5 Pieces of Advice I'd Tell My Past Self the Day We Got the Diagnosis


1656312_10203487876895157_751920615457871253_n Growing up, I spent my summers in the woods, making paths with my father on our property. It was fun, exploring and creating trails that would always lead safely home. I had a lot of defining moments on those wooden trails, and I’ve always envisioned life as one big path where big moments and decisions determined the direction you’d go. But if you had a destination in mind, you’d eventually get there. Pre-motherhood I had my path mapped out. And oh buddy, did I know my destination. I knew where I was going, what I was doing, the kind of wife, mother and career woman I was going to be.

Then I had my daughter. Then we got her diagnosis and that pre-motherhood path I’d mapped out so well bit the dust. Here in front of me was a whole new journey and I had no idea where the destination would be.

I’ve been on this journey for about two years now, and sometimes I think back on what I would say if I could talk to myself the day we found out about Sotos syndrome. And outside of the “suck it up buttercup and do what needs to be done for your family” mentality I tend to go to in times of crisis, these past two years have given me a little more insight into how things are. So in the spirit of If-I-only-knew-then-what-I-know-now,  I’ve compiled some advice I would’ve given myself or others who are currently at that moment.

1. You’re going to be scared. That’s a good thing. Being scared is what’s going to bring the fight out in you, and you’re going to need that. Being scared is what’s going to turn you into a Special Needs Soldier, and Lord help whatever army gets in your way. You’re going to be scared in waiting rooms. You’re going to be downright terrified waiting for that test results phone call. You’re going to be scared, and because of that you’ll do your research. You’re going to study that diagnosis, your child, treatment options, therapies. You’ll do more background checks on doctors than the FBI does on criminals. You’re going to learn how to be firm when you’re on the phone with a doctor’s office and demand to see a specialist. You wont back down on what your child needs because you’re afraid of what can happen if you’re not fighting for their best chance. You’ll learn quickly that fear isn’t a weakness; it’s a Special Needs Soldier’s best weapon.

2. You’re going to be angry. Don’t let it destroy you. There’s fear and there’s anger. Fear is productive. Anger is destructive. In our situation, anger is a wasted emotion. In the beginning you’re going to be pissed off that your life isn’t going to be what you imagined it to be. You’ll be fuming when someone asks, “What’s wrong with your child.” But let me fill you in on a little secret — being angry isn’t going to change anything. Being angry isn’t going to magically give you the life you thought you were going to have, and contrary to how much you might enjoy it, slapping insensitive people in the face isn’t going to force them to learn a little decency. Learn to let go and not let anger take up much of your time; you’re going to have so little time as it is, might as well fill it with something fun.

3. You’re going to be amazed. At your child and yourself. With all that research your fear has driven you to do, you’re going to come across a long list of things your child might never do. Here is where the beauty happens. She’s going to surprise you. She may not always do things as quickly or as well as her peers, but she gets there and when she does, it’s amazing. Let the rest of the world have “typical.” This is so much more. As for yourself, you’re going to learn that you have a strength within you never knew you had. You’re going to love your little girl so much you’ll feel like your heart is going to explode, and you’ll never know pride like the kind you feel when you watch her beat the odds time and time again.

4. Your life is going to be different. And that’s OK. It’s a blessing. You’ll arrange your work and social schedules around therapies and doctor appointments. You’ll look up diet plans based on how different nutrients affect brain growth. You’re not going to give two cents about what others think of you, and you’ll find that not measuring yourself to anyone else’s standards is incredibly freeing. Soon you’ll find that the life that you so desperately wanted pre-motherhood is nothing compared to what you have now. You will never underappreciate the value of family, good friends, health and happiness. You’ll have your priorities straight because they have to be. Then one day you’ll wake up and realize you weren’t given the raw end of the deal after all. So few people you know will get to appreciate life and the little things like your family does. You’ll be reminded with every new word spoken and milestone reached how incredibly blessed you are.

5. Above all else, you should know your life is going to be filled with a lot of unknowns. You’re going to be faced with a lot of things you can’t control, but you’re going to be OK. Your family is going to be OK. Just breathe and keep walking this path, even if the destination’s unknown. Because you see, sometimes the best destinations can’t be found on a map, and the best paths are the ones we pave ourselves.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.


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