Lifeline
More than five years ago I started what I thought would be an online platform to simplify the communication process between me and our family and friends. I didn’t share many photos of myself or Mira in those early months, not wanting to let the obvious fact that our daughter was “different” dominate content or conversation. You might define us as a “special needs” family, but I only saw my daughter’s diagnosis as one small part of a much larger picture.
It took me some time before I was willing to share the struggles and joys of our family’s brand of normal. I was struggling with managing a family with two young kids, a full-time job, plus the additional stuff a new diagnosis placed on us, and I wanted to keep those feelings to myself.
When people would approach Evan and I and ask how things were going with Mira, we would just say, “we are hanging in!” or something equally non-descriptive. That was really a way to protect ourselves. There were too many times when I would open up and see their eyes glaze over. Or they would leave the conversation visibly distressed and confused, which made me feel awful for making them feel bad.
Now, while I still don’t consider myself a “special needs” blogger, sharing that aspect of my family’s life is what I am best known for in our online community. “The Joy of Mira” puts a face, or more accurately, Mira’s face on what it’s like to thrive while dealing with adversity. Blogging about our journey has created awareness, helped me process my feelings, documented our growth as parents and connected me with other parents who couldn’t find support in their own communities.
Blogging offered a way to intimately share our journey without having to worry if the audience was strong enough to take it or was actually even interested.
Looking back, I’m glad I have all those blog posts, to remind me of all the good times, and how far we’ve come from the bad. When we had medical procedures and hospital stays, it was so much easier to share detailed updates through my blog than worry about texts, Facebook, email, etc. If you want to know how Mira is doing, read my blog. Done.
On April 28th, 2016 I sat in my doctor’s office hearing the words no parent wants to hear. I laid awake that entire night unable to close my eyes or put down my phone. I frantically searched the internet, googling combinations of different words that lead me down a deep, dark rabbit hole of information that I just couldn’t process at the time.
I remember feeling panic, helplessness and a sense of being completely alone.
Just before the sun creeped through the window, I was thrown a lifeline. I discovered several blogs written by other parents who had shared my same experience. I realized that Googled medical pages couldn’t wrap their arms around me in the same way that the mothers before me could. I was able to put names and faces to our diagnosis which made everything a little less foreign and scary.
Today, newly diagnosed families reach out to me all the time. I love it! Every time an email comes in, I light up. I am transported back to my April 28th and I make it my priority to respond immediately. Over the last few years, I have had the privilege of getting to know many mothers and their babies from diagnosis day to birth day, and get a window into their lives as they falter, adjust, and thrive.
It is my purpose to offer them some encouraging words, calm their fears and extend a lifeline just like the one I discovered, on April 28th.
