blog
gearing up
Ready, set, GO!
It’s play week which means piles of FUN!
It also means meals on the run, late nights, little sleep, long days, concessions out the wazoo (I have been the concession manager for almost all of my children’s plays for the past six years), a messy house, loads of laughter, and everything in between.
Miss Keziah is Puck in A Midsummer Night’s Dream and though I haven’t seen a single rehearsal yet, those who have tell me she pulls Puck off splendidly. Her costume, made by my dear Jennifer, is fabulous and her moss make-up is full of win.
In addition to all the play busyness, Blythe’s mission call should come this week, it is my birthday – WAHOO!, Fisher has a Space Derby for Scouts, and we have several family members coming into town to watch the play.
A wee bit of craziness is before us, so I better get some sleep tonight while I can.
thankful thursdays: 4/23
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.
savoring
Blythe is playing the piano with passion and power, Keziah is throwing sticks to Charley in the yard, and I am reclining on my chaise savoring these moments. My girls are growing up so quickly and I feel these moments of pure joy are coming to an end. Somedays I honestly don’t know if I can bear it.
Have I written about Blythe’s mission? I don’t even know if I have mentioned it on here since I have been so full of whining health related news lately. Well, if I haven’t, I am hereby giving notice…my girlie is going on a mission to serve the Lord. Her application papers have been submitted and we are waiting to find out where she is called to serve. We were told we could know as early as next week, but I am guessing it will be the week after. We have been busy for the past several months getting all the paperwork filled out and necessary medical and dental appointments taken care of. Soon it will be time to assemble her wardrobe, purchase luggage, put herbs/oils/supplements/first aid supplies into a kit, and a gazillion other things I don’t even know about yet.
These are exciting days for our family and we are entering a new phase of life. As I contemplate our oldest leaving home, I find myself speaking more tenderly to all of my children and trying to draw them close to my heart.
Last week Blythe attended her last Homeschool Prom while it was Keziah’s first. This is a non-date formal where hundreds of youth from all over our area spend the night dancing and having a blast. It is a completely different experience than a high school prom and is a favorite event of both the homeschoolers and many of their public schooled friends who say the homeschool dances are the best dances they have ever attended.
These two sisters had so much fun together. I didn’t see them till they came home, super happy and beautiful, and my heart filled right up with joy.
Keziah spent the day doing hair and makeup with a big group of friends.
My guess is the house needed to be fumigated and sanitized from all the hairspray, makeup, and estrogen spewed out during the day!
I am so grateful for this time of my life where my girls are happy and healthy and doing good things. We work and work and work as young mothers to raise our children to be competent, capable, contributing members of our families, and then POOF they are and they move on to bless the world. This is what I want, absolutely, but I want to lengthen these days, to stretch them out so I can enjoy them longer.
starting anew
The buds are coming out, the grass is greening up, the tulips are sprouting, and a tiny kitten was born this morning – spring is here!
The breath of fresh air spring whispers to my soul is full of hope and healing. It signals the beginning of a new growing season, shows me that new life is possible. As I ponder the lessons of Passover and Easter, see life springing up all around me, and let the sun soak into my soul, hope is growing.
I have been quite focused on a healing regimen the past three months and while it has been hard and sometimes quite discouraging, it is working. I have just returned home from a second trip to my doctor where he evaluated my progress of the past three months and made a plan for the next three months. My nervous system has calmed down significantly – I have only had three passing out/shaking episodes since he saw me in January – and my body is ready for more treatments. He has me taking a wide variety of supplements to strengthen my nervous, immune, and connective tissue systems and on a clean nutrition plan to give my body the best shot at digesting and absorbing the food I eat.
This regimen is a lot of work. It takes all the dedication and focus I have…really, more than I have as my whole family is contributing to helping me succeed. They prepare my foods for me, help me remember my pills, and encourage me to keep on keeping on when I just want to throw in the towel.
This last week of treatments was good and hard and painful and wonderful all at the same time. I was able to get one injection of my own plasma into my knee and one injection of stem cells into my bottom…both without anesthetic of any kind. Gotta say, that hurt…a whole heaping lot. My butt is still sore, but it is easing up. My knee on the other hand hurts.
Today I start the next phase of our treatment plan and pray that my body is infused with new life just like the plants on this beautiful spring day.
Quote for me to ponder..
Sometimes we give up what we want most for what we want in the moment.
What I want most is an eternal family linked by covenant and happy, healthy relationships. What I want second is to be able to function physically. What I often want in the moment is ice cream, sleep, and long days full of fun and big projects. It is spring and time to start anew focusing on the things I want most.
lift up your heart, lift up your voice, rejoice, again, i say rejoice!
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
“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
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.
first snakes of the year
Meet Rattler and Lucy.
Yes, they are snakes. My two littles loves bugs, snakes, lizards, frogs, and all the other creepy-crawlies in the world. There was a time in my life when I was terrified of all the small, slithery creatures, but having bug-lovers for children has helped me be able to overcome much of the fears.
Fisher especially loves snakes (actually he especially loves *all* the creatures, but seems to be some sort of snake whisperer). He finds them fairly frequently and makes each of them his new best friend. Now Annesley is following suit.
They found these two garter snakes at our friend, Jen’s, house yesterday. Rattler spent the whole day in Fisher’s pocket enjoying the warmth and seclusion. Lucy’s favorite spot is wrapping herself around Annesley’s neck and laying her head on Annes’ shoulder to spy on the happenings around her. Full of rainbows in Annesley’s mind.
They brought their snakes to gym today and most of the children had a great time watching, touching, or holding them. There were a few kids who were terrified, but most of them enjoyed the experience.
I don’t know how long Rattler and Lucy will be part of our gang, but for now they sure are spreading smiles and we all need more of those, don’t we?
how are those joints doing anyway?
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
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?
I'm Tracy, a mama with big dreams, crazy ideas, loads of laughter, an insatiable desire to learn, and enormous piles of laundry.
