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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To My Baby Boy on His Fourth Birthday

Ben

Ben (Benny, Chicky, Cheech, Papa),

Today is your fourth birthday. It’s a hard day for me. Not because your birth was traumatic or because there are negative memories. It’s because you’re growing up. It’s highly likely that you’ll be my last baby and I desperately regret wishing away your infancy. I was totally overwhelmed with your brother and you were just so easy. Yes, you wanted to be held constantly, but that’s nothing the baby carrier couldn’t take care of. I couldn’t wait for you to hold your own bottle or sit up on your own because it would make things just that much easier.

But now, I don’t remember what you were like as a baby. I don’t remember what it felt like to hold you all the time; to feed you and wake up with you in the middle of the night. You crawled early, you walked early, you talked early (and haven’t stopped since) so it’s like you grew up and I missed the whole thing. I’m very sorry for that. I will try harder to savor the moments from now on.

Benny, you are so independent and really do know exactly what you want; whether it be two different socks or a glass vs. a blue cup. You mimic so many of my behaviors that it’s scary. We are so much alike it’s alarming and causes us strife from time to time but we’re figuring out how to work with each other. Just this morning you informed me that 4 year olds always listen and have nice behavior so perhaps we’re turning the corner.

I can’t wait to see who you become. It’s been fun to watch your interests blossom and I’m anxious to see you divulge from the path Max has forged and make your own way in this world. You really are a sweet, sunny, little boy and you’ll always be your mama’s baby.

I love you.