Category Archives: Anger/Rabbia

The to-do lists are endless

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My soul is hurting this week. 

I’m still fighting for basic Medicaid services (like diapers, overnight respite, daytime respite) while trying to prepare (and not completely flip out) for Lily starting kindergarten next month. 

I’ve had to postpone our move to the Upper West Side which means she will be in for quite a bus ride to and from school. So I need to make sure it’s as comfortable, and as safe, as possible. I’ve already gotten a doctors note requesting what must happen but trying to find the right person within the DOE to make this a reality is proving impossible.

Good news is that I’ve averted the ‘adaptive stroller’ issue for the bus but that was a research project and fight in its own right. And the fight is only half over. 

There’s always so much to do. The lists I have written down, and in my head, are endless.  So the idea of moving while all this is going on (and I’m not even adding the to-do’s from my job) makes my head reel. 

At the top of these lists (other than bussing and Medicaid) is to get her new school up to speed with her abilities, and needs (they’ve never had a Rett sweetie nor do they have experience with the Tobii), get Lily acclimated to a new school with new kids and new teachers, find a few new home-based therapists to replace those that fall off after pre-k (hint: this is not easy), and remind myself that it is all going to work out. Deep breaths. 

I wish I could say that Lily’s sleep has stabilized but that would be a lie. And the panic attacks, though less frequent for now, are still happening. 

The upside? Lily is keeping me laughing with her silly antics. Yesterday she kept pulling down her Peppa Pig artwork from the wall. Shamekia the nanny initially thought it was an accident so kept pinning it back up. But after the third time she found it on the floor, she asked Lily ‘you don’t like Peppa Pig today?’ And Lily scrunched up her face in a recognizable look of disgust, which means ‘no.’  And then she giggled about it.

Why my child doesn’t like Peppa Pig all of a sudden is still unknown to us. But I love that she is always finding new ways to let us know what she likes, and doesn’t like. 

If we (meaning me, Shamekia and/or her therapists) figure out why Peppa has turned into persona non grata, I will let you know. But for now, I will leave you with a visual of my kid admiring her art wall sans Peppa from earlier today. 

Peppa pig in the doghouse.jpg

The Beauty of Technology

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A friend posted the below link on his Facebook page yesterday.  I began to open the link knowing that I was opening myself up to an avalanche of self-pity and ‘what-if’s’. So I closed it down.  But the title of the article, well, it stayed with me.  I woke up this morning and had to add my take to his somewhat smug post (which, by the way, I totally get and likely would have posted similarly had I not found myself in my unique parenting situation).

Here is the link: ‘Stunning photo series shows what it’s like to grow up without technology’.  

Here’s my comment:

Just reading the title of this article fills me with a level of jealousy I never knew existed. I have two iPhones, two IPads, a tablet and a $20,000 eye gaze device that I rely on to not only speak to, but also educate and comfort my child with Rett Syndrome. And because of this technology, my 5 year old nonverbal child told me (through technology) last night that she wanted a jacket because she was cold. I don’t think anyone could truly understand how amazing that moment was – to hear her express her basic needs – unless they have to live through it. Not all technology is bad and not everyone can follow the ‘ideal life’.

I dream of the day when Rett Syndrome will no longer be our reality.

 

Waves

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The enormity of this diagnosis hits me in waves.  I can go weeks, months even, not worrying too too much about the future.  But then BAM – a test result comes back, a new behavior emerges – and I’m thrown into a tailspin.

This latest wave has hit me like a tsunami.  And it’s washed me up on a desert island where I feel completely isolated and alone.

And yet I can’t give up hope.  I won’t give up hope.

My kid needs me, and not just in the typical way a child needs a parent.  I am her voice, her hands, her advocate, her life support.

She and I have many adventures ahead of us so I’m working my way off this desert island.  What’s helping me right now is plotting out our next adventure – which will take place on a tropical sun-drenched island in February.  More soon on this.

Sleep no more

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As many of you know, this is the title of a popular, yet confusing and somewhat annoying show here in New York City.  It’s also the title for my life right now, which is somewhat confusing and annoying.

I know this sleeplessness is just a phase.  But it’s going on way too long.  And it’s different from her previous episodes.  Lily’s inability to fall asleep lately is tinged heavily with bouts of hysterical laughter.  Yes, it’s cute.  And a lot of the time I do laugh alongside her because her giggles are infectious.  For those of you who are fortunate enough to have heard her belly laugh, you know what I’m taking about.  But at midnight?  When it’s been going on (and off) for a few hours?  It’s not so funny.  It’s downright alarming.  And annoying.  There, I said it.

So I’ve been researching the laughter.  And it turns out, it’s one of the many facets of Rett syndrome.  Something neurological is going on in this kid’s mind.  And it is likely linked to the increased ‘Rett episodes’ she’s been having.  Yup.  In August, and into September there have been more than a few times that she’s woken up, shortly after falling asleep, with scary shaking and convulsing spells: she’s fully aware of what’s going on and is looking at me with terror in her eyes begging me to make it stop.  That, my friends, is Lily’s version of a Rett episode.  It’s not a full on seizure as she’s present during the convulsing. But something terrifying is going on in her brain.  And it’s terrifying the both of us.

These episodes have also impacted her physical function.  She’s become much more clumsy these past few weeks.

We are going back to the hospital in early October to see the Rett specialist. Likely the doctor’s recommendation will be to give Lily the trazadone she prescribed last year when her last awful sleepless period happened.

For now, I’m keeping an epileptic activity journal, noting all the times Lily has these ‘Rett episodes’.  And, in the meantime, I will do my best to keep laughing alongside my sweetie.

Lily's favorite sleeping position, 'the starfish'

Lily’s favorite sleeping position, ‘the starfish’.

Impatient

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It’s not coming soon enough. The cure. It has to happen. Soon.

Lily’s hand function is worsening. And believe me when I say it’s not from lack of effort (from her part, or mine).

Another blow: I was called in to a special meeting at school last week from Lily’s physical therapist to learn that Lily needs an ‘adaptive stroller’ for when she transitions into grade school. It’s for safety reasons – the bus starting in K doesn’t have the 5 point seatbelt which she will need (confirmed by the Rett specialist when we were in the hospital on Friday).

Imagine this: a small therapy room at Lily’s preschool where her two PT’s, her two OT’s, her social worker, and I (huddled around a kid sized table in tiny preschool chairs) are going through a catalogue of wheelchairs. Fucking heartbreaking.

So you see, a cure needs to happen. And soon. I don’t know if I can handle watching my child get lifted into a school bus next year.