Originally posted Sept 14th, 2015
What’s it like having a medically fragile child who can’t tell you his symptoms or what his body is feeling?
You hold your breath. You check him over every day for any sign of illness, injury and you hope you find nothing. When there is an injury or illness, you hold you breath. You treat it and hope it doesn’t spread. You keep the dark thoughts in the back of your mind from entering your conscious mind. You pray the doctors are right in their diagnosis and are doing the right thing.
You spend a lot of time researching. And hoping. Hoping something will add up. Hoping the symptoms will come together and make sense.
You spend a lot time teaching. Teaching the language of pain. Hoping he will understand and be able to start telling you. And knowing how hard it is to teach your child the different types of pain. And silently crying on the inside when he does tell you the pain he’s in. Knowing every day he’s having pounding headaches and he’s telling you it feels like sharp knifes.
Then you call doctors. You research. You try to put the pieces together. Treatment begins and you hold your breath. You hope it’s the right thing. But you prepare for it if it’s not.
Sometimes you have to protect your child instead of being able to hug and kiss them. This may be one of the hardest things. When your job just becomes protecting and keeping him from hurting himself because the pain inside himself is too great, you often weep at night for the choices you must make. You just want to hug him and tell him it will be OK and you will make it better. Nothing breaks your heart more than watching him go through this. You feel helpless and try to stay calm and keep searching for answers.
It’s one thing to be medically fragile, but it’s another thing to not be able to explain your symptoms. Everything is locked up inside his body, and you feel like you have to be a behavior detective to figure out what the symptoms are and the cause of those symptoms. It’s a vicious circle. Through it all, you hold your breath. You love harder than most people can imagine because you never know what the next moment will bring. Will there be a dimple smile and tears of happiness or will it be cries of pain?
So you are often holding your breath. And loving. Loving harder than you ever thought imaginable. And when you hug, you hug deeper, stronger and longer than you knew was possible. And you live, live a fuller life than you ever imagined and cherish each moment your child is well and happy and smiling.
And you say I love you. Always. As much as possible. So he will always know your love is there and never wavering.
“When they ask how far love goes, when my job is done, you’ll be the one who knows.” — Dar Williams.
What you said Erin is something that 99 percent of the world will never experience dealing with an individual who is non verbal and has a hard time expressing themselves with regards to telling you about their pain.
ReplyDeleteThe inventors of AAC devices I'm sure never imagined how powerful their devices would be with regards to Kreed's many conditions and how he expressed himself even under so much pain.
You did an amazing job teaching Kreed how to internalize his pain and then to express his pain levels to you. I have watched and rewatched the videos you posted on YouTube and I often wondered how Kreed internalized his pain and then used his device to ask for help .
Thank you very much for your Blogs they really give insight into the often avoided part of raising an individual with special-needs and who are medically fragile. Most Parents do not want to share their child's disabilities or medical conditions for fear they will be rejected or for fear that people will be afraid to be around them. I suspect many Parents are at the end of their rope and often leads to other unwanted consequences.
Wishing you good health and I hope you will continue to write blogs as powerful as this one. You chose very good quotes and your writing style speaks to me in so many ways.