Tag Archives: fundraising

Double Digits

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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

Another year, another trial

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Happy (belated) New Year. 

This kid never ceases to amaze me. She went through so much last year and yet these are the smiles that we get. (See above photo for reference).

Last year she struggled with so many things such as: increased breathing issues, weight and height issues, mobility issues, challenges with her classroom setting and massive dental issues.  The last two problems thankfully were something that were relatively straightforward and remedied. The others, not so much. 

Regardless – when I look back at last year, I see it as a success. We had so many amazing adventures – from going on a Make-a-Wish trip to Hawaii to visiting our family in Florida to buying a weekend home (that has a pool!!!) to having the support that we need to manage our day to day (which is much more than one could imagine) and many other big and small wonderful things in between. 

Another important milestone she hit last year: Lily finally broke the 40 pound mark. She had been stuck at 37 lbs for over 3 years. We still have a ways to go to get her to a better weight, and we may never get there. But I’m learning to make peace with it as best I can. She doesn’t seem to mind. 

This year we have so many things to look forward to and be hopeful about. This kid is loving school, embracing her after-school therapies and is becoming much more vocal. We are seeing a lot of monosyllabic words shouted at the right times, often in cheeky manner. She’s been using her right hand relatively consistently to give a gentle pat or a hug (which is absolutely heart-melting if you happen to be the recipient).

And she’s starting one of three trials that are happening for kiddos with Rett this year. It will mean a lot more hospital visits and tests, but we are hopeful that this medicine provides her with some much needed relief. Even if I see a 5% reduction in her tension, anxiety, breathing issues, I’ll be happy with the outcome. 

And she is going to be 9 in less than a month. How is this possible? I had hoped that by this age, there would be a big breakthrough to ease the god-awful things that Rett Syndrome brings.  But we’ve not had any success. Yet.

I will never give up hope that things can get (even marginally) better for her.  If you were considering a birthday gift, the best present you could give her would be to support RSRT which is working towards helping kiddos with Rett. So if you are so inclined, you can donate here.  It all goes to the same place. Thank you in advance.  Love and peace and giggles.

THE CUTEST!!!!!

Lily’s luau birthday bash

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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

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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

Lily’s turning seven!

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On February 8th, Lily is going to be seven years old.  In honor of her upcoming birthday and my unwavering desire to obliterate Rett Syndrome, I am launching our second annual fundraising campaign. A generous (and anonymous) donor and I have committed to matching up to a total of $1500 raised on 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.  I pray for the day when Rett Syndrome will be just a painful memory.

For those who have already 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 7 year old that I know. And I know that one day in the near future she, and her Rett sisters and brothers, will be cured.  But without funding, it will remain a pipedream.

Until that day happens, I will continue to fundraise and advocate and fight. For her.