October 29, 2010

Nice Email from a High School Classmate

Hi Todd,

I am embarassed to say that I just now got around to visiting your site :(. But I want to tell you how inspiring I found your story. I can honestly say I never knew or cared to know "what happened" to your arms. I just grew up in Clear Lake knowing you were a legend :)

My daughter, Lizzy, was born with a very rare condition of her arms called radial ulnar synostosis. Essentially, she is unable to pronate or supinate her arms. Her radial and ulna are fused together below the elbow. Her hands are stuck so-to-speak and appear larger towards the elbow. Like you, she has never known any different. She has adapted in her own way and learned to do things differently. Obviously, some things are more challenging that others. We are currently waiting to get into Shriner's Hospital to work with some occupational therapists who can assist her further. She is also a lefty...this made is challenging to teach her how to hold a pencil and learn to write.

Last year the teasing started. "Lizzy, you have weird arms". Mama Bear wanted to bash heads in but we all know that's not a good idea. I feel sorry for her merely because she is so limited in what she can do where sports and extra curricular activities are concerned. For now it is o.k. as she prefers to read...she is off the charts intelligent and wants to be a vet when she grows up.

After reading your story I have had an awakening. I realized I cannot feel sorry for her but I need to empower her and help her to embrace her disability. Thank you.

Like the syndrome that you and your son suffer from, Lizzy's condition usually has underlying conditions that accompany it as well. They say most people with the disorder have cardiological, neuroloical or internal organ issues. 2 weeks ago Lizzy suffered what appeared to be a seizure. We will soon be visiting with a pediatric neurologist and cardiologists to have a thorough work up done. There is also the fear of a tumor. This fear comes from a long line of familial cancers and a recessive gene which, if my children carry, puts them at a 90% risk of developing a malignancy in their lifetime with most cases affecting juveniles. A 90% chance is pretty much like saying "you're going to get cancer". I just haven't had them tested yet, mostly out of fear. My brother had his cancer at age 13, mine was at age 27.

Lizzy had a rough start as well. I was in my 25th week of pregnancy with her when diagnosed with breast cancer. Immediately I underwent a mastectomy. At 32 weeks gestation Lizzy was born through induction at the suggestion of my oncologist. They wanted me to start chemo as soon as possible. We lost her 4 times in her first 48 hours. She spent 8 weeks in the NICU at Minneapolis Children's. It was there that we found out about her arms. When one of her various IV sites became infected an Xray was done to rule out internal issues. That's where the fusion as found. I have to admit that when they told me about the condition you were the first person I thought of even though I hadn't seen you in years (I think the last time was when I watched you perform at JB Plums in the mid o early 90's). See what an impact you made on us young girls (hehe)?

I know I have rambled but wanted to let you you know that I will share your story with her and I will share your website with other people. I hope you get famous...outside of Clear Lake. I will pray that God continues to bless you and your family. You have beautiful boys!

Again, thank you for putting your story out there. It shed a whole new light for me. And so now, I will say this....even though you are a Vikings fan, I think you're AOK :0)

Keep on inspiring -


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