Our first Feature Friday!
Each Friday I will share another different needs Momma or a person with a disability.
I love community. I love hearing others stories and experiences. I want you to know that you aren't alone and that being different is okay.
Meet Amy Lauren and Louis...
"We received Louis' diagnosis at 5 and half months old. September 2018. We had been in the pediatric ICU for 8 weeks as he had a sudden onset of uncontrollable seizures. It took a long time to come to terms with the diagnosis and the new life we had. Some days were easy and I felt like I had it all under control and sorted and other days were incredibly hard and testing. And it still is like that really! A lot of frustration and questions unanswered but at the end of the day a lot of grief. Every now and then I still have those waves of grief - for the little boy I thought we would have and the life I once dreamed of, but I think that's only natural. "Welcome to Holland" was one of the most helpful things I could've found in the midst of it all. It me realize that different wasn't bad, it was just different. And to embrace it.
One of the best things we were told by our geneticists was "this diagnosis doesn't change who he is, he is still Louis and he will always just be Louis." I think that was, and still is, so important to remember and something we remind people often. People are so quick to label people with a disability by their disability or condition when they are so much more than that.
The thing I struggle with the most is when people ask, "what's wrong with him?" or label him as "very sick little boy" or use terminology that is offensive to those with different needs. For the most part, I know they don't mean it in a rude way. But there is nothing wrong with Louis, he has a condition which means he is different but there's nothing wrong with him and it's hard to hear people say things like that and respond in a way that educations them politely.
I would tell people that life with a disability is not to be pitied. It may not be full of the same milestones and joy that they know, but it is full of so much joy and happiness in other ways. And we still have milestones, they're just different!"
Thank you so much for sharing Amy and thank you so much for reading!