Wednesday, April 24, 2013

Autism Awareness Month 4/24 - Catherine - Fan

Today's post in the Autism Awareness Month project comes from a fan.

I asked Catherine to describe herself and she sent me this:

I am a nurse, mom of two wild and wonderful boys, and have been married for 7 years to the love of my life, who is a two-time cancer survivor and bone marrow transplant recepient. I am surrounded by boys and wouldn't have it any other way!

Again, I could not have said it better.

Her post is both informative and beautiful.

Ladies and Gentlemen, I present Catherine...

I've been blogging for a few years now, mostly because it's therapeutic for me. Life has been a series of adverse events for our family since 2009. October 26, 2009, to be exact. That was the day that separated my old life from my new life. That's the day when we got the news that my kind-hearted husband's leukemia had relapsed. At the time, our older son was 2 and I was 7 months pregnant with our second son. The next three months were a whirlwind of complications of chemo for my husband, a near death scenario, and my trying to balance it all. With a man who would never be the same. He went into surgery not long after diagnosis to have a chemo port placed in his brain. He knew who I was when he went in for surgery. That was the last time he would know me for almost two months.

In the midst of this drama, my sweet Caleb decided to show up three weeks early. He was an easy baby, hardly fussed, nursed like a champ. I thought that at least something was going right in the midst of what was horribly wrong. Adam then went for a bone marrow transplant when Caleb was two months old. He was 2 and 1/2 hours away. God bless his sister Beth for going with him to be his primary caregiver so I could still work. Thus began my weekend visits every weekend to care for him. During the week, I cared for my two sons plus my then 12 year old stepson and 12 year old nephew.

Maybe that's why I didn't really notice that Caleb was not reaching his milestones. I am a nurse and worked in pediatrics for a long time, so I am well-versed in milestones. The alarm bells started going off at 9 months and by 12 months, his doctor (God bless her!) referred him to a state program for children under three to evaluate and treat developmental delays. At 12 months, Caleb could sit up with help, was only able to army crawl (using his elbows to drag himself across the floor) and could not take solid foods without gagging and vomiting every bit of it. Thus began our journey of therapies, specialist visits, and genetic testing. I knew in the back of my mind that he could have autism, as every male in my husband's generation on his dad's side has a child with autism. We got the diagnosis at age two. I was devastated, as I would expect any parent to be. But hopeful, too, because he had made tremendous progress with therapies and continues to do so. At age 3, he goes to school and is starting to speak in short sentences and learns new words everyday. He and our older son, Eli, keep my husband hopeful and bring him alot of joy. Even after transplant, he is chronically ill and realistically, doesn't have a long life expectancy. When he's feeling down, Caleb smiles his big toothy grin and makes his daddy feel better.
Caleb is an absolute joy. His meltdowns are horrific, yes, but in general, he is a happy child. He didn't hug or give kisses till he was three, but now freely doles them out.

So what does autism mean to me? Autism means Caleb. Quirky, loving Caleb. Meltdown-on-steroids Caleb. Most importantly, it means a little boy who loves unconditionally and is a light in the insanity that is our family's life together.


  1. Can I share this on my page, too? I want to spread the word about the awareness project. You are truly amazing to share all our stories. I appreciate your sharing mine.

  2. Absolutely. Please spread the word, and, as a teaser, there are still at least three amazing and very special posts still to come!