This Sunday, February 23rd, is a very special day for our family. 13 years ago, Daniel Grady Schmidt, our second child, was born not breathing. It’s just “one of those things” that can happen that you never think will happen to you. We were blessed that he survived.
He was diagnosed with cerebral palsy, which is a result of damage done to the part of the brain that keeps the electric signals going to the right places. For example, when you want to pick something up, your brain sends signals to arm, hand, fingers, etc. and you don’t have to work to make sure those signals don’t go to your feet or your heart – the brain takes care of that. But not for people with C.P. So, people with CP can be fully functioning with little to no detectable problems, or they can be completely nonresponsive – or fall anywhere in between. But kids with CP can also make huge leaps: they have been known to suddenly start speaking or walking at 12, 14, 17 years old. Basically, CP is unpredictable because it damages the precious brain, and our bodies are incredible marvels, fearfully and wonderfully made.
So, Daniel was very, very sick when he was born, and things were not good. He had several surgeries, which included implanting a G-button, a port in his tummy from which he took all of his meals and meds. He was the sickest baby in a 110-bed NeoNatal ICU at one of the top NICU’s in the country when he was born. And yet, “just” 32 days later, he had made enough huge leaps that he was able to come home. He was originally thought to be deaf, but in fact his hearing was quite acute – it just didn’t always work right. He was also visually impaired, and had glasses before he was a year old, which he ripped off his face constantly until he had laser surgery to fix. He was diagnosed quadriplegic, probably the hardest diagnosis for us as parents, because he could move his arms and legs – he just did not have enough control. One of the many things we learned, though, was that even a difficult diagnosis was our friend – because it meant he qualified for the kinds of support he needed. He could always ‘outgrow’ a diagnosis, but getting one was critical for care and accommodation.
Seven months after Daniel was born, my wife left her very successful career to become his full-time caregiver (we also had his brother, two years older), I left my teaching position, and we moved to St. Louis for me to attend seminary (Why? Read here). St. Louis, as it turned out, was probably the best place in the world for Daniel to have been for his first 4 years of life, because of the quality of care for kids like him. God knows what He’s doing…
As he grew, Daniel looked for the most part like a ‘normal’ kid. His nutrition was medically managed, so he had perfect hair and perfect skin, and he was right there in the perfect ratio for growth at every checkup (he was a beautiful boy). His wheelchair was designed to look like a stroller, and it was my wife’s mission to give him as close to a ‘normal’ life as humanly possible. She sacrificed herself physically, mentally and emotionally to do it. I carried a full class load, a full-time job, volunteer hours at a local congregation, and still tried to be a good husband and father. Ours was a hard life – but it was also good beyond description.
And Daniel was awesome. There were no filters on him – he was pure love and pure emotion. Physically, he was trapped in a body he and his mommy worked harder to conquer than anyone I have ever known. Mentally, he was as sharp as a tack, though not everyone could tell, because he never learned to talk. He continued to work at it, though, and we learned to understand most of the sounds he made. He LOVED people. He was slow to respond physically – sometimes his entire body would move before his arm would go the way he wanted it to – but he would work hard to shake your hand or hug you if you were patient enough. When I was preaching, he would hear my voice and laugh and call out to me from the back row where my wife sat with him and our other children. That is something I dearly, painfully miss.
He was very sick while in St. Louis, and stopped breathing several times, needing to be resuscitated each time, including more than once by my wife. I don’t think she will ever be able to take a CPR class again because of that memory. When he was three, Daniel was on a respirator in the ICU and they were trying all manner of tests and antibiotics with no success in determining what was attacking his breathing. At one point, he seemed ready to come off the respirator, but he crashed and had to be resuscitated again before going back on. After that, our doctor told us we needed to have a conversation about whether or not we were going to keep resuscitating him, knowing that each time it could do more damage to his brain. There were a whole lot of tears shed over the possibility of having to decide whether or not to allow our son to die or to keep fighting for his life.
But before that conversation ever took place, God healed Daniel. I’m not being trite, either. All of a sudden, Daniel started breathing on his own – and then he was off of oxygen completely! And his doctor, a man who knew our family and our faith well – told my wife there was no medical or scientific explanation for how or why Daniel was suddenly OK, but that he knew that we knew exactly what had happened…!
For the next 3 1/2 years, Daniel was healthy. He had truly been healed and given back to us right at the brink of thinking we were going to lose him. And life was, again, very hard, but very good. My wife potty-trained Daniel, something all of his doctors and therapists were astounded by. He was even learning to walk with the aid of a walker! We were making progress on communication devices. And, after an impossibly difficult fight with the school system that I am incredibly proud of her for, his mommy succeeded in getting Daniel into a regular classroom with an aid, something he was absolutely capable of and which would have been awesome for him (the special needs school he had been attending had not been good for him). I began fantasizing about how awesome it would be the next year, when all three of our children would be in the same school!
