autism · Down syndrome

A letter to myself.

Dear Lexi 2004,
Hi. Jeez. What can I tell you about the road ahead? Hold on? It gets better? 
You’re going to have four kids.  Two of those kids will have special needs. You will experience a sadness that you’ve tasted a little of when you lost your father. But different. It will linger, in and out of your life, like a ghost. But not the one you wish for. Because of that sadness, every single joy you have will be so much richer than it would have otherwise been. You’ll find yourself broken and strong all at the same time.
They’ll tell you it will be like vacationing in Holland instead of France. They’re full of shit. This is not a vacation. This is real life. 
You’ll change. Everything will change. You’ll love your husband more than you’ve ever thought possible. And you’ll need him so much that it scares you. At the same time you’ll find strength inside yourself that you didn’t know you were capable of. Which is good, because you’ll endure far more than you’ll ever expect.
You’ll lose friends. Those are the ones that weren’t deserving of you and your family in the first place. You’ll know this when it happens, but it will still hurt like hell. 
You’ll make friends. Oh! The friends you’ll make! I’m so excited for you and the friends that you are about to find! A lot of them are online, and that’s okay. They’ll be parents of children with special needs, too, and they’ll  be your very survival.  You’ll have Real Life Friends, too, and they’ll be the very best people this world has to offer. That’s the thing about disability that you won’t see on the outset- it sifts the Not So Great Friends from the REALLY Great Friends. 
You’ll gain a new perspective on life. On happiness. On success. You’ll gain an awareness of and a deep appreciation for people who are different. People who, though maybe not all born with a disability, are born different from the rest of everyone else.  You will become their friend and their advocate. In turn, they will do the same for you.  The bubble you once lived in will burst, and you’ll be glad it did.  You’ll learn that differences are what give color to this world.
It’s going to be hard. But it’s going to be so good. It won’t get easier as time goes by, but it will get better.  You’ll be able to handle more, and a lot of that is a process of choosing to weed out the crap that doesn’t matter.  So much of what you think matters most right now will make you laugh in the years to come. 
Ask for help. Stop giving pieces of yourself you don’t have to give. You can say ‘no’ to people who wouldn’t say ‘yes’ to you if the situation was reversed.  See a therapist. Find good medication. Sleep when possible.  
You will have so much joy. Your life will be happy and full of laughter. So much laughter. It will be hard. It will suck at times. But you will be given a life less ordinary, forced down the road less traveled. And you will be grateful for the chance. 
Lexi 2012.

8 thoughts on “A letter to myself.

  1. I loooove the vacation line. Actually, I love the whole thing. And apparently I'm stupid and never liked your FB page, and thought you were on a blogging hiatus? Kids eat my brainz.

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