Chatty Addy

If January was a suspense thriller then February is shaping up to be a mysterious love story of sorts - but with seizures. Let me explain: Adelaide remains off oxygen (hooray!) and all her blood tests are coming back normal (double hooray!). She continues to be alert with clear moments of wakefulness and sleep and is also becoming much more vocal. A nice reprieve after several months of near silence. Unfortunately, her seizures are getting worse (boooo) and we are continuing to try different med dosages to help her find relief but, hopefully, this time without nearly, accidentally, killing her. All of this is very exciting and also a little shocking as we are now living with an entirely different person than we were two weeks ago. It’s a bizarre twist when you have to re-get to know your three year old daughter.

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The epilepsy tightrope

As I write this post, Adelaide has been off oxygen for over a week. Had you told me at the beginning of January that one month later she would be breathing room air I would NEVER have believed you. Being able to see her adorable face without the nasal cannula, having one less wire running from her body, one less machine to drag around is incredible. However, this seemingly miraculous turn around is anything but, and I need to take a moment to process the reality of what happened so that I can try and enjoy Adelaide’s new found freedom. What better way to process deeply personal emotions than by writing a very public blog post?

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Cautiously pessimistic

In some sick twist of events, on the same day we released the podcast episode about how we keep our relationship strong while being married with a child with epilepsy, I had a meltdown about the parenting responsibilities that comes with caring for a child with epilepsy. I felt like my life was not my own and that I was being held hostage by her care. These feelings were in no way foreign - as I’ve mentioned in the past I seriously struggled with my role as a stay-at-home-mom/nurse/therapist/pharmacist. But it’s been a long time since these feelings reared their ugly heads. Why now?

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Once upon a smile

Recently, I was speaking to a friend we’ve known for several years and he mentioned remembering Adelaide’s smile and it struck me how many people who are in our lives now have never seen her smile or laugh or really make much sound at all. When I look at Adelaide I see her whole person, everything that she has been over the years, every inch-stone achieved even those that were eventually lost. The idea of people new to our lives never knowing what her laugh sounded like breaks my heart but I can remedy that. 

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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?”

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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.

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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.

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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.

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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.

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