There is something about summer passing by that has always reminded me of hearing the waves come and go as the tide slowly goes back out. The progression of time, marked, as it marches on. I start to miss the longer, warming days and fireflied nights well before they leave me for fall. Since Nadia started kindergarten four years ago, there have been moments each summer when I catch my breath, looking at my baby, and forget about the tide, summer, slipping away. Instead, I wonder if this is the year--the year that the ship begins to sail away and we are left on shore, close enough to see it clearly, but far enough away that all we can do is wave as it goes on its scheduled journey. We have been waiting for it to depart, for years now, really. Each school year approaches and for us, but more importantly, for her, our daughter with the infinitesimal 22q11.2 deletion, it asks us the same question--"Will it matter?" Will her delayed reading or incredibly small stature or her immune deficiency matter? Will the fact that she asks me, five times a day, when spring is coming, or if school is coming in 8 hours or 70 days, all in the same sentence, at the age of 9, be noticed? How can it not?

And yet, each year, she finds her niche. Her circle of miraculously wonderful friends, teachers and fans and it fades, impossibly yet honestly, into the background. I hope against hope that this year will be the same.

I have read the literature and memorized the statistics of the deletion--that the IQ for a child with 22q11.2 hovers around 70 or 80. The working memory function for a child with 22q11.2 deletion fails its user, time and again, and as a result, recalling something for Nadia while processing another is akin to me patting my head and chewing gum--while driving a race car. I know that while Nadia loves to read her favorite books again and again, summarizing or elaborating on new books is incredibly tricky. Story problems, unlike math facts, involve abstract reasoning and reading comprehension, and watching her try them reminds me of someone blindly panning for gold, sifting away, always excited at first, but not sure if she will ever find that little nugget within all of that other grit. I know that mental illness impacts over 60% of the children with 22q and behavior problems are more common than not. Nadia, thankfully, doesn't seem to be impacted, YET. I know that she is at risk for diseases and prognosis that only a decade ago I had never seen in print and that her immune system is not nearly as tough as her spirit. I know that I have seen over ten specialists in Children's Hospital with my peanut and each one says she is beyond lucky, "BUT WE WILL HAVE TO WAIT AND SEE…."

The future, unlike the one for my son, is not filled with hopes of AP classes and honor societies and maybe just maybe, an Ivy League school, like her grandpa. It is not varsity sports or the 90th, or even .09th, percentile in height. It is, for us, not about the joy in wondering what our child will become and daydreaming about climbing those typical ladders and checking the boxes of life. With Nadia, and I suspect with many parents of kids with special needs, it is SHORT TERM goals and SHORT SIGHTED happiness-- because we don't know what later will bring. I can't focus on what might happen or what she may (or may not) learn along the way, because I am too busy focusing on finding joy now. Truthfully, the days are filled to the brim with life, with us trying to still enjoy the lucky card we were dealt when we realized she was going to make it and we realized, after a while, that we would make it, too. Practically speaking, we focus, when we must, on her health, and on learning things like money and time and days of the week, things that people refer to as "life skills," things my son learned without my help or knowledge. I would love it if Nadia came with a manual, one that predicted what she could achieve so I could push her just enough and know what makes her tick, one that tells me what to put on her IEP for goals or what I can expect as the years fly by. But, with her, I don't have the parenting magazine's expert opinions or a sheet of grade level skills to master. I have, quite simply, parenthood and life boiled down to today.

I guess that, in the end, I have to believe, for survival and, more importantly, for happiness, that there is a reason. For her. For the deletion. For me in these enormous shoes. For the first few years, I didn't see the gift because I was too busy drowning in my fear, my sorrow and her illness. I was too busy to notice that I was given this life-sized token to take one day at a time and to accept her and life for today. Contrary to my desire to control or steer the course, I simply cannot. As I watch Nadia, I am reminded that despite my honest, raw desire to "fill in" that tiny missing chromosomal deletion--I'd still be lying if I said I wouldn't pay any price to buy her a guarantee for a healthy, long life--that she sees and experiences life through very different eyes and that her eyes see, day after day, JOY.

Most of my friends have children they think are perfect and it is, understandably, difficult for them when everyday limitations or challenges and parenting bumps arise. Their benchmark, from the moment the children were born, was perfection. For us, we had a baby that had so many challenges and we were forced to set our sights on survival, rather than perfection. We were told, numerous times, that she might not make it; might not speak; might not have a functioning immune system to allow her to experience the big wide world. The best part of our journey has been to discover all of the amazing things about her. Each and every milestone and moment matters. We appreciate the world and people through her eyes because she is HERE and she is EXTRAORDINARY. She loves without limits. She smiles without reason. She skips and hums without a care in the world. She lights up when she sees a friend, family or a smiling stranger, and that, THAT, has been life-changing. Instead of parenthood being competitive or negative, I feel like it has put us squarely into a world and life that is collaborative--doctors, teachers, friends, neighbors, coaches and family. We are all on a team--Nadia's. We are navigating an unexpected, but privileged, journey to try to make her world filled with confidence, opportunities and acceptance and are driven by the knowledge that because of Nadia, we are so much better than who we would have been otherwise.

When I was driving to the boat dock today to go boating with my kids, Nadia repeatedly asked if we would be there in 4 minutes or 4 hours and I said, like I always do, "10 minutes, buddy. We will see, pumpkin, when we get there." Flat. Neither here nor there. I can't engage in a learning opportunity every time, but I try to say something that's at least patient. I thought about school, again, and wondered how the year will go. Fourth Grade seems to be bigger, older, harder than the years prior. And I felt myself get a bit worried. But, true to Nadia, I watched her pop out of the truck at the dock and skip over to an elderly man waiting to get on a boat and she said, "I'm Nadia. I'm doing a bike race soon." They chatted, but I couldn't hear the rest of their conversation as I backed the boat into the water. I watched her show him her hand trick. And I watched him try to copy it as she smiled up at him. I watched her give him a high five and help him into the little fishing boat that was now waiting for him to board. And as I leaned out of my window to ask my husband something, the older gentleman, beaming, said, "I hope I see you again soon, Miss Nadia." Nadia replied, giggling as always, "Maybe in 4 days or 4 years!!" and scampered on board our boat, so alive and bubbling over with happiness. Fourth grade will be ok, I told myself.

Indeed, Nadia was the team manager for my son's basketball team and loved it so much that she would even huddle up with them after each game. There wasn't a 5th grade boy who didn't high five her when she arrived or pass her the ball when she warmed up with them. When basketball season was over, Nadia was truly sad that she wouldn't see "her team" anymore. As luck would have it, we got a phone call a month later that there was an "opening" for a bat girl on the 5th grade baseball team. Nadia ecstatically accepted the position and was the most enthusiastic and adorable bat girl I have ever seen. The catch was that despite the fact that my son is in 5th grade, he isn't a baseball fan and wasn't on the team. Nope. I had a 9 year old girl on the 5th grade boy's baseball team and it was the best season I can remember. My son's basketball coaches are beyond kind and thoughtful (think angels on earth) for thinking of Nadia and for allowing her the privilege of being on the team--we have two trophies and a framed picture collage to commemorate her winning season. But, I will say that Nadia made the team brighter. Softer. Better. She cheered and hustled and chatted and joked and they rallied together, and more importantly, around her. We thank our lucky stars that her experience as a bat girl sums up Nadia and our life with her. There is no one that makes people shine like my Nadia. No one.

So, I am telling myself and I am telling you, that it truly doesn't matter if she gets numerical order or number sense in 8 hours or 70 days, because today, this minute, I look at her and I, too, am beaming. Her deletion and learning are so complicated and yet the way she lives and loves are so beautifully simple. She loves with all her heart and she lives, in the moment, every day--something that seems, at least to me, having been there before her, to escape the rest of the world.