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.
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.
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?
More than anything in this world, I am grateful for an incredible partner with whom I can share this life journey. For if we are placed on this Earth with a purpose, there is no doubt in my mind that Miguel’s purpose is to be a father and he exceeds at fulfilling it everyday. So, in celebration of Father’s Day, this seems like the perfect opportunity to dish on Miguel and why he really is as amazing as you think he is.
I have a confession to make: I’m leading a double life - or at least thats what it feels like. In one life I am the parent of an able-bodied and neuro-typical child, we go to little league games, do homework and fight about screen time. Then there is my special needs parenting life where I am measuring meds, counting seizures and managing medical, therapy and nursing schedules. At home these lives are intertwined but when I step outside of the house the stark differences can brew a social anxiety that I’m just now figuring out.
On Wednesday, Miss A proved once again what a bad ass she is when she underwent surgery to place a Vagus Nerve Stimulator (VNS) device in her chest and neck. In this week’s blog, I break down what this device is, what we hope it will do and why I broke my oath to never put Adelaide through another invasive procedure.
