If you’ve suddenly found yourself facing a mountain of questions and anxieties you never thought you would face concerning your new baby, questions and issues that you’re not sure you’re equipped to deal with, this post is for you. Finding out that Alan was going to “most likely have severe cerebral palsy and mental retardation” in the NICU was a devastating blow to my husband and I.
Despite the fact that both of us have had experience working with people with disabilities (Jim worked with people with disabilities in various capacities for about a year and I worked with people with special needs during and after my studies for my Masters in Music Therapy), finding out that we would be raising one of these wonderful souls in a challenged body ourselves was overwhelming.
I remember the initial numbness I felt, in complete shock, knowing that my life would now be drastically altered whether I liked it or not, and having no idea if that life was going to seem manageable or if every day from now on was going to be colored with a deep sadness over my precious boy. I remember crying in the NICU while holding him all hooked up to wires and with this crazy, wire-filled cap on his head while undergoing a 24 hour EEG to make sure he wasn’t currently having seizures, since they are almost guaranteed with a Schizencephaly diagnosis.
I remember crying multiple times alone in the NICU with Alan, just overcome by the heaviness of his diagnosis and my concern for him, and quite frankly, for myself and the rest of our family. I remember looking at him and these questions popping into my head:
“How can I ever look at him from now on and not see him as broken? Will I always feel this deep sadness about his condition every time I look at him? Am I anywhere near capable of handling this?”
It was at that low moment that I believe God brought the story of Jesus healing a man born blind from birth in John chapter 9 into my head. His disciples asked him, “Who sinned, this man, or his parents, that he was born blind?” Jesus answered them, “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.” Alan wasn’t born this way because God looked away for a second and things went wrong. Alan isn’t an “oops.” Alan was formed by God this way, for His own, mysterious purposes.
And maybe I’m not capable of handling this on my own, but as the Apostle Paul writes in 2 Corinthians 12:9, “My grace is sufficient for you, for My strength is made perfect in weakness.” I have been learning the secret of giving my worries immediately up to God and then standing back, watching for what He will do to alter my attitude or my situation. Yes, I can be very weak. We all have moments of failure. But God is calling us all to lay down our own attempts at strength and to incrementally learn to simply be available vessels for Him to work in and through.
Yes, this has been hard. The first four months went like: treading water, starting to drown, someone reaches down and lifts us up, we get a few desperate gasps of air, then we start the cycle over again. But now that Alan is seven months old I can honestly say we’ve turned a major corner, and things are survivable. And beyond that… I can’t even begin to tell you how much I am connected to that little boy on a soul level.
If you are at the beginning of this journey, please hear me, YOUR CHILD IS AN ABSOLUTE TREASURE AND A GIFT FROM GOD! This may not be clear to you in your desperate moments when you are just so worried and stressed out and sleep deprived. It will most likely feel like more than you can bear and it will, if you will let it, most likely drive you to God in utter dependence like nothing else ever has. But trust me, if you can patiently endure, keep begging God for mercy, and keep doing everything you can on behalf of your precious child, YOU WILL NOT REGRET IT and your life and your soul will be forever blessed by this experience.
This experience will deepen you, will stretch you, will bring new strength to your inner person in ways you cannot now imagine. If you’re anything like me, there will be days it seems the opposite is true. There will be days your behavior is closer to that of a raving lunatic than a nurturing mother. If you’re blessed to have an amazing partner, there will be days your spouse will have to step in because you cannot function, hopefully just for a few hours at a time, or for a portion of or an entire night so you can actually get some sleep. But if you can just keep pressing through the hard, hard stuff, giving your worries up to God on a daily, sometimes hourly basis, there will be so much joy waiting on the other side.
You see, that sweet, strong soul trapped in that body that doesn’t work quite the way most bodies work, is probably one of the most awesome people you will ever have the privilege of meeting. If you do the work of investing, sacrificing, and pouring into that little life, you will get to see firsthand such a beautiful soul beginning to stare back at you, once he learns how to focus his eyes on you and realizes that there is a world going on around him that he can engage with in some way, and the beauty of that little soul will at times take your breath away.
These children can’t do what typical children do. But that in no way makes their souls any less beautiful. If anything, it makes them more beautiful. These children have to learn early that life is hard. But if they’re lucky enough to have parents who love them through the hard early days, they learn that they are intensely loved and they learn the comfort of that love in the midst of so much discomfort and challenge. They don’t have the privilege of growing up feeling like they are the best and the brightest on the block. They know they are dependent on others. But if they can learn that they can depend on others to care for and to love them, their souls will shine with a beauty that is astounding, and it will be most beautiful to your eyes, knowing the soul that lives behind theirs and the hours of love invested into that soul that helped it to shine the way it does.
Every child’s story is different, so I can’t tell you how long it will take for you and your family to get through that really tough first season. And it’s probably inevitable that there will be multiple seasons that feel really tough (though for our family, hopefully not as tough as the one where we hardly slept for four months). But what I can tell you is that, from my experience, that initial shock and the really rough season where your family is adjusting to having a baby with special needs does pass and you will eventually find something that feels like normal.
And realizing that our family had finally found it’s new normal when Alan was about six months old was such a Hallelujah moment for me! It was around this time that he started sleeping a good four hours in a row before needing a little rocking or repositioning and then would sleep another few hours before needing to be fed again. It was actually survivable between the two of us!
If you are a more seasoned parent of a special needs child reading this, or anyone who has experience working with this population, I would love your comments and a few encouraging words for any new parent of a special needs child to read!
I’ll close out with a video of precious Alan, around the time he started cooing, about a week ago. You will see in this video how hard he works just to get one little coo out, but oh, it is worth the wait! He has been getting increasingly vocal lately, which has been extremely encouraging and smile-inducing for me. I pray that this post has been an encouragement for all who know and love people with special needs! God bless.