So here we are. Back at the hospital.
Lily is participating in a research study over the next 40 weeks on the impact of cholesterol on girls with Rett syndrome. The premise: lowering cholesterol levels in the brain (which are unusually high for girls with Rett) will improve gross motor function. Preliminary research is promising. (And if interested, I will email you the research paper).
I’m filled with tempered hope that all these tests my sweetie is, and will be, undertaking (along with 19 other Rett sweeties) will be worth the effort.
She is so brave. She is so strong. And I’m in awe at how she is taking all of these wires and pricks and prods in stride.
Our follow up appointments – thankfully – will be much less intrusive than this first visit.
I will be sure to keep you all updated on the progress.
C & L
Lily came home from school today in such a great mood! Likely because today was the first day that she had a Tobii at school (which took a year of advocating). Using the Tobii, she told her teacher today that she loves her cousin and grandma and that she wants to go home and play with the nanny.
A good week indeed!!!! My kid has a voice at school. Finally!!!!!!!
Last night I declared to Lily, after we experienced a difficult transfer with her dad (‘difficult transfer’ is code for ‘argument’), that this week was going to be a good week for the both of us. She smiled in agreement.
And so far it’s been great. She passed out last night at 7:30 while we were watching Mary Poppins and slept until 7am this morning.
I woke up effortlessly at 6am and had some time to meditate and do yoga and even have a cup of coffee in silence before her day started (che miracolo!).
We are both rested and refreshed and excited about the great week ahead of us.
Wishing you all a wonderful week as well.
C & L
Barely made it through the first 5 minutes of Mary Poppins!
I was brought to sobbing tears this evening on my commute home.
As I was exiting the subway, a little girl (likely around L’s age) and her dad were in front of me on the stairwell. The little girl was singing as she was effortlessly climbing the stairs while holding her dad’s hands. Once they got to the top of the stairs, she turned to her father and said, “Daddy, aren’t you proud of me? I made up that song all by myself!”
It was a sweet, intimate moment that people in crowded cities are privy to overhearing.
At that point, all I wanted to do was get home after a long day at the office.
But there I was, inadvertently eavesdropping on a ‘typical’ exchange between a daughter and her father. And it flooded me with grief, and jealousy. Not about the father part – that wasn’t even a thought. But about this little girl’s ability to sing and make up lyrics and walk up the stairs. And talk.
I want my child to talk. And to walk up stairs effortlessly. And to sing. And to verbalize her silliness. And to not have to work so hard at everything.
But until that happens, I have to continue working on managing this grief that I carry around with me. It’s always there. And most times, I’m in a strong enough space to not let it engulf me. Lately I’ve been finding this harder to manage. Maybe because sleep has become elusive in our home again or because we spent the weekend with neurotypical kids her age and younger who were doing things I only dream about for L.
Living in a state of grief is not an option for me. Who wants to be depressed all the time? Especially when there is so much to be grateful for. I’m so lucky that my sweet L is healthy and ambulatory and is learning how to communicate through nonverbal means. So I will follow her lead – when I fall, I will climb my way up and be proud that I made it back to standing.