This past week Team Bittner attended the annual Arthrogryposis Multiplex Congenita Support Confernece. Both of my kids have Arthrogryposis Multiplex Multiplex Congenita. It's a mouthful to say, but it literally means "hooking joints" and causes tightening of muscle fibers specifically around joints. Two and a half years ago I never knew the word Arthrogryposis existed, and I was completely unaware of how it would impact our family. However, I have learned a few things along the journey...
1. Life Can Be Taken At Any Pace
Just yesterday Team Bittner was strolling through the Mall of America with Jasmine and Daddy in the lead and Ben boy and myself bringing up the rear. Jazz was moving along at a good clip but Ben and I found ourselves falling further and further behind. My initial thought was to hurry along my little man, but one look at his awestruck face quickly dispelled any inclination to speed up his step. Instead, we told the others to keep going and assured them we were all going to arrive at the same destination. It doesn't matter how fast we are moving through life, we only need to be mindful of our destination and enjoy the journey.
2. The Importance of Stretching
Both of the kiddos have undergone surgery to loosen tightness in their joints. Jazz at 3 mos old (gulp) and Ben nearly three weeks ago (again, I gulp). The most common post operative advice was to stretch the affected joints after an appropriate time for healing. Confession: stretching my kiddos is not fun. There is discomfort involved in varying degrees which causes the waterworks to spring forth. We explain to them that stretching will help them reach to their fullest potential. Yes it's painful, yes it's not fun to go through, but yes it is necessary. No one was ever intended to live a small life. Stretch, reach, work through the pain and grow into the best version of you.
3. Impossible is Nothing
During the AMC conference we meet children and adults from every end of the Arthrogryposis spectrum. Many parents were initially told that mobility for their child would be impossible due to the severity of their condition. I beheld those same gorgeous children scooting around the floors smiling whilst being very mobile. My arms wanted to hug every last one of them. A bit more personally (pun intended), my Jasmine had the diagnosis of persistent vegetative state given while still in the womb. If you have seen the dazzling floor show that is Princess Jasmine you will know that the only persistent thing about her is her unstoppable nature. She never stops moving or talking- she even talks in her sleep! What had been deemed impossible became a glorious testament to the power of the unfailing God.
4. Look to the Author of Life For the Final Word
Many of the parents I spoke with this week had been told that there was nothing to be done for their child. Some of the senior members recalled that their parents were told to institutionalize their Arthogryposis stricken children and forget about them. The common thread through so many of their stories was that the families refused this advice and sought out a different opinion. One family in particular had been wrestling with the pronouncement of Arthrogryposis after the birth of their child, but on their way home from church felt so impressed by the spirit of God to begin speaking out the word over their child. In a time of hopelessness they sought out the God of all hope. They trusted His word and are seeing their son, now a happily married father, absolutely flourish.
5. Strength is Found in Community
My favorite thing about attending the AMC conference was watching my kids form relationships with other precious AMC kiddos. Jasmine our little fashionista gushed with excitement when she saw another little girl who had the same shoes! Normally women would shudder when making the same discovery but Jasmine wears only one type of shoes specifically designed to fit over her leg braces. In something so small as shoes Jasmine found that she was not alone. Community is a powerful force. You could see it on the faces of my children as they were running around with other kids in braces, casts, and AFOs. These babes were like them. And I am sure that some unspoken cry of their heart was answered as they learned that they were not alone.
And now to you. I hope that these life lessons can help you wherever you are on this journey. Know that you are loved, you have great value, and you are never alone.
Jessie
(Proud Mama of the Little Bits)
