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? I can’t introduce Marcos without also applauding his tireless efforts to raise money for CURE and awareness for epilepsy. Be it with his friends at Hamiltunes - An American Sing A Long or his crossfit family at Crossfit Rowlett, he is always looking for ways to contribute. Sometimes, he says, “when the road calls, I strap on my running shoes, grab my CURE flag and hit the road. Just me and thoughts of my beautiful niece Adelaide.”

I can’t tell you when I found out about Adelaide's condition or when I realized how severe it was. Though, I can tell you how I felt when it hit me as a father, then as an uncle, then as an emotional man. With a vulnerability, I hurt for my brother, for my niece, my sister-in-law, my own children, the grandmas...our whole family. Like a lightning bolt striking in the same place, not once, but several times in a row. I would feel it again and again during many phone calls that would start with mom saying "Marky, call your brother”, or, Miguel saying, "Hey, we are on our way to the hospital again." What do you say to that? You wish there were some magic words or phrase that would do the moment justice. Maybe the best you can hope for is to fumble out something meaningful or encouraging. But I know these are all things my brother has probably heard many times over. 

It’s hard to fathom the reality of having a child with special needs until you are in the thick of it. This year, I was lucky enough to spend a week of vacation in Michigan with Adelaide. It was a clear glimpse into an involved system: the sleepless nights, the uncounted thirty second cat naps, the buzz of the monitor, the sudden movements, the look of questioning concern about those movements, the machines, the transport, the medicine, the schedule, phone calls, me time, the monitoring, quiet time, and all of the accoutrement of daily life therein. Add in the side business, advocacy work, passion projects, navigating relationships with family, friends, and the effort that requires. If they get overwhelmed, they wear it well. I look at their faces and wonder if they are questioning all this. Questioning what is the universes' master plan or end game? I look at their lives through the lens of my experience parenting my own children, knowing how much it has taken to raise them. Looking back on my moments of trial and struggle, I can’t help but wonder during those times, as difficult as they were for my wife and I, how much more difficult are those parallel experiences for them? Their ‘normal’ seems daunting to say the least. All I keep coming back to is, I don't know if I would be strong enough.

My brother and I had a conversation one afternoon. I was in the middle of a panic attack and called him, because in those moments you just want someone to listen. After a few minutes of anxious ranting, he commiserated saying “Mark, I look at my baby girl and walk around mad sometimes and ask why is this happening? And there is absolutely nothing I can do to make her better.” Forego the rest of the conversation because at the sound of those words, I immediately felt a grief that I had not felt in a while. The kind of feeling that you get in the pit of your stomach that disrupts you. It reminds you that you are not invincible and maybe even takes you back to a place that you mentally remember but really physically re-feel. I started thinking back on the first time I took my son Julian to the hospital and they had him laid out poking and prodding with a thermometer and catheter and he was crying uncontrollably and I couldn’t comfort him. He was helpless. I was unable to hold or soothe him. That kind of grief. Which I only can imagine my brother and sister feel on a regular basis. I then think "or do they?" Is that kind of grief normal for them? Do you get used to that feeling of being helpless? You just want to grab your child and scream out that you would give up anything to not let them suffer. Do you stop screaming out at some point and accept the cards? What exactly are you accepting? Whose in charge of the fucking cards? What were they thinking? What am I thinking? I think about all these things, a lot. I think about Adelaide, a lot...

Every time I get a chance to see her, it’s a b-line straight to her. This year’s visit was no different. A kiss on her chubby cheeks and I squeeze her hands. I look at her and want to know what she is thinking. Does she know it’s me? When she makes sounds, what is she trying to communicate? Is she trying to communicate? I kiss her fingers and let her know it’s ok to come out. Flap her ladybug wings and make the sun rise with her smile. I imagine she hears me and says "I'm working on it, Tio." I hope she hears me say I love her and recognizes the sound of my voice. This goes on for the whole week and the entire family helps where they can and tries not to get in the way. We pick her up and hold her as if she is made of glass, scared of breaking her, disconnecting a hose, or putting her body in an uncomfortable position. Then to see Jax jump and hug her and smother her with kisses, Kelly pick her up, administer medicine, carry her up the stairs, Miguel grab the machines and bags and power them up the stairs; you can't help but think, "There goes a strong and resilient little girl who is protected and cared for by a strong and resilient little family."