Tomorrow is D-day. The day four years ago when we got Lily’s Rett diagnosis. I remember it like that recurring bad dream that you just can’t shake. The worst dream – actually – you could imagine having about your child. Unfortunately it was our reality. It is still our reality.
I naively thought/hoped that by now, there’d be a cure. No one made me that promise, but it was a piece of hope that I held onto as the science – even four years ago – seemed so promising.
Today, four years in, I’m living in that in-between space. I can’t have too much hope nor can I have too much despair. Every few weeks I hear positive news about how much closer we are to a cure. Every few days I hear about another Rett girl dying. So I try to walk around with blinders – shutting out the hope and the despair, living in the now. And some days, this trick actually works.
But enough about me. How is this impacting Lily? She will be seven years old in a few weeks. Cognitively she’s all there. But her body is at war against her. And this is taking its toll. I see it in her eyes – she has SO MUCH she wants to tell me. She has SO MUCH to say. And she is SO FRUSTRATED. I’m grateful for the Tobii and her therapists – because of them we have a window into her thoughts. But this is a very high-level window. We know how she feels, how she’d like her hair to look, how much she knows about the weather and the date and the time and the book that she’s reading. We know that she has a very silly sense of humor. Trying to have an in-depth two-way conversation with her, however, proves to be elusive. ‘Lily, WHY are you sad?’ ‘Lily, WHAT exactly hurts right now?’ ‘Lily WHY do you keep talking about monsters?’ These are some of the questions that just can’t be answered. At least not yet.
Lily desperately wants to be a ballerina. But there are some mornings when she can barely keep her feet under her. She desperately wants to play with other kids. But only once – yes ONCE – in almost seven years have I seen neurotypical kids look to actively engage with her. Once. It was at my aunt’s birthday party last year and these sweet kids (who were complete strangers about Lily’s age) came over and asked to play ‘Rock, Paper, Scissors’ with her. Even though I had to do hand-over-hand and we lost terribly (I still don’t fully understand those rules), she had the best time ever. I cried. They were mostly happy tears.
I tell her every day that she can do whatever she sets her mind to. I tell her every day that she is the bravest, hardest working, smartest, silliest, prettiest almost 7 year old that I know. That second sentence is truth. The first sentence I desperately want to be true. I am basically willing it into existence.
My ask to you is this: if you were thinking of getting Lily a birthday present, the best present you can give right now would be to make a donation to Lily’s fundraising page for the Rett Syndrome Research Trust. I don’t care if it’s $5 or $5000. Help me will her cure into existence. The science is so promising. And if I take my blinders off for a moment and try to bask in the hope, I’m pretty sure that by the time she’s 10, there will be a cure.
We didn’t make it to Florida this past weekend as Lily was too weak to travel. It wasn’t because of her tummy (which was the big concern last week at this time) but because she was battling a fever.
I got a call from school last Wednesday telling me that Lily had asked to go to the nurse. When the nurse took her temperature it was hovering around 100 degrees. Not too bad but the poor kid was feeling miserable. And she wanted to go home. So I rushed from work to get her.
By the time we got home, she was her normal, bubbly self. But over the course of the next 24+ hours, she would swing from feeling fine to just plain awful. At one point she had the shivers so bad that I had considered taking her to the ER. (Sidenote: high fevers can trigger seizures and as Lily is already prone to them, it was imperative to keep her fever regulated.)
On Friday (the day we were supposed to fly out) I took her to the doctor where we ruled out strep, the flu and UTI. Likely just a viral infection. I was hopeful that we could get to Florida on Saturday but when I checked her temperature that morning, it was not good.
So we’ve been home in NYC on this cold and blustery weekend. Cuddling up a storm, watching movies, and enjoying the visitors who have come to help out and cheer us both up.
This is the first morning in four days that she’s not been feverish. So tomorrow she goes to school. I’m still taking the day off work. I need some time to recuperate!
