Tomorrow it will be three years since we got the Rett Syndrome diagnosis. Sometimes it feels like time has stood still since that moment. Sometimes it feels like time is racing by. Sometimes I feel like I’m on top of it. Sometimes I feel completely defeated.
These past two months have really put us to the test. And I’ve been more afraid now than I was when I first heard the words ‘your daughter has Rett syndrome.’ I don’t think it’s because I was naive to what the future could hold. I’ve been cautiously optimistic that my kid would beat the odds and be healthy. And we’ve taken every measure to try and make this a reality.
However, her health has taken a nose-dive as of late, as many of you know. And I’m still looking for answers to what’s been going on. But have come up with nothing new.
Physically I’ve noticed that she has been getting stronger. Afternoons and evenings are better for her. She can walk around most evenings completely independently and somewhat safely. But mornings… they take my breath away. And not in a good way. Most mornings she is struggling to stand. Some mornings, she can’t even get herself up to sit. But when she is struggling, she has a smile, and a determined look on her face. It’s almost like she’s saying ‘I’m going to have fun while fighting this.’ I try to take her lead on these things. I really do. But it’s fucking heartbreaking.
Just as she’s been seemingly getting physically stronger, a new symptom has reared its ugly head out which is putting a wrench on her recovery. Breathing. Or lack thereof. The past two nights in a row, it’s taken her 5 hours to fall asleep. Breath holding and hyperventilating for hours at a time. She’ll fall asleep, but forget to breathe while doing so. Which means that a few moments later she wakes up gasping for air. It’s been this terrifying cycle to watch. And there is nothing I can do but hold her hand and tell her I love her and that I’m proud of her and that we will figure this out.
In a few weeks she is going to have a birthday. Six years old. In many ways she is a typical 6 year old – she loves to play dress up and read stories and giggle. But in so many ways she is not. There are way too many hospital visits. Way too many health issues.
The scientific community is inching closer and closer to a cure. Some say it is a matter of 3-5 years. This is not soon enough. But one day, Lily will be rid of this Rett monster. This is a fact.
For those who were considering sending her a birthday gift, the greatest gift you could give would be making a donation to the Rett Syndrome Research Trust. In honor of Lily’s birthday and diagnosis day, I’ve created a fundraising page specifically for her. I have an audacious goal of raising $100,000 by year end. Help me get there. Help me spread the word.
A cure is in sight. And it can’t come soon enough.
Here is the direct link: https://rettgive.org/projects/a-cure-for-lily/