And then, on September 11th, 2013, on the morning he was to begin in his new classroom, without any warning at all, he didn’t wake up. The doctor ruled it cardiac arrest. Probably, the brain signal for his lungs to draw breath got confused, and he just stopped breathing peacefully in his sleep until his heart stopped. And that was it. Our beautiful and incredible son was just… gone from us. A beautiful, incredible, vibrant boy who was full of life… was suddenly… not. And the world stopped making any sense.
6 1/2-year-olds aren’t supposed to die in their sleep. Parents aren’t supposed to have to bury their children. Life as we knew it was suddenly gone from us – and yet life kept on going. On top of everything else, there was the cruel reality that life was suddenly much easier. That was the sickest joke of all, because although it was in many ways easier, it was at the same time impossibly more difficult. It was a twisted ‘blessing’ we never asked for, we didn’t want, and would have given back in a heartbeat to have our child back. It didn’t help that some well-meaning people tried to point this out as a “bright side” or “silver lining” to our loss.
Daniel was love, personified. To know him was to be loved by him. For me, Daniel was my safe place. I could hold him on my lap and have an excuse to not clear dishes, or I could sit with him and laugh at how crazy everyone else was around us. He was my mini-me, and he overheated as easily as me, so he was my partner in getting out of the heat. My lap belonged to him from dinner until bedtime, and during Detroit Lions games, he would laugh so hard his body would jump right off my lap when I yelled at the TV. I sang to him and it relaxed him. The sound of my voice calmed him down. I miss touching his skin and holding his weight on my lap or my shoulder. In his eyes, I could do no wrong.
My wife was closer to him than anyone, because she was his hands and feet and voice. She fought for him, worked with him and pushed him. She played with him, fed him and cared for him. She had to do for him as a six-year-old what parents do for babies, and the two of them were an unstoppable force. Daniel’s mommy was a warrior for him.
We have learned to live as a family of four, but we miss being a family of five. We miss being a special needs family. We think about him every day, and sometimes, the pain is overwhelming. His memory is everywhere, even though we have moved twice, changing schools and churches since. My heart goes out to special needs kids and families, but I have to fight to hold back tears every time I see them. It’s still hard, 6+ years later, to know how to answer when people ask us how many kids we have.
And twice a year, we withdraw from the world and draw together as a family. On his birthday, February 23rd, we celebrate the same way we did when he was with us – we make a meal with his favorite tastes (although he could not chew or handle much food by mouth, he loved tastes of things like mashed potatoes or peanut butter) and we smash a piece of cake in his honor: he could not grab, but he could swing his arms, and so we would let him smash a piece of cake while he tasted the frosting, which made him laugh.
And on September 11th, the anniversary of his death, we write personal messages on balloons that we release as a family. We like watching them disappear into the sky, as though our messages to him are being carried up to heaven.
We grieve for our son. I still cry for him regularly; at the very least I get choked up every day. We miss talking about him, because most people are afraid to ask, especially when the tears start coming. But those are tears that need to be cried, and memories we are thankful to be able to share.
And yes, fellow Christians, we grieve with hope. But PLEASE don’t talk about rejoicing or being thankful that Daniel is in heaven or with God. YES, we are thankful that even though he is gone from us, He is with God – and yes, we have our hope set in the living God and His promise that we WILL see Daniel again – but there is no joy whatsoever in his being gone from us; we do not rejoice. We miss him with all that we are. We are thankful for the life we have, but we know we will not be whole again until we are reunited with him. 1/5 of our family is gone. 1/3 of our children is missing. And we will never be the same.
I pray that if you are grieving, you may know grief with hope. I pray that if you have ever been hurt by the well-intentioned words of those who have made light of or tried to look on the bright side of your pain, that you will hear that you are not alone in feeling like you do. I pray that if anyone has ever compared their grief to yours for good or bad, you are able to forgive their ignorance. And I pray that if you have ever done the above, you would stop, immediately. Apologize. And don’t ever do it again. No two losses are the same. Words cannot make anyone’s grief easier to bear, and you cannot take away their pain. Remember that when the Son of God learned that His friend Lazarus had died, “Jesus wept (John 11:35).” Stop trying to fix them – instead, love them enough to weep with them.
Have a blessed birthday, Daniel. Your family loves you.