March 21, 2013
Today marks one year since you were brought home from your long and tumultuous beginnings at Children’s Hospital. Though you had a home in my heart from the first day I found out I was pregnant, you had finally settled into your own space in our family home. Even with all your medical equipment, it felt so natural for you to be there, with us. Though I had my occasional doubts and fears, I always knew that you would choose to be with us. I could see it in the way you looked at us through your squinty eyes after those first few days on ECMO. Or when you would give us a sheepish smile when we walked to your bedside though you were in obvious pain. And especially when you were well enough to get out of bed to play and laugh with us.
Today, I find myself thinking about all that has changed in the past year. It shows in every aspect of my day. For starters, today is a blustery 35°F…Last year was 82°F. Today, I am spending most of my time on Excel, last year was the second day of a two-week leave from work to spend time with you. Last year, you were coming home on continuous oxygen, with continuous gtube feedings and an ileostomy