One Strong Pixie! An Interview with PixieMama

When I read PixieMama’s story, the only word that came to mind was “WOW”. Read on and you will see exactly what I mean…

Tell me a little about yourself and your family.

My name is pixiemama. I live basically in the middle of nowhere with my husband, J, our three sons Reilly (7.5), Foster (6), Finnegan (2) and our daughter Sophie (3.5). If you’re in the northeast and you hear a long keening wind that sounds more like a whine begging “get me outta here” you’re either as crazy as I am, or you’ve found me.

Tell me more about children’s disabilities.

Two of our children have disabilities. Foster has had global developmental delays since he was an infant. His delivery was very quick for me, but very traumatic for him. He finally qualified to be evaluated for early intervention when he was unable to sit unassisted at 10 months old.

Reilly was in Kindergarten in the Spring of 2007. He seemed to have a quick gag reflex, and threw up several mornings each month. And on the few occasions he complained of a headache, I also shrugged it off, figuring he was just echoing my incessant complaints of migraines.

Then one day he fell down our front steps. I happened to be watching him, and I noticed that nothing precipitated the fall. He just dropped. After that, I started watching him a little more closely. I noticed that he was walking with an extremely wide gait, and that he seemed to trip over air. And then his hands started shaking, and I knew that Reilly’s problems had to be neurological, since 5-year-olds generally don’t shake.

By the end of that day, we knew Reilly had a brain tumor.

On Mother’s Day 2007 – a team of pediatric neurosurgeons removed a cerebellar astrocytoma the size of a lemon from Reilly’s brain. While this type of tumor is considered benign (meaning only that it isn’t cancerous, not that it’s not dangerous) Reilly’s tumor decided to defy the odds and started growing back as soon as it was removed. After more medical procedures, his tumor swelled for about 8 months, then began to simply melt away. And as of his most recent MRI a month and a half ago, Reilly is tumor free.

How did you cope and how did all this make you feel?

I was pretty numb the day we discovered that Reilly’s wobbly walk was the result of a brain tumor. That stuff happens to your neighbor’s cousin. A guy your husband works with. That kid on TV. It certainly doesn’t happen to REAL people in REAL life. Except it did.

Even though we knew there was something different about Foster, his issues seemed relatively routine compared with hearing the news that our oldest son had a brain tumor. I quickly shut down and shifted into survival mode for about a year and a half.

You blog a lot about your children’s issues. How did you go about making the decision to blog about them? What do you personally get out of blogging about them and their issues?

I literally stumbled into the world of blogging around the time Foster was diagnosed with autism. I stalked a few bloggers until I realized that I wanted to connect with the online special needs community.

It was especially important to me because of our rural location .Blogging was something that fit seamlessly into the hours I normally spend on the computer working. Blogging gives me the community of “moms who get it” since I’m not the typical mom at the playground.

How have your children’s disabilities affected you as a person and as a mother?

My kids’ disabilities have made me fierce. My kids get what they need, no ifs, ands or buts about it.

What do you want other parents to know?

Try not to lose yourself. Everyday you’re pushing the boulder up the mountainside. That doesn’t mean you don’t deserve happiness along the way.

Is there anything else you would like to share?

I share it all at my blog – Stop by. Bring a cup of coffee. (I’ll be a bit jittery from my own 6-shot Americano!) I’d love to meet you.

Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.

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