Child Spotlight: Lee & Emmy
1. Please introduce your child
Emmy Richardson, age 6, no true diagnosis, but can be classified as spinal disgenesis. It pretty much means anything from the L4 vertibre down has potential issues, including mobility, growth (hip/leg/feet etc.), functions, feeling etc.
2. What were your thoughts when you first found out your daughter was going to have a surgery or receive a diagnosis?
We first received a general diagnosis on Christmas Eve when my wife was 5 months pregnant as we were supposed to find out gender, and went through a long range of emotions including fears of worst case scenarios and of what kind of life our child would have, concern about how we would handle everything and then going through many what ifs in our head. When we found out about the surgeries there is also a mix of fear and hope. Fear about the dangers and hope about the outcomes.
3. How has having a child with a disability changed you as a parent or made you the parent you are today?
It has definitely made me stronger as well as let me relax on the little things. Its hard to quantify as my first child was born with a disability so I don’t know how I would have been as a parent otherwise. But I do know that she has changed me as a person. I am way more open and accepting of all others now than I ever had been. I am upset that it took having a child with a disability to really see the struggles so many people face, but am glad that I was able to become a better person because of it.
4. What gaps in the system have you noticed?
As Emmy does not have a specific diagnosis we are often mislabeled and sometimes crucial steps or help is missed because they don’t normally fall in the box we were labelled. It is also really hard to find specialized equipment. For example Emmy is unable to sit “normally” as her hips only bend to about 60°. This means chairs in school do not work, and it forces her to stand for many hours on end. We have tried looking for stuff that can work but in most cases we are starting from scratch and it would be really nice if their was a system in place to help with that besides asking other parents.
5. What is the hardest part about being a disability parent?
The stress. There are a lot of little worries everyday. Many of them we have absolutely no control over, not to mention when the big worries like major surgeries come up. I want the best for my child and so many things are out of my control.
6. What is the best part about being a disability parent?
Celebrating the victories, and the community. Emmy has done some amazing things like taking her first steps when we thought she would never walk a day in her life, and the excitement we get with the ability to celebrate with her is absolutely priceless. The people we have met in the community is also something that is incredible, getting to celebrate every time we hear a story about someone we know defying odds, and the community coming together to help when needed.
7. If you could give any advice or guidance to a fellow dad receiving a new or similar diagnosis, what would it be?
Celebrate when you can and do not be afraid to lean on others. Family and friends will help more than you could imagine. Don’t be afraid to reach out to strangers in similar situations, we have received help from random strangers. Don’t forget to take breaks.