After having the opportunity to share our story through my blog and public speaking, I’ve met a lot of people, including mom’s of kids facing unique challenges, and I’m ready to come out of the mommy closet. My baby has… well, “special needs”. She’s not retarded, stupid, lazy, dumb or what I even consider disabled. But life has presented her with some unique challenges that she has to constantly fight through every day. I don’t know what else to call it at this point. But there you have it.
It’s taken me a while to get to this point of acknowledging the limits we face with Jane. Due to equal parts denial, the social connotation of the word, and pure annoyance at how people react to such an idea. But for every silly person who gets uncomfortable or awkward when trying to figure out the words to say to us, there is a strong mom or dad just dying for someone to say “Me too! We’re in this together! And we can do this!” So for them, I am outting myself 🙂
As I search on Google & Pinterest the term “mothering a child with special needs”, I can’t help but think to myself “What world am I even in right now?” It’s a tough one. Filled with long days, heartbreak, unimaginable grief and strength you never knew you had. But man is it amazing when you come across a parent who is just rocking the heck out of that thing!
Instead of denying our challenges in hopes that they will gradually disappear, I would rather like to embrace them for the moment so that we can know them, face them and then overcome them like nobody’s business. Our victories will be that much sweeter when the vastness of what we are up against is acknowledged.
For all the people in this boat with us, it will hopefully be wind in their sails to get up again, stay strong, and keep life full. For those who still don’t know how to feel about being around or dealing with “special needs” I am going to help you out. (Its ok, I was just like you only 16 months ago!)
1. You can talk about it.
You don’t have to be awkward when talking about Jane’s disabilities. Making them an unspoken truth makes it weirder. Just get gutsy and ask what you want to ask. It doesn’t offend me. You didn’t do this to my child. In fact, your boldness is refreshing. You don’t have to whisper the word “blind” or “mentally delayed”. Whispering doesn’t make it go away, and it actually makes me feel like we are some sort of diseased family.
We tell the kids in our life “Jane’s brain hurts. Pray for it”. It’s as simple as that. It doesn’t have to be a long weird explanation. My absolute favorite was when our friends 9 yr old innocently and boldly asked us “So what’s up with her lazy eye?” Haha!! It made my night. Kids get it. Don’t be weird, just be honest, and if you’re close to us, ask what you need to ask.
2. You can treat us completely normal
I didn’t say our situation is normal. It most definitely is not. Although, what is “normal” anyway? Different post… But you can treat us normal. My favorite people are the ones who act like this. My friends who say “Hand her to me, I’ll put her to sleep”. Even though my child is violently screaming cause she can’t communicate any other way. The ones who invite us places, “Want to have a play date?” Even though they know it will consist of their mobile toddlers and pre-K’s hovering over Jane, poking at her eyeballs and asking questions like “Why she still cryin’?” These are the best people. I fill my life with them.
3. When you go through your storm, we’ll be here
After Jane’s blood sugar accident I realized I entered a world that few will ever see and I had never been before. A world of tragedy, grief, and disappointment. But when you look around and see who has been there all along that you had never noticed before, it can be really, really sweet. Those who have experienced premature loss, miscarriages, infertility, handicap, disabilities, and more. While this may seem really depressing to some, it made me realize that we are very human, and no one is exempt from experiencing this level of hurt, trauma, pain or disappointment. I marvel at the friends who have willingly thrown themselves into this world with me though they have never experienced it in their own families. And I am aware that nothing is a guarantee and when things go down, we will be here. And, thankfully, with a new understanding and compassion that we never had before.
So there you have it. Our child is a little different than the ones described to me in my weekly Baby Center emails (which I have now unsubscribed to) that tell me “This week your baby is babbling and on the move: Congratulations!”. But it doesn’t end here.
So if you were waiting for an explanation, I hope this helps. Now you know that our daughter is a champion, a warrior, a mental body builder, a fighter, a game changer, and a world mover. She’s definitely special. And we will rock this.