God created special. When my son was born; it was a season of shock, fear, and confusion.
When I was pregnant, no one knew that something was wrong with my son. Sure, I had some strange symptoms, like nearly passing out when I sat in certain positions, indigestion, cravings for pickled okra and chocolate caramels, but outside of that, he grew in my womb and even moved fairly normally.
I did not want a genetic test, because truly, I did not care if he was a special needs baby. So, when he was born by a surprise Cesarean because he was breech. When removed from my womb, he was wheeled off to the NICU immediately. He collapsed after surgery, and within a week, we had his diagnosis of Prader-Willi Syndrome. The doctors painted a really bad picture for our future, but I clung to hope.
God created special.
After my son’s birth came the confusion, shock, fear, and then the complete unknown of what was going to happen to my son and our family. I vaguely studied his genetic syndrome in a textbook during my college days, but I knew not how it would impact our lives. I faced the days with confidence that God would carry us through this too. And He did.
But, the agony of watching my precious son’s struggle to move, eat and survive became my daily reality. Encouraging him to do his best, and even encourage him out of his world of silence tore at my heart. He lay like a rag doll on his blankets from the beginning, his little eyes roaming at noises he could not reach or interact with. He did not crawl until 2 or walk until 3. Then, he ran to catch up with the world, and the many other issues that come with his syndrome rose to the surface. But, it has gotten easier over time.
All I had ever lived was a normal life until that day. By normal, I mean, without special needs.
Normal is way over-rated, special is a blessing.
I was searching through some boxes the other day and I discovered pictures of our normal life. Birthdays, family gatherings and small town festivals. It was nice, and yet, my little special needs boy was missing with his loud curiosity and friendly personality. His joy over animals, balloons and trucks were also missing. He is the brother his bigger brother prayed for, and received from the Creator.
While we had what seemed to be everything before my special needs son, a normal-looking family with activities to fill our social lives, and family outings, we were still lacking spiritually. The Lord brought my special needs son to our family to push on the spots that needed to be healed, and areas that needed to be brought into alignment with Him. God removed those parts of our life which did not include my special needs son.
Through my special needs son, God also told me, unequivocally, that He wanted me to be sold out for Him, and He wanted nothing less.
He didn’t care what anyone else wanted, but He wanted me to be one with Him. My Jesus told me that if He wasn’t on the Throne, then even the bad stuff wouldn’t go well. Yet, if the Lord was truly my portion and my cup, then He would work out the rest of the details of my life, and bring us a few miracles too! So, in this journey with the birth and life of my special needs son, He made it happen. Was it easy? Not by a long shot.
Still, I will take special over normal any day, because what it did for our lives was give us a real life.
All children press on your abilities as a parent.
If you started out with a typical child and then found yourself with a special child, then you know this already. But, even if you didn’t begin your parenting journey that way, any child when you aren’t at your best, rubs you raw sometimes. I think that as special needs parents, we need this grace, you know? We should always strive for our best, but some days we aren’t at our best. Even normal families go through this.
When our little ones first arrive, we are thrown into a new world of medications, therapies, doctor and hospital visits. We try to attend to every detail we can, only to realize our human frailty before a mighty God.
I recently met a mom who has a little preschool boy, who happens to also be autistic. She was so full of hope, running through every therapy and possibility to stop this demon in its tracks. She was also exhausted and completely jumped down my throat, when I challenged her attempts to fix my son’s already special diet. He is healthy and happy, what more can a mother ask for? Special does not have to become normal.
Have you been there? Are you there? We have all had days like this, where we think we have all the answers, and we don’t.
We are in a marathon, not a dash.
The Bible reminds us of this in our faith:
Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, Hebrews 12:1
You know what? God did not make our special children perfect in the world’s eye view. Especially our children. As Christians, we are already called to be salt and light, but as parents to special needs children, we have to remember that God has a purpose for our special needs children. Perhaps God will bring a miracle to your child and heal him or her of their genetic disposition, but He didn’t heal my son that way.
Oh, don’t get me wrong. He has created miracles along the way, and done an amazing work in my son, but my baby boy is still special.
God continues to keep me focused on Him, and He continues to show me His plan and His will for my son.
He knit our children in their mother’s womb…Psalm 139:13
I pray that you find your strength in Him.