Tuesday Afternoon.. Reflections of A Mother With A Special Needs Child
No. .. He’s not.
He’s a typical kid. At the moment, one of his biggest struggles is a speech delay. He’s coming along nicely however and his vocabulary is growing all of the time. He does a lot of other things that 8 year old kids can’t do. He runs, plays, reads books and appears to enjoy being 8 ( 9 in June )
He’s got challenges but they aren’t so challenging that a woman being given the diagnoses is forced to lay in the fetal position and cry until she can’t do it anymore.. I vowed back then to make sure that I was available to women who are faced with the same thing that I was. I do this mostly by being involved with different online support groups. I’ve been farmed out to friends and associates of friends and associates. I have no problem with that. I invite it!!!!!
It’s my goal that people get correct information so they can make educated decisions based on facts and not fear. It’s been a long and sometimes exhausting journey, but I don’t ever regret for a second making a decision to continue my pregnancy ( never in danger of an abortion anyhow ) or keeping my son ( no danger there either )
The only regrets I have is allowing people ( mostly medical professionals ) to make me feel as bad as they did. Also, not learning sooner to be assertive and more demanding. Self advocacy and being the advocate for your child can be exhausting. I was surprised to witness the lack of professionalism and attitude of people I thought were there to help me and be supportive. I would like to think that my situation was isolated, but based on the stories of other parents I’ve met, it’s not.
I am either lucky or unlucky enough to have an uncle that raised two girls with cystic fibrosis ( Heather and Holly ). My uncle Mark spent almost 30 years dealing with doctors and staff and was able to share his horror stories and some methods of dealing with situations and how to be heard, get your point across etc. I’ve passed them on many times.
One thing that stuck with me was the story I call “Called a doctor” It was when I told him a story about something someone had said to me and the way something had been handled. My uncle Mark said to me, It doesn’t matter which medical school a person attends to become a doctor. It doesn’t matter if they graduated at the head of the class or the very last in the class. They are still called doctor. He is not God, he is not special, they are not better than you. He is just a doctor.
I admit that this isn’t the case and won’t be the case for everyone who have been in my position. There are a lot of wonderful doctors and providers out there who are amazing and will do just about anything for their patients and family. I found my dream team at the Children’s Hospital of St. Vincent in Indianapolis, Indiana. also known as Peyton Manning Children’s Hospital. I can’t say enough good things about that hospital.
I wouldn’t recommend Riley Children’s Hospital to my own worst enemy. Feel free to e-mail me for my very long list of reasons as to why I won’t set foot in that hospital ever again. Leaving Riley was the best decision I have made so far in Dominic’s health care.
I really don’t have an ending for this.. It’s just a few thoughts swimming through my mind right now.. I’m gonna go and re tuck Dominic into bed and make sure he’s got his blankets around him. It’s chilly in the house tonight.. I’ll probably give him another kiss on the forehead and whisper that I love him and I’ll see him in the morning.
Seriously, I love that kid. Just the way he is.