When you begin to realize your child has limitations and disabilities, there is no way around it, you will grieve. You will grieve the life you thought you were going to live. You will grieve the life you thought your child was going to live and you will grieve for their siblings, and you will grieve for your significant other, and you will grieve for the expectations you held so high that have now become puddles on the floor. Impossible to piece together. You will do this repeatedly, but as time passes and you begin to live through whatever fate has now befallen you, your child, your family… this is what you will do. This is what you must do on your own because no one will do it for you. No one will teach you how to do this one thing, because everyone will be teaching you how to fix it, resist it. It’s this…you will accept.
You will find acceptance and along with it, you will find joy. The love was always there, but it’s the acceptance you will need to seek out. This life you were so scared to traverse will change you, and you will feel empowered and enlightened, and lucky to see the world as it really is. But it will be hard, and most people won’t see it with you. Most people will be fighting against it at every turn, like you once did. They may never accept this reality because they don’t have to live it. They will be thankful they don’t have to walk in your shoes, fearful of your path, and pity you all at the same time, but they don’t ever get to see the beauty that comes with it.
This elusive acceptance is all easier said than done while we might waste years and years in our grief. Our own, self-imposed grief. Because, let me ask you this…What world did your child know coming into it? Nothing. They had no expectations for their own life. They had nothing to mull over and fret over. No fear of missing out. They only knew the present moment, just like all of us once did.
So, when you grieve that your child might never drive when they are merely a few years old. Whose grief is that? When you grieve that they may never get married and have kids of their own. Whose grief is that? When you grieve that they will never jump on the jungle gym or dance on that stage. Whose grief is that? That is your grief.
As parents, we carry that grief because we have a preexisting idea of the rights of passages that so many typical people experience. But let’s be clear. That’s YOUR grief based on societal norms of how typical life should look. That’s not your child’s grief and it may never be what fulfills them like it did you. If you can understand that sooner rather than later, like I wish I had, then perhaps it would take some of that pressure away. The pressure to meet standards that were never meant for our children. The pressure to get our children as close to those experiences as possible. The pressure to fit our children into a mold that wasn’t made for them.
The road of raising a disabled child isn’t easy. But take it from me, it could be easier. If you allow those expectations to flow out the door and into the gutter and just be with your child every single day, the way they need you to be, you will find acceptance waiting for you with open arms. And so will your child. Your beautiful, disabled child.
And one day, if they can communicate to you that they are sad and feeling their own grief for missing out on something, no matter how small or large, you will fight like hell to make sure they get their needs met. Because when you learn to accommodate your child from day one, there’s nothing that will stop you from sharing in your child’s grief when they experience it for themselves and overcoming it together. And that my friends, is GOOD GRIEF.
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