***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.
You always have our prayers.
My nephew, born with CP, will turn 17 years old this year and graduate High School. He’s living proof miracles can, and do, happen.
Love you guys!
Thanks, Christian. We certainly do hold out hope.
Great read! Thank you, Chris! Sending love to you all, always!
–Chuck
Thanks, Chuck.
Very well written! Sending you all our love, always! Thanks, Chris!
Praying. Love. Steadfast as your friend
Well Said, Chris. My heart breaks for you and Emily and your whole family at this time and I have thought of you daily since Emily called. No amount of faith can tame the question “why” when we are going through it or squelch all of the anger we feel when we don’t get the answers we want, but I believe you are absolutely right that God knows our humanity and loves us even more when we just don’t have it in us to praise. I believe with you that He is very near Carter and all of the children who can never tell us HOW He is near. My great nephew, Sam, who wasn’t supposed to see 2 years of age, just turned 13. He still weighs 22 lbs and he can’t tell us what he sees or hears, but sometimes he just squeals with delight and we know God has touched him again. Praying…
Love to you and all of your family.
Love to you and your family. Carter always makes me smile.
Oh Chris, that was so loving. We are so glad to have met you all and come to know Carter. We all learn from him, only the simple , basic things in life are important. To love and be loved!! Enjoy the ocean!!!!!
So Chris, when did you get to be so wise? You are, you know. God knew what God was doing bringing you, Emily and the rest of your family together. You all continue to be in my prayers. I love and respect all of you. Thank you for your thought filled words.
Chris,
You have always been an inspiration to me, and how you are handling this just reminds me why. Know that you and yours are loved and be prayed for by the Padgett’s.
Chris, how insightful—it is hard to lose a son but you have covered the whole spectrum of emotions that will be possible when your Carter leaves you. I appreciate these words more than you know. Thank you. Love and Prayers always.
what A Friend We Have In Jesus
I think of all of you often, and your family is in my prayers.
You are all in our thoughts and prayers.
Chris and Emily you are in our prayers daily. We love you.
Praying for you and yours that peace will abide with you as understanding in the midst of this journey is truly unfathomable. God continue to hold you in God’s hands.
Thank you for words of love, faith and sorrow. From Mesa you are in our thoughts and prayers.
wow! What a way to embrace it! Love you and thank you for being real and sharing!
Dear Chris, Emily and Family…Holding you in prayer. I only got to know Carter through photos and stories that Chris shared during brief moments during Gathering Weeks at UTS. He was an easy boy to love, even never having met him, and I could feel the deep love you and your family showered him with just through Chris’ words. I am so sorry for the pain you are having to bear and pray God will comfort and sustain you during the difficult days ahead.
Brandi Craver
Reblogged this on Notes from the Pastor's Office and commented:
On April 16th, 2005, Carter James Tiedeman was born. It’s been 8 months since his passing, and today would have been his 8th birthday.
I wrote this post in response to the news that Carter would soon die.
It only seemed appropriate to re-post it today.