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.

For Crying Out Loud

You know that episode of Everybody Loves Raymond, where Deborah turns on the Theme from Ice Castles so she can have a good cry? Yeah, that.

I remember reading something about the different temperaments of children when Max was around age 2 I think. I believe it was Happiest Baby or Happiest Toddler on the Block by Harvey Karp. The one temperament that I associated with Max was one in which the child held his sh!t together all day for school or child care but then completely lost it at home when back in the safe arms of his parents. Max was and still is totally like that, and I’m beginning to think I am too.

I have a lot swirling around in my brain. I’m having dreams about work every night, causing me interrupted sleep. We’re dealing with some unsettling news about Max (more to come on that in a later post) and I’m just feeling run down. I need to figure out a way to motivate and push myself to eat better and sleep more. I know that will help, but right now, I’m just so grumpy and I can’t shake it. I’m losing it at home. I’m hoping getting out for some fresh air and the change in routine for Christmas will help. Fingers crossed.

I Love This Article

I love this article. It really speaks to how isolating parenting can be. I’m constantly wondering why parents can’t be more honest– why mothers especially can’t just be more open about what they are going through and how hard this is. If we all just helped each other instead of trying to better than one another life might be a bit easier on all of us.

Change

I’m really struggling right now. I need a change. I need to do something different. I’m bored with the constant chaos if that makes any sense. Every day is the same, yet there is always something different. Maybe it’s more the routine. The systems that have been put in place to keep us sane– to keep food on the table and in lunchboxes. To keep diapers and extra clothes and snacks at all the appropriate “schools” for each child. They’re dragging me down.

I can’t decide if I just need a job change or a location change. I fantasize about a bigger house that needs less work and has better storage. Somewhere that feels more rural, more peaceful. A fresh start. BUT, I can’t help but like this house, our first house, the house my kids were born in. I like our neighbors and the spray park and our diner. I don’t like Max’s school or our home location next to a gas station and right off a busy, noisy, dirty street. I need to open my windows at night without fear that our neighbors or a truck will be too loud and set off the dog barking or a kid crying.

As far as jobs go, I want to do something important. I want to something meaningful and helpful. I go back and forth on what that means each day. So far, I’ve considered:

1. Staying home with the boys

2. Becoming a professional blogger talking about my point of view as a full-time working parent with a special needs child. (I realize that this doesn’t make any sense as essentially I’d have to quit my full-time job or decrease my hours to do this which negates the point of the blog. See where my circular thinking is going).

3. Going to nursing school

4. Renewing my teaching license

5. Opening a children’s consignment shop named Pumpernickel

6. Working for Early Intervention

Clearly I haven’t figured out which is best but I hope I do soon…as does my husband.