I recently received an e-mail from a mom who is just beginning her special needs journey. She googled a few terms and this blog showed up in her search (wow!). As I read her e-mail I was suddenly taken back to that place. The place where I was completely overwhelmed and wanted Dr. Google to explain what was wrong with my child.
I remember looking into this face and feeling so overwhelmed and ill-prepared to deal with a child who had health issues. Not knowing in that moment that this would actually be the easy time. A time when we were cocooned with doctors and nurses just a call bell away.
Reality set in when we were discharged with this beautiful child who scared the crap out of me. Maternity leave and her sister at school left me too much time on my hands. I worried as I counted every breath. I searched the internet to figure out what the terms in the doctor’s report meant. Google became my friend and my tormentor. I could not find one child like mine.
I began reading blogs, books and any article I could find to find one child, just one, that might be similar to our child with an “unknown variance” in her genetic code. I began blogging, hoping to find someone, anyone, who had a similar experience. I had no idea how many other moms were going through the same torture I was experiencing. The torture of being told something wasn’t quite right with your child but not what that something was. It flabbergasted me (and still does) that there is more money spent on research for romance then for children who are fighting for their lives.
It was through blogging that I found my village and my answer. A reader had reached out to me about a doctor who could do the genetic testing we needed. Okay, I needed the answers to what made Bridgetitis happen to our child and what we needed to do to provide her the best life possible.
Having the answer of PACS1 didn’t give us a road map, but it gave us a beginning. When I was THAT mom, the one searching Google at 1 am I had no idea that the answer just wasn’t there. PACS1 hadn’t been yet discovered and it would be years before an answer was found. I want to reach out to THAT mom today who is going through the terror that it does get easier. You will find your village and I hope that you find the answer sooner than we did. Just remember that this life, this life you never expected, is to be lived. To be enjoyed. To be cherished. Every moment. Celebrate every milestone and create your own.
Never give up home. Each one of us has been THAT mom, the one searching for answers. The internet is a valuable tool, follow your gut and find others who might only have one thing in common with you.
Even if that one thing is being undiagnosed.
Celebrating being no longer afraid of the beach milestone