We are both so sad to have missed seeing our family in Florida. But I’m so grateful that we were only battling a regular kid issue. Kids get sick from time to time. And Lily handled it all with such grace. She’s amazing.
I’ve said this before and I’ll say it again: Rett Syndrome is no fucking joke. Even for a relatively healthy and high-functioning girl like Lily.
Even though her team of caregivers and I actively manage her food intake and output, she still gets terribly backed up from time to time. Last night, however, was exceptional. She was in so much pain and was trying so hard. None of my standby tricks worked.
It was a tough call to make – do we spend the night in the hospital or do we ride it out at home? I’m so grateful to have a plugged in network of Rett moms to turn to in moments like these. And also so grateful to have had Shamekia the nanny (soon to be nurse) on hand with me for much of it. Stephen was on standby. And John came over to drop off supplies from the pharmacy. I felt very supported. But also very scared. And helpless. It’s in moments like these that I wish I went to medical school. I made the right decision last night to stay home. But that might not always be the case.
Thankfully Lily woke this morning with a smile (we finally had some success unclogging her late last night). She’s the most resilient person I know. She’s my hero.
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!!!
Yeah… we bad. We bad.
Actually, we bored!
Lily is ready to get back to school. She’s been sobbing intermittently for the past few days. Likely because she’s been cooped up and is missing her friends. Or maybe today it’s because she’s not peed in over 18 hours. There’s a lot of calculated guessing when it comes to figuring out what’s going on with her.
Anyway, it was pretty apparent when she came home to me yesterday evening that she wanted to go outside.
But as it’s currently hovering around 15 degrees Fahrenheit and she has zero body fat, there was no chance that we were going to venture out in the dark last night.
Our first 20 or so minutes at the museum were tense. She was not pleased. But we finally made our way to the Native American section which she loves; she eventually perked up – her favorite music, Snapchat filters and bead displays helped. Lily spent about an hour roaming about looking at furs and feathers while I played bodyguard, blocking her from other museum patrons.
So the museum was mostly good, though exhausting as I had to carry her for much of it. And the other half was spent chasing after her.
Next on our agenda – lunch! The restaurant was 4 short blocks from the museum so I decided that we should walk. I mean… she was busting to get outside last night, right? Well it turns out that Lily likes the cold and snow even less than me. After about a half a block of walking/carrying, she burst into tears. Thankfully a taxi driver took pity on us and took us three(!) blocks to our restaurant. He was very kind and laughed along with me at my kids over-reaction to the snow.
Thankfully she ate her lunch – in between sobs – and I got mine packed to go. We braved the short block and a half to our home – amidst the sobs – and now we are home. And it’s only 2pm. And she’s still not peed.
Wish us luck.
Lily was so excited about Christmas Eve that I couldn’t keep her still for a photo. She was literally squealing with joy. I was pretty excited too as we got to spend it with the Darlings, our beloved cousins.
I had forgotten how fast Lily can be. It’s been so long since I’ve seen her move like this. And she’s gotten taller. So it now takes about two steps for her to dart out of a room and down the hall. I got a lot of exercise chasing after her that night. And I was so grateful. Watching her run around giggling felt like a Christmas miracle given how she was doing last year at this time.
Christmas Day she was feeling a little hungover from the previous evenings excitement. So we took it easy. Opened presents. Ate pancakes (courtesy of Stephen). And opened more presents. For lunch we went to Benihana. I think Stephen and I were more excited about it than Lily. We didn’t even realize that there was a Benihana restaurant in Manhattan until we started researching places to eat. Lily enjoyed the flying shrimp and the onion volcano, but not as much as the adults did!
The rest of the day we chilled out at home – playing with our toys, reading our new books, wearing our fabulous new jewelry and feeling very loved.
For New Year’s Eve, we will likely have a crazy fun party. In mommy talk this means popping popcorn, watching High School Musical and in bed by 9. A pretty perfect sounding evening for me and my girl.
To everyone who showered my girl with love this holiday season: thank you! Lily felt so very special. And so did I!
C & L