I learned in science class that for every action there is a reaction. The ripple effect of a butterfly flapping their wings in Australia leads to a wind storm in Nebraska. A person in front of you that pays for your coffee, sets the tone for your day.
A neurological fellow, in training to be a doctor, who tells you that your child will never roll over, sit up, jump or have a meaningful life will destroy your world.
Then remakes you into a warrior parent.
I used to despise that doctor-in-training. The one who told me to give up, who placed limits on Bridget. He told me that Bridget had an immature brain wave pattern, a thin corpus callosum and this was something that could not be cured or changed.
If it wasn’t for this fellow destroying my world, I never would have called the head neurologist in charge. Hysterical, confused and oh so very sad that this child of mine, this beautiful child of mine was damaged. Yes, that was my thought at the time. I will never forget his response. That they never do an MRI on an infant’s brain, unless there was something wrong, so how do they know what a normal MRI of a 6 month old looks like? Yes, our child had an immature brain wave, yes she had serious health issues but (and this is what has stayed with me):
“If you don’t put limits on Bridget, she will defy anyone else who dares to”.
I began this blog because I knew no one like us. No one who had a child with a disability without explanation. Bridget did not have a “known” syndrome. She was undiagnosed with a “unknown genetic abnormality”. I remember writing this blog, asking anyone for help, for guidance, for a freaking Dr. House. A reader responded, leading us on a journey to being diagnosed with PACS1.
When I took a job in clinical research, it wasn’t because I was so much interested in research. I was looking for a job that had potential for growth and stability. Five years after Bridget was born, we finally received an answer to that “unknown” and transitioned to PACS1. Except, that wasn’t an answer but a new journey. Only two children in the world were known. Had I not been in clinical research, I wouldn’t have known how to read the research paper, find the one American doctor who had co-authored and learn that we were not one of 3 but one of 11. Now one of 30.
Finding out we were one of 11 and there was a small but active families who support one another, who answer questions and fears. Families who understand the celebration of going on the potty, of your child saying they love you, your child rolling over for the first time. A place where there isn’t judgement, but acceptance. Not that your in-the-real-world friends don’t love and accept you. Just a different friendship, born in the internet and solidified in the phone call when you have had a day from hell. Where you look at a PACS1 child and see a would-be-sibling.
For every action there is a reaction. Had I not had Dr. Robbins who told us to never put limits, I might have. If I hadn’t written this blog, I wouldn’t have found our Dr. House. If I hadn’t found Dr. House, I wouldn’t have found our PACS1 family. If I hadn’t found my PACS1 family, I would never have been on that blind date.
I sometimes fear the ripples. Until I remember that without them I would not be where I am today.
A mom whose child jumps, laughs, smiles and by damn does she make ripples.
Sometimes you have a ripple effect by being a butterfly. Sometimes you have to sting like the be. I feel the ripple effect when I reach out to a PACS1 mom and she holds my heart just as I hold hers.
This is how I finished the sentence, “I feel the ripple effects…”
Hosted by Kristi at Finding Ninee