Monday, January 23, 2017

The Questions You Really Want to Ask?

Raising a child with a rare condition like rhombencephalosynapsis is something entirely different than most parenting experiences. If your child is born with a disease that has been studied and most doctors have heard of you have channels to gather information. When your child is among a group of people that number in the hundreds at best your channels are much narrower. I have been lucky enough to use the internet to meet some wonderful people and gather plenty of information. When I look back at my early days of gathering information what strikes me most are the questions that I really wanted to ask but didn't dare. I have compiled a list of some of those questions and I am doing my best to answer them with a few years of Rhombencephalosynapsis parenting under my belt. Here goes:

Will my child look normal?

Will anyone want to marry my son/daughter?

How am I going to afford all of these appointments and medical crap?

How the hell am I going to do this?

How will this effect my other children?

What do I do when the doctor caring for my kid has never heard of her diagnosis?

How long will my child live?

Will She be able to have children?

Will she make friends?

How will my extended family handle my child?

Will the kids at school think my kid is weird?

Will we need things like a wheelchair?

Why are her eyes crossed?

If she is different, will she grow up and move out or will she always need me?

What do I do if I have questions no one can answer?

Am I alone in this?

Will it effect my marriage?

1 comment:

  1. Hello. My name is Amie and my sister had Rhombencephalosynapsis. She passed away 5 years ago, a month away from her 20th birthday. I just wanted to comment on your question of 'how will it effect my other children?' My dad raised us as a single parent. He often felt guilty that my sister received more attention than I did. I personally was always very understanding of that part. However I struggled with the fact of knowing her life expectancy and HER day to day problems. Her lungs were very bad and she was on high oxygen , not to mention all her other problems. So what I am trying to say is, remember the siblings may be in emotional turmoil as well. Sending hope and love your way! Xoxo