Four. My baby boy is four.
Some people speak romantically about the moment their life changed forever… the day they met their spouse, landed their dream job, won the lottery. I still remember the day Aaron came into my life like it was yesterday, and stand in amazement that I truly have my dream job, and have repeatedly won the lottery (sadly never more than $5), but the moment that my life changed forever… the moment that changed me forever, was February 10, 2009. The day Henry was born.
Four years ago.
The day they said he’d lost 85% of his left brain to a blood clot that traveled through the umbilical cord and into his brain, then split in two sending clots down the Middle Cerebral and Anterior arteries of his left hemisphere. They used words like “catastrophic” and “massive” and the notes I took from that first encounter have my exhausted handwriting of words to look up. Ischemic, hemiplegia, then at the bottom… prognosis unknown. And that sucked. Truly. But that didn’t change me, because that’s not the end of the story.
The story continued with our friends and family rallying around us. A steady stream of support that started that day and has carried us through the past four years, and continues everyday in countless ways. That’s what has changed me. It’s impossible to put into words how humbling it is to be the cause. The family for whom people are praying and making lasagna and delivering care packages. Because they care. About us. In a way I couldn’t have imagined. It’s incredibly humbling, there’s no better way to say it, but in addition to that, it fundamentally changes a person to accept that much help from everyone. It absolutely changed everything that mattered in my life, and it continues to shape our lives to this day.
That’s not to say that I was “wrong” before and now I’m “right”, or that there’s a good and bad in this scenario, just that things are different now. I know how much this community has been there for us, and knowing that, I behave differently in this community that has given so generously. I volunteer at the library, sitting on the Friends board and creating and managing an inclusive summer art series for kids of all abilities. I shop locally, and support Nina’s, Arcadia, Ederer’s and Phil’s with what dollars we have. I always show up to waitress at the fish fry, even when it’s not where I’d prefer to be. I know my elected officials and email them regularly, from state officials right down to the village board. I pay close attention to legislation that impacts education and special needs kids because I know how it affects us in our real world. I’m engaged in a way I simply wasn’t before Henry was born.
Beyond the community, I see my family in a different way than I did four years ago. Four years ago when they came to sit with us, to wait with us, to ask questions and take notes with us. To listen and cry and hope and wish and pray and rally. That hasn’t lessened a bit in the past four years. As Henry has grown and his medical needs are more clear and there are more answers and fewer what if’s, I know that he is loved by so many, that his journey is followed by those who wrote him notes and sang him songs, and keep writing and keep singing and keep asking questions as we continue this adventure. I ask for help. I accept help. I am grateful.
|Hawk and Henry, the best of buds|
Henry is amazing. He’s just perfect, opinionated, stubborn, demanding, particular… everything a four year old should be. And I am thankful. I’m thankful for the lessons that Henry has taught me about how to accept love and support, to live in the today and not worry about the someday, to be a good neighbor, to be a good friend. There is still much work to be done in all of these areas, absolutely, but Henry’s only four.