Dad's Journal
Tuesday, June 16, 2009 at 12:54PM Our journey through life with Mitchell has been a growing experience for Michelle and I. We are great supporters of each other, both leaning on each other’s strengths to get through each phase of Schimke.
Even dealing with something so tough as Mitchell’s dysplasia, his illnesses, his hospital stays, his surgeries, his size, I still see the gift in him. Our family is so blessed to witness such a miracle from God. Mitchell is truly a walking miracle.... How can he be so small? I can’t comprehend it...and I am his father. A miracle is the only way to describe my son.
Mitchell is like Simon Birch. If you haven’t seen the movie, go rent it today. God put Mitchell on this earth for a reason, and I believe that reason is to touch people in a way they may not have been touched before, to prove that miracles are here today, that God is with us every step of the way, and we should trust Him and what he has in store for Mitchell and our family. I hope you see the miracle I do and you see God working through Mitchell to help others.
I wrote my journal to tell you the role I play in this life journey. In my soul searching, writing and re-writing for over a month, I find that I am an optimist, a jokester, both sad and thankful for this journey.
I am our family optimist....and an optimist for many reasons. I know the true facts about Schimke and the bad things that happen to those diagnosed with it. I know the symptoms—low immune system, kidney failure, high blood pressure, migraine, and the constant risk of a stroke. I know these are all real and likely scenarios, but I must also be our family’s cheerleader. I know that things aren’t going to be rosy, but we can deal with the issues as they come. We should focus on the good and not worry about the bad things, those likely scenarios, which could happen in the future.
I am our family jokester. If I don’t laugh, I will cry. I am normally the first one to crack a joke related to Mitchell’s small size. “Mitchell, don’t drink too much of that or it will stunt your growth.” I’m always thinking of ways he’ll be able to fool people when he gets older. He looks like an infant, so he’ll be able to hide in great places at Wal-Mart. He’s already the best hider in the house when it comes to hide-n-seek. Wow. Now wouldn’t that be a great advantage to have? He’s also the only person we allow to walk on the table or the counter tops. And he will have a lifetime of piggyback rides because he will never be too heavy.
I am sad. Sad for him. Don’t tell anyone though as I keep this to myself. I guess that’s what we do as parents. We want them to have a perfect life, with no heartache, no skinned knees, no hurt feelings. I am sad that he must go through the pain of the migraines. To see his lifeless body, the confusion when he is in pain and can’t communicate, and the vomiting over and over again for hours is so tough. I am sad that even the smallest size underwear doesn’t fit him. I am sad he can’t truly play sports like his siblings and friends do like soccer, Taekwondo sparring, baseball and football. I am sad that when he stands in a swimming pool that a big splash or wave can knock him over because his 17 pounds just can’t hold him still (same for a hard wind). I am sad that he must constantly look up. I am sad he may never have a true girlfriend. I am sad to know the pain and suffering life is going to deal him through kidney failure, transplant, needle stick after needle stick, and the many doctor visits. I hurt for him and pray for his peace through all of this.
But I am thankful. I am thankful for the support of our church, our family, our school friends, our Taekwondo friends, our Sunday school class, our co-workers, our clients, our family. I am also thankful for you. I am thankful for the thousands of daily prayers said for Mitchell. I am thankful to those that have helped get the Little Giants Foundation up and running. I am most thankful for the hundreds of doctors who have seen or cared for Mitchell since he was born. I am especially thankful and humbled by Dr. Christy Mayfield, Mitchell’s primary care doctor in Tulsa. She is incredible. She never gave up looking for the cause for his symptoms or a cure. She has played the role of doctor, counselor, advocate, medical terminology interpreter, and researcher with countless hours of unpaid time spent researching a potential diagnosis for Mitchell. She is truly a priceless individual and I am thankful for her. The same goes for Dr Michael Bober of the Alfred DuPont Children’s Hospital in Wilmington, Delaware. I am thankful for his dedicated research, late night phone calls and hours of conversation with us and others to try and diagnosis Mitchell. Dr. Bober matched Mitchell to Schimke and is an outstanding doctor to the Little People community.
My heart also goes out to Dr. Cornelius Boerkoel in British Columbia and Dr. Thomas Lucke in Germany, who have spent hours on the phone with us, directing Mitchell’s care from different parts of the world—all for no pay but for the passion of one little boy. Without their research related to Schimke, we would not have a diagnosis, path to follow, or a set of expectations of what is to come and what we need to prepare for. These two doctors and those listed on the SIOD Research page are continuing their research to find a cure for Schimke and other forms of rare dwarfisms, as well as other important medical research. And finally, I am thankful for you. I am thankful that you have taken the time to come to the Little Giants Website, to look at the different pages and to read about the Little Giants Foundation, SIOD, our journey, and Mitchell.
As I close, I ask for your prayers and help. I ask that you please forward the Little Giants Foundation Website link to others, post it on Facebook and other social media sites so that others can share the experience, learn about Schimke, see the miracle in Mitchell, and have an opportunity to support this great cause and possibly help save my sons life. If you find it in your heart to help us, please donate now.
You may send Troy an email at: Troy@LittleGiantsFoundation.org
Reader Comments (4)
Your and Michelle's journals have touched my heart like you can't believe. Mitchell is blessed to have the two of you as parents. I will pray for Mitchell and your family, and share your story with everyone I know.
Troy,
Gina Frachiseur told me about the article and I can say that it touched my heart. Please know that I will be in prayer for you and your family as you travel the journey. My friends here in Simms will also be praying for you guys.
Lisa (Allen) Hudgeons
Troy,
I am your Aunt Marie's friend. We pray for you and your family daily...I know that you know God's grace is sufficient and nothing is allowed for our children until it passes through our Lord's mighty hands. We gave our son to Jesus 5 years ago July 14, 2004. A car wreck so uncalled for; I felt I could not go on but Troy I know I will go to Stephen some day and our circle won't be broken any more. We were blessed to have him 31 years but not near long enough. He was an angel sent to us and I miss him so but I know now he is healthy, no needles, no medications, and he is with our Heavenly Father and waiting for his dad, and his brother and me his mom to join him some day and with God's promises we will. You and Michelle and your children are blessed, God chose you to be the special parents to Mitchell that you are and you will endure and abound in joy some sweet day. God bless you . In Christ's precious name my heart yearns for a cure for Mitchell, keep the faith and never give up. Sandy Clay, Morrilton, AR
you came through walmart one day in bixby and i was your cashier and what you told me touched my heart ....
since you have told me i have looked into it more and found out that he is a one of a kind son witch makes you one of a kind parents...i hope everything goes better and you guys enjoy ur upcoming trip....remember everybody is praying!!!