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The Only Advice You Need but Will Never Get as a New Special Needs Mom

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I know exactly what you’re feeling right now. I promise I do. I know that you’re lying there watching your husband hold your new baby, just hours old, wondering how the whole world can fit into a space so small. You’re confused by how something can feel so natural and so foreign at the same time.

You’re a new mom, and over the the next few years, you’re going to get all kinds of advice about parenting. Sadly, my advice is the only advice you will ever need, but you will never get.

You don’t know me yet, but we will meet in time. Our introduction won’t be a single event, but one that occurs slowly. By the time you’re aware of me, you will wonder how long I’ve been around. I will wonder, too. What I do know is that you’re lying there in a hospital bed feeling like your baby is somehow different than the other babies in the maternity ward. You will ask the doctors and nurses, and they’ll all tell you he’s perfect. But you won’t believe them. You will insist that he be reassessed by a pediatrician before you leave. The medical world will respond with kindness but chalk up your concern to new mom paranoia and postpartum hormones.

I want to warn you that your life is about to get unimaginably hard. But even if I could, I wouldn’t know how to begin. There seems to be no good way to tell you that your perfect baby is going to stop growing, and a good day will mean he only vomited a dozen times. I can’t prepare you for sleeping upright and the devastation you’ll feel when you first realize your baby is in pain. Even worse will be the sinking feeling in your stomach when doctor after doctor tells you everything is “normal.”

You will spend long nights in the hospital waiting to see why your medically normal child keeps bleeding internally and goes through periods when he can’t walk. You need to know that it will take years, but they will find the cause. You were right. Your boy is different, and for the longest time he won’t be OK. I’m sorry. I really wanted you to be wrong.

I want to curb your sense of relief when your second son is born. I know he appears not to have whatever is ailing your first child. However, appearances can be deceiving. You will need to brace yourself for two “normal” children no one will know how to help. Your nights will be filled with tears, and your days filled with fear. You will feel weak, scared and alone. And you will be. Your friends and family won’t understand, and you won’t have the energy to try to make them. Your professional ambitions will dissolve into thin air, and you will become so engrossed in surviving that the world around you will become immaterial. Tough times are coming. I want to warn you. But I can’t. I hate that I can’t.

Perhaps even more frustrating is that I can’t prepare you for what these challenges will mean. Because they’ll mean something even when it seems like they don’t. I want to tell you the man holding your baby will be the only person on this earth who believes in you. He will stand behind you and hold you up, even when you don’t realize he’s doing it. While you’ll be busy worrying all of this is too much for one relationship to take, the situation will be busy binding you together in a way you never knew possible when you took your wedding vows.

I wish you knew that in spite of all the challenges ahead, there will be light in the darkness. You will find joy in the struggle. Diagnoses will be made, and effective treatment plans will change your life. The two little boys who struggled to thrive and grow will become the strongest, happiest people you could ever hope to meet. A day will come when you sit and listen to your 5-year-old tell your frustrated 3-year-old that he can’t quit. You will cry as you listen on the other side of the door as one boy teaches the other about the importance of persistence and moving forward even when it seems like we physically can’t. Your little boys will be connected beyond the normal bonds of brotherhood forging through life in a way that resembles two soldiers united after serving time together at war. They will inspire you. You will feel like you don’t deserve them. No mother could ever hope for anything more than what you will be given.

The world will feel overwhelming at times, but your boys will make it mean something of great significance. They will give you a purpose. When you feel lost, you won’t be. You will just be too deliriously tired to know you are exactly where you need to be. I wish you could know that your boys will thrive in spite of their circumstances. Their pain will eventually be controlled. Your marriage will remain intact.

But perhaps the one thing I wish I could talk to you about more than anything else is regret. Pretty soon you’ll wonder what you should do, what you could’ve done and what you will do. You’ll worry about making the wrong decisions. You will stay up all night researching possible outcomes and choosing between the lesser of the evils. You will spend your days fighting, arguing and advocating. You will wish you had more knowledge and the ability learn medical jargon faster. Frustration will become a natural byproduct of your life. No matter what you do, you won’t get the outcome you want because dystonia has no cure.

The good news, however, is there is one important thing as a mom you will never, ever regret. You will never wish you hadn’t listened to your instincts. You will never look back and wonder if trusting the cues of your baby was the right thing. You will always be glad about the lengths you went to to help your kids’ physical discomfort. You will never regret fighting for your boys even when it makes you look crazy. You will have the gift of never looking back and wishing you had done more. This lack of regret in your world full of stress and emotion will mean everything.

I wish I could go back and tell myself all the things I know now. But I can’t. The only one who can truly know what it’s like to walk in our shoes and give us the advice we need is our future selves. So all I can do is look back in history and ache that you, my younger self, will have to get there the hard way. By the time you know what I know, you won’t need my help anymore. You will be shocked by how much you’re going to change. How much you’re going to grow.

Your perceptions will evolve, your extroverted personality will become more introverted and your life will be better than you could have ever dreamed. You will feel like a different person. You will learn things you didn’t know you needed to learn. You will begin to emerge from the fog of exhaustion and be amazed by all that surrounds you. You will be loved, you will be happy and you will find a way to accept dystonia as a part of your life.

Follow this journey on Raising Dystonia.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images


Originally published: November 30, 2015
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