Maura and Mom 2003
You…yes you, holding that sweet baby girl in the plaid dress. Let’s chat.
You don’t know it yet, but that sweet baby girl has a secret. One that will slowly and not completely reveal itself over the next few years.
It’s going to break your heart. Repeatedly.
But I promise you, it will be okay.
Sure, you’ll need therapy. And you’ll get a bottle of Prozac with that therapy. It’ll help. It will help you crawl out of the big cloud of overwhelmedness you will feel for a year or so. But you won’t need them forever.
That baby girl’s going to keep you up at night – literally and figuratively. You will worry over her like no other child has made you worry. I’ll be honest, you’ll never get over that worry, but it won’t haunt you constantly.
One by one, you’re going to give up on the dreams you had for this baby girl. The ones of her going to school, going to college, what she could be as an adult. The furthest ones will fade first. For a while, you live in the moment. Eventually, you allow yourself to think a couple of years ahead tops. Oh, you will plan for her long-term, but in the most generic of ways. Inheritances. Guardians. You even ponder the idea of a group home. But mostly, you don’t think of those things. You just take it a few days at a time. It’s just easier that way.
You will meet all sorts of people because of this child, and their true selves will be revealed. You’ll learn that some people just suck, some people mean well but should keep their mouths shut, some people are kind but sometimes clueless to what you’re going through. But you’ll learn that most people, at heart, are good. This child will help restore your faith in mankind again, and again, and again, just in how they treat her.
You will spend the next nine years wondering how you ended up the parent of a special needs child. You kind of get used to it, but at the same time, you will never get used to it. It will be this feeling of constant surprise when you sit back and think about it. How did I get here? How did this happen?
No, you will never quite get used to it, no matter how much you do accept it.
You will learn to be a fighter. You will find strength you never realized you had and overcome your fear of confrontation. You do this because not doing this is not an option. That baby girl needs you to be this way. And you’re not about to let that girl down.
You will find that those three amazing kids you had before her? Are even more amazing than you could imagine. They will show compassion and understanding beyond their years which will make you proud.
But those three will have to put up with so much because of their sister. Hours in waiting rooms, stuff broken by her, my inability to multi-task and spread my attention to everyone evenly. Your heart will break for them, that at a young age, they will realize that they will someday inherit this sister. But once again, these three kids will amaze you, for they will never resent that little sister. Be annoyed by her? Oh sure. But in normal ways. Those three little children who would hover around Maura’s bassinet and announce every time she cried will continue to look out after her over the coming years. They will let you know that you’ve done at least one or two things right.
That little baby girl? Is going to work so very hard the next ten years to learn things. Slowly, but surely, she will learn things. I promise you, she will walk, she will get there. She will talk too – not great, but enough. Can’t promise you on the toilet training, but don’t give up, she should get there.
You can’t tell right now, but that baby girl’s brain? Is going to freak out on her. She will be diagnosed with epilepsy. It will freak you out at first. I promise, promise that it will be okay. It will not stop her from anything. In fact, you’ll find out that things will improve for her after the diagnosis and starting medication. It will quickly go from something scary to something to be oddly grateful for. And then it will just become something that you all will be able to live with. Yes, that thing that will be on top of your “Big Scary Things I Don’t Want My Child to Have” list will suddenly be not that scary.
I promise that.
Speaking of medical things, your days of never seeing the pediatrician because your kids are so dang healthy? Those are over. You will get frequent flyer miles at the doctor’s office. You will collect cards of all sorts of medical professionals. You will learn which blood lab does the best blood draws on children. You will be able to write things like “epicanthal folds” and “oxcarbazepine” without thinking. You will also know that as much as you’re dealing with, you’re grateful that is all you are dealing with. Because there could be more, it could be worse.
Your back is going to spasm out from carrying that child around so much. You’ll end up with tennis elbow from lifting her as a seven year old into her car seat. You will put on weight from stress eating. You will lose your mind a little.
It’ll be okay.
Your world will revolve around poop. Your friends may think you talk about it too much. They will have no idea just how much you could speak of it. Don’t worry though, you will discover a small group of other moms obsessed over bowel movements. And you will be able to over-share with them.
Your life is not going to go as you had vaguely planned it. It’s going to veer off in a new direction. People will link you to the heartwarming tale “Welcome to Holland”. You will hate it. That’s okay. You’re allowed to hate it.
You will find out that there are cliques even in the special needs community. So you’ll start your own damn support group. It’ll be called “Who wants to get coffee with me?” It will be great.
You will learn to view adults with special needs in a whole new light. You will see a man in his 50′s happily buying a coloring book and it will make you think of your daughter. You will not cry in the store, but later on, there will be some tears.
You will feel so very alone with this child at times. Sometimes, at home, at night, other times, in the middle of a crowd. You will feel a cold wave of loneliness that you’re certain no one else will ever really understand.
You will feel jealousy, of other people and their children who are developing normally. Of their seemingly placid lives that don’t involved fighting schools and doctor visits and poop.
Just remember, you were raised to not whine about things and deal. And you do. You will suck it up and deal with it as best you can. And you will do so with a smile on your face. Because crying is never an option.
Well, most of the time.
You will write and blog about this child, and her life. And in doing so, find a whole slew of people out there who say “Wow! I live this too!” and “Thank you for writing exactly how I feel!” Somehow, you will become a voice for others and you’ll realize that you’re completely inadequate when it comes to saying “thank you” and still are lousy at accepting compliments. Work on that, okay?
You will discover that while you never expected to be a special needs parent, you will end up a bit of an advocate for special needs children. You will wonder more than once how you ended up on top of a soapbox. Don’t worry, you’ll be okay up there.
You will learn that the guy you chose to marry ten years before? Good choice. That man will be the one helping you pick up the pieces when you shatter, will love that baby girl as much as any other child, will take care of life when you can’t, and will still find you sexy even after all that stress-eating weight gain.
It’s going to be the proverbial emotional roller coaster, these next ten years. You’ll have moments where you’re feeling so high, only to crash back down. But know this -
You will grow.
You will amaze yourself.
You will let go of fears.
You will embrace the now.
And you will love this amazing, beautiful happy child so much, it will hurt. And you will be okay with that.
Oh, and that straight hair? Is going to start to curl. Go figure.
Maura and Mom 2013