Michael was knit in my womb by God Himself. He was not a mistake or overlooked by God while He was busy knitting “perfect” children. There was not a Michael Model A and a Michael Model B. He was and is Michael. Period. This is God’s plan for our life. Michael is His. That one truth forever changed how I viewed Michael. Instead of wondering how he would have looked or acted if he hadn’t been born with Down Syndrome, I now saw past the diagnosis to my son.
In my final sleepy thoughts, I realized there was something familiar about that journey up the stairs. My journey with my daughter carried the same blindness, the same groping for answers, the same stumbles and getting up. This single thought gave me great hope:
At the bottom of the stairs, I had to trust that the light would come – only if I moved forward.
It’s not because I’m terrified of germs. It’s because I’ve spent too many hours in the emergency room, too many nights in the hospital, too many days sitting in surgery waiting rooms, too many weekday afternoons administering immunoglobulin infusions, too many visits to the lab to get immunoglobulin levels drawn. I’m “that” mom because I’m looking at the world through the lens of PIDD.
Feeding a child through a feeding tube requires a lot of time, dedication, patience, trial and error, and plain old mothering instinct. There are good sides (yes, good!) to tube-feeding and bad sides to it as well. And sometimes, things can get ugly. As I’ve navigated through this journey and have become an advocate for my son through awareness of tube-feeding, I have been able to think of all of the good, bad, and ugly things. Here are some of the top ones I’d like to share!
It’s hard to think about what kind of boy and man he will grow up to be because of some of the struggles he has, like his sensory issues. It’s another thing to have to worry about how he will turn out because he was constantly having a negative reaction to my disabilities. And ultimately that creates a storm of junk that we can’t “solve” or heal. We are left just to deal with it from day to day and hope that the end is not as bad as it sometimes appears it may be.
I know that Ezra’s issues are not as bad as other kids who have autism and stuff like that. But the stuff I deal with makes it, I think, just as hard.
When our son Jack was born in 2009, it seemed like a natural thing that he would grow up to enjoy many of the same things that I had as a boy and young man, which I thought to be synonymous with being a growing boy: throwing the baseball and football; swimming; trying various sports and activities; hiking, camping, climbing, rappelling, and enjoying the great outdoors; and so much more.
In other words, I was expecting what I grew up thinking was a typical male child. As it turned out, I was wrong.
Both my husband and I would agree our faith was much shallower before we had a child with special needs. The Bible talks repeatedly about the reason for trials and tribulations in the life of a believer, but we both thought that Jesus was supposed to make everything easy and happy all the time. Having been through what we have been through, we both now realize that our faith is deepened through the hard times when we lean on and trust in Christ.
The greatest need that the special needs family has is recognition of the fact that they are first and foremost, “normal” people, just like you.
The Story Behind this Special Needs Series The story of this series begins five years ago. Kathryn, Sara, and I were young military wives who had met online. We were expecting our first babies – all boys. We commented on bumpdates and nursery pictures and even sent baby gifts to each other. One after another, we gave birth to our precious … [Read more…]
Announcing 31 Days of Supporting the Special Needs Family – a blog series starting October 1, 2014 at beautifulinhistime.com. Providing hope and encouragement to special needs families and endeavoring to open dialogue, build bridges, and create community.