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.

This is NYC!!! There are people who smell like urine in the subways, people begging for money, ice cream trucks playing that horrific song (over and over and over 😉 lol), there are sirens and traffic and long lines, a million annoying things that are intruding on the peace and quiet of others … a kid having a moment while leaving Dunkin Donuts should be the least of their concerns! 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.

 

Anxiety

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Adventures with mommy! Pete the cat book launch followed by lunch at 5 Napkins and a stroll in the park (mom had to do minimal carrying of child)

I know these photos don’t depict a child struggling with severe anxiety but she is.

Screaming and crying for hours at night, unable to be consoled in any way, it’s been heartbreaking. And exhausting.

I’ve been in touch with her specialist. We are considering changing her sleep medication. She’s only on one medication for sleep. Clonidine. And am so grateful that we’ve been able to keep the drugs to a minimum so far. Most girls with Rett syndrome are on upwards of half a dozen medications.

Clonidine obviously hasn’t been working so great lately. But I may have found something that has – continuos release melatonin. It never worked for her in the past, but the past two nights she’s been sleeping. Is it luck? Is it melatonin? I don’t know. But I hope we continue with this streak.

My superhero

Even though last night was a tough one (she may have had a seizure and it made her very upset), today Lily was excited about going to school as it’s ‘superhero’ day.

This kid is MY superhero.  Every day.  She smiles in the face of adversity.  She has fierce determination.  She is silly.  She is smart.  She never gives up.  And she rocks a jumpsuit.

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Superheroes live in the hearts of little kids fighting big battles.  #reverserett

Tellin’ time

orange watchA few weeks ago, Lily lost a tooth and got $5 from the tooth fairy.  She told me and Elaine (her speech therapist) exactly what she wanted to do with this money: buy an orange watch!  You see, she’s learning to tell time, something that she told us that she wanted to do, of her own volition.  A watch is the perfect accompaniment to this activity, no?  She’s so proud of this orange watch.

Earlier today, I got this text from Elaine and it made my heart burst with pride:

It was the most amazing thing watching [Lily] yesterday try and figure out on her own what the clock said… she kept looking at the analogue clock I brought, checking a cheat sheet I made for her and then making selections on the Tobii…  it was so exciting to see!

We are so lucky to have not only the Tobii, but also Elaine – the SLP/AT extraordinaire – to help us communicate with, and challenge this kiddo!

 

Stronger

The past few months have been extremely stressful so writing posts has not been a top priority.  However, I didn’t want to leave you hanging for too long.  I’m proud to say that Lily has been showing improvement in many areas.  Her appetite has come back (for the most part), her peeing has normalized (for the most part) and her gross motor function/walking has also returned (for the most part).  Her breathing is still an issue though that too seems to have gotten better.

I have been obsessed – OBSESSED – with her caloric intake.  And I’m pleased to say that a steady diet of pizza, cheeseburgers, hot dogs, rice pudding and vanilla yogurt coupled with her morning smoothies (which has a pediasure base and some raw veggies that I slip in) has helped her fill out and get stronger.  She still has more weight to gain but many days I’m finding myself not completely stressed and uptight about her eating.  It’s helped that most days she’s opening her mouth for food and is genuinely interested in eating again, though her former diet of uber-healthy food has screeched to a halt.  Whatever.  The kid is eating.

But I can’t completely relax.  We still have days that are difficult for her.  Really difficult.  Heart-breakingly difficult.  And I’m trying to shake the hangover of what she went through these past few months but I can’t completely.  Rett Sydrome is always lurking around and we just never know when it will pounce.  I can’t make this the focus of my attention as it will destroy me.

So I remain in hope.  And there’s good reason.  Last month two significant announcements were made about Rett research.  One was regarding a research trial on a drug that ameliorates a handful of painful symptoms in our girls.  And the other was regarding the path toward a cure using gene therapy.  Awareness-raising and fundraising are now more important than ever.

Until the cure comes, us warriors will continue to battle against the day to day struggles of Rett Syndrome, and we’re going to do our best to have as much fun along the way.

Love,

C and L

 

Spring Break 2017

Spring Break 2017 in South Florida with Grandma and her cousins!

A visit to the ER

Rett Syndrome has robbed so much from my child already – her voice, her ability to use her hands purposefully, her ability to breathe normally, her independence. The latest: it’s been robbing her of her ability to pee.

With Rett Syndrome – everything, and I mean every function that the human body needs to thrive – has the capacity to fail.

Lily was feeling absolutely miserable last Sunday. She hadn’t peed in over 24 hours though her liquid intake was normal over this time period.  And I was hopeful that she had a UTI, as this could explain the urine retention, but alas the results came back negative.  So I guess we got one answer – it wasn’t a UTI.

So I turned to the Rett Syndrome family support group to see if they had any suggestions and one mom sent me to this article.  I remember hearing that some girls with Rett have trouble peeing from time to time, but I never knew the extent of how dangerous it could be.

Next step? Adding another specialist to the list – a pediatric urologist. And likely I will need to learn how to catheterize my sweetie. We can’t go to the ER every time she needs to pee.

Celebrating Lily’s birthday

On February 8th, Lily is going to be six years old.  In honor of her upcoming birthday and my unwavering desire to obliterate Rett Syndrome, I will match up to a total of $1500 donated to her RettGive.org page between today and the 8th.

I’m so proud of this kid – she literally smiles in the face of adversity. I see it every day when she’s struggling to stand, walk or breathe.  I see how hard she works to do – well – almost anything right now.  I pray for the day when Rett Syndrome will be just a painful memory.

For those who have already generously donated… from the bottom of my heart, thank you! Your support and love is palpable.  For those who’ve not gotten around to it yet, or don’t feel that giving $10 or $20 will make a difference, believe me when I say that every dollar counts.

Lily is the bravest, sweetest, smartest, hardest working almost 6 year old that I know. And I know that one day in the near future she, and her Rett sisters, will be cured.  But without funding, it will remain a pipedream.