Writing letters

My heart is bursting with pride. Sharing a note Lily’s teacher wrote today along with some pictures…

This kiddo had an amazing day! She’s been very interested in notes and letters (wanting to keep re-reading the notes you send in her lunchbox, very proud of the card she wrote for Christine’s birthday, etc). So yesterday and today we started talking more about letters. We talked about parts of a letter (greeting, body, closing) and Lily helped me sequence a letter that I wrote to Ms. Ariel. She was very into the activity (wanted it to be a secret and a surprise, and asked for “more” when the activity was complete). Then, she worked on her own letter. Christine, we sent it home in her backpack. We were blown away… she wrote it almost completely by herself, with nothing but some verbal prompts (e.g. “don’t forget, a greeting is like a hello…”).  She chose who the letter was for, what she wanted to say, and how she wanted to close out the letter. It was really great practice (writing work and using the Tobii), so I’m sure you’ll be seeing more letters in the upcoming weeks.

Today we also read a few more chapters of Junie B Jones and she was laughing hysterically at the silly parts. In one of the chapters, Junie is sharpening pencils (and attempts to sharpen a crayon in a pencil sharpener, which doesn’t go so well). Lily requested, “my turn,” so I took her to the office to sharpen a pencil. She seemed to think it was great fun! She once again did a fabulous job asking comprehension questions during the read aloud, and seemed very engaged. Once again, she was a total cuddle bunny today. At the end of the day, she kept going back and forth between me and Ariel, squealing, and leaning in for hugs. She also put her arm around each of us at least once, which was so exciting! She was very, very happy this afternoon.

See you soon,

Ellie

P.S. Lily and I had matching shirts on today, which she seemed to think was pretty funny!

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Managing Rett Syndrome is a Full-Time Job

A few months ago while Lily and I were flying back from Florida, we struck up a conversation with the woman sitting next to us.  It turns out that this woman works in the media – in a pretty high-profile way.  Vera had never heard of Rett Syndrome and was intrigued.  And so we kept in touch.

About a week into my 5-week leave from work this summer, she interviewed me for an online magazine.  We weren’t quite sure what the focus of the interview was going to be but it became pretty apparent with the first few questions that it was going to be about how the hell I manage working full time and caring for Lily.

You see – I was week one into a 5 week leave and it hit me in these first five days of not going into the office just how much I have on my plate with Lily.  Managing her 4 caregivers, her 2 home-based therapists, her 15+ doctors, filling out medicaid paperwork, filling out private insurance paperwork, making appointments, thinking about her diet, writing about her diet, counting calories, carrying therapy over into the home, ensuring that I’m communicating effectively with her teachers and therapists at school ALL while managing a home (laundry? dishes?).  Holy shit.  I really didn’t know how I was keeping up.  And now that I’m back at work, I’m still not fully sure how it all comes together.  But it does (hint: super helpful caregivers and therapists/teachers).  And so I continue – on most days, with a smile on my face.  Because I really have the sweetest, smartest, bravest, funniest, coolest kid in the world.

If you want to check out our interview, click here.

Back to Work, Back to School

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:

  1. Mom working hard
  2. Lily letting me know what she thinks about Rett Syndrome on a bad day
  3. Excited about the first day of first grade!

Scenes from a beach vacation

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

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.

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At school earlier today playing with bubbles!

 

A hell of a disorder

What a difference a day makes. Yesterday she could barely stand. Today she walked to school all smiles.

She was super wobbly when she woke (unfortunately this is quite common most days) and she only had a few tiny sips of smoothie this morning. But once I started talking to her about her day (school with friends, and then summer camp), she perked up.

I’m grateful for these mornings when she can walk to school. And it’s in these moments that I remind myself how lucky we are.

We have a few big doctors appointments coming up. Next week we are checking in with the nephrologist about the pee situation (which is still a pretty big issue). And then in August we are seeing the GI doctor. This appointment is the one I’m dreading the most. You see, Lily has lost 3.5 pounds since February. This is a lot of weight loss for her tiny frame. We will be discussing whether she needs a feeding tube. Her eating has not returned to the levels needed and it is concerning (to say the least).

I will keep you posted.  In the meantime, we will continue to make the most out of this summer.  This may just be my kids favorite season. And damned if we’re going to let Rett Syndrome get in the way of our fun.

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Looks from strangers

IMG_7090Whether we’re walking down the street together or I’m pushing her in her adaptive stroller, we get stared at.  Some people are sly about it – they look out of the corner of their eye.  Others are overtly staring – gaping mouthed – at us.  Some days I can ignore it.  Other days, I stare right back at them.  It really depends on how much sleep I get the night before.  This issue has been a BIG topic of discussion on one of the many amazing special needs parent groups that support me and Lily along this journey of ours.

One mom (shout out to Jackie from Queens!) piped up some awesome suggestions which I want to share with parents who are on a similar journey and also for our friends/family who want to better understand just one of the many micro-annoyances that are a part of our day-to-day lives.

1) You have to stop caring what other people think. Completely. Unequivocally. From the bottom of your heart, stop caring about other people’s opinions relating to your child or your parenting. YOU ARE DOING YOUR BEST AND YOU ARE DOING A GREAT JOB! (how do I know? because we are all trying our best – that’s why we’re here on the chat board) The rest of the world just has no clue, and it is unreasonable for you to expect them to. The rest of the world is NEVER going to understand what our lives are like – it would be impossible to convey the mountains of information relating to our kiddos and we each have a different story.

2) You should keep in mind that (even if it seems like they are really really not) those other judgy, nosy, know-it-all people are doing their best too! Their best just sucks, but it’s not really their fault – no one taught them good manners or how to behave. They don’t have good tools to share suggestions in a helpful way. People often don’t think things through, they just act.

3) If you can’t beat em – join em! LOL!!!! I am a big fan of dealing with other’s inappropriate interventions with passive-aggressive techniques! If I’m on the subway and actually feel like bothering to address the people who are glaring at me and my 6 y.o. who is having a melt down I will LOUDLY remind my daughter that I’m not going to give in to her meltdown, that doing so would teach her that she will get what she wants by throwing a temper tantrum, that it would be unfair for me to not provide consistency and stick with consequences that have been pre-determined (if you keep hitting your brother I am going to put you in the stroller, etc), and that when she has a calm quiet voice and body I am looking forward to helping her and addressing what ever is causing her to feel so upset. My daughter can’t hear any of this, of course; when she’s melting down she’s in full-on fight-or-flight mode and has lost connection to the outside world temporarily. .. but the rest of the glaring people can hear me 😉 and honestly, I think they know I am talking to them, not my daughter.

Someone who intrudes upon your life is small and petty and not worth one second of anxiety. They don’t have the right to cause you stress!!!! I do understand your anxiety, I used to feel it ALL the time, and then I just let go … one day I stopped and looked at the big picture and realized that I was so hard on myself, being critical b/c I knew my kids were disruptive and annoying to others – but I thought about what advice I would give to a friend with unruly kids and I realized that I was just not being very understanding or nice to myself. Be as understanding and caring and supportive of yourself as you would be to your dearest friend. What we do it SO HARD! Give yourself credit and take care of your self and don’t worry about what other people think.

I’m hoping that one day I can completely ‘let it go’ like this wise momma has done. Until then, I’m going to pray for as much sleep as possible.