Privacy Schmivacy

Privacy Schmivacy

Kelly Cervantes

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.

Within our means

Within our means

Kelly Cervantes

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…

Love from Tio

Love from Tio

Kelly Cervantes

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.

Goals & gratitude

Goals & gratitude

Kelly Cervantes

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!

Overexposure

Overexposure

Kelly Cervantes

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…

Stall your engines

Stall your engines

Kelly Cervantes

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.

Summertime stressin

Summertime stressin

Kelly Cervantes

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.

dAd.Ham

dAd.Ham

Kelly Cervantes

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…

Code brown

Code brown

Kelly Cervantes

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…

Dependence day

Dependence day

Kelly Cervantes

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.

Family planning

Family planning

Kelly Cervantes

We only ever wanted to have two children. That was always the plan. A) I had no interest in being outnumbered by my kids and B) while growing a child in your body is an unreal experience, the gas, aches, nausea, swelling and all the rest of it is no joke. When Adelaide was born seemingly healthy, I thanked my uterus for its service and mentally closed up shop. Then life got complicated and we were faced with a whole new set of family planning questions.

Haunted

Haunted

Kelly Cervantes

In the earliest days of our Google dumpster dives researching Adelaide’s symptoms one word kept coming up: neurodegenerative. According to the dictionary it means: resulting in or characterized by degeneration of the nervous system, especially the neurons in the brain. The most well known neurodegenerative diseases are Parkinson’s and Alzheimer’s: conditions that typically affect adults, and mature adults at that. So why was this word coming up in searches for information about our daughter?

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