I almost used the "donkey" word cause that is how I feel right now. …
Kick in the Gut
So sick of OMS……repeat SO SICK OF OMS.
I was speaking to our doctor’s nurse (she is fantastic btw), and we were discussing how we can get the OT/SLP/PT here at the house through home health. It has been approved through insurance, but we are finding difficulty in anyone who will work with pediatrics. It has been a bur in my saddle.
I called our local hospital and they said they could do it. Yay. Then the nurse from our doctor’s office called and said she was facing resistance. She said that because Hunter is “medically fragile” that they will not see him. He is not a do therapy and get better kind of kid. He is a do therapy and maintain his status type of kid.
I’m surprised I heard anything past “medically fragile.” I think I did miss a lot because tose 2 words, used in a sentence with my son, cut me to the core. The definition of medically fragile is defined as a chronic physical condition which results in a prolonged. dependency on medical care for which daily skilled (nursing) intervention is medically. Maybe I knew that, deep down…..but hearing it forces me to come to grips with the diagnosis that my son has.
The longer he is symptomatic, the more chance of him having permanent brain damage because this is a neurological condition. I sit here and watch him and I see that he is shakes….I see that he struggles with walking….I hear his speech issues….his food issues….his eye twitching…..and I think he is medically fragile. There is no cure. There are massive drugs he has to take to maintain his health but those drugs have massive side effects that has adverse effects on his health. It is a double edged sword.
This disease is horrible. It is uncertain. It is uncurable, by man’s standards. I hate it but I’m reminded of my sweet friends Mr Cliff and Ms Jan…..as I was telling them the latest in the saga of our life, at church one morning, Ms. Jan looked at me and said “but Brandi, you have to remember this one thing…..1 Thess. 5:16-18 “Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” *Emphasis is mine* It does not say “be joyful when things are great and everyone is behaving and healthy.” It says to be joyful ALWAYS. Be thankful in ALL circumstances.
So…what am I thankful for?
He is alive.
He is with us.
He has an amazing support group.
He has doctors who are going above and beyond.
We get the same nurse for every treatment.
I have a great relationship with his mom.
I am able to email his mom and keep her up to date.
My sisters. My brother.
My parents and my mother in law.
The support of so many people that I know and love and that I don’t know.
A wonderful church, who prays for him.
All our prayer warriors.
Kids who see a need and meet it.
There is so much to be thankful for………….even on the bad days.