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.
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.
I just got this note from Lily’s teacher. After yesterday (we were at the hospital for a scheduled appointment for most of the afternoon – she was a champ throughout), this kid deserved to have a great day!
Lily had a great day! She was hungry at the end of the day, and was drinking more of her smoothie as she walked out of class. She may want a snack when communication camp is over. I gave her a blueberry cereal bar, which she loved (recorded it in her food diary). She squealed with delight when we brought it out. At recess, she was walking up to kids from other classes and giving big smiles. It was awesome! She was using her hands a lot today. With an elbow tap, she waved several times (at Ally and then again at the student in the attached picture, Jamie). She also gave a high five. She kept her hands in the shaving cream without support for I think 27 seconds! She also was playing with a switch operated toy in which you push a button to make a toy dog walk/bark. She was laughing and working hard. Great job sorting during math and working on letter ID activities as well.
I’m so proud of this kid!
This note came home on picture day:
Lily had a fantastic day! She was so excited for picture day. She looked like a model in her pictures. She posed very well for the photographer. She worked so hard the rest of the day. Lots of energy today! Miss Ariel (one of Lily’s therapists) said, ‘Lily, I want to hear your voice.’ And she yelled for us! She also requested ‘clementine’ ‘smoothie’ and ‘juice’ during snack time. Then she said it was ‘yummy.’ Also, one of her teachers was talking to Lily and the teacher said, ‘I’m not sure if you heard me Lily’ and Lily replied (via the tobii, with zero assistance), ‘I understand.’ This kid!
We get the photos in a few weeks. I’ll be sure to share them.
The other week I launched a matching campaign to celebrate Lily’s birthday. I was overwhelmed by the donations that came pouring in. Within 24 hours, we had raised well over the $1500 target. The campaign is now at 12% of my fundraising goal for the year. Obviously we still have a ways to go but please continue to share this link with family and friends near and far. We are getting so close to a cure and holy cow do we need this now more than ever.
On February 8th, Lily is going to be six years old. In honor of her upcoming birthday and my unwavering desire to obliterate Rett Syndrome, I will match up to a total of $1500 donated to her RettGive.org page between today and the 8th.
I’m so proud of this kid – she literally smiles in the face of adversity. I see it every day when she’s struggling to stand, walk or breathe. I see how hard she works to do – well – almost anything right now. I pray for the day when Rett Syndrome will be just a painful memory.
For those who have already generously donated… from the bottom of my heart, thank you! Your support and love is palpable. For those who’ve not gotten around to it yet, or don’t feel that giving $10 or $20 will make a difference, believe me when I say that every dollar counts.
Lily is the bravest, sweetest, smartest, hardest working almost 6 year old that I know. And I know that one day in the near future she, and her Rett sisters, will be cured. But without funding, it will remain a pipedream.