speak with me.

The other uncomfortable aspect with this whole connection thing is that the topic of conversation with almost everyone in my life is my body. I do need to talk about it and share, but often I want to shout, “I am not my body! I have a mind and a heart and interests that have nothing to do with bones and cartilage and ligaments. Let’s talk about fabric or books or ideas or something else besides my body.” At the same time, it is really important to me for people to understand what is going on in my body. I want people to know so they can be praying for me or know when I need extra help or know to rejoice with me about some milestone being reached, but I don’t really want to talk about it. I just want them to magically know so I feel we are in the same place of understanding about my body’s needs and then we can laugh and have fun and talk about something else.

A bit of a high expectation there, eh? Yes, I know. I want to type out my physical and emotional and spiritual journey on here and get it all out. And then I don’t really want to talk about it. Having to rehash it over and over and over is exhausting and a tad depressing. In addition, when there isn’t good news to share, it is really hard for me to want to share anything at all…the last thing I want to be is the depressing, negative nincompoop everyone avoids. Can’t all the people in my life just read my blog if they want to know what is going on??????? I know. I know. It isn’t that interesting and who has time to read my rantings anyway? But, oh, how it would help me when I have to answer all the questions from the wonderful people who care about me.

Anyway, just read this as a Saturday morning brain dump of zillions of thoughts swirling around inside me as I lie here in bed on a cold, snowy day thinking about the conference I won’t get to speak at, the sledding I can’t do with my children today, the grocery shopping I won’t get to do (and yes, I know not doing the shopping sounds lovely when you have to do it, but not being able to select the food for my family is a challenge all its own), the inability to just hop in my car and go visit a loved one, and the many other things I am no longer able to do. Life could be a zillion times worse and I am both grateful for this powerful learning experience and overwhelmingly grateful for the bounteous blessings that are and have been poured out upon our family to help us get through it. I know all of this and I really, truly still am in a place of gratitude. But I am also sad that one of the prices I have to pay for this dear and tender experience is one of missing out on other dear and tender experiences.

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I GET TO START EXERCISING!

To muscles!

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