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!!!
Both Lily and I transitioned easily back into our routines. I returned to work with a clear head about the direction we were/likely are going in with the feeding tube. Of course my kid upended it all by devouring most everything in her sight after the appointment with her pediatric GI (who recommended a small feeding tube). So for now, the decision is still somewhat up in the air. She’s still eating well. But I’ve done my research, I’ve written out the pros/cons and I’m as comfortable as can be about this situation.
Which is a good thing as it’s been a crazy few weeks at the office. Thankfully my team held things together while I was out. Actually they did more than hold things together – they did a phenomenal job managing some really complex projects that arose during my absence. And the projects have kept piling up since my return. Currently my team is running multiple community fundraisers and assistance programs for employees who have been severely impacted by these recent disasters (the company I work for operates in over 100 countries and 500 cities). Additionally we hosted Cherie Blair (former Prime Minister Tony Blair’s wife and kick-ass advocate for women’s rights) for a conversation and cocktails the day after the earthquake in Mexico. It’s been both a a sad and inspirational time at work. So much devastation but also so much support for our employees (which my team and I are managing). And to top it off, a cool panel session with some awesome ladies.
As for Lily – she continues to have her ups and downs. But is loving school and her therapies. I’m getting notes from her teachers and therapists that she is blowing them away. I’m so proud of this hard-working kid.
From top to bottom:
- Mom working hard
- Lily letting me know what she thinks about Rett Syndrome on a bad day
- Excited about the first day of first grade!
I am not going to sugarcoat what’s been going on. Lily is having an extremely difficult time doing things she used to do effortlessly like sitting up on her elbows, standing, walking, breathing.
I’ve been busy trying to procure additional help at home – whether it’s friends or family stopping by in the evenings or hiring a morning aide to come and help us get out the door. We just got approved through Medicaid for a home health aid to be with us 24/7 but there are still numerous steps to actually get that support into place. It still may be a matter of months until this service kicks in.
We are navigating through a new, terrifying TEMPORARY time. Through it all, this kid amazes me with her determination, grace and beauty. She is my hero.
It’s a cure for Rett Syndrome. Seriously, it cannot come soon enough.
I went on Facebook earlier and saw that created a slideshow of my recent photos. It made my heart break to see them as it shows just how much my little girl has been struggling these past few weeks – things we all take for granted like breathing, eating, walking. If you’re considering any end of year giving, Lily, her Rett family and I would be eternally grateful if you gave to reverserett.org. We are also accepting prayers and positive vibes.
C & L
PS we are anxiously awaiting eeg results. PPS if you ever find yourself needing to take your kid in for an extended eeg (which is a frequent occurrence for girls with Rett), I highly recommend you try to get it done in-home. PPSS if you ever have a week like Lily and I had, I also recommend that you get as much support as possible. We were lucky to have the fabulous, multi-talented uncle Carlos in town visiting us from Geneva.
As most Americans are reeling about the outcome of the presidential elections, the special needs community is taking it particularly hard. I’ve not been able to put words to my thoughts and fears about Trump being elected. Thankfully a fellow Rett momma warrior, Lauren Cooper Allen, did just that on Facebook’s Pantsuit Nation site and I just had to share. You can click here to see the original post if you have a Facebook account and read all the amazing and beautiful responses. I recommend that you read the responses. It filled me with hope.
This is my 13 year old daughter Molly. She has Rett Syndrome (RS), a neurological disorder that effects 1 in 10,000 GIRLS and WOMEN worldwide.
Molly cannot walk or talk and often has uncontrolled hand movements much like the ones Donald Trump made fun of and mocked in reporter Serge Kovaleski.
I have watched, often silently, as my daughter is stared at. I have watched as people have pointed and spoken in hushed whispers “what is wrong with her?”.
I have spent tireless hours educating others on disability and acceptance, and my fears now have become a hard reality.
Not only does my family face catastrophic cuts to the social service programs that allow
us to care for her at home but I fear that the walls to tolerance and acceptance which we have worked so hard to chip away at are being slowly built back up.
How long before children think it is OK to mock, ignore and marginalize her? How long before she realizes that she is not a valued member of our society?
Here is my plea. If you see a disabled child, please, speak to them, smile at them, let their parents know that you are committed to taking care of the most vulnerable members of our society.
Photo credit: Elise Hanna
#togetherstronger #lovetrumpshate #buildlovenotwalls