So, I’ll admit, a class assignment has brought me to the blog tonight. (Thankfully, we are crazy busy living “normal” life these days.)
Mary Clare has a clothesline timeline to complete. With only four small squares to document and illustrate her life, I turned to the best (only) journal I have, babypennington.com.
You know me. I could write an entire book on all that she is and has achieved complete with dramatic-mom vision-details and lengthy anecdotes.
We have four little squares.
The assignment asks for four major milestones. A sentence to be written about each with her age at the top. Simple enough, I thought.
Until I actually thought.
Milestones. Wow, does she ever have them.
Everyday I struggle with wanting to scream at the top of my lungs, “She’s different, you know! She has accomplished more than most can or ever will in a lifetime!”
Sure, she’s having difficulty with reading, potty training and focus. She has fine motor “issues” and gross motor “issues” and still has her paci. Trust me, I’ve learned so much about patience with others who just don’t get it. I bite my tongue. I hold my opinions. I smile and know that I’m probably the only person who will ever get it. She’s my Mary Clare and like every other mother out there, I’ll go down defending and fighting for her til the bitter end.
She’s at an age where she’d rather not mention her surgeries. Maybe she’ll grow out of it, maybe not. Either way will be her way and I’ll respect that.
As we brainstormed her first square, I suggested she draw a picture of herself as a baby with her little half heart. She could write, “I was born on June 27, 2007 and had heart surgery at 5 days old.”
I promise, I try REALLY hard to keep out of projects and school work. I do.
What she did next is no surprise to me. She did as only Mary Clare will and told me to back off. It’s her project.
She would prefer to write about going to school with her cousin Reese. Receiving her Barbie Dream house, playing with neighborhood friends at the pool last summer and taking her crown to school for show and tell last week. Those are her 4 timeline ideas and that’s what we’ll go with.
My crafty mom heart just broke a tiny bit.
As she colorfully illustrated her lifeline, her way, I scrolled through the blog, my heart ached. She has been intubated, paralyzed, sedated, on heart lung bypass and that was at only one week old. She has endured surgeries, seizures, enough medication to make a grown man sleep and yet, she is held at the same standards at all other “normal” six-year-olds. And you know what? She does it.
I’d love to complete the 4 squares for her and plaster them on billboards.
1-I saw her beating, stitched, pieced-together heart in the flesh at 6 days old when her chest was kept open 24 hours for swelling.
2-I held her arms down while she screamed as three 1 inch tubes were pulled from her chest after each of her three open heart surgeries.
3-I held her blue body in my arms while she seized for the longest 10 minutes of my life.
4-I have watched her run and gasp for air as she struggled to keep up with her friends at 80% oxygen levels. (Try running around your house three times holding your breath. That’s what that feels like.)
But those are my squares. Those are milestones for me. Thankfully, she doesn’t remember any of those. So, as profound as those memories are for me, they do not define her. Ironically, they are more about me.
So, crowns, and friends, Barbies and Reese it is. I love my little Rock Star and all of her own little sassy, glittery milestones.