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happy mother’s day
Mother’s Day was a mixed bag of emotions for me today. On the one hand, I am so, so grateful to be a mother. On the other hand, I am feeling like a failure in the mothering department right now. I can’t do the things I want to do because my body simply won’t let me. Right now I can’t even drive myself anywhere. My fuse is short. My house is a mess. My emotions are up and down and all around.
And my poor children never know what to expect from one day to the next. One day, mom can take them to the park, the next day she is down in bed or passed out on the floor or grumpy as all get out. It has to be incredibly hard on them and while I hope it is forming them into resilient, service-oriented people, I worry they will look back on their childhoods and feel neglected and/or unappreciated.
So, this morning, I didn’t really want to go to church and hear how wonderful motherhood is or how some sister is the most amazing mother ever. I wasn’t up to hearing the accolades and knowing they currently don’t apply to me.
But I took a long bath and thanked God for my children and my life and the amazing blessings of my life. And then I put a dress on and walked out the door with my not-so-cute-hair and my not-so-cute-outfit and my not-so-happy-heart and decided to worship my Savior and recommit to Him to be willing to take His name upon me.
And it worked. His spirit warmed my heart and filled me up with gratitude for my mothering efforts. I am not the mother I want to be and I wish things were different for our family, but really, we are doing the best we can in a pretty tough situation and I need to give myself some slack while also striving to nurture these precious souls with His love and His grace.
Happy Mother’s Day to all of you. Thank you for loving and serving and teaching and creating and inspiring children everywhere.
And here is a note to my mama who is feeling less than the pinnacle of motherhood today as well:
Mom, I love you. More than words can ever express, I love you. You are a wonderful mother and boy, howdy, and amazing grandma. I am so grateful for the privilege I have had to learn from you and be loved by you. I hope someday you will be able to let the guilt go. You did a wonderful job in spite of the circumstances you were in. Do you remember the many times you stayed up all night with me helping me with a school project I had procrastinated? Do you remember designing all my student council election campaign posters? And working for hours to hang them up? Do you remember all the love notes you slipped into my lunch? Do you remember all the prayers you have sent to Heaven on my behalf? Do you remember braiding my hair? Sewing my clothes? Laughing till we peed our pants? I love you. Always know, I love you and am grateful for you.
four bucks for ainsley
Ainsley Smedley is one of the recipients of my Four Bucks to Change The World campaign to celebrate my 40th birthday.
Ainsley is the daughter of my cousin Jenny. Jenny is really my second cousin, but in my family we are close-knit. I grew up attending a big reunion every summer with all my second cousins and third cousins and thought of them all as first cousins. Tami, my dear, dear friend, is actually one of those second cousins as well. Jenny’s dad, Winn, was always one of my favorites – he would play with the young kids as if he were one of the gang.
Jenny and Bryan, are the parents of five children, Meili-10, Rhyan-9, Ava-7, Ainsley-5, and Hudson, born about 6 weeks before Ainsley’s diagnosis, is now 1.
Aren’t they the cutest thing ever?
I remember the first week of Ainsley’s diagnosis of Acute Lymphoblastic Leukemia and reading this post from Bryan, her daddy. It broke my heart that within a few short days their entire world had been turned upside down. Ainsley had just turned four years old and started having bruises appear on her legs. Jenny was concerned about another issue altogether – constipation – and was able to get her into the doctor just a few days later. Those bruises started spreading and her lymph glands swelled up. The next day, the doctor called and said he was fairly certain Ainsley had leukemia and needed to be admitted to the Children’s Hospital that very day. By the end of that week, Ainsley underwent surgery, had a chemo port put in, and started on the 2 1/2 year chemotherapy regimen. Can you even imagine your world changing that much from Tuesday to Friday? Add in a 6 week old to boot and a dad in medical residency and you’ve got the makings of one rough ride.
But the Smedleys have stuck together. They have learned to love and serve and sacrifice for one another in beautiful, heartbreaking ways. Last Mother’s Day, Jenny shaved her head when Ainsley’s beautiful red locks fell out in clumps.
They have sold Ainsley’s Army bracelets, made sure to laugh as much as possible, and have nurtured their faith in God’s miracles.
Since that fateful week in February 2013, Ainsley has been fighting with all she’s got. She is sassy, determined, and has more oomph than I can imagine. She has hollered at nurses one minute and thanked them the next. She is full of love and spice and just the right blend of humor. The Smedleys have a favorite phrase, “Cancer picked the wrong girl!” and Ainsley likes to finish it by saying “I’m gonna kick its butt!”
