Mar 1

Mar 1 Mast cell 101

It should come as no shock that Adelaide's body likes to keep us on our toes. Just over a year ago we added a new rare disease to Adelaide's growing list of diagnosis: Mast Cell Activation Syndrome. With Rare Disease Day shining a light on so many conditions yesterday, today seemed like the perfect opportunity to share a little bit about Adelaide's other not so fun disease. Who's ready for mast cell 101?! Don't worry I explain it all in typical Kelly fashion: a little bit of science with a lot bit of sass.

Feb 22

Feb 22 The Adelaide effect

Kelly Cervantes

At the end of the day I’m a woman who is a mom with a child that happens to have special needs. Those descriptors should make us more interesting not make those around us uncomfortable. This week I discuss how as Adelaide gets older, and in turn her disabilities more visible, the way people treat her is changing. How do I recommend you interact with a caregiver and her child with disabilities? Read on to find out!

Feb 15

Feb 15 Chatty Addy

Kelly Cervantes

As Adelaide grows more alert she is starting to communicate with us again. After months of near silence from her, I feel like a new mom getting to know my baby... except she's three and a legit medical mystery. During a recent hair drying sesh she let us know she was still herself by giving us some classic Miss A side eye... she's just much, much, louder.

Feb 8

Feb 8 The epilepsy tightrope

Kelly Cervantes

We are thrilled that Adelaide is thriving off oxygen support but unfortunately, her seizures are getting worse. The epilepsy tightrope act, AKA the seizure control/quality of life balance, continues. This is a common theme in the life of so many with epilepsy. Adelaide's flair for the dramatic (she comes by it naturally), tends to take it to the extremes.

Feb 1

Feb 1 Cautiously pessimistic

Kelly Cervantes

Notice anything different about this photo of Miss A? Anything missing? This week Adelaide showed off and started breathing on her own without additional oxygen support resulting in my own highly unexpected emotional regression. It's been a week folks and I'm holding the polar vortex partially responsible.

Jan 25

Jan 25 Once upon a smile

Kelly Cervantes

This is the last photo I have of Adelaide smiling. It’s from Sept 30th, 2017. Of all the inch-stones she’s lost, I mourn her smile the most. In this week’s post get ready for some the sweetest smiles you have ever seen and giggles that could warm even the coldest heart.

Jan 18

Jan 18 It's in the bag

Kelly Cervantes

Anymore, Adelaide does not leave home for much more than doctors appointments and maybe the occasional lunch date with mom and dad. One of the big reasons is due to the amount of STUFF that has to accompany us. As her condition has worsened the list of supplies and equipment that must always be with her has grown. This past Christmas Miss A received a duffle bag to replace the backpack we had been using. But what in the world does a little girl need that requires a duffle bag to contain it all? Who is ready to play the Adelaide Cervantes version of “what’s in her bag?”. Hint: no fancy eye creams here but I do have some lube if you need it!

Jan 11

Jan 11 That hospital life

Kelly Cervantes

While chilling at the hospital with Adelaide for three days last week, I was struck by how comfortable we have become during these stays. Now, to be clear, being home is always better. Adelaide is more alert at home, I despise our family being separated and there is a special place in hell for hospital showers. But like anything you just get used to it all. Dare I say it, but there are even some aspects that I, <gasp>, enjoy.

Jan 4

Jan 4 Seizing Life

Kelly Cervantes

Happy new year! Much like Adelaide’s birthday, a new year brings a mixed bag of feelings. Sure, I try and remain hopeful that this will be the year of a medical breakthrough for her but also just as prominent is the honest understanding that significant time with a special needs kiddo is going to come with serious challenges, stress and heartbreak. At times like this it is also important to remind myself that I can’t tie my personal feelings of success, productivity or fulfillment to Adelaide’s health. Which means my barometer for success and satisfaction has to come from somewhere else in my life. So, when CURE came to me last fall asking if I would host a podcast they were launching it did not take much consideration before I responded with a resounding, “YES!”

Dec 21

Dec 21 Wonder Woman

Kelly Cervantes

Over the course of this blog I have spent significant time noting how Adelaide is different, commenting on what she is not able to do and the dreams I mourn that I once had for her. I could easily write a post about our last year in review, which would inevitably make me acknowledge all of the skills she’s lost and trials she’s faced. Honestly, that sounds fairly miserable. So, instead, I would like to take a moment to focus on all the amazing things that Adelaide is still able to do. The secret ways she communicates with us and all of the wonderful qualities that make Miss A the strongest person I know because she truly is a Wonder Woman.

Dec 14

Dec 14 Dear Santa,

Kelly Cervantes

What kind of gift do you get a child that is immobile, non-verbal, and lately responds to very little? Adelaide doesn't know its Christmas, of course, so does it really matter? Well, it doesn’t to her but it does to her big brother and he is VERY observant. If he has more gifts than her he will notice and comment and make us feel like horrible parents for not gifting equally. I’m her mother and can barely figure out what to get her, goodness help our family! Realizing that I am likely not the only person in this predicament, I decided to put together some gift ideas and gift resources for special needs children. Yes, this list is a little late (happy belated Channukah!) and no, the reason for the season is not gifts, but they do pose their own obstacles which deserve addressing. Hopefully, this post helps. Happy holidays!

Dec 7

Dec 7 How's Adelaide doing?

Kelly Cervantes

Three words, grammatically so simple, but connotatively so complicated. I mean, its weird, right, if someone doesn’t ask that when they see me? Don’t get me wrong, I am beyond grateful for everyone’s care and concern but the question is daunting. So much goes into calculating the answer: how much does the person really want to know? How well do they know the situation? What was the last update they received? What can I emotionally handle in response? And most importantly, how much time do we have?