Posts Tagged ‘epilepsy’
The Life He May Never Get To Live
My son, Rowan, will be two in January. At four months old Rowan was diagnosed with Tuberous Sclerosis, a 1/6000, rare, genetic disease that causes epilepsy, tumors to grow in all major organs and development delays including autism. My love for him is bigger than life itself. I want nothing but greatness for him, for him to flourish in every way imaginable. And here it is ladies and gentlemen…the “but” we’ve been waiting for: But… But I hurt FOR him. I cry FOR him. I think about the life he…
Read MoreJumping Into the Rabbit Hole
It was 2016 and we were feeling pretty good about things. The psychiatrist recommended an occupational therapist to use as a way to address our son’s up tick in outbursts. Within the last year the explosive tantrums were not occurring with the same frequency (yay), but when they did, they were fierce (nay). And when they were fierce there were times I would get sad and sink into what I call the rabbit hole. I would feel sorry for myself and lament that other families did not have to deal…
Read MoreI Have Hope But My Heart Still Hurts
My baby girl’s body is changing. At 9 years old I can see the beginnings of the tell tale signs of puberty. I am really hoping it will be a long way off as I am not ready for all that comes with that yet. Isla still needs a lot of help with toileting and is still in a night nappy so I do not want this to happen any time soon. My heart hurts. She is growing taller and her last year’s clothes do not fit. She has gone…
Read MoreWhen a Doctor Told Me I Wasn’t a Terrible Mother
So, here’s a thing that happened the other day. I took my son Ivan to the dermatologist to have a look at his moles. We have a history of melanoma in the family and it seemed like the responsible thing to do. Are moles Ivan’s biggest challenge or at the top of our medical list? Heck no! Ivan is totally blind, nonverbal, in a wheelchair and he has uncontrolled epilepsy resulting in multiple seizures a day. We see about a dozen different specialists and dermatology is definitely at the very…
Read MoreI’m Thankful For You: My Husband
(Editor’s Note: This article was provided by Jamie Happel and is part of Cooper’s, ‘I’m Thankful For You’ Campaign.) This November I would like to honor and thank my husband, Chris Happel. He is an absolutely amazing husband and father. Chris and I met last year at the hospital we both work at. He is an Emergency Physician and I am a Radiographer and Mammographer. Fast forward a year later and we are now a crazy, fun and loving blended family with six children. Our children are ages 20, 13,…
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