The latest

The teeth could not be saved. She won’t have two top front teeth. Maybe ever. 

The good news (I’m grasping at straws here) is that she didn’t need a double root canal and the potentiality of the teeth getting infected in the future (which is what happened to me painfully twice) won’t be a cause for concern.  Her recovery will be faster. 

We will find a new normal. We always do. But this time it feels very different for me. Because it was an accident and I was there and if only I were a few feet closer, I could have saved her. I can’t stop her scoliosis from forming, I can’t stop her feet from deforming, I can’t stop her head from not growing. But I could have stopped her from falling. I should have stopped her. 

It’s been a harrowing few weeks, which included an ER visit earlier this week related to the first surgery. Pain management for this kid who has already been through so much has been tricky. Her voice is now hoarse from all the crying. 

Hopefully now, the true healing can begin.

The road to recovery… for us both

Last week, a few days after Lily’s accident, Stephen gently nudged me out of the house to go to a previously scheduled yoga retreat. I was a wreck. I didn’t want to go. But I also didn’t want to subject my already traumatized child to a mother who was in break down mode. 

So I begrudgingly packed my bags and went to Mexico. It was beautiful. It was healing. It was filled with the most magical people and experiences. I was conflicted  the entire trip. But what kept me from ditching my retreat was the logistics of trying to find my way out of the jungle on my own. I could have done it. But it would have been a lot of work. And for what? Getting back one or two days early?

So I stayed. And I laughed. And cried a lot. And did a lot of yoga. And slept. 

Which is a good thing because Lily’s recovery is going to be far from straightforward. 

Lily will be having oral surgery on Monday (yes this coming Monday) to have her teeth repositioned.

Then two weeks later she will need root canals in both teeth as the nerves will be damaged when they move the teeth.  And after the root canal, the tooth that was chipped will be reconstructed. 

She’ll go under anesthesia for both procedures. 

The logistics of making this all happen and in such a quick turnaround has my head buzzing. Her dentist helped tremendously by making the dental appointments, including procuring an anesthesiologist for both procedures. But the pre-op appointments, the multiple calls with all the doctors, and the paperwork… oh the paperwork. Well, that’s mostly been on me.  And today Stephen is taking over as I’m heading to another previously scheduled day-retreat. 

Things are moving in the right direction. And for that I am grateful. I’m also grateful that I’ve got the most resilient kid in the world as well as the most encouraging and loving partner. 

But I can’t downplay how draining these next few weeks will be. So if you get a chance, send some positive thoughts our way. This kid, and her momma, could sure use them.

2.22.22

On the socials, everyone was posting that it was going to be a magical day. 

I had high hopes for it as well. Not because of some particular date.  But because I was finally going to spend one full day with Lily – no caregiver, no Stephen – just us two girls, like how it used to be years ago. We were planning to buy her a new spring jacket and then head over to the history museum.  A girls day. Get dressed up. Put on some makeup. Have some fun!

I was extra excited because it was the first time in a long time that I was feeling confident about going out with her alone. No stroller (that she doesn’t fit into anymore anyway). Just reliance on our legs and public transportation (and maybe a taxi if we were in a pickle). 

The morning started off easily enough. Stephen got her ready for the day while I ran down and trained at our gym with a guy whose teaching me the Turkish getup (look it up – it’s legit). Once upstairs, Stephen headed off to work. I pulled up all the trip hazards (rugs) in our bedroom and Lily chilled in there listening to music while I took a quick shower.  Once I got out, I started talking to her about our adventures for the day. She was very excited. And was following me around. I started to put some makeup on in front of the hallway mirror and she ventured off into the bathroom to look in the mirror there. Then I heard a thud. 

And that’s when the day fell apart. Lily somehow tripped and fell into the tub. She semi-caught herself with her hands. But she still managed to bang her mouth. 

The screaming was delayed. And that’s when I knew it was really really bad. 

There was lots of blood coming out of her mouth and her two front teeth were nowhere to be found. 

Thankfully there were no broken bones. I called Stephen to come home. I called the dentist to tell her we are on our way.  None of this I remember very well. 

The rest of the day was a blur of blood and screaming and crying (including mine) and holding her so tightly and Stephen taking care of us both, keeping level-headed and calm as I was feeling anything but. 

I guess the magic of yesterday for us was that she didn’t lose her teeth. They got pushed back into her gums. Hopefully they will come down naturally. But if they don’t, she’ll need surgery. We go back to the dentist in 2 weeks to check in. And then another 2 weeks to decide about surgery. 

For the most part, Lily is well; she’s got a fat lip and a huge gap in her mouth. But last night and this morning, she was smiling and giggling. 

It’s going to take a while for me to find a place of peace. My confidence as a mother and a caregiver is shot. My heartbreak and grief over what happened to her on my watch feels insurmountable. 

But I will push forward. For her. For me. For Stephen. For us. 

This is my grief. Not hers.

Rett Syndrome and a pandemic don’t mix together well

I know that everyone can say that the last 12+ months have been a roller coaster. For us parents of kids with complex medical conditions, we were already on a roller coaster so life just got crazier and more intense.

That’s why you’ve not heard from me in a while.

Yesterday is a good example of the roller coaster of our lives. It started out with a semi-urgent scheduled appointment with Lily’s Rett specialist. And ended with a jam session (courtesy of Stephen) dance party/giggle fest. In between, we went to the botanical gardens to decompress from the hospital visit which has become somewhat of a family tradition.

So let me backtrack. There’s a lot that’s been going on with Lily. Some of it good. Some of it not so good.

The good: she’s gained 10 pounds, grew a few inches and is progressing well at school (even in a fully virtual environment).

The not so good: during her growth spurt, her feet didn’t grow right which has been impacting her ability to walk, she’s having zone-outs that are looking more and more like seizures and she’s become very temperamental.

Hence the appointment with the Rett specialist.

A lot came out of that appointment that I’m still trying to wrap my head around. Lots of recommendations were made. And with the help of Stephen and the doctor, we’ve prioritized the to-do list. Here are the headlines:

1. We will need to admit Lily for a 3-5+ day EEG to see if she’s having seizures.

2. Lily will be getting Botox treatments for her feet. The AFO’s (i.e., leg braces) which we got about a month ago to help with her gait and foot deformities aren’t doing enough. Adding Botox will hopefully assist in the mending process.

I’m overwhelmed. I’m heartbroken. But at the same time, I couldn’t be prouder of this person who is turning into a beautiful young lady, inside and out.

Advocate like a mother

When so many things are going wrong for my kid, it’s not easy staying positive. Every institution that has been (supposedly) set up to help my kid is failing miserably.  Everything is a battle. Every day there is someone to call or email or visit. Some days I write dozens of emails and scan just as many documents to move things forward for Lily.  Inching forward is more like it.

Thankfully I am not alone. I have an army of people helping me along this battle – from Stephen to Lily’s therapists and doctors, and the other special needs moms – who are in the trenches with me, fighting similar battles, sharing their knowledge, their love and support. But we are outnumbered.

Yet we move forward. With determination and hope. Because we are fighting the good fight, trying to get the most basic of needs for our children met.

The absurdity of the situation (like so many other things going on in this world) baffles me. Here is one such example: We recently saw Lily’s neurologist as she is starting to have episodes that look like seizures. The doctor prescribed a 48-72 hour EEG. While trying to schedule it, I learn that my insurance company will not pay for a prolonged EEG without putting her first through an in-office 30 minute EEG. It is a foregone conclusion that we will not get any answers from this short study; Lily has these episodes maybe once a day. What I do know is that this 30 minute EEG will cause a significant amount of stress for my kid and we’ll have to do it all again a few days later.

For those of you who are unfamiliar with what an EEG entails, here is a quick overview:

  1. Walk into a small, claustrophobic room filled with medical machines and a hospital bed.
  2. Get the kid to lay still while the technician glues 20+ leads on her scalp and then wraps head, which takes about an hour. (Many of you know Lily so you could imagine the herculean effort it takes to keep her still.)
  3. Sit there for 30 minutes to 3 days hooked up to a machine.
  4. The technician (who is often slurping on a smoothie or munching on chips throughout the process and sometimes smells bad) removes the 20+ leads and we go home.
  5. The parent then spends 2-5 hours getting the glue out of the kids scalp.

Could you imagine putting your kid (and yourself) through this twice? The first time for no reason other than to tick a box for the insurance company.  So I’m fighting back, knowing it is unlikely that I will win this battle.

So, I am angry.  And scared.  Because Lily may now be having seizures which is why we are doing an EEG in the first place.

But I am also hopeful.  And proud.  Because through it all, my child shines.  She is not easily deterred. And neither am I.  And I know that – given all these crappy circumstances – we have a lot of great in our life.   And some days, I’m actually able to focus on this and suspend my worries about her future.

One of those days to be grateful for… picking flowers, veggies and picnicking with friends at our country house.

 

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.

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

 

 

 

 

 

 

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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Searching for answers

It started with her having 2 bad Rett episodes (shaking and freezing and groaning) back to back and then getting strep in late November. It was while we were in Florida for thanksgiving that I started to notice her left arm freezing. And then a few days later her left shoulder looking like it was getting pulled back and then a few days after that watching her entire body writhing (not convulsing) and knocking her to the ground.

So we did the home EEG. During a 24 hour period we saw two dozen of these writhing events. It turns out they weren’t seizures. However, she did have one seizure in her sleep the night of the home EEG that I didn’t even notice (she slept with me that night).

Before we got the results back from that EEG, I made the decision to put her on anti-seizure medicine. The meds initially worked. And then they stopped. And then she got even worse. Lips turning blue, breathing labored, mobility worsening. Zero energy. Little appetite.

So we went to the hospital. We were admitted yesterday and will be leaving tomorrow.

What did we learn at the hospital? Well these episodes we are seeing are definitely not seizures. This is a good thing. However what is going on isn’t entirely clear. The doctor says Lily had a growth spurt and it’s been exacerbating her apraxia. Basically what it means is that she’s having dizzy spells and her body has changed so much so quickly that she needs to relearn how to do all the things she was, up until recently, able to do. I know my kid well and I haven’t noticed any major growth spurt. But this is all we’ve got.

The Rett specialist says that this is just a bump in the road. It’s going to take months, and lots of physical therapy, to get her back to where she was 4 short weeks ago.

Right now Lily can’t walk without assistance and when she does walk, she now walks backwards mostly. She’s lost almost 2 pounds.

She has managed a few times in the past few days to emerge from the fog and be her silly Lily self. These moments don’t last nearly long enough. But when they do, my heart soars.

I’m trying to wrap my head around this new TEMPORARY chapter. Lily cannot be left alone for a moment. How do you cook? How do you get ready for work in the morning? I don’t know the answer right now but I’m going to have to figure it out fast. And I will. And this kid is going to get better.

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