A trip to Columbus Circle

Posted on June 11, 2023 by mommabear0208

Lily’s been talking about going on the subway for a while. The other day, she mentioned that she wanted to go at 11pm with Stephen. 😳

I told her that 11pm was too late (who stays up that late anyway?) and unfortunately Stephen wasn’t able to come but would she want to go with me on a Saturday afternoon?

She was more than happy to oblige. So we took the train to Columbus Circle, where she helped me find the elevator exit (check out the video). We got out, did some window shopping and had a blast.

But the trip tuckered her out. It’s been a rough few weeks as we’ve been struggling with seizure management- she’s been averaging @ one a day.

Even with all the setbacks, none of it stops her from living and laughing.

She is truly an amazing human being.

Sixth grade: seizures and screaming and scoliosis and Hope?

Posted on September 8, 2022 by mommabear0208

This is not your typical beginning of the school year update. I don’t have time for nostalgia as we’re playing a thankless game of whack-a-mole and the stakes are terribly high. Where to begin….

Lily started having seizures at the end of May. We’ve been working with her neurologist to find the right medication but it’s a long process of trial and error. Seizures are scary. And they’ve been happening daily. This sucks.

Also, and likely related, she’s been getting easily overwhelmed. It started with sneezing and coughing – she’d break down crying whenever someone made an unfavorable noise in front of her (which curtailed our already limited social engagements) but now she’s been having full blown meltdowns. Daily. Usually in the afternoons. And for no known reason. This sucks too.

And as if those things weren’t enough, the latest result from the orthopedic surgeon show that not only has Lily’s scoliosis progressed, but now one of her legs is growing at a different pace. What. The. Suck.

The Hope? Well the Hope (not sure why my autocorrect keeps capitalizing this word but I like it) is that maybe going back into a familiar routine will help us all move into a new normal with less pain, less screaming, more peace.

And throughout all the hell this child deals with because of Rett syndrome, she still continues to have moments of calm and joy and positivity.

Thankfully, for her first day of 6th grade, she had a good day.

2.22.22

Posted on February 23, 2022 by mommabear0208

On the socials, everyone was posting that it was going to be a magical day.

I had high hopes for it as well. Not because of some particular date. But because I was finally going to spend one full day with Lily – no caregiver, no Stephen – just us two girls, like how it used to be years ago. We were planning to buy her a new spring jacket and then head over to the history museum. A girls day. Get dressed up. Put on some makeup. Have some fun!

I was extra excited because it was the first time in a long time that I was feeling confident about going out with her alone. No stroller (that she doesn’t fit into anymore anyway). Just reliance on our legs and public transportation (and maybe a taxi if we were in a pickle).

The morning started off easily enough. Stephen got her ready for the day while I ran down and trained at our gym with a guy whose teaching me the Turkish getup (look it up – it’s legit). Once upstairs, Stephen headed off to work. I pulled up all the trip hazards (rugs) in our bedroom and Lily chilled in there listening to music while I took a quick shower. Once I got out, I started talking to her about our adventures for the day. She was very excited. And was following me around. I started to put some makeup on in front of the hallway mirror and she ventured off into the bathroom to look in the mirror there. Then I heard a thud.

And that’s when the day fell apart. Lily somehow tripped and fell into the tub. She semi-caught herself with her hands. But she still managed to bang her mouth.

The screaming was delayed. And that’s when I knew it was really really bad.

There was lots of blood coming out of her mouth and her two front teeth were nowhere to be found.

Thankfully there were no broken bones. I called Stephen to come home. I called the dentist to tell her we are on our way. None of this I remember very well.

The rest of the day was a blur of blood and screaming and crying (including mine) and holding her so tightly and Stephen taking care of us both, keeping level-headed and calm as I was feeling anything but.

I guess the magic of yesterday for us was that she didn’t lose her teeth. They got pushed back into her gums. Hopefully they will come down naturally. But if they don’t, she’ll need surgery. We go back to the dentist in 2 weeks to check in. And then another 2 weeks to decide about surgery.

For the most part, Lily is well; she’s got a fat lip and a huge gap in her mouth. But last night and this morning, she was smiling and giggling.

It’s going to take a while for me to find a place of peace. My confidence as a mother and a caregiver is shot. My heartbreak and grief over what happened to her on my watch feels insurmountable.

But I will push forward. For her. For me. For Stephen. For us.

This is my grief. Not hers.

Sprinting a marathon

Posted on April 25, 2020 by mommabear0208

We have been up here coming on seven weeks. In some ways, it feels like it’s flown by. In others, it seems to drag on. And on.

We are also coming on 7 weeks with no caregiver, full-on homeschooling (which ends up being about 4-7 lessons or therapies a day for Lily) and two full-time jobs that are in the throes of trying to help people through this pandemic. Thankfully we both have some flexibility in our schedules. Stephen is working mornings doing this and I’m working afternoons doing this. As we both manage global teams, our schedules can’t always stick to what we’ve tried to carve out. But we make it a point to participate daily with Lily in her lessons/therapies.

It is more work than any two people should be able to handle or be asked to handle. And as this doesn’t look like it’s ending any time soon, we’ve started to put feelers out there for temporary live-in help.

Don’t get me wrong – we are grateful. Grateful to be spending more time with my two favorite people. Grateful that we are all healthy (or in Lily’s case, healthy-ish), we have jobs, we’ve got a beautiful house to camp out in, and we’ve got a school and an army of therapists who have been working with us from afar to figure out the best way to teach/treat Lily.

But we need help. So I am putting it out there to the universe (i.e., you)… if you know of any college student tired of living at home, wanting to make money and is interested in special needs or maybe you know a therapist or a para-professional or a person who used to be a nanny or caregiver who is looking for a job and a temporary home and wants to spend the next few months living in a private cottage on 2 lovely acres with a swimming pool, taking care of the sweetest, coolest kid in the world, please send them my information so we can talk.

Fingers crossed that the universe will provide.

Take good care.

Love,

C & L and S

It takes a village

Posted on November 3, 2019 by mommabear0208

It takes a village – literally – to get this kid places. Trick-or-treating is just one example. Below are a few photos of behind the scenes efforts, and a few cute ones of her thrown in for good measure.

Lily wanted to love Halloween, and we did get a few smiles from this cool cat. But there was also tears and exhaustion and not having the energy to walk at times.

We are both so lucky to have so many angels on earth helping us, and they came out in droves on Halloween!

So we went trick-or-treating New York City style, up and down the streets of Columbus Avenue and through the cross streets that go all out with decorations (west 68th and 69th Street FYI). It was an exhausting, but mostly fun time and we got entirely too much candy. Come over and help us eat it before we turn to sugar cubes!