Cancer has changed their family forever, as it does everyone who faces it. The three girls have had to grow up quickly, baby Hudson has had a far different babyhood than his four older siblings – he’s been well-loved, but has had to get used to lots of different situations and helpers, and everyone has had to learn to survive on much less sleep. They have dealt with endless doctor’s appointments, puking children, lumbar punctures, steroid rage, five little children needing more time and attention than is humanly possible to provide when one of them has cancer, and so much more. They have also been surrounded with supportive family and friends who have walked this journey with them.
Bryan is often the one who writes the blog updates on Ainsley’s condition and I have come to love him through his words of pain, heartache, faith, and hope. Here is one of his posts and here is another one that show you the caliber of man he is.
I love this picture of Jenny and Ainsley! They both have some spunk!
Living in the land of make-believe and dress-ups are some of Ainsley’s favorite things.
Look at all that hair growing back in!
I haven’t seen Jenny for years, but I have always loved her parents and siblings and now, through the sharing of their journey through cancer, I have fallen head over heels in love with her husband, children, and especially Ainsley. My little Annesley is just one year older, has nearly the same name, and has the same zest for living, passionate emotions, and courage that Ainsley is kickin’ cancer with. I often hold my Annes a little closer and snuggle her a little longer because of what her cousin Ainsley is going through.
Let’s all chip in our $4.00 to help them with the medical bills that are piling up! If we each do a little and spread the word to help others do a little, we can make a big difference in their lives! Click here or go to youcaring.com/fourbucks to give Ainsley four bucks today.
four bucks for dando amor
Dando Amor is one of the recipients in my 40th birthday celebration, Four Bucks To Change The World. Dando Amor is a local Idaho organization whose mission is giving love.
Dando Amor is a non-profit charity dedicated to blessing the lives of children throughout the world. Serving in Ecuador, Burkina Faso, and Haiti, Dando Amor takes regular service trips to all three countries. All are invited to join the Dando Amor team, whether on a mission trip, or helping fundraise at home, volunteers are always needed.
Dando Amor was founded by Travis and Jennie Gugelman and Lori Nordstrom. After going to Ecuador on a photography assignment and visiting many orphanages, they realized the orphanages backed by American organizations and businesses were far ahead of those that were not. The children living in orphanages who received funding from outside organizations were healthier, more educated, and happier. So they decided to make a difference by both supporting existing orphanages and starting their very own.
In 2013 Dando Amor opened their own boys’ orphanage in Quito, Ecuador. Boys over the age of twelve are no longer allowed in the normal children’s orphanages – they are seen as a possible risk. Most of them have no where else to go and end up living on the street. Travis, Jennie, and Lori decided to open their own orphanage for these older boys. This was and continues to be a very big undertaking, but the Dando Amor Team knew the time had come and they needed to do something to keep the children they loved off the streets.
We have been donating to Dando Amor for awhile now and are incredibly impressed with how they use their funds to save both lives and hearts. This year we didn’t give Christmas presents to each other and instead sent that money to Dando Amor. Our friends, Jen, Paula, and Lisa, have all gone on Dando Amor service trips with their families and all have been changed forever by the work Dando Amor is doing to Be The Good. My daughter, Blythe, is planning on serving with OSSO or Dando Amor soon. My goal with this Four Bucks Campaign is to help Dando Amor open a girls’ orphanage for the older teenage girls this summer. They need every penny we can send them. Check them out on Facebook or on their
Click here to give four bucks to Dando Amor.
four bucks for maggie
Maggie is one of the four recipients in my Four Bucks To Change The World project to celebrate my 40th birthday. I have been dear friends with Maggie’s mom, Jodie, for the past 10 years. We have worked together in various education endeavors and spent time in each other’s homes. I love Jodie dearly. She has taught me much about living with purpose, loving deeply, and seeing infinite possibilities in the world and people around us. She is a woman of vision and determination.
Here is their story as told by Jodie:
Maggie was born in the early morning hours of summer. She would be my first, my daughter, and the culmination of a dream I had once thought might never come true. Of course, we anticipated our babymoon would be spent counting her perfect fingers and toes, kissing her little pink body and taking in the scent of that beautiful newborn head.
We were blindsided by the unexpected. When she finally arrived she was non-responsive. Our limp little girl was whisked away to the Neonatal Intensive Care Unit (NICU). We felt like deer staring into the headlights of a MAC truck.
Maggie had brain damage. The news came quickly and horribly. Doug and I entered the NICU and saw our tiny baby wired, tubed, and needled. She lay limp, her little lips quivering, and black eyes frighteningly empty. How could this be the rolling ball of life that filled my womb just moments before?
