Soul-Stirrings from Stephen: What My Son’s Needs Have Taught Me (1 - Expecting the Unexpected)

I decided to start a new blog series that I hope touches whoever reads it. I want to say that each of these posts I share come from a very tender part of myself. A part that used to be completely open but is not so much anymore. A lot of me has decided to “sit down and be quiet” since my life was turned upside down by my son Stephen. However, another part of me desires to express what I feel and even more so, what God has taught me through my son’s different needs/medical issues. I believe with all of my heart that God wants me to share. Do I believe that God’s purpose in me being his Mom was for this? To become a better me? To act like I know a bunch of stuff that I didn’t before? No. I think God’s ultimate purpose in me being Stephen’s Mom is to love him and help him grow, specifically to help him grow up in Him. Yet it amazes me each and every day what God does through my child in order for me to grow up in Him.



It was pretty early on when I realized something was going on with Stephen that wasn’t “right.” In fact, when he screamed bloody murder the first couple of days while I tried to feed him, I was shocked. A baby is supposed to want to nuzzle his mother and enjoy her milk, right? At times, it seemed as though feedings were getting better. Then we would have another screaming episode, and I would be raw and bleeding. After much sought-out advice from others and trying every trick in the book, we moved to bottle-feeding. He hated that even more. It got even worse when he began vomiting, choking, gagging, turning blue, and not sleeping. After that we began seeing doctors, going through tests, trying different medicines, etc., etc… We were told that our son was “the poster child for SIDS” and to keep him upright 24/7. For months my husband and I walked around like zombies. Every waking moment was spent taking care of our son, trying to feed him and make sure he was okay. We finally opted to do a surgery that promised to help. It did, for a little while. Then things got worse when Stephen stopped eating altogether and ended up severely dehydrated and in the hospital. Finally he needed a feeding tube, and we went to Dallas for a feeding program, returning home with little to no improvement. Not long after, we discovered serious sensory integration problems, and certain milestones that Stephen had been doing (like rolling over) suddenly stopped. Developmental progress, specifically physical, was not being made. Since then, my life has consisted of doing therapy every day with him, both in clinic and at home, so that he has every opportunity to function normally.


When I was pregnant with Stephen, I had NO idea that our lives would be the way they are now. I expected being a new Mom to be glorious, and that I would have a perfect, healthy baby. And really, who doesn’t expect that while carrying a beautiful baby in the womb? It was even more unexpected because my pregnancy was normal. I read many books while pregnant, including "What to Expect When You're Expecting." What the books didn't tell me is that there is always a chance that something can go wrong. And there are many types of special needs that cannot be detected in the womb. Not once did the idea of having a baby with needs or medical problems go through my mind.


I bring up all of this to help make this post a little clearer. Because my life with Stephen, to the outside world, is not normal; but to me, it feels like coming home. Like having Stephen is where I've always belonged. I am sure that doesn’t make much sense. But if you look at things through God’s perspective, it does. I have learned that God’s plans do not make sense. He often gives us the unexpected because it is exactly what we need. And when the unexpected comes along, it is not always something we want. God’s Word says that we may plan our steps, but the Lord directs our path (Proverbs 16:9). Stephen is not the baby I expected or planned for, but he is my baby and that makes him perfect to me. Being his Mama has helped me to expect the unexpected and to not be afraid of it. I have absolutely no idea what the future looks like. Yes, there is that nagging voice that tells me to be afraid of it. But God’s Word also says that we are not to be afraid of the future because He has great plans for us (Jeremiah 29:11). He has incredible plans for my little boy. There is something special about him that goes beyond any type of special needs. And knowing God has Stephen in His hands...that I can expect great things no matter what the future looks like...is at this moment enough for me.