Tag Archives: motherhood

Rett Syndrome and a pandemic don’t mix together well

Posted on by

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.

Advertisement

Double Digits

Posted on by

This kid is going to be 10 in a few days.


In these 10 years, she’s beaten so many odds. She’s doing well. But there are still so many things that she can’t do.


I often think about the conversations we would be having if she could talk. I have them with her regardless, searching her face for answers. But what about the conversations she wants to have? The Tobii is great but it is so very limiting. This child has complex thoughts and feelings. I can see it in her eyes. And those thoughts mostly stay trapped in that amazing brain of hers.


And when I say that Lily is doing well, it’s not like when typical kids are doing well. Doing well for her means that she’s not having significant breathing problems, she’s sleeping (albeit with medication), that she’s still able to walk independently, hasn’t been to the ER in a while and is capable of swallowing food. She still needs 24/7 support as she’s unsteady on her feet, her hands don’t function and she’s nonverbal.


And nothing is linear. Not her growth chart. Not her capabilities. Some days her ability to swallow food gets so compromised that we have to purée her meals.


But there’s good news too. She’s getting taller, she’s gained some weight (over 5 pounds this year alone) and she’s progressing academically (even in a fully remote environment). She also continues to be super cool, super funny and silly and super optimistic.


I say to her every day ‘how did I get so lucky to be your mom? To have such a sweet, smart, tenacious kid!’ I am so proud to call her my daughter. Everyone who knows her will tell you that she exudes love and sunshine and acceptance.
And she’s busting to see all of you in person — to give giggly hugs and have dance parties and make you read her books.


Hopefully we will get the opportunity to see you at some point this year. I’ll try to send more updates through www.blueberriesandgiggles.com as I’ve been off social media for a few months.


But for now, we celebrate a decade of Lily. Ten years have flown by and I want to make damn sure that the next ten are superior to the last.
I wish I could give you a list of things Lily would like for her birthday, but she’s gotten most of the tangible things for Christmas (which was less than two months ago). If you feel compelled to give something, please donate to Rett Syndrome Research Trust as the best gift this kid could get would be a cure. The second best would be something palliative to mitigate her symptoms. Both are being researched right now.


Sending love and health (both physical and mental) to you all.


C

Winter wonderland

Advocate like a mother

Posted on by

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.

 

Better and different

Posted on by

Last Friday was a pretty big day for us girls. You already caught a glimpse of Wonder Woman and heard that she was having a tough morning. But so many other things happened on Friday.  Even though this kid was feeling like crap in the a.m., she still made it to a dentist appointment.  She was brave, but man she hates going to the dentist.  Who doesn’t?

Then it was to school for super hero day, then PT and afterwards, I took her for a haircut.

She’s been wanting, and needing one for some time. And a few weeks back we had an appointment, but that was the day Lily fell at school and had to get 4 staples to hold her scalp together. Oh, that was a fun day indeed. However, I digress…

As many of you may know her hair is quite a topic of interest. We have had many conversations and even more debates about what she wants to do with it. For a while we were creating a weekly hair menu where she would plot out every hairstyle for each day of the week (see below).

But the debates about her haircut were always the most interesting. She would tell me, incessantly, that she wants bangs and short hair. To which I would reply, ‘short hair in the summer isn’t a great idea’ and wax on as to why. Her response was always quite diplomatic, ‘I can see your point’ she would navigate to on her Tobii (completely independently I must add); not that she agreed with me, but that she understood my reasons why.

In the end, she won. Mainly because the person cutting her hair cut it much shorter than was discussed. But Lily has been so pleased with the result.  She told her teacher yesterday that her hair is ‘better and different’. Why yes it is, smart, sweet, stylish child of mine.

Lily’s luau birthday bash

Posted on by

This kid turned 8 today. Can’t begin to explain how proud I am to be her mom. In anticipation of her upcoming Make-A-Wish trip to Hawaii, we celebrated with a luau!

