The Cervantes family has had quite a week with something for everyone to celebrate - and we absolutely have. But lurking in the shadows of every celebration is chronic illness just waiting to take back the spotlight - and it has. I don’t use the word “hate” lightly. In fact, there is only one thing Jackson is allowed to say that he hates: epilepsy. But for some reason, using this word has been considered taboo in the community for years. So, I tried to figure out why.
I call this selfie, “Hiding from life”. I don’t know about all of you, but this Fall is doing a number on my sanity. Pretty sure I blinked and we were already halfway through September. Typically, I thrive on being busy but this season just has me wanting to crawl back under the covers, and with so much uncertainty in our life it’s not hard to see why. I took this week to check back in with me and remind myself that sometimes the best answers to the big questions are little. In typical Adelaide fashion she helped me along with some special moments of her own.
As parents we learn to live with very little privacy. I mean seriously, when was the last time you used the bathroom in peace? But what about when you have physical therapy, palliative care, an oxygen tank delivery, and your daughter’s usual home nursing care all in your home before noon. We are incredibly grateful that Adelaide is able to receive as many services in our home as she is but I can’t help but feel sometimes that we live in a much smaller, but still very public, Grand Central station.
Just call her Dr. Bug. Thanks to her mast cells rejecting her IVIG infusions Miss A will now be sporting this adorable medical accessory whenever she leaves the safety of our home. Adelaide’s health has been declining in the last month and we are fumbling along as we figure out her new limits. Years ago, life gave me a crash course on living within my financial means, but now I’m learning how to live within our wellness means. Dr. Bug is an excellent teacher, though I must say, not very patient…
For this month’s guest blog post I was compelled to ask my brother-in-law, Marcos, after he and his family spent a week with us on vacation in Michigan. As Miguel’s big brother and a father himself, what was his experience with our family that week? Please enjoy Marcos’ vulnerable and loving ode to Adelaide.
Happy birthday to “Inchstones”! One year into this blog and I have no intention of slowing down. Also, I have a big announcement in this week’s post and I need all of you to hold me accountable! The feedback and encouragement I have received from everyone who has followed along has meant so much to me and I’m ready to take it all a step further. Perhaps this is all rather presumptuous of me but I figure it is a lot harder to accomplish goals being modest and soft spoken. Let’s go!
Miguel and I do not live near our immediate families which has made this trip to Michigan that much more special. The first week Miguel’s family traveled to join us and the second week mine did. They are deeply engaged in our lives but unless you spend regular time with Adelaide I just don’t think her reality hits home. So it did not come as a shock when a few tears were shed when getting everyone up to speed. I used to feel guilty, or at the very least uncomfortable, when I would share news about Adelaide and the other person would begin to well up. It was not my intent to make them sad, this is just our reality. Was I cold hearted because I wasn’t crying too? Or maybe I’m just overexposed…
For this first time since, well, probably Adelaide was born, I am giving myself permission to stall out and just live in the moment on this vacation. Like a shark I’ve needed to keep moving to survive our new normal, even if it was just an inchstone at a time, I was always moving forward. But now for the sake of my sanity, it is time to try a new tactic.
These last couple weeks have been emotionally challenging and not for any one specific reason that I can determine. Don’t get me wrong I have laid in bed, stood in the shower and gotten lost in thought at a red traffic light coming up with all sorts of reasons as to why my heart is now paying rent to my throat. The winter holiday season is a well-known anxiety fueled host serving up a feast of emotional booby traps. But, maybe not so well-known, is that the summer season offers its own debilitating fare.
I am thrilled to share that July’s guest blog post has been penned by Miguel. I’ve certainly written enough about him on this blog so its only fair that you hear from him directly. Thanks, babe, for sharing our life through your eyes…
Are you eating? Thinking of eating? Just eaten? Maybe wait to read this post till later. I’m typically motivated to write about whatever is dominating our life at the time and honestly, right now, its poop. This is the life folks, just soak in that glamor! Up until last week, Adelaide was frequently constipated. This was likely due to a combination of having low tone, her mast cell activation syndrome and, certainly not helped by the fact that nearly every drug she is on lists constipation as a side effect. I’m going to pause here and remind everyone to be careful what they wish for…
Yesterday, Miguel and I celebrated 10 years of marriage - which sort of blows my mind. The irony of getting married on Independence Day was not lost on us but Miguel found out he would be performing in the Broadway bound American Idiot in San Francisco on our original wedding date soooo we got our first taste of the many curve balls life would eventually hurl at us. While reminiscing on the last decade a few valuable lessons rose to the top. So, I decided to share them in a blog, and not just for my reader’s benefit but also as a reminder to myself for when things aren’t going quite as well… which is inevitable.
