What do Hamilton, developmental disabilities and my motto, “taking life one inchstone at a time” all have in common? They were in full effect last Saturday when, after several months, I once again took our kids to the theater to visit Miguel/Daddy at work. I’m slightly ashamed to admit that I’ve written over 30 blogs posts (yes, I counted them) and I have yet to do a deep dive explanation of my own motto. I can tell you are clearly as shocked and appalled by this as I am. So let’s get to it!
Life with a chronic incurable illness is hard AF. Societal standards tell us to downplay our struggles for a variety of reasons, to focus on the good. Somedays that's just not possible. Recently we've found ourselves in a rut with Adelaide's care and honestly, I'm just really tired. When there is no light at the end of the tunnel how do you hunt down hope?
After watching this week’s “Seizing Life” podcast episode on CBD, I felt the need to breakdown my love/hate relationship with this seizure treatment. It’s, um, complicated. I love the attention CBD brings to epilepsy but I hate the misinformation that comes along with it. This post reflects our personal experience and may be a little rougher around the edges than usual. What can I say, I’m nothing if not honest 🤷♀️
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.
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!
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.
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.
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.
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.
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!
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!”
