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.
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!”
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.
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!
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?
These photos were taken one month apart, before and after Adelaide's infantile spasms diagnosis. 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. Today is the last day of Epilepsy Awareness Month and tomorrow kicks off Infantile Spasms Awareness Week. I don't discuss IS often, as we prefer to focus on epilepsy as a whole, but today I dive deep.
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.
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.
Happy week 2 of epilepsy awareness month! Earlier this week three members of the Cervantes fam traveled West to participate in Epilepsy Awareness Day at Disneyland.After Adelaide’s week in the hospital and increased breathing challenges, putting her on an airplane just didn’t make sense. So, we made the painfully difficult decision to leave Adelaide at home.
Well, folks, its epilepsy awareness month so you know that means: you get to listen to me talk about epilepsy even more than I already do (is that possible?) AND our family is busy AF. In years past we have done a large fundraising campaign called #MyShotAtEpilepsy but I’m gonna be honest, this year we were tired and Adelaide has not been very stable… so we decided to be a part of at least one event a week because THAT would be less exhausting (sarcasm)… I digress.
I never wanted to be a stay-at-home mom. Not as a little girl playing with dolls and certainly not as a 20-something finding my way. Up until Adelaide was diagnosed with epilepsy and Miguel booked Hamilton, I was our family’s primary bread winner and I loved it. In fact, I was out with co-workers, celebrating my last day at one job and about to take a new step in my career, when Miguel called to tell me that he had booked Hamilton and we were moving to Chicago. Exciting? Yes! Moment of panic as I realize my entire life is changing? Hell yes!
It’s been a week, folks. One, crazy, exciting, heart-warming, bittersweet and frustrating week. Sunday, we celebrated Adelaide’s birthday among friends, family and caregivers. Sunday evening we were inspired by artists who happen to have epilepsy at The Kant Institute’s “1:26 Art in Epilepsy” art show where Miguel and I were honored for our work in the epilepsy community. Monday night was CURE’s 20th anniversary benefit and it was a night to remember where over 2.3 million dollars was raised for epilepsy research. Wednesday was Miss A’s actual birthday and by noon we were in the ER after she had four back-to-back seizures that morning.
