It's in the bag

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 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 upgrade the back pack we had been using. But what in the world does a little girl need, every time we leave the house, that requires a duffle bag to contain it all? Who is ready to play the Adelaide Cervantes version of “what’s in her bag?”

Kelly CervantesJanuary 18, 2019Travel, medical equipment Comment

That hospital life

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.

Kelly CervantesJanuary 11, 2019patient advocacy, communication, silver linings Comments

Seizing Life

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.

Kelly CervantesJanuary 4, 2019patient advocacy, medically complex, epilepsy Comments

Wonder Woman

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. She truly is a wonder woman.

Kelly CervantesDecember 21, 2018parenting, special needs siblings, acceptance Comments

Dear Santa,

What in the world 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’ve decided to put together some gift ideas and resources for special needs children.

Kelly CervantesDecember 14, 2018 Comments

How's Adelaide doing?

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?

Kelly CervantesDecember 7, 2018medically complex, communication Comments

'Til the Calm Comes

I’ll never forget sitting on the bed in my Air BnB, hearing the doctor utter the words “infantile spasms” for the first time through the phone. I was in Chicago, 800 miles away from my family in New Jersey, tasked with finding our families new home as we prepped to move halfway across the country for Hamilton. I’ll never forget walking into Adelaide’s hospital room having arrived straight from Newark airport and seeing a shadow of the daughter I had left behind. I’ll never forget the month we spent in the hospital trying to gain control of her chaotic brain waves.

Kelly CervantesNovember 30, 2018epilepsy, infantile spasms, origins, music Comments

No shame in my game, advocacy pt 3

For this post, I am asking everyone to leave their shame at the door. Hang it up on the coat rack, throw it next to the shoes, I don’t care what you do with it but there is no room at the inn for shame today. Are we good? No shame to be found? Great! We’ve made it to my fifth and final pillar of epilepsy advocacy: fundraising.

Kelly CervantesNovember 21, 2018patient advocacy, epilepsy, fundraising, CUREComment

Rapping not required, advocacy pt 2

If there is one thing I want you to take from this post it is this: No one is going to care about raising awareness for epilepsy as much as those that this wretched disease has touched. If we are not out there educating, raising money and awareness no one else will. It is up to the epilepsy community to get out there, to use our voice to make people care.

Kelly CervantesNovember 16, 2018epilepsy, patient advocacy Comments

Inch-stones...