Happy Birthday Kyle! We love you!
Today, on his birthday, I keep trying to write a letter to Kyle. I want it to be profound. I know he knows I love him and that I always have his back. I have held on so tightly and I am just starting to let go.
I have spoken about Kyle and his battle with Stevens-Johnson Syndrome before and today I need to say more because Kyle wants me to tell you more. Now coming out the other side of our personal horror movie, Kyle wants you all to know that he is ok and not only did he survive SJS and continues to survive SJS, he has learned a lot. Just other night as I was tucking in him in, we were talking and he said, “Mom, I am really glad you write about Stevens-Johnson Syndrome. I am really happy you tell people about me. I think people should know about it. And you know what, Mom?”
“Do you think I will ever know anyone else who has had Stevens-Johnson Syndrome? Because I would really like to meet them.”
“I bet we can make that happen.”
As I turned out his light he paused and said,
“I bet it will be a great book, Kyle.”
I shut his door and walked away, thought about where we have been and where we are now. People always say to Kyle,
“You must have something really important to do on this planet because you have been through so much.”
I never know if that is their kind way of saying,
“Dude, your life really sucks,”
or if they see what Dave and I see, one strong, resilient and amazing kid. Whatever is behind those words, I would like to think that it is true, “Kyle will do great things.”
He already has.
Nothing I have done has ever come easy and as I have mentioned, having kids was no different. For years after Kyle’s birth I suffered PTSD. (Long story I should post). The favorite part of his birth story he likes to tell people, “My HEART stopped. I was NOT breathing. They hit that BLUE hospital light. Called the resuscitation team. I was DEAD for FIVE minutes until they were able to bring me back to life.” His story is usually followed up with a, “YES, I was really DEAD for five minutes.” And then Eli says, “Mom, really? Was he really dead for five minutes?” I always come back with, “Well, he was not breathing and his heart was not beating for five minutes. You tell me.”
In those crushing moments when I am in say, a truck stop bathroom, painfully once-again miscarrying, I breathe in and think, “You are so blessed. Many people cannot have children and YOU have those two amazing boys. Remember, they saved Kyle! Get up, pull yourself together and go outside. Your boys are sitting in the car waiting for you.” That is what I do.
And now that Kyle is feeling better and back in the swing, I am starting to breathe. Because he wants me to tell you about Stevens-Johnson Syndrome battle, I think I can. What we have gone through has bound us together like some super crazy soul-strengthening polymer that you just cannot separate and not just Kyle and me, but Dave and Kyle, me and Eli and all of us. Because Kyle gave me the space to say these things, as I re-read what I have written, I think this post may be a little more for me than it is for him. Hey, but that is Kyle, sometimes misunderstood (especially when he was younger) yet you will not find a sweeter, more compassionate, more perceptive and thoughtful kid.
Just one year ago Kyle was still in Primary Children’s Hospital. After sometime he was finally able to get out of bed and leave his room. After this huge freedom had been given, each day Kyle would not-so-patiently wait for his friend to arrive. “Mom. Mom. Call him. He is not here yet. Call him.” Even on Kyle’s sickest of days, those days when his ice pack covered eyes were also covered by a blanket that was wrapped around his head and covered with a pair of sunglasses, just to make sure no light got in, well, even on those days, he always thought of his friend.
When his friend arrived, Kyle would sit up and say,
“Hey, do you want to go for a walk?”
His friend would always respond the same way,
“Yes. Whatever you want to do. Will you be ok?”
Then all of us would help Kyle get up and we would walk to the playroom. Kyle would often say,
“Mom I am so glad he can come see me. He understands and I do not feel so alone.”
Just a year prior, his friend suffered a serious brain injury and was still not back in school full time. He and Kyle would walk and talk, his friend patiently waiting while Kyle grabbed tissues along the way and his friend did not seem to mind watching Kyle spit out all the dead Zombie-parts-looking tissue he was shedding from inside. Nor did his friend mind Kyle’s moveable IV stand, his feeding tube, red-shedding-eye-tissue-sticky-oozy eyes and all that gross and thick mucus membrane Kyle’s body was letting go. They walked and talked and for those moments, it seemed like all the things weighing Kyle down disappeared, and in those moments, I could breathe.
Once in the playroom we often had to pause and again catch our breath. We would look around and see all of the children. Many of the kids we knew would be fine, many were dying, and if they were not dying, their lives had been forever changed by some terrible accident or illness. We knew early on that we had not cornered the market on bad things that happen to you. And in the playroom there was this coming together, where all the other families understood that too.
On one of the many random days we were in the playroom Kyle and his friend wanted to play Apples to Apples. There were about ten times as many volunteers as children so Kyle and his friend asked them all if they would play. The boys also noticed a little girl in a wheelchair and asked her and her mom if they wanted to play. She seemed a little out of it. The boys (because children can just ask these things) asked and found out that she had also suffered a TBI (traumatic brain injury). It was early on and I could see the fear and confusion in her mother’s eyes. Patiently the boys waited as her mother explained things over and over again. I ached for them:
“Her short term memory is really bad right now. They say it will get better.”
I could see her hoping those words were true. Kids aren’t dumb. All three knew they had a long way to go. And as I sat there, I was grateful that as Kyle, his friend and this little girl asked each other the Apples to Apples questions, their pain seemed to disappear.
That is how Kyle is. Even when things completely suck, and believe me there are times still that they suck so much that I have a hard time talking about it, and people, I do not have a hard time talking about anything. Kyle is always able to manage perspective. On those dark and very painful nights when we were alone in his hospital room he would always say something like,
“Mom, thank you for being here. I don’t want to be alone. Thank you for talking to my doctors. I am so glad you are here. Mom, are you ok? Mom, it hurts so much and I am scared. Thank you for making sure I am ok.”
In those moments when I had no idea what the hell was going on or what was going to happen, Kyle always managed to appreciate the people in his life, and as you are learning, life has not been easy for him. He knows life is not always smooth and because he knows life is not easy he gets how awesome it is to have people in your life who love you and who have your back. And guess what? Kyle will always have yours.