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.

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Some good news

The week started out tough.  Lily got a ‘failure to thrive’ diagnosis on Monday from the nephrologist.  This is like getting (as one wise Rett momma so eloquently put it) a punch in the gut.  Hearing those words, especially as a mom, well… the guilt and disappointment and anger is indescribable.  I walked away from that appointment trying to not feel like a total failure as a mother. Thankfully my kid was being extra sweet and silly which helped shake me out of my funk.

The next day I got a video from school showing Lily holding onto the handlebars for close to 40 seconds while riding a bike.  This is HUGE.  Her hand function has slowly been improving over the past few weeks.  I can’t post videos to this site so you’ll have to settle for a screenshot instead.  If you’re on Facebook, I’ll be posting the full video shortly.

And then this morning, we had to see her pediatrician to get his signature for a Medicaid form.  They do not make it easy to get, nor maintain Medicaid but holy cow am I glad that Trumpcare failed because I’m not sure what we’d do without it.  But I digress….  We did a weigh-in at the same scale we used 5 weeks ago and according to the scale, she gained 2 pounds.  It’s taken a lot of effort – and patience – for both Lily and her nannies, therapists, teachers, parents, etc. to get here.   And we’re not done yet.  She’s still 3 pounds away from where she was 6 months ago but she’s starting to gain it back.

How did she gain 2 pounds in 5 weeks?  Well, Lily’s been on a steady diet of home-made mac-n-cheese, duck, tater tots, cupcakes, avocados, yogurt, pudding and pizza.  I’m still slipping in super healthy stuff for her morning smoothies to ensure she’s getting the vitamins and minerals her body needs.  But she’s basically eating anything and everything she wants.

In two weeks we are seeing the GI doctor to discuss further this ‘failure to thrive’ issue but I’m hopeful that the conversation will be a mostly positive one.

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Holding on to the handlebars like a pro!

A great day!

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!

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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Someone’s having a fun summer

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Finally!  Her kindergarten headshots.  Lily chose her overalls instead of her sparkly dress.

The days are slipping by. I keep meaning to post but by the time I get to even thinking about it, I’m too tired. This kid has been keeping me busy!  Lily’s been enjoying summer school, summer camp (an after school program for kids who use communication devices), weekends in the country and outdoor dining. Here are some fun photos from the past few weeks.

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Backstage at Mary Poppins at the Paper Mill Playhouse with the Salerno-Abrahams!  Dream come true for Lily Poppins.

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Boston Corners weekend fun!

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Performing at her school’s moving up ceremony with her classmates and getting her certificate of achievement

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.