Four years in…

Tomorrow is D-day.  The day four years ago when we got Lily’s Rett diagnosis.  I remember it like that recurring bad dream that you just can’t shake.  The worst dream – actually – you could imagine having about your child.  Unfortunately it was our reality.  It is still our reality.

I naively thought/hoped that by now, there’d be a cure.  No one made me that promise, but it was a piece of hope that I held onto as the science – even four years ago – seemed so promising.

Today, four years in, I’m living in that in-between space.  I can’t have too much hope nor can I have too much despair.  Every few weeks I hear positive news about how much closer we are to a cure.  Every few days I hear about another Rett girl dying.  So I try to walk around with blinders – shutting out the hope and the despair, living in the now.  And some days, this trick actually works.

But enough about me.  How is this impacting Lily?  She will be seven years old in a few weeks.  Cognitively she’s all there.  But her body is at war against her.  And this is taking its toll.  I see it in her eyes – she has SO MUCH she wants to tell me.  She has SO MUCH to say.  And she is SO FRUSTRATED.  I’m grateful for the Tobii and her therapists – because of them we have a window into her thoughts.  But this is a very high-level window.  We know how she feels, how she’d like her hair to look, how much she knows about the weather and the date and the time and the book that she’s reading.  We know that she has a very silly sense of humor.  Trying to have an in-depth two-way conversation with her, however, proves to be elusive.  ‘Lily, WHY are you sad?’  ‘Lily, WHAT exactly hurts right now?’ ‘Lily WHY do you keep talking about monsters?’  These are some of the questions that just can’t be answered.  At least not yet.

Lily desperately wants to be a ballerina. But there are some mornings when she can barely keep her feet under her.  She desperately wants to play with other kids.  But only once – yes ONCE – in almost seven years have I seen neurotypical kids look to actively engage with her.  Once.  It was at my aunt’s birthday party last year and these sweet kids (who were complete strangers about Lily’s age) came over and asked to play ‘Rock, Paper, Scissors’ with her.  Even though I had to do hand-over-hand and we lost terribly (I still don’t fully understand those rules), she had the best time ever.  I cried.  They were mostly happy tears.

I tell her every day that she can do whatever she sets her mind to.  I tell her every day that she is the bravest, hardest working, smartest, silliest, prettiest almost 7 year old that I know.  That second sentence is truth.  The first sentence I desperately want to be true.  I am basically willing it into existence.

My ask to you is this: if you were thinking of getting Lily a birthday present, the best present you can give right now would be to make a donation to Lily’s fundraising page for the Rett Syndrome Research Trust.  I don’t care if it’s $5 or $5000.  Help me will her cure into existence.  The science is so promising.  And if I take my blinders off for a moment and try to bask in the hope, I’m pretty sure that by the time she’s 10, there will be a cure.

Crimp2018

Lily told her speech therapist yesterday (using the Tobii) that she wanted crimpy hair today.   She was quite pleased with the result!

 

 

 

 

 

 

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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/