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Close to 4 years ago our friendship started with a desperate message from you for some help, some guidance, some information, something that would tell you all would be OK with your little girl. You know now that I get those messages a lot. But something in yours was different. You reminded me so much of, well, me. I picked up the phone and we began our friendship.
Through the years I have given you lots of advice for helping your little girl. And in return, you have become a source of information for me as I began uncharted waters with certain treatments. Some days I am sure I offered too much information and you thought, clearly, I must be crazy but most things I have been pretty on target with.So I hope you will trust my advice now.
I know you are scared and I know how you feel. And I know that there are very few people who can truly say that they understand your world. I do. I lived it and continue to. You are SO much like me when I was in your stage.
So now I have some advice for YOU. Not for your daughter. This is just for you. So listen up because I wish someone had told me this years ago.
In the 3 years of your daughters life you have gained a lot. You have, also, lost a lot. You have cried over the miracle of seeing her walk and you have cried over the disaster of her falling out of her wheelchair. You have beamed at her successes on so many things and locked yourself in the bathroom to quietly cry over her failures. You’ve been to church, you’ve gotten drunk, you have tried to get away and you have tried to hold on tight.
You have done an amazing job. You need to hear that. Everyday with this disability are a million tiny heartbreaks and a hundred little miracles and you have rocked them all. You have gone from being a scared 20 something year old mom into a fearless warrior of ‘fuck you’s’ to many deserving foes.
But while you have gained such strength in being a special needs mom, you have lost YOU. You need to find her again. You need to find a place and a time where you are not known as “someone specials mom”. Because it is so easy to forget who you are when you are constantly labeled as THAT MOM.
Your daughter will grow up. She will get where she needs to be. And yes, she will always need you more than the others will. And that is the point-she will always need you. She needs a mom that is happy and healthy. And it is too easy to neglect yourself now in favor of her needs. In the long run, it doesn’t do either of you good. I know. I am living it.
So I am here to just give you a gentle reminder….take care of you. Because the reality is that you are the glue that keeps all those pieces together. You are the master juggler of all things. You are her warrior. Feed that.