***This isn’t written with everyone in mind, but all are welcome to read it.***
IMPORTANT: Carter, my son, is still alive and well–smiling as he ALWAYS does.
That being said, last Tuesday, my wife and I received some discouraging news. While our son–Carter (7)–has a healthy heart, his brain will eventually stop controlling it. Most of the people who will read this will have had some knowledge of Carter’s life. It has been full of struggles to overcome this or that. Cerebral Palsy is a condition which leads to all types of medical struggles–great or small–and Carter has tangled with many of them.
We were told very early on that Carter would not make it to age 5. Being that we recently celebrated his 7th birthday, you can already tell that Carter has spent much of his life proving doctors wrong. The most recent diagnosis he received is the most discouraging one we’ve received, because it has been preceded by cardiac events that make the possibility of his not making it through one of them seem very real. The increasing number of the episodes Carter is experiencing, only acts to reinforce the doctor’s findings. While not placing a time frame on Carter’s outlook, the impression is that is might be sooner, rather than later.
We remain hopeful that Carter might, once again, prove doctors wrong–as he so often does. We remain hopeful that God might, once again, see fit to deliver another miracle which allows us more time with our miracle. However–because we trust the amazing medical staff which God has led us to–we are preparing ourselves for any outcome.
Once we found out, we began to make plans. Carter has always loved the water, but has never been to the ocean. We decided that we would do what it took to ensure that Carter would get to swim in the ocean. Once news began to spread through our friends and family, everyone put their effort into discovering a way to do this, as well. It has been amazing, and we have truly been humbled by all that everyone has done to help. Our family will be going to Florida in July, so Carter will get to swim in the ocean.
With all that said, I feel as if people might need some guidance on how to approach the situation. Some instructions–if you will–for handling my son’s impending death. How do I treat Carter? How do I treat Chris and Emily? How do I treat their kids? I will attempt to give you some guidance on this and more.
Carter isn’t dead yet. Don’t pity Carter. He has done so much in his life. I would argue that he has experienced life much more fully than any of us could begin to imagine to. It is easy to look at him and have your heart break for him. That, in turn, might lead you to feel uncomfortable or uneasy around him. However, do not let that stop you from interacting with him like you would at any other time. He loves people and will show you that love, if you allow him.
It isn’t our job to help make you feel better about this. Speaking of uncomfortable or uneasy, you might experience this at one point or another. Your heart might, very well, break over knowing Carter’s story and how much this is going to hurt Emily and I. Please, feel free to have your own feelings about this. However, do not expect Emily or I to say the magic words which release you from feeling this way. The circumstances are sad ones, and we will be sad in the midst of them–and we do not expect that we will be the only ones to feel this way. However, it isn’t our job to tell you “it’s okay” or “he’s gonna be going to a better place.” We don’t expect you not to cry, but don’t expect us to be the ones to dry your tears. We will have enough of our own to contend with.
Don’t tell us “he’s gonna be going to a better place.” Carter belongs here and with us. Particularly, Emily and I have been dealing with the emotions that go along with an event like this. Because of our deep and abiding relationships with God, we are heavily relying upon his graces in this time. However, there is some anger that we–at different times–will feel towards God. My belief is that God can handle a bit of that from us in times like these. He’s–you might say–a big boy. Besides, our faith will survive through this. What we don’t need is to hear people spouting religious platitudes. Offer us a shoulder to cry on and a warm embrace. Hold us up in your prayers as part of the larger community of faith. Don’t start reciting scripture or offering us stale, Christian niceties.
That last paragraph might not be as theologically coherent as I typically like to be, but I don’t have to be theologically coherent all the time–and I might be able to take advantage of waivers in a time like this.
Do know that Carter might understand and have a better relationship with God than any of us might ever hope to–and follow his example. Carter does not walk or talk. We know generally how he’s doing and how he’s feeling, because Emily and I are his parents. We watch his face and use our parental instincts (Emily’s are better than mine) to know how best to care for Carter in any given situation. It is our belief that what Carter lacks in ability to communicate with those around him, he makes up for in his ability to experience God’s holy presence. As close as Carter has come to death’s door–and survived–there is no way that God hasn’t been with Carter to comfort him and keep him. When Carter is at his sickest, it seems that he always find a way to smile. We do not know for sure, but I think he is feeling God more intimately than any of us could possibly imagine we could. That’s why I think Carter has beaten the odds so many times before. If he teaches you nothing else, it wouldn’t matter.
As a father, this post is more catharsis than actual instructions–but I hope you read it well. This post isn’t written in anger or with any malice towards anyone. I just think people sometimes don’t know how to respond to their friends and family who face situations like this, and this is what I can offer to help. Whatever it is you do in this time, my advice would be to err on the side of love. That can never steer you wrong. Thank you for reading.
We covet your prayers in this time.