The party was a success. It started with a ballet class taught by New York City Ballet (check out Lily independently getting her feet into 5th position in the second set of photos) and then the luau at school with pizza, cupcakes, giggles and dancing. Lots of dancing!!! After school we had a play date with her friend Xan, followed by dinner at her favorite restaurant. And then we went home, exhausted, full and happy.

Today

Posted on by

It’s 5:30pm on the 24th of January. And it just hit me. Today marks 5 years since d-day–Lily’s Rett diagnosis day.

What a 5 years it’s been. What a roller-coaster. But I wouldn’t give it up for anything. I’ve got the sweetest, coolest almost 8 year old I know. She is my joy, my inspiration.

Don’t get me wrong, it’s not easy. Every day I say to her when she’s having a tough moment–like trying to walk in the morning or crying uncontrollably in the middle of the night–that I can’t fix things. But that I can make them better. With love and comfort and compassion. But I can’t fix it. I can’t fix it.

That sucks. No one should ever have to see their child suffer so much. Every day. Every day. I’ll say it again: every day.

And we are so fortunate right now as Lily is going through a relatively stable period. And the ‘relatively’ is truly that. I am not trying to sugarcoat any of it: our ‘normal’ is anything but that.

So it’s been 5 years. And we’re getting closer to the ‘cure’ but it’s still not here. And every day as Lily grows and Rett continues to ravage her body, that ‘cure’ looks less and less like a cure for her. At this point I’ll take whatever it is we can get. Just to let her have the ability to breathe with ease, to wake up and not be in pain… I’ll take it.

I can’t believe she’s going to be 8 in a few weeks. I can’t believe how much she’s grown and changed. I can’t believe how much I’ve transformed because of her. And for that, I am grateful.

In so many ways, she’s such a ‘normal’ kid. She’s been putting together weekly hair menus letting me know how she wants her hair done every day. How freaking cute is that? Currently she’s all about pigtails. As you can see from the menu and hairstyle:

Her birthday is on the 8th of February. And I wish I could give you a list of things she wants as presents. But I don’t have one because she cannot tell me outright. So if you want to do something for her, consider making a donation to Rett Syndrome research. Not only will it go to her future, but the future of all her other Rett sisters and brothers.

With love,

C & L

Stronger

Posted on by

The past few months have been extremely stressful so writing posts has not been a top priority.  However, I didn’t want to leave you hanging for too long.  I’m proud to say that Lily has been showing improvement in many areas.  Her appetite has come back (for the most part), her peeing has normalized (for the most part) and her gross motor function/walking has also returned (for the most part).  Her breathing is still an issue though that too seems to have gotten better.

I have been obsessed – OBSESSED – with her caloric intake.  And I’m pleased to say that a steady diet of pizza, cheeseburgers, hot dogs, rice pudding and vanilla yogurt coupled with her morning smoothies (which has a pediasure base and some raw veggies that I slip in) has helped her fill out and get stronger.  She still has more weight to gain but many days I’m finding myself not completely stressed and uptight about her eating.  It’s helped that most days she’s opening her mouth for food and is genuinely interested in eating again, though her former diet of uber-healthy food has screeched to a halt.  Whatever.  The kid is eating.

But I can’t completely relax.  We still have days that are difficult for her.  Really difficult.  Heart-breakingly difficult.  And I’m trying to shake the hangover of what she went through these past few months but I can’t completely.  Rett Sydrome is always lurking around and we just never know when it will pounce.  I can’t make this the focus of my attention as it will destroy me.

So I remain in hope.  And there’s good reason.  Last month two significant announcements were made about Rett research.  One was regarding a research trial on a drug that ameliorates a handful of painful symptoms in our girls.  And the other was regarding the path toward a cure using gene therapy.  Awareness-raising and fundraising are now more important than ever.

Until the cure comes, us warriors will continue to battle against the day to day struggles of Rett Syndrome, and we’re going to do our best to have as much fun along the way.

Love,

C and L

 

Spring Break 2017

Spring Break 2017 in South Florida with Grandma and her cousins!

Celebrating Lily’s birthday

Posted on by

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

Image | Posted on by

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/

 

 

The strength of motherhood

Posted on by

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!

img_5065

Opening Lily’s Christmas presents a few days earlier