Sleeping Beauty and the Lake (bi-pap mask and oxygen concentrator also pictured), August 2019

As I write this on Wednesday evening, Nurse A has just arrived and taken over Adelaide duties for a much appreciated 12 hours a day. I’m sitting on the deck of our cottage, looking out at sail boats on Lake Michigan, drinking a beer with a perfect breeze on my skin. Life is good. I knew I needed this vacation, I just wasn’t sure if I was going to be able to truly relax and enjoy it. It took until last Friday, five days into this 13 day vacation, to let go and stall out. Thank goodness we decided to take two weeks this year! Adelaide is no worse for wear and in certain moments almost seems at peace as well. Not all the time certainly, but enough that it’s noticeable. Admittedly, I’ve had my moments where I’ve caught myself watching children around Adelaide’s age playing in the sand and imagined what this trip would look like if Adelaide weren’t the way she is. But that’s a dangerous daydream to travel and I know better now than to follow my consciousness down that toxic and unproductive rabbit hole.

A close second to being able to finally relax has easily been spending time with family. The first week of this vacation was spent with Miguel’s family and the second week with mine. We don’t live near our immediate families so, depending on schedules and financial situations, we are able to see some members several times a year but others only once a year at best. Having this time without distractions of holidays or events has been priceless for all parties involved. For many, they keep up with Adelaide’s health through this blog, social media and the occasional phone call. Seeing her in person though, is another experience all together. Because we live with her everyday I can forget how jarring it is to see a three year old as immobile and communicatively limited as she is. I am also at an advantage in that I am still able to see the little girl that she once was, smiling and observant, layered upon the still feisty but distant child she is now.

As everyone asks their questions about this med or that tube, an odd movement or scar, Adelaide’s reality, and in turn our own, settles upon them. It’s in these moments I often see their tears. It has been the same with close friends when they come to visit from out of town. They can be deeply engaged in our lives, in all the same ways as our family, but until you see her and hold her I just don’t think it all hits home. 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? Where were those years of acting classes when I need them?!

It is possible I am a bit overexposed to this life of numerous medications and frequent hospitalizations. My ability to compartmentalize has been strengthened and tested to the point that I worry a little about my capacity to emotionally connect in the future. The truth is I can recount Adelaide’s seizures and breathing episodes with the calculated detail of a seasoned trauma surgeon. Many times I have offered a comforting hug to the person I’ve just upset not oblivious to the backward nature of the gesture. They are crying as a result of learning about my daughter’s life and its impact on our family. Yet I am the one as calm and natural as I would be sharing a story about a mundane trip to the grocery store.

Tabasco with his signature underbite and bowtie, August 2019

It’s taken some time but I know now this doesn’t make me a bad mother or callous. On any given day I don’t necessarily have the emotional capacity, energy or need for tears. This is our everyday normal and if I couldn’t make it through a conversation about our daily life without crying I would be pretty useless to the rest of my family. Of course I have my moments where I break down, where my legs just aren’t strong enough to keep me up and a good cry is just what the doctor ordered. But they are not as often as they once were. Living with Adelaide’s reality everyday, I have had over three years to practice processing my emotions and to grieve the future I had dreamed for her. It is a continuous process that I doubt will ever fully resolve but is something I’ve learned to manage. Our friends and family get hours or days to take in Adelaide. Their emotions and my lack there of is a reflection of our exposure not our strength, compassion or empathy. So I will concede to being overexposed but I do not apologize, just as I don’t fault or judge anyone for their tears in the wake of our life. As the sun sets on another beautiful day here in Michigan, the reality is that life is hard AF. Which makes me that much more grateful for weeks like these with family. Although, I could do with a little less sand in our bed… I am looking at you Tabasco.