I vividly recall the moment I was wheeled into the NICU to see you; the cords attached, the tube in your mouth, the beeping machines… I wasn’t allowed to hold you and I wept as a new mom, unsure how to respond, how to act, how to attach, how to detach. As the day went on I studied you, everything about you, peach fuzz on your body, the creases around your eyes, the flare of your nostrils as your inhaled…I took you in and memorized as much I could so when I had to leave the room I had you in my heart and head.
Thirteen. I find myself looking at you, a teenager. I can’t believe it. Again I study your physical changes, noticing subtle changes as you age. I memorize again, keeping it all in my heart and my head.
As you grow up you continue to gift me a profound human experience. Parenting with no future. It feels so different when comparing it to raising your sister. It is relaxed, it is present, it is love, it is sacred, and it is hard…mentally and physically hard. There are so many challenges that come with parenting a child with a disability and adding a transition from childhood to teen years is an added layer. I new playing field, new territory. But going back to the parenting with no future, it still exists regardless of the added duties to care for a changing body. I parent intending to make sure you experience life for happiness. Make sure you have the things that make you happy -your favorite ball, your cup, your movies, your books, a massage before bed, a long bath with music, a walk in the early morning, all things that I know your enjoy. Each day we do it all, and each day we achieve these simple, fulfilling goals. We live each day with you in repetition, achieving your state of happiness in the form of being content.
Of course, happiness doesn’t exist without pain and sorrow. Did you know that if you don’t feel the sadness it can restrict your ability to experience happiness?
I celebrate this 13 birthday with all the love and happiness, knowing it comes with the cost of knowing I live on the edge of loss. The pain is also the gift to feel the joy and happiness.
Happy 13th Jack!