I love your brain

It’s National C.P. Month…Which of course has me thinking about the effect it’s had on my son’s life, and mine. I know the inclination is to feel badly for us however you’d be surprised that overall much of it’s influence in our lives has been positive. Much as I wish Cole’s life could be different for him, I can’t go into that “what if” place because ultimately, I can’t say that he’d be the beautiful, amazing boy that he is if things were different. It’s a slippery slope…

I saw a post on The Mighty where they asked people to write a letter to the diagnosis of their child, themselves, etc. I tried, but it ended up feeling like I was defining Cole by the diagnosis and he’s anything but that. In the end, the letter is to him:

It’s been almost thirteen and half years since we first met. You arrived in my life unexpectedly and immediately won my heart and shook me to the core. From the moment the doctors stopped using hours and days as markers of your future, we started to do our best to parent. We changed diapers, quickly learning to maneuver around the tubes and wires that were attached to you.

We held you as often as we could, talking to you and singing whatever songs we could recall – Lots of Beatles and Elvis Costello. You probably thought your name was Allison for a while there! Bringing you home, after five weeks in the NICU, was a huge milestone and meant lots more adjustments and routines. We learned to be adaptive and creative and most importantly we learned to accept help from others.

Doctors gave grim prognosis of what your life might look like, but you had other ideas and we were none too happy to support your every want, need and whim. You’ve thrived over the span of your short life. You’ve exceeded every expectation doctors had for you, and you have warmed the hearts of everyone who crosses your path, is touched by your smile, or delighted by your laugh.

You’ve never accepted that you had limitations. You find the way that works for you and you go for it. You lead a life not unlike what is considered typical. You’re a good student, a great friend, and an avid athlete. Though you have challenges other kids don’t face, and you’ve had to endure therapies, surgeries, and recoveries most kids don’t have to deal with, but you do it with grace and usually with the knowledge that whatever it is you’re having to do is ultimately only meant to better your life, strengthen your body, or enhance your day.

You inspire me on a daily basis and your influence has made me a kinder, more accepting and caring person. You also humble me. I understand that I too need support and that it’s not a failing to accept or need help. It’s a blessing to have people who I can count on to be present in my life, to listen to my woes and sorrows, as well celebrate in my joys. Your influence made me recognize that I value the strength that is gained in vulnerability.

To say I love you only touches on how indelible an impression you have left on me my dear boy. I am thankful for you every day and so proud to be your mom.