It’s 5:30pm on the 24th of January. And it just hit me. Today marks 5 years since d-day–Lily’s Rett diagnosis day.
What a 5 years it’s been. What a roller-coaster. But I wouldn’t give it up for anything. I’ve got the sweetest, coolest almost 8 year old I know. She is my joy, my inspiration.
Don’t get me wrong, it’s not easy. Every day I say to her when she’s having a tough moment–like trying to walk in the morning or crying uncontrollably in the middle of the night–that I can’t fix things. But that I can make them better. With love and comfort and compassion. But I can’t fix it. I can’t fix it.
That sucks. No one should ever have to see their child suffer so much. Every day. Every day. I’ll say it again: every day.
And we are so fortunate right now as Lily is going through a relatively stable period. And the ‘relatively’ is truly that. I am not trying to sugarcoat any of it: our ‘normal’ is anything but that.
So it’s been 5 years. And we’re getting closer to the ‘cure’ but it’s still not here. And every day as Lily grows and Rett continues to ravage her body, that ‘cure’ looks less and less like a cure for her. At this point I’ll take whatever it is we can get. Just to let her have the ability to breathe with ease, to wake up and not be in pain… I’ll take it.
I can’t believe she’s going to be 8 in a few weeks. I can’t believe how much she’s grown and changed. I can’t believe how much I’ve transformed because of her. And for that, I am grateful.
In so many ways, she’s such a ‘normal’ kid. She’s been putting together weekly hair menus letting me know how she wants her hair done every day. How freaking cute is that? Currently she’s all about pigtails. As you can see from the menu and hairstyle:
Her birthday is on the 8th of February. And I wish I could give you a list of things she wants as presents. But I don’t have one because she cannot tell me outright. So if you want to do something for her, consider making a donation to Rett Syndrome research. Not only will it go to her future, but the future of all her other Rett sisters and brothers.
C & L
As you know, the east coast was hit with quite the storm. Lily and I hunkered down and did our best to enjoy her day off from school.
We played dress-up, read books, watched movies and even went outside for a nanosecond. She doesn’t like the cold or the snow. She too must be a Floridian at heart like her momma.
Winters are not easy for Rett girls. Not only is it more isolating than usual, but also they struggle more with their health. Peeing, sleeping, breathing and eating have become concerns again in this house. For the most part, she’s staying positive. But she’s had more than a few moments of feeling miserable and sad. I’ve seen many more tears than usual these past few weeks.
We are both trying to keep our spirits up. It’s not so difficult to do as we are heading to Florida to visit our family next week. We are both excited to feel sun on our skin and sand under our feet. And of course see our relatives!!!
Adventures with mommy! Pete the cat book launch followed by lunch at 5 Napkins and a stroll in the park (mom had to do minimal carrying of child)
I know these photos don’t depict a child struggling with severe anxiety but she is.
Screaming and crying for hours at night, unable to be consoled in any way, it’s been heartbreaking. And exhausting.
I’ve been in touch with her specialist. We are considering changing her sleep medication. She’s only on one medication for sleep. Clonidine. And am so grateful that we’ve been able to keep the drugs to a minimum so far. Most girls with Rett syndrome are on upwards of half a dozen medications.
Clonidine obviously hasn’t been working so great lately. But I may have found something that has – continuos release melatonin. It never worked for her in the past, but the past two nights she’s been sleeping. Is it luck? Is it melatonin? I don’t know. But I hope we continue with this streak.
As many of you know, this is the title of a popular, yet confusing and somewhat annoying show here in New York City. It’s also the title for my life right now, which is somewhat confusing and annoying.
I know this sleeplessness is just a phase. But it’s going on way too long. And it’s different from her previous episodes. Lily’s inability to fall asleep lately is tinged heavily with bouts of hysterical laughter. Yes, it’s cute. And a lot of the time I do laugh alongside her because her giggles are infectious. For those of you who are fortunate enough to have heard her belly laugh, you know what I’m taking about. But at midnight? When it’s been going on (and off) for a few hours? It’s not so funny. It’s downright alarming. And annoying. There, I said it.
So I’ve been researching the laughter. And it turns out, it’s one of the many facets of Rett syndrome. Something neurological is going on in this kid’s mind. And it is likely linked to the increased ‘Rett episodes’ she’s been having. Yup. In August, and into September there have been more than a few times that she’s woken up, shortly after falling asleep, with scary shaking and convulsing spells: she’s fully aware of what’s going on and is looking at me with terror in her eyes begging me to make it stop. That, my friends, is Lily’s version of a Rett episode. It’s not a full on seizure as she’s present during the convulsing. But something terrifying is going on in her brain. And it’s terrifying the both of us.
These episodes have also impacted her physical function. She’s become much more clumsy these past few weeks.
We are going back to the hospital in early October to see the Rett specialist. Likely the doctor’s recommendation will be to give Lily the trazadone she prescribed last year when her last awful sleepless period happened.
For now, I’m keeping an epileptic activity journal, noting all the times Lily has these ‘Rett episodes’. And, in the meantime, I will do my best to keep laughing alongside my sweetie.
Lily’s favorite sleeping position, ‘the starfish’.