I haven’t written anything in a long time. I am not a great writer so I shy away from it (I hear my high school english teacher Mrs. Shewchuk in my head as I write this), but as you know October kicks off Rett syndrome Awareness month. This month is always tough for me. This October will be the 10th anniversary of Ema’s official diagnosis. As much as I want to raise awareness, knowing its importance, I also know Ema doesn’t like me talking about it.
I thought long and hard about how I would like to try and raise awareness for my friends and family this year. I have been pretty quiet regarding the difficult parts of the Rett journey over the past few years. As Ema gets older and communicates more, we realized that she doesn’t want her private business out in the world. The journey with Rett does seem to get easier as you adjust, but it NEVER goes away, something people don’t understand. I try really hard not to put negativity into any of my posts surrounding Ema, so for the most part I avoid sharing the difficult things. It is very easy to sound/feel negative, ungrateful or just plain angry on our journey with the health care, education and social systems. Every step seems like a loney uphill battle. None of this is Ema’s fault and I would never want her or anyone else ever to think that.
For people to understand our journey and Rett syndrome, I believe we should be showing you all sides of the journey, not just the accomplishments and smiles. I thought I would take you through some of my experiences, thoughts and feelings as a parent this month, the ones that are not as easy to speak about or hear, the ones we deal with in private. This journey has changed how I see people and life in general.
When reading my posts this month, please remember this is only my point of view, many parents in the Rett world see things very different then I do. We all live in different situations and are at different points of our journey. I want you to also know that Ema has changed our family and we wouldn’t want it any other way. YES, I wish I never had to see Ema in pain. I also wish so much that I could hear her speak again, but Ema is who she is and we love her the way she is, unconditionally. Ema has taught me more life lessons in 15 short years than anything or anyone else. If you allow her too, if you sit back, watch and listen, Ema teaches us every single day, even at the end of those really really rough days. Through all the hills and valleys, Ema has taught me how to have more empathy for everyone, how to see things from someone else’s point of view, to have way more patience (even though I still could use a lot more) and simply just to take one day at a time. I have a long way to go, lessons are still being learned every day.
Today I am going to leave you with a post that another mother wrote. It sums up much of the journey. Written by Kate Swenson of Finding Cooper’s Voice.
Written by Kate Swenson of Finding Cooper’s Voice.
Special needs parenting changes us entirely. There is no denying that. Because the truth is — the first few years are going to pull you so far away from who you used to be that you won’t even recognize yourself anymore.
You’ll find yourself looking in a mirror, bags under your eyes, either heavier, or skinnier, and not recognize yourself. It looks and feels like you’ve aged a hundred years. Or maybe you are standing in a crowded room, feeling entirely isolated and alone, and wonder if you are invisible. You’ll wonder how your world can be so different. How you can relate anymore.
It will challenge everything you know. You will question yourself. Your purpose. Your strength. You will wonder why. And how. Why my child? And not theirs.
It will challenge your marriage. Your health. The way you parent your other children. Even your decision to have more babies. Your career and finances. Relationships. And not just with people. With God too.
You will experience the greatest love on this earth. And simultaneously wonder how it can be so hard all the time. You’ll get shamed for being sad. And for missing the almosts and the ‘should be’s.’
You’ll see the unbelievable beauty that this world holds too. Almost like you’ve been granted access to a special club. One full of forever hugs, This Little Piggy, Santa and smiles. You’ll celebrate milestones long after you should. And it will be amazing no matter when it happens.
You also see unbelievable cruelty. And it will take your breath away the first time it happens to you. To your child. You think you’ll be prepared. That you’ll come back with some witty, snappy comment. Only, you probably won’t. You will try and shield them from evil. And then spend the next few sleepless nights wondering how you can live forever and change the world at the same time.
At first you’ll feel like it’s a race against time. Against their diagnosis. You’ll do everything you possibly can. Your hope will be challenged. Then you’ll find acceptance and realistic hope. Then you’ll want time to stop. You’ll want to keep their bodies small. Because the world is kinder to children.
You’ll have days where you swear you can’t do it anymore. Where you are certain it will never get any easier. That it’s going to be this challenging forever. You’ll almost be unable to picture a world where you stand still. Where you don’t have to fight for basic rights, inclusion and easy.
And then you will have the most unbelievable moments. A moment that makes everything worthwhile. Your child will shatter a goal, a milestone, something they have worked on for years. And you will know it’s going to be okay. Because you believe in this tiny human and know that they are worthy and capable and amazing.
You will live and breathe hope and acceptance and kindness. And you will be sewn together with strength and determination.
Yes, special needs parenting changes everything. It turns you inside out and upside down. But here is the secret that you have to learn on your own. It also puts you back together as the person you were meant to be.
That’s the part that makes us lucky.
Written by Kate Swenson of Finding Cooper’s Voice.
EYES on EMA 