Saturday, October 23, 2010

Update on Sam, the good, the not so good and how he continues to amaze me

Perthes...I'm really not liking this diagnosis. Because of it I had to step up my normal level of research and I thought it was interesting to learn that 6% to 8% of children with Down syndrome have hip issues. Not a big percentage compared to all the other ones we are use to hearing. Something to keep in mind is the warning signs of a hip issue. If your child begins to limp, refuses to weight bear, changes their gait, begins to turn out their foot further, has difficulty transitioning from sitting to standing, holds on to their hip, lays down more often than normal...all of these can be an indication of a hip issue. Our children with Down syndrome have a very high pain tolerance which leads me to this week's events.

How is Sam? We are having good days and bad days. A good day means Sam is fairly mobile, walking around with little to no limp, sometimes even attempting running which I have to tell him not to do. He has no difficulty going up or down the stairs. A bad day means Sam is limping a lot, very noticeable, he tends to lay down a lot and put himself into a traction position, he will hold on to his hip as he walks, he will grimace when he puts weight on his hip, he will want to go up or down the stairs but will choose not to. Due to a really bad day this week we will repeat his x-rays on Tuesday to determine if his hip is still stable or if there has been any significant change. His surgeon will also check his ROM (range of motion) and if either has had significant change he will move up Sam's surgery.

And it a good day or a bad day, Sam continues to be happy. His personality and disposition remains positive. I have back issues and when my back acts up I am anything but happy so again I am learning from Sam. Sam can grimace one moment and laugh the next. If you ask him if his hip hurts you'll receive the standard "No, hip all better".

But this is what amazes me. When I was younger, I thought faith was something you were taught. I went with my parents to church, I went to Sunday school, I was confirmed and even though I was told time and again that God creates faith in Christ and gives people forgiveness through Him...I didn't really get it. This whole faith thing kinda baffled me. If you look up faith in the dictionary, you'll read:

1. Confident belief in the truth, value, or trustworthiness of a person, idea, or thing.
2. Belief that does not rest on logical proof or material evidence. See Synonyms at
belief, trust.
3. Loyalty to a person or thing; allegiance: keeping faith with one's supporters.
4. often Faith Christianity The theological virtue defined as secure belief in God and a trusting acceptance of God's will.
5. The body of dogma of a religion: the Muslim faith.
6. A set of principles or beliefs.

Then there was the passage: "Faith cometh by hearing, and hearing by the Word of God” (Romans 10:17) It kinda sounded like faith was taught. As I got older, I experienced faith in practical ways, such as having faith that if I worked hard I would get promoted, if I went to college I could advance my career, if I....hmmm....does that really define faith???

Faith was further defined when I had children. We had struggles and I prayed and had faith that God would guide me. Hmmm, it still seems to be about me?? When Sam came along and presented us with health issues that were beyond my control or ability I finally began to feel that I was understanding what it meant to have faith. As I sat in the ICU praying that Sam was going to take his next breath I began to realize that I needed and was relying on God...pure and simple. This was a changing point for me and my relationship with God...we began to talk a lot more. I began to share my thoughts, my feelings, my hopes, my dreams and I learned to thank him each and every day for the blessings I have received. I rely on Him in good times and bad.

But now I look at Sam and a different view of faith is again introduced. Sam has gone to church and Sunday school and I work with him on home bible study but how much has he learned about faith??? When Sam was baptized he was admitted into the ICU later that evening. I believe at Sam's baptism was when he received his faith. And the difference between you and I...and that he embraced it. He didn't have to analyze it, he didn't have to question it or learn about it...he simply embraced it. Sam didn't have to hit rock bottom to realize his faith.

Last night I took Sam to church, it was a good day, but the seats in church were not comfortable even with the added cushion and you could tell by the amount of repositioning that Sam's hip was bothering him. I kept a close eye on Sam while listening to the pastor (whom Sam refers to as teacher) and I watched him on several different occasions fold his hands in prayer and bow his head. He mumbled something I couldn't understand but each time he would raise his head and he would be smiling.

I often talk about Sam's life as being simple which I also feel is another aspect of his faith. Sam's mannerisms of saying "Hi" to everyone, hugging often, smiling and laughing through even the worst of times, his purity and innocence and his lack of worry, anxiety, stress and doubt seem like something we should all strive for....and yet he's considered the one in our society that is lacking or deficient. We have so much to learn from these individuals if we allow ourselves to see. They are different but not less which will lead me into my next posting on the movie Temple Grandin. Have a great Sunday!!


  1. Sue, thanks for sharing so much wonderful information here. And for sharing your heart about tough stuff with Sam.

    I've often wondered why Micah's neurodev ped here in MN messes around with Micah's hips and legs when she sees him. Makes sense to me now that you shared that stat. I wish everyone had access to a doc like her (I so wish Micah had seen her from birth, but it's been a nice perk since moving from NE WI to MN a year ago).

  2. Oh Sue,
    My heart hurts for Sam and his self correction strategies for the pain. Sam in is my thoughts and my prayers. God is not causing this problem [though I do believe God could have prevented it - my faith is not perfect] but God will help Sam and you get through it. I still feel bad for this journey. God bless both Sam and you.