Staring down the barrel of a gun

Posted on May 4, 2024 by mommabear0208

Maybe it’s time to rename this site. Maybe it’s time to retire my online ramblings (which I know have been few and far between these past few years).

Now that Lily is older, I am constantly struggling with what I can share with the outside world. She’s a teenager now. I want to be respectful of her privacy.

At the same time, this is such an isolating life we are leading and I know other families are struggling in similar ways so not sharing some of our truth seems like holding back from helping others out.

Here’s a hard fact: the teenage years are–by far–harder than anything Rett Syndrome has thrown my way. I never thought anything could top watching my child lose her ability to talk, use her hands purposely and not grow properly. I was most definitely wrong.

And we are just at the beginning of her teenage years. She’s only 13.

Currently we are facing:

Scheduling numerous intensive surgeries (for skeletal issues)
Seizures (currently under control with medication but can change in an instant)
Sleep (currently under control with medication but can change in an instant)
GI issues (somewhat under control)
Growth issues
Mood disorders (the medications we tried made things worse)
Creative (scary) responses to common and not so common medications
Communication challenges
Movement issues
Much, much more

All with the backdrop of not having enough family or caregiver support while navigating complex and bureaucratic medical and educational systems. With the biggest elephant in the room being what will her life look like after she ages out of the school system? The to-do lists and advocacy work are endless.

The funny thing about not having enough family support is that–when I think about it–Lily DOES have immediate family nearby (unlike me whose immediate family live in Florida). But she’s been abandoned by her father and his side of the family. Sure they send gifts from time to time. Maybe I get a child support payment once or twice a year. But that’s it. Lily recently asked to spend a week with her dad’s side of the family over the summer which I communicated to her dad recently. Do you know what his response was? NOTHING.

It’s truly heartbreaking. On top of all the challenges my child faces, she also has to deal with abandonment issues.

So, the question is how to find peace and joy with all this heartache, suffering and loss?

For me, the short answer is this: seek out beauty. Sometimes this means going a few blocks over to RIverside Drive to avoid the bustle and noise of Broadway while driving LIly to and from school. This means walking around the Botanical Gardens after a long hospital visit. This means making our home beautiful and tranquil. This means finding so much joy when Lily is happy and giggling. This means having a peaceful dinner with my husband on our back patio.

Another bi-produt of this phase we are in is that traveling with her is not an option. We can’t even take her to restaurants as it’s too overwhelming. But damned if I wasn’t going to make her spring break eventful. Every day I made sure we had an adventure. The first day we went to Untemeyer Gardens where we (randomly!) ran into my Uncle Richard and his lovely wife Archie. The next day, we went to the farm (her favorite destination) and met up with friends there. Both of these activities were hard for her. So I had to think smaller. We ended up spending the rest of the break exploring garden centers in lower Westchester county. It was perfect – a contained, quiet and peaceful place with beautiful flowers as far as the eye could see. Beauty as far as the eye could see.

Even when we’re being chased by the gun that is Rett Syndrome, we still find our way towards beauty.

One of our many garden center adventures

Aloha!!

Posted on February 19, 2019 by mommabear0208

Lily’s 8th birthday was such a success. In the lead up to her birthday (and the subsequent week), she was ecstatic. Birthday parties, Valentines Day and Hawaii? All in one month? It was almost too much.

But not really – seeing her so happy and (mostly) healthy – especially at this time of year – is such a relief.

We are day 3 into our Hawaiian adventure and this kid hasn’t stopped beaming. Thank you Make-a-Wish! Here are a few shots… leaving for Honolulu at JFK, getting a tour of the cockpit with the captain of the plane at landing, riding a limo (with Urszula), relaxing at the pool/beach and partying it up at a luau! More photos to come.

Scenes from a beach vacation

Posted on August 23, 2017 by mommabear0208

Holy cow have we been having fun! From the Cape to Shelter Island, Lily and I have been surrounded by laughter and love – from old friends to new.

Here are a few photos which capture some of our adventures. If you want to see more, let me know. As usual, I took too many pictures of this sweet kiddo.

Our first full day in the Cape (with the Bernsteins!) was your typical romantic New England weather: chilly and gray! We spent the day reading books at the beach house and in the library. Hint: the Wellfleet library has an amazing kids section that rivals the old FAO Schwartz on 5th Ave – complete with costumes and stuffed animals.

We also had a lot of fun using the Snapchat filters once all the books were read.

The next day, the clouds parted and we went to the beach. While we didn’t find any mermaids, we did see some seals!

And the following day was more of the same: perfect company, perfect weather and perfect waves! The ocean was too cold for Lily to go in and it was almost too cold for me. But I braved it and jumped in.

The next day, we embarked on the second part of our beach vacation: Shelter Island!! Lily and I had the most fun time riding the Cross Island Ferry on our journey. I think we ran around that big boat at least 3 times. And of course, Lily made a bunch of new friends on the ferry.

We spent a week in total at Shelter (thanks to the Nelsons!!!). The weather was beautiful and the beaches were lovely.

Our first day out there we met up with the Rogers family in New Suffolk to watch the boat races, which has become an annual tradition. This year we had the addition of Elaine, Lily’s SLP and our family friend.

Lily and I took a much needed break from the sun on Friday and met up with Stephen (who came out for the weekend) to ride the carousel in Greenport. We also had the opportunity to see our friends Maren and Ben DeSantis too.

On Saturday and Sunday we hit the beach with the Nelson-Dollar clan. We spent both days searching for mermaids but only found mermaid toenails (i.e. magical looking shells that come in all colors of the rainbow).

And on Monday, Lily and I watched the eclipse, borrowing eclipse sunglasses from our newfound friends. I’m telling you – this kid is super social.

Lily is now on the second part of her vacation – the Poconos with her dad. I’m also on the second part of my time-off – the Sivananda yoga ranch upstate. I’m going to miss my sweetie so much but I’m looking forward to getting some down-time. I’ve got some big decisions to make about Lily and need to process it. Though we had a great trip, her appetite was a big struggle. And even when she was hungry and wanting to eat, it would take upwards of an hour for her to have a meal. It’s not been heartening. But I’m grateful to have had the time to get to learn as much as I can about my kids struggles, and her abilities.

Om Namah Sivaya.

Seven Lessons I’ve Learned From Rett Syndrome

Posted on July 19, 2017 by mommabear0208

I know what you’re thinking… you’ve not heard from me in ages and then within 24 hours, I post three things.

Well they say that all (good or bad? I can’t remember the saying) things come in three so this will likely be my last one for a while. And it’s really just a repost of what another wise momma wrote. It resonated with me so much that I wanted to share it here.

Thank you momma-warrior Joanne for sharing your insights, specifically the ones on bizarre symptoms and respite. She has nailed it with her commentary on what Rett Syndrome has taught her. Like I said in my earlier post, it’s a hell of a disorder.

At school earlier today playing with bubbles!

Struggling

Posted on January 13, 2017 by mommabear0208

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.