How many times has someone said to you they do understand how you feel as a special needs parent?
It’s happened to me a few times, and when it does it sets a fire in my belly so deep it takes at least 24 hours to bring me “down”. So it happened again this week while on the phone with a school adminstrator of all people.
There are people who truly do understand how we feel, and there are those who truly think they understand how we feel because they have a family member who was/is sick, hospitalized, or maybe their child was a late talker, walker, and so on.
I want to say as loud as I can without screaming, BUT YOU DON’T UNDERSTAND. Special Needs is different, I don’t even know that I can properly explain how it’s different, but it is. Whether your child is medically fragile, developmentally delayed or both it’s just not the same as a having a family member with an acute illness.
One thing I want to make clear is it’s not a competition and I am not trying to say that one is harder than the other. They are just different. I can’t for a minute pretend to understand what it’s like for you to deal with the ups and downs of your situation, which in very critical cases could be devastating.
What I do know is special needs is different in that it never goes away. Our children are not going to one day be cured of their ailments. Therapy has been, and will be, a part of our child’s life for what seems like forever and in reality may turn into forever. Their are countless specialists, routine colds & flus can send us racing to the ER, we worry about so much from school, socializing with peers, staying on top of therapy “homework”, and of course the medical dictionary that resides in our head.
I guess I’d rather have someone say to me I can’t understand how you feel but maybe through our seperate experiences we could learn from one another? Ultimately you cannot understand this life, or someone’s else challenging experience, unless you live it. I finally learnd this valuable lesson after years of tyring to make people understand.
Has anyone else experienced this?