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.

The One Where I Feel Like a Really Horrible Person

I am really short with my kids. I yell. A lot. Particularly at Max. The little annoying behaviors just build and build until I blow up. I know it’s not healthy for any of us, but I don’t have any alternative strategies.

Max doesn’t have an Autism diagnosis, nor does he have a diagnosis of ADHD or any other similar type of disorder but he exhibits many of the same behaviors. And to be completely honest, they drive me crazy. I find them to be really annoying.

I know that’s not the politically correct thing to say or the way a parent is supposed to feel about her child. I know it’s not his fault, I really do. The arm flapping and spitting are not terribly difficult to deal with. I can overlook those most times though it breaks my heart to see his younger brother or cousin mimic him…not in a teasing way, just in the “monkey see, monkey do” way that toddlers have.

It’s the lack of a “calm body”. I’ve ready books about active boys and I know hyperactivity is common in young boys. I’m seeking out help from his doctor for behavior modification suggestions. But for now, we can’t get through a book without him elbowing or kicking me in the gut or shin or face. We don’t get through a meal without spilled water or milk. When he eats yogurt, it’s all over his shirt, pants, the table. His body is riddled with bruises because he’s constantly bumping into things. He can’t resist kicking or hitting his brother for no reason or without warning. Though he does have some fine motor skill delays that might be contributing to the eating issues, I really don’t think that’s it. His brain and body just never idle. They never turn off. It’s exhausting and embarrassing and I just don’t want to have to deal with it all the time.

So this is my cry for help. Parent of kids with these kind of behaviors, how to you handle it? How do you accept it? What do you do about it?

The Soccer Game

Today was the big preschool soccer game. I had high hopes. Max has been talking about soccer all summer even practicing the drills sometimes. I should have known better but I really thought this would be the time Max would participate. I had visions of him running freely up and down the field with a big smile on his face. I was excited; Ian left work early to be there. This is what we dreamed of before having kids and even more so after having boys. Afternoons at the soccer field! This was going to be great.

Well, I didn’t have it exactly correct. The only time he was even out on the field he was on the opposite side of the action and it was because one of his little buddies held his hand and dragged him out there.

Like most organized activities, I left feeling sad. I wonder when I will accept Max’s delays; when I will stop mourning the loss of his “normal” life. There were plenty of other kids that were not participating, they were crying even, but I didn’t take comfort in that. I just wanted to shout out to everyone, “Wait, you don’t understand. He has special needs. He has delays. You should feel bad for him!” I know that someday I will come to terms. I’ll stop comparing him to every other kid and relish in his accomplishments rather than focus on his delays. I’m just not there yet and days like today take my breath away.

Fall Guy

It’s a hard thing to manage when your child falls all the time. It might not seem like a big deal, but it becomes frustrating; annoying even. Last night, Max fell three or four times in the span of a half hour or so. He fell and hit his head on the wall, then he rolled off his bed backwards and head first. Then, he was so worked up from that, that after peeing on the bathroom floor instead of in the toilet, he fell off the bench he was sitting on waiting for us to clean up the pee. Oy.

He falls in parking lots, in stores, at home, anywhere and everywhere. Most of the time Ian and I don’t react much (because it happens all the time) which is unnerving for others.  Just this weekend, when in line at Whole Food, Max tripped over the wheels of the cart. I helped him get up without saying much about it, but the woman next to us whooped and hollered, asking him if he was ok over and over. When we are at a party and it happens, we just explain to the people around us that it happens so much we don’t make much of a big deal about it (hoping they will do the same).

I know it seems like a small thing, but sometimes all of the small things throughout the day really add up.

Would You Want to be Your Child?

The blogosphere is all abuzz about this post on this blog. It’s as if the universe is trying to speak to me sometimes. Last night at a rare dinner out alone with my husband, we discussed something along these lines. Lately, we’ve been spending a lot of time trying to figure out why our oldest son behaves the way he does. He wakes up way too early in the morning and whines way too much. Like a lot. Like for hours straight. We were discussing two instances and trying to analyze why he was behaving the way he was.

One was Sunday afternoon. Max had the stomach bug the previous Thursday, then I got it that night into Friday, then my husband had it Saturday night into Sunday. Needless to say we were all tired, cranky and not feeling well. In my mind, I was going to put the boys on the couch in front of the TV full of Christmas Specials for the afternoon. WRONG! They wanted to play, they wanted to eat lunch (the nerve!), they wanted their mother to be present. But I wasn’t, so they cried and whined.

The second circumstance was yesterday morning. Max woke up too early crying. Since he hadn’t eaten dinner the night before, he wanted a glass of milk immediately, and I stubbornly was making him wait until a decent hour; you know, 6:00 a.m. So, he continued to cry and whine and thrash about. So much so that I left him in bed with my husband, and went downstairs so I could ignore him.

While talking about it at dinner, my husband said, “I just don’t understand what’s wrong with him. I don’t know why he has to act like that.” My response was, “It’s my fault. He acts like that because I do.” So the answer is no, I wouldn’t want to be my child, and yes it is my fault. I would want a mom that is present, that plays and laughs more and doesn’t worry so much if the house is tidy or the laundry is folded. I would want a mom who wasn’t tired all of the time and spent less time worrying. I would just want to feel loved and heard and understood.

I don’t know who you are Abraham Piper, but point taken. Well done.