Baby Kyle
I think a lot of my anxiety over the past few weeks has to do with the uncertainty of Hannah’s prognosis. Seeing her disease progress, realizing that she is falling farther and farther behind developmentally, dealing with more complicated medical issues, etc.
But a lot of it also has to do with Baby Kyle. He was a sweet little boy who was just a month older than Hannah, who had been diagnosed with Gaucher’s type 3. He had been doing reasonably well. He didn’t have much significant health involvement outside of developmental delays. His mom put him to sleep one night, just as she always did. He was full of smiles and just a happy boy.
The next morning, without any warning, he was gone.
Hannah was in the PCU at Texas Children’s Hospital when this happened. When I found out what happened, we were just a few days shy of being transported to Las Vegas’ Sunrise Children’s Hospital.
To this day, I cannot get him out of my mind. I always thought there would be some warning, some significant progression of this disease. Something to give us notice that we had to prepare ourselves for what could happen. He was doing seemingly well — what was it that happened that took him away so suddenly from his family that loved him?
Every night since when I put Hannah to sleep for the night, I worry about the “what if…” If I am honest with myself, I know this is a large part of the reason that I take the “night shift” with Hannah, staying awake and keeping an eye on her until 3 am to 4 am each morning.
Before I decided to take this “night shift,” Hannah had already pulled out her trach part-way twice, got a mucous plug in her trach (plugs the trach so she has a hard time breathing), and has been dry multiple times. I don’t want to take any chances that something like this could be something that would cause more problems.
But I also know that this is not healthy for me either. I have not slept a full night’s sleep since we brought her home from the hospital. I sleep 2 to 4 hours at a time, 2 to 3 times a day. Ethan and Abby are used to me taking a 2+ hour nap almost every day, and they know it is because I am up with Hannah. My day gets wasted as I am exhausted all of the time or sleeping when I could be getting things done.
But I also don’t want to waste our nursing hours on a night nurse. Most of the time, I don’t have to do much to Hannah except maybe adjust her trach collar a few times (untangling her when she wraps it around her neck or body), suctioning her if she gets junky (which is not much except for when she has trachiitis). I can’t justify losing our daytime nursing where we can spend time with the other kids and getting stuff done because Hannah is a constant during the day when she is awake.
Kyle, sweet Kyle. I know your fight is over and you are free of this crappy disease. Please, please keep an eye on my sweet Hannah, protect her, and keep her safe. I will never forget you and your adorable smile.
I hope that you know how much we love Hannah and you even tho we have never met. We pray over you all the time. If you keep agonizing all the “What If’s” with Miss Hannah it is going to drive you CRAZY. You are going to be tired, grumpy, sad, unsatisfied in many other parts of your life. You will miss the small things that would bring a measure of happinesss, a smile, a look, that extra long cuddle. Could you splint up your nursing hours? I will pray that GOD will keep and eye on Hannah and ask for his divine protection over Hannah, over you, Over Hubby’s work sitation and your other home to be sold. I pray for peace and rest for you.
I still cry for Kyle and Melissa. And I hug Bertrand extra tight before bed every night. I know Kyle is finally free from suffering, but it’s still not fair. He was a wonderful little boy and he deserved a full, wonderful life. :'(
No words… just hugs….
Oh how beautiful a picture. I’m so sorry to hear about Kyle and totally understand how this can cause those feelings in you. I agree with Lisa. Try, as hard as I know it is, to not spend too much time on the What Ifs. You need your rest, Carrie, please try to find a space, time, moment when you can make that happen. Like you said it’s not good for you and you’ll be no good to anyone else if your body shuts down and stops on you. Love, hugs, kisses, prayers, well wishes… I love you guys.
Carrie,
There are no words to describe how painful it must be to loose a child especially without warning. Reading your blog about Kyle(may he rest in peace, the dear sweet child) really made me feel extremely sad. Its understandble about your “what if’s” and how you stay awake keeping a close eye on Hannah. I pray with all my heart that God will keep Hannah safe! I pray to God that you can sleep a little better, I pray to God that Bobby finds work soon and that your house gets sold soon. I pray to god most of all that there could be a MIRACLE a Cure for this awful desease!! I love you all dearly and I hurt when you hurt!
Susan
when we were fighting for our sons life, i broke down in the doctors office. i kept saying “i am so afraid”….”what are you afraid of?”…”i am afraid that ezra is going to die”….a black hole of panic, being so out of control and not able to do the one thing a mother is supposed to be able to do: keep her child safe. like holding sand…it just keeps slipping away. he said very softly “ezra is going to die, maybe soon maybe later, maybe before you and maybe after you. we will all die.” what an awful thing to say to someone! what a perfect thing to say to someone. what a wonderful gift to be able to say that to someone. it didn’t make the panic go away, or the wish for my little boy to be better, for another day with him, to see him get big, to share life with him….but it did cause a shift in me…some measure of acceptance, some room for breath in my lungs. just a little space.
these children bring us close to the reality we all live: nothing is certain. we are not allowed the comfort of assuming things will be a certain way tomorrow. we are asked to do the impossible to open up and love and dance and live in full knowledge, eyes wide open.