The dark side of special needs children

There is a dark side to having a child with special needs. The side that few parents talk about, but everyone thinks at some point in their journey with their child. I don't know if I can even really type them and will most likely just skirt around the real issue. You see, there's so much that can be done medically today. Children that 25 years ago would have succumbed to their disorder are now living much longer lives than their peers of those years gone by. What is left are children who are kept alive by machine and medicines who grow older but never grow up. There never comes to be a point when the parents can just be told, "There's nothing more that we can do" because there's always something that can be done. It leaves parents having to make painful decisions between two horrible paths.

Here's my example. Two years ago, Praise's scoliosis got past the point of no return. What that meant was that 10 years of back braces did not correct his scoliosis, but only kept it from needing surgery. His curve got past the point where a brace could hold the curve from getting worse. Our decisions were to let them do surgery and place rods to fuse his backbone or let him slowly deteriorate over many years and eventually he would suffocate due to the immense curve in his back. We just couldn't let him suffer like that for years and years and opted to go ahead with surgery. I believe now he is suffering pain and muscle spasms due to his back. It grieves me immensely that he is in pain and I can do absolutely nothing to help him.  Yes, I gave him the tylenol and brought him to the physical therapist to work those muscle spasms out, but I cried and cried because he was in pain and I could do nothing to totally alleviate it or distract him from it.  He couldn't stand for a day which panicked me because how was I to care for a child almost as big as I am who couldn't even stand up?  I wound up with Shingles due to stress. 

 Sometimes, I secretly pray that God would choose for me and take him somewhere without pain or suffering and then panic with thoughts that God would actually answer that prayer. But, if you ask any parent of a special needs child who is physically and mentally disabled, I would guess that 100% of us have felt that very thing at some point in their child's life. There are times when I wish he would have been miscarried because then this life of pain on his side, deep deep sorrow on Big B and my side, and the overwhelming feeling of how are we going to take care of him would not even be an issue. We would have grieved, but there would have been an end to the grieving. In the midst of the joy that is Praise, there is grief. You see, Praise, while he continues to get bigger, is not getting older. He is still very much a toddler. He is 2-3 inches away from my height and weighs 25 pounds less than me. He is 13 years old and just starting his adolescent growth spurt. It scares me and I wonder how can I take care of someone bigger (even much bigger) than me. But, medical advances, while keeping those who are able alive longer and longer have also kept those who are disabled alive longer and longer.

 In comparison, my life is fairly simple. I have a medically stable child who is very happy to be around people and loves to interact. He really can be a joy. But that's not always the case. There are families out there who have children who's only means of communicating are with their eyes because that's all they can move. Who are hooked up to respirators and feeding tubes keeping them alive. Or families whose children can't control their rage and take it out on people or property. Or, the medically fragile children who wind up in the hospital every month, sometimes several times a month. These children change family dynamics, burn mother's out emotionally and physically, and cause an 80% divorce rate in their parents. The medical establishment while being a blessing can also be a curse because there's never a point when you can say stop. These children bring joy, but there's an underlying sorrow. There's always that pain underneath.

 But, God is a God of the brokenhearted, he heals those crushed in spirit. He has a special place in His heart for the "least of these" and those who care for them. He has refined me and made me into someone who is stronger and has learned not to sweat the small stuff. There are so many things that I've learned really don't matter because I've learned what does matter ultimately. My priorities have shifted and I am a different person because of it. Would I do it all over again? Would I choose Praise as he is again with everything we've become and how we've grown. No. I'm glad God had the choice because He obviously knows more than I do. In eternity's gaze, all of this will make sense and it will have been for His glory and for His purposes and I will rejoice. But, for now, I live in the shadowlands only getting glimpses of that future glory.