Why We Write

I read a blog post on Momastery today that completely validates the way I feel. Take a minute to read it, I’ll wait.

The author, Chrissy, puts into words exactly how I feel, how I’ve felt for the past 5+ years.  Those words, about Cancer, and how it would almost be easier…I’ve uttered those words more than once. I’ve thought, that has to be easier. There is a clear treatment plan (that insurance covers by the way). With cancer, no one judges how your kids behave in public. No one snickers at the precautions you take to keep germs away from your child like they do about the precautions you take to prevent melt downs or seizures. No one questions whether your diagnosis is real or just the flavor of the month issue that kids have these days. But then, I’ve felt the shame for wishing that because my God, there are people whose children die from cancer. At least my child is still here.

But that dark cloud of sadness, that haze that you live in, that’s real. I’ve been waiting for it to go away for a long time now, but it always seems that just as it slowly starts to dissipate, something else comes creeping right behind it and we’re back to heavy hearts, heavy shoulders and heavy minds.

But like Chrissy, all of Max’s diagnoses have brought a fire to my soul too. They have lit up something in our whole family. We just want to DO something; to fix something not just in Max but all the other kids like him. We want to help. To let people know that epilepsy isn’t just seizures. It’s ADHD and learning difficulties and Autism and not having play dates because how do you ask a parent you don’t know well to administer medication in your child’s rectum if necessary. Autism isn’t just kids that flap their arms, are non-verbal or don’t like to be touched. They are kids that feel, and love. They are kids who grow up to contemplate suicide because they’ve never really had friends and the bullying becomes just too much. They are kids who live in households with bickering parents because the adults are just so on edge all.the.time.

But they are kids that work really hard, and kids who need and want to be loved. So I’m going to take a page out of Chrissy’s book. I’m going to do my very best to follow her words:

“I refuse to waste my entire life on sad because of stupid autism.The best thing I can do for my boys is to give them the gift of a happy me. A really and truly authentically happy me.”

By the way, the title of this post was inspired by this Tweet from Stephanie Dulli.

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Even though it’s scary, we should all be sharing our stories. Me, Chrissy, Stephanie, all of us because there is someone out there who will read them and learn something. Or feel just a little bit better because there is someone else out there that thinks like they do, or feels like they do. And plus, writing it down, getting it out, helps lift some of that heavy weight we all carry around.

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Epilepsy Walk 2012

In November of 2007,we heard the words no parent wants to hear. “Your son has a seizure disorder and of all the types to have, this isn’t the one you want.”  This started our family’s journey into the world of special needs, developmental delays, Early Intervention and IEPs. Instead of just learning how to be first time parents, we had to figure out how to juggle full-time jobs, doctor’s appointments, therapy sessions and school schedules. Even 4 years later, it remains a challenge.

This year has brought us many new struggles. Even though Max’s seizures are well controlled, his Epilepsy is affecting him every day in other ways. He has constant struggles with his attention and behavior, trying his best to keep his ever-moving body and mind under control. Since Max will turn 5 this summer, we have spent many,many months researching and agonizing over which type of school setting will be right for him and provide him with not only the academic, developmental and social skills he needs to succeed but also allow him to remain a curious, exuberant learner.

Max continues to be a joyful boy. He loves listening to music (among his favorites are Coldplay, the Foo Fighters and Red Hot Chili Peppers). He is obsessed with bridges and loves to look at photos and identify where they are in the world and if they are “walking bridges” or “car bridges”. He can do any puzzle you put in front of him. As I said about him last year, he has perseverance and bravery the likes of which we have never seen. His personality will take him far in life no matter what Epilepsy throws his way.

This year, 200,000 people in the US will be diagnosed with Epilepsy, which is more than will be diagnosed with Breast Cancer and the mortality rate for both is the same. However Epilepsy research will receive 600 million dollars less in funding than Breast Cancer research, and over 300 million dollars less than Alzheimers research. Your support is helping families like ours. The Epilepsy Genome Project, introduced to us this year, is on track to discover the genetic cause of severe childhood forms of Epilepsy, including Infantile Spasms, the original type of seizures Max had. This is a true sign of research dollars at work and may help eliminate another family having to go through what we did, but more importantly may offer a child the chance at a normal, healthy, long life. In addition, the CT Epilepsy Foundation has used donation dollars to develop the nationwide Child Care Education Program that Max’s teachers have benefitted from. They now know what to do in the event a child has a seizure at the center. They know how to administer Max’s medication and what different seizure types look like; which could save his life. This walk is held to raise money for education and support groups, as well as a summer camp for kids and teens living with epilepsy, all the while trying to eliminate or at least help control this unpredictable and life altering disorder.

We appreciate your support and encourage you to donate what you can. Our team name is Max: The Amazing Race and by clicking on the link, all you have to do is enter your name and donation amount. You can also donate to Ian as an individual. Thank you for joining us in this fight.