Miss Adelaide is having a surgical procedure done next week and the pre-op appointments have been a lot. Due to her medical history we have to receive clearance from her cardiologist, pulmonologist, pediatrician and anesthesiologist. All of of which have to examine her in person to clear her and then there are additional blood labs the surgeon requires as well. I’m fairly certain that by the time this is all said and done we will have spent more time at the hospital preparing for the procedure than we will spend there for and after the procedure. Safety, precautions, yada yada yada - It's exhausting. Each doctor requests a recent history, which for Miss A takes a good 15 minutes to present - and that’s just getting caught up on her last month. Have her meds changed? Is she still having seizures? Is the sky blue? The only highlight was the chiseled bone structure of the anesthesiologist that did not go unnoticed or unappreciated by Adelaide’s nurse and me.
Cheekbones aside, I’m spent and this Mama needs a minute. So, I called in some reinforcements this week. Specifically, my Dad. I’ll be back next week with updates and more details about Adelaide’s procedure. Until then, I give you Doug Martin, a little salty, very cautious and all heart:
When I was asked by Kelly to take a turn penning a guest post for this blog it came as no surprise. With everything she has going on in her life she’s earned a break when she needs one but I also think maybe it’s become a little monster that needs to be fed weekly regardless. I asked her if there was any particular aspect or topic about epilepsy or Adelaide she wanted me to address. As the naturally challenging daughter she has always been (Adelaide did not come by that trait at random), she provided me the answer I most feared. “I’m open to what you’d like to write about”.
The blank canvas. Great.
Needless to say, I am heartbroken for my granddaughter’s daily suffering and condition and simultaneously amazed and in awe of Kelly and Miguel’s ability to deal with and manage the myriad of issues and ceaseless care Adelaide requires 24/7/365. Though you might not believe it, if you have been around me enough and heard me complain, I’ve always considered myself to have had a life of good fortune. I was born into a stable, supportive Midwestern family and we never lacked for anything we really needed. I was educated at excellent schools, worked my entire career for a single employer in various jobs I truly enjoyed that enabled us to retire comfortably five years ago. I married the woman of my dreams and we raised two of the most fantastic children any parent could ever hope for. In Jackson and Adelaide, I have two wonderful grandchildren. I am blessed. It’s obvious, even to me, in spite of my petty complaints about general matters of relatively low importance.
Adelaide’s condition is a dark cloud of uncertainty in my world. It’s not at the forefront of my attention all day, every day like it is for Kelly and Miguel or other parents and people caring each for children (or adults) in situations similar to Adelaide. But it’s still there. There are hundreds of little triggers and reminders of her everywhere - any mention or glimpse of a young child is a reminder of my granddaughter and the daily struggles of my family in Chicago. The harsh reality of Adelaide’s world lurks around every corner and can pop up unexpectedly.
My brain works in a way my immediate family finds most irritating. I almost compulsively do contingency planning, even involving circumstances over which I have limited or no control. It was part of my job every day for years. Sometimes its safety related, other times to better manage time or cost. Sometimes, when there is no way to manage the outcome, I do it to manage expectations, my own or those of others. When it comes to Adelaide, I’ve had to suppress that reflex as much as I possibly could. There is no way I can control or even influence any outcome. I have no expert knowledge or experience I can share or bring to bear. It is not my place to manage anyone else’s expectations; in fact it would be counterproductive. Frankly, I’ve tried to resist managing my own but I’m not completely successful with that. I want to be as hopeful as I possibly can about Adelaide’s future but the evolution of her epilepsy and overall condition make that difficult.
Have I thought about what it would be like to be in Kelly’s or (particularly) Miguel’s shoes? Yes, usually in my nightmares but also in conscious moments. Even as a young parent my “what if” thought process occasionally led me down the wormhole of pondering how life might be if one of our kids was severely disabled. How would we cope? How would I balance family and job? Could I handle it emotionally? Fortunately, I never had to find out. Unfortunately, my daughter and son-in-law did. When I think about the situation they face every day I find it so terrifying I can’t continue to contemplate if for long before I’m pushed to the brink of tears. Every time I’m with them I see what it’s like, what they have to manage every day. I marvel at how they can handle it all and still create a relatively normal family life in parallel. I’d like to think I could have done the same but I’m not certain that’s so.
Finally, to those of you reading this who have reached out to Kelly and Miguel with words of kindness and support - thank you. It is comfort to me to know they have supportive friends, some they’ve never met. To those who have provided assistance, often countless times in many different ways - your selflessness and generosity mean more than you realize. Not only to Kelly and Miguel but to me as well.
I am a fortunate man indeed.