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.

 

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.

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.

D-Day

Tomorrow it will be three years since we got the Rett Syndrome diagnosis.  Sometimes it feels like time has stood still since that moment.  Sometimes it feels like time is racing by.  Sometimes I feel like I’m on top of it.  Sometimes I feel completely defeated.

These past two months have really put us to the test.  And I’ve been more afraid now than I was when I first heard the words ‘your daughter has Rett syndrome.’  I don’t think it’s because I was naive to what the future could hold. I’ve been cautiously optimistic that my kid would beat the odds and be healthy.  And we’ve taken every measure to try and make this a reality.

However, her health has taken a nose-dive as of late, as many of you know.  And I’m still looking for answers to what’s been going on.  But have come up with nothing new.

Physically I’ve noticed that she has been getting stronger.  Afternoons and evenings are better for her.  She can walk around most evenings completely independently and somewhat safely.  But mornings… they take my breath away.  And not in a good way.  Most mornings she is struggling to stand.  Some mornings, she can’t even get herself up to sit.  But when she is struggling, she has a smile, and a determined look on her face.  It’s almost like she’s saying ‘I’m going to have fun while fighting this.’  I try to take her lead on these things.  I really do.  But it’s fucking heartbreaking.

Just as she’s been seemingly getting physically stronger, a new symptom has reared its ugly head out which is putting a wrench on her recovery.  Breathing.  Or lack thereof.  The past two nights in a row, it’s taken her 5 hours to fall asleep.  Breath holding and hyperventilating for hours at a time.  She’ll fall asleep, but forget to breathe while doing so.  Which means that a few moments later she wakes up gasping for air.  It’s been this terrifying cycle to watch.  And there is nothing I can do but hold her hand and tell her I love her and that I’m proud of her and that we will figure this out.

In a few weeks she is going to have a birthday.  Six years old.  In many ways she is a typical 6 year old – she loves to play dress up and read stories and giggle.  But in so many ways she is not.  There are way too many hospital visits.  Way too many health issues.

The scientific community is inching closer and closer to a cure.  Some say it is a matter of 3-5 years.  This is not soon enough.  But one day, Lily will be rid of this Rett monster.  This is a fact.

For those who were considering sending her a birthday gift, the greatest gift you could give would be making a donation to the Rett Syndrome Research Trust.  In honor of Lily’s birthday and diagnosis day, I’ve created a fundraising page specifically for her.  I have an audacious goal of raising $100,000 by year end.  Help me get there.  Help me spread the word.

A cure is in sight.  And it can’t come soon enough.

Here is the direct link: https://rettgive.org/projects/a-cure-for-lily/

 

 

Struggling

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.

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