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We are so relieved to be home. And so grateful for the help we’ve gotten to get back here and get settled back in.

Yesterday Lily’s dad met us at the hospital and sherpa-ed us through the snow storm to our apartment.  I do not travel lightly with these hospital visits. Pillows, blankets, blenders, food – you name it, I bring it. We had a lot of luggage.

Once home, John started working on Lily’s hair while I started unpacking/doing laundry. He left shortly thereafter. I put Lily in the bath. Washed her hair three times, scrubbed her down, got her all clean.

Then I jumped on a conference call with other Rett mommas to talk about fundraising strategies.  It was a great way to wile away an hour of combing out Lily’s knots. But alas, her hair defeated me. EEGs and long hair do not go well together. I got through about half of the tangled mess.

At 5:30pm the doorbell rang with hot food from a wonderful Italian restaurant, courtesy of Beverly Salerno.  She just did it. Food just showed up.  Like magic. It was an amazing gift.

Stephen (my wonderful boyfriend of many months) came over a little later with wine and groceries. He set up our dinner while I fed Lily.  Then he watched her so I could finally shower off the hospital germs.  I’m quite the germaphobe for those unaware.

After I put Lily to sleep, we ate. It was delicious. I fell asleep on the sofa afterwards and when I woke an hour later, Stephen had done my dishes and finished the laundry. It was like waking from a dream!!

Today Lily and I are recuperating. Lily continues to have her ups and downs. Sometimes she walks well.  Other times she can barely stand. We have quite the road ahead of us. But soon enough we will be climbing those hills again.

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Playing dress-up yestersay while waiting to get discharged

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Visiting with Urzsula and Shamekia earlier today

 

 

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The strength of motherhood

I hope everyone had a Merry Christmas.

I had a quiet Christmas day while Lily was with her dad.  It’s been a roller coaster of a few weeks – so many highs and way too many lows – so I’ve been looking forward to some much needed down time.

We’ve not yet received Lily’s EEG results but in the meantime, I asked her neurologist to prescribe her some anti-seizure medication while we are awaiting the results.  I couldn’t bear to not try something (and of course I’ve done countless hours of research on the topic so it’s not a knee-jerk reaction).  Lily had become a shell of herself.  And dammit if I’m not going to try every approach I can to help her get back to where she was 3 weeks ago.

Before Lily had her setback, my friend Carlos sent this note my way and it perfectly explains the joy, and pain, of motherhood.  And it’s even more relevant to me now than ever.

The strength of motherhood

Motherhood takes you to heaven and hell every day. It erases your past and amplifies it at the same time. It destroys and rebuilds you, slowly and carefully: replacing the cracked, broken bricks with stronger ones with no anesthesia.

Motherhood kills the old you; it doesn’t care who you think you are, only who you must be in this moment to meet the needs of the ones you invited into this world.

And somehow, by feeding that child, loving that child, wiping that child’s tears from their damp cheeks, pouring water over that child’s head as you sit beside them, uncomfortable and damp next to the bathtub, you become the gentlest of warriors.

Motherhood is a bridge that you walk alone, but as you look to your left and to your right, you see others on their own bridges, navigating the rickety planks of swaying wood. And as you see them struggling just like you are not to fall, it gives you the courage to take one more step.

Motherhood is painfully lonely, but at 3 o’clockin the afternoon whether you’re sitting on the living room floor with a child who doesn’t know your real name or at 3 o’clock in the morning with a child who needs your steady tapping on their pajama-ed back, you’re not alone because all over the world, mothers are doing the same thing. Their minds wander through the garden of their imaginations and memories, dreaming of sleep and rest, but powered by the fiercest of love.

The love that one pours into their child doesn’t come from the heart. Anyone can be in love. Anyone can be infatuated. The type of love one has for their child comes from the center of their bones. It’s the type of love that doesn’t need reciprocation to burn hot. It’s the type of love that never keeps score. It’s the type of love that powers nature in her infinite beauty and ruthlessness.

When a mother says, “I love you,” she doesn’t mean “I love how you make me feel” she means “You are my world, my sun and my moon and not life or death can change that, wherever you are I will find you whether it be across seas or lost within yourself. You are my breath and the light inside my eyes.”

Motherhood, while almost never glamorous, is always beautiful.

Written by:  Bunmi Laditan

Lessons Learned in Life

Motherhood has been the greatest gift I have ever received.  And I’m so grateful for my sweet kid.  She’s going to get through this and come out even stronger.  I just know it.

Wishing you all a peaceful and healthy new year.  See you in 2017!

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Opening Lily’s Christmas presents a few days earlier

My Christmas Wish

It’s a cure for Rett Syndrome. Seriously, it cannot come soon enough.