From her very first moments here, we committed to give Maggie everything she needed to blossom. We used music therapy, cranial sacral therapy, homeopathy, brain gym, kangaroo care and good ‘ol breast milk. Surrounded by babies that had been in the NICU for months, those dark eyes quickly filled with life and Maggie was released only three weeks after sustaining a traumatic brain injury.
It’s been seven years since the MAC truck of brain injury hit our family. Maggie’s days have been filled with trillions of hours of feeding, endless trips to therapy sessions and specialist appointments, with little brothers and sister in tow from office to office to office. AND . . . thanks to donors like you, Maggie’s days have also been filled with birthday parties, swimming, hiking, beaches, snowshoeing, horseback riding, biking, movies, playing games, friends, learning to read way earlier than her mom even knew, loving math, freedom in an electric wheelchair, finally sitting up in the bathtub, doing chores, speaking with the iPad, and calling friends on the phone.
What of the next ten years? Well, that’s just the Magic of Maggie. When you’re told that you’ll never be able to walk, or talk, or feed yourself, or have a family of your own then, really, the door of possibilities just swings wide open! Dreams, belief, determination and opportunity are the four pillars of a miracle. Maggie has the dreams, the belief, and the determination. You can help Maggie access opportunity.
Maggie’s Month was inspired to help fund the opportunities Maggie needs for her miracles to happen. The opportunities that your donation will support are:
Eagle Eyes: a program that would allow Maggie to communicate her own thoughts using the movement of her eyes. Here is a video describing this awesome communication system.
The Upsee: A standing mobility system that would allow Maggie to participate in play, work, and learning in ways that she has never been able to before. Here is a video by the mom who invented the Upsee showing how it works.
Horse (Hippo) Therapy: “In riding a horse we borrow freedom.” says Helen Thompson. Hippo therapy has a host of benefits such as strengthening core muscles, relaxing hips, and encouraging better speech therapy results, but more importantly it brings confidence, comfort and joy to the rider, not to mention sweet, sweet freedom. Watch this video to learn more about hippo therapy from the National Ability Center’s Equestrian Program. Here is a Maggie riding her horse – get a tissue, I always cry when I see her on the horse.
Anat Baniel Lessons (ABM): ABM is a method of helping the brain re-pattern and organize itself through specific movement of the body. It has helped individuals develop body function that they previously didn’t have. The sessions are called “lessons” rather than “therapy” and the participants called “students” rather than “patients” because of the learning the brain does during the session. This has become our preferred therapy because of the remarkable results we have seen in Maggie in comparison to the hours and hours we’ve spent in traditional physical and occupational therapy. Here is a video showing the effectiveness of ABM.
Through the gift of her disability, Maggie has become a teacher of love, ability and healing. She has inspired people across the globe to live better and more fully, and to reach out in small and simple ways to make the world a better and sweeter place for all through family philanthropy. She is a bridge builder, a We Sherpa.
We hope that your family will be inspired to provide Maggie the gift of opportunity as she pursues miracles in her life. But even more importantly, we hope Maggie will inspire your family to regularly take up causes of good to support. Regular people, honoring the principle of giving have, do, and will make the greatest impact for good in the world.
Click here to give four bucks to Maggie!
four bucks for aidan
Raise your hand to help Aidan! Then jump over to my Four Bucks To Change The World page at YouCaring.com/FourBucks and donate your $4.00 to bless Aidan’s life.
I met Aidan and his family a few years ago when God guided me into their lives. I was in the middle of doing a fundraiser for Make It For Maggie and knew in my heart there was a family in our local area we needed to support, but I didn’t know who it was. I kept praying to be guided to the family we were to reach out to and bless. Then God told me about Rachel and Lincoln Lear and their three precious boys.
I called Rachel up out of the blue (here is her beautiful perspective on the whole thing) and told her we wanted to raise money for her boys’ needs. As shocked as she was that a complete stranger was calling her, she graciously accepted my plan to make a difference in the life of her family. We have been dear friends ever since and I count them as one of the great blessings in my life. Aidan teaches me how to love more purely and more deeply. His heart is huge and he shares his love abundantly.
Here is what the Lear’s neighbor, Mary, said about them.
“I believe that some people need challenges and trials in their lives in order to turn their hearts toward God, and I believe that some people agreed to have certain challenges and trials in their lives and praise God through it all in order to turn other people’s heart to Him. Rachel and Lincoln Lear, along with their precious boys are just such people. Rachel and Lincoln are two of the most humble, kind, gracious and self-less people you will ever meet. They have been given tremendous mountains to climb during their journey on this earth. They have been blessed to be the parents of four beautiful boys, one of which is waiting for them in heaven.
Their other three boys have serious health problems. Aidan, the oldest, is 9 years old. He has been diagnosed with Lennox-Gastaut Syndrome, which is the most severe form of childhood epilepsy. It is extremely rare, with one retrospective study estimating the annual incidence of LGS at 0.002%.
LGS is characterised by daily, multiple seizures of varying types, larger than any other epileptic syndrome. The wide range of seizure types can include Tonic, Myoclonic, Tonic/Clonic, atonic, atypical absence and non-convulsive status seizures. 78% of children with LGS have an underlying cause such as brain lesions, genetic abnormalities, hereditary metabolic disorders, encephilitus, meningitus, brain injury or history of infantile spasms (West Syndrome). In 22% of cases, there is no known cause. A cause has not yet been determined in Aidan’s case.
The onset of seizures usually begins between 2 and 6 years of age, with an average onset of 3 years. Over time the child will have multiple seizures that are resistant to treatment. Multiple anti-convulsant medications are usually needed to decrease the frequency of seizures, but complete seizure control is very unusual.
The combination of multiple medication side effects and multiple daily seizures take their toll on the child and causes a progressive decline in cognitive, physical and social development. The prognosis of these children is very poor. There is no known cure for LGS and a future free from seizures and normal intillectual and/or physical development is exceedingly rare, leading many Neurologists to identify Lennox-Gastaut Syndrome as a catastrophic diagnosis.
Aidan’s health has been declining over the past years and in January of this year, he contracted pnemonia in both lungs. There were many complications due to his already fragile state. He had a tracheotomy done and is now on a permanent ventilator as well as a permanent feeding tube. After over 2 months in the hospital, he was able to come home in March and is currently on hospice care.
The Lear’s second oldest, Jacen is 6 years old. He has been diagnosed with cerebral palsy with a seizure disorder. He has not been diagnosed with LGS, although his behavior and decline in health is mirroring what happened with Aidan.
Their youngest, Damon, is 4 years old. He has been diagnosed with epilepsy.
All three boys have varying degrees of developmental delays and regressions. They also all have a body temperature dysfunction, where they can’t regulate their body temperature so they cannot play outside, or over-exert themselves in anyway. The specialists haven’t fully diagnosed any of the boys, but they do say that they are dealing with a genetic disorder, that all the boys have the same thing and are just at different stages.
On top of it all, their angel mother Rachel, was diagnosed a few years ago with epilepsy herself. So she has her own migraines and seizures with all the side-effects to deal with on top of pouring every ounce of energy she has into caring for her boys and all of their needs.
Despite having more challenges than most people, the Lears are happy, grateful, giving, and positive people. They are most deserving of any and all good that could come their way. They need help buying medical equipment to improve the boys’ quality of life, medical expenses, and possible funeral expenses for dear Aidan.”
An artist painted this picture for Aidan last week – he loves it!
I can’t paint and my body isn’t strong enough to take care of him, but I can still show my love for him by raising money for his needs. I want to make a difference in Aidan’s life and the lives of his family members. Let’s get them the equipment and funding they need so they can focus on living and loving without the huge stress of “how do we pay for this?” hanging over every decision.
Go to youcaring.com/fourbucks to donate today. Then spread this far and wide. Let’s get 40,000 four buck donations.
40
Today is my 40th birthday! For the past five years, I have been looking forward to climbing my favorite mountain to celebrate this momentous occasion, but now that my body is suffering with Ehlers-Danlos Syndrome, it is not going to happen anytime soon.
Maybe someday when my body is stronger and more capable of doing hard things, I will be able to climb my mountain. But for now, I have to come up with a new way of celebrating. I like to do big things – I thought of having a big party with 40 of my dearest friends. For a teensy moment I thought about what presents I wanted. I finally decided instead of a party or presents, I wanted to do something BIG for the world – something that would actually make a difference in the lives of those around me. I want to climb a tall mountain of goodness.
I have chosen my four favorite families/organizations that need help and am searching for 40,000 (yes, you heard me right, I am shooting for at least 40,000 people) to donate $4.00 to one of these causes. We can do this! We can bless the world with $160,000 for my birthday.
See, I know there is goodness in this world. As my body has fallen apart the past two years, I have been surrounded by love and service and sacrifice and it is time I spread that love far and wide. My donations to any of these four causes, will not make a big difference, but together, we can make a huge impact. We can change the world by joining my $4.00 with your $4.00 and spreading this post all over Facebook, contacting news organizations, and emailing our friends and family members to join with us in being the good in the world.
My Four Favorite Causes
Let’s make this go viral! I am convinced that through many small actions, we can make a HUGE impact. $4.00 is small, almost everyone reading this can donate $4.00, so do it now, and let’s BE THE GOOD!
Go to youcaring.com/fourbucks to donate today and then please, please, please, share this far and wide.
Does anyone have an in with a news organization? Have a big following on twitter? Please help me get this project out to the world. I don’t know 40,000, but we can reach that many if you will help me.
new calling
Last week I received a new church calling. In our church we receive callings from a member of our local ward (geographic area of about 400 – 800 members) Bishop or from our Stake Presidency if it is a stake (group of 8-10 wards) I am now serving the Stake Primary Presidency as the secretary. The Primary is our organization for children up to age 12.
It is a tad (okay, a LOT) overwhelming to think of adding anything more to my life. I feel great peace about the calling and feel strongly that the Lord is asking me to serve His children in this way at this time. In spite of the peace, I also know that I am at my limit and my family is at their limit. Something or several things need to be let go to free up time, mental energy, physical strength, and spiritual guidance for this calling. It is going to require much of me and frankly, I don’t have much to give. Some hard choices need to be made and I don’t want to make them. I want to do EVERYTHING I want to do and I cannot. I am going to be spending the next while pondering and praying and getting really clear on what God wants me to do right now. My list is long: wifing (is that how you spell the act of being a good wife?), mothering, homeschooling, taking care of my body’s fairly complex needs with nutrition, supplements, exercise, rest, therapy, and careful planning, personal education, personal spiritual work, genealogy, iFamily Board duties, mentoring, gymnastics, colloquia, Swim Camp, other homeschool events that I love to plan, philanthropy, cooking, cleaning, friends, and church responsibilities. This is not a random list to see how long I can get it, this is a list of things I am anxiously engaged in right now, care about deeply, and spend much time and energy on. I know God will strengthen me and help me to accomplish His purposes, but I also know I need to make some difficult decisions.
I am pondering the words from my priesthood blessing yesterday and spending time listening to the impressions of the Spirit. My prayer is that God will teach me His will and then strengthen me to do what He asks.
Serving and loving and nurturing children is one of my very favorite things to do – I am excited to be an instrument in His hands in bringing children to drink from His well of living water, to help them feel safe and wanted and fed by the Spirit.
ouchie-wah-wah
24 ribs twisted and stuck and skeewampus. C1 – C7 shoved forward. Pelvis torqued 1/2″ higher on the right side. Lots of pain. All from one little fall.
Mr. Jeremy is a miracle worker. He moved all the vertebrae back to where they should be and now I can move my head from side to side. He fixed the ribs that were poking me and not moving correctly for my lungs to inflate. He quickly pushed my right hip back into position to level me out.
And that is as far as we got. There were so many bones out of place he couldn’t get to all of them in our forty minutes together. We are hoping someone cancels this week so I can get back in for the rest of the joints to be fixed. My shoulders, pubic bone, sacrum, and all those pesky bones in my feet are still not where they should be.
For now I am back in bed with an ice pack on my back and a determined attitude in my soul.
sleep & less pain, wahoo
I spent all day Saturday in bed, moaning, trying to sleep, and trying to think positive, uplifting thoughts. I kept looking at the blue sky and trees outside my window and let that view fill my spirit with hope. Spring is here, growth and renewal are part of the cycle of life and while my body may have moments of winter, I also have wonderful moments of spring. Last week was one of them and if this injury takes me a while to recover from, I am going to hold on to those spring-like moments of riding my Elliptigo and exercising with Jeremy to get me through this next bout of winter experiences.
After several treatments with BF&C (Bone, Flesh, & Cartilage herbal salve) and Deeper essential oil and a long soak with Epsom salts, my back is feeling quite a bit improved. For several hours yesterday I could hardly move my right arm at all – the area around my scapula was so tight it hurt to move anything more than my fingers. I can also breathe again without excruciating pain. Yesterday, every breath felt like ribs were stabbing into me. Today it just hurts badly if I take a deep breath. I was able to get some sleep last night and today I am going to try to attend church. I don’t know if that is wise or not, but I desperately want to be there.
fire in my soul
When things like this happen it is so hard for me not to give in to anger. A little part of me wants to cry and lash out and scream and let my fire-breathing anger consume everything around me.
I am trying hard to stay in a place of peace and hope and calm and love.
Strengthen me, Jesus, fill me with thy power and glory that I may have peace.
I'm Tracy, a mama with big dreams, crazy ideas, loads of laughter, an insatiable desire to learn, and enormous piles of laundry.