I went on Facebook earlier and saw that created a slideshow of my recent photos. It made my heart break to see them as it shows just how much my little girl has been struggling these past few weeks – things we all take for granted like breathing, eating, walking. If you’re considering any end of year giving, Lily, her Rett family and I would be eternally grateful if you gave to reverserett.org. We are also accepting prayers and positive vibes.

love,

C & L

PS we are anxiously awaiting eeg results. PPS if you ever find yourself needing to take your kid in for an extended eeg (which is a frequent occurrence for girls with Rett), I highly recommend you try to get it done in-home. PPSS if you ever have a week like Lily and I had, I also recommend that you get as much support as possible. We were lucky to have the fabulous, multi-talented uncle Carlos in town visiting us from Geneva.

Join me on November 2nd in NYC to celebrate our amazing Rett sweeties

image In my spare time (!), I help raise awareness and funds for Rett Syndrome Research Trust (RSRT), an organization that is near and dear to my heart. Prior to last January, I had never heard of the organization, but since then, they’ve become a crucial part of my life, and my hope for my daughter’s future.

As you all know, Lily was diagnosed early last year with Rett Syndrome. It’s not a high-profile diagnosis, but it is a devastating one. Rett impacts 1 in 10,000 girls and women, and most are wheelchair-bound by the age of 2.

Lily is one of the lucky ones. This year alone, she has lost – and then regained – her ability to swallow and use her hands purposefully. She walks (or runs!), has some hand function, and doesn’t need a feeding tube. She’s also making HUGE progress in her communication skills, with the use of specialized eye gaze technology.  I want to thank you for taking part in this journey with me.  Your support through this blog – both near and far, is indescribable.

I also don’t know what I would do without her army of therapists and doctors (at last count there were over 25). They have become like family to me, as have my friends at RSRT.

Sleeping peacefully during an EEG yesterday at the hospital.

Sleeping peacefully during an EEG yesterday at the hospital.

This organization has made remarkable progress in advancing research on Rett Syndrome. A few years ago, approaches attacking Rett at its genetic root were not possible. Today there is scientific evidence that gene therapy could offer an effective way to treat – or even reverse – the disorder. RSRT is spearheading an ambitious gene therapy project to make this possibility a reality.

But we need your help to continue this scientific momentum and to support more research projects. I hope you can join me this year at the RSRT’s 7th annual Reverse Rett fundraiser to celebrate our girls and help work towards making their fugures even brighter.

Please click here for details. I hope to see you there!  If you can’t make it, please consider making a donation – any amount, small or large, helps us get one step closer to a cure.

Thank you.

A week at the hospital

Happy new year. We’ve been busy girls. At the hospital since Monday. Don’t know what day today is. But I think we can leave on Saturday. I really hope so.

We are making the most of it. I keep telling L we are on vacation – at the hospital!

Started the steroids a few says ago (to treat the ESES – a rare form of epilepsy she got diagnosed with the last time we were here). Today was my first time giving her an injection. She didn’t cry. But I sure did. My sweetie.

I’m hanging in there. One of my best friends from grad school was here with us the first two days and then the nanny came for a visit yesterday. John’s been popping in and out.  So I’ve been getting some breaks here and there. Today a friend is coming who I met at the ashram over New Years.

Exhausted. But L is doing great.

Please keep sending positive vibes this way.

C & L

ESES? Huh?

Many of you know that Lily was in the hospital last weekend for a scheduled 48 hour EEG (which turned into a 72 hour EEG).  Her developmental pediatrician and her neurologist (yes, she has both) recommended it to rule out seizures.  This is common practice for children who have a regressive form of autism (i.e., speaking and developing normally, then not – which is Lily).    I thought we were going in to just check a box.  My kid doesn’t have seizures!
Well, she’s not having seizures.  BUT she does have a rare form of epilepsy (1% of the population), in the form of having frequent electrical discharges (as much as 80% in her sleep and also sometimes while awake).  Which in medical terms is phrased ESES – electrical status epilepticus in sleep.  And in non-medical terms is phrased ‘Penelope Syndrome’ for the tale of Penelope, who weaves all day long and then when she falls asleep, it all unravels and she has to start again.
This could help explain why, after over a year of 30+ hours a week of therapy, my baby still isn’t talking.  She’s super smart (and the sweetest and bravest little thing ever) but yet her words come and go.
This also could mean that Lily doesn’t have autism.  But this new diagnosis is also no walk in the park.  The only known treatment for this is medication.  I’m not excited about putting my two year old (almost 3) on meds but I’ve read that this could be life-changing (with a lot of therapy still) for her.  Or not.  But I’m going to stick to the former.
We have numerous appointments over the next few weeks (on top of her scheduled therapies) to find out more.  I was able to find one of the only pediatric ESES specialists and make a relatively quick appointment with him (often-times, it takes about 6 months to get in with specialists.  We only have to wait 2 weeks).  Keep us both in your thoughts and prayers,
Lastly, I’m not a bible-reader but I came across this quote.  For Lily:
 “She is clothed with strength and dignity, and she laughs without fear of the future.”  Proverbs 31:25
Love,
C and L
Thanksgiving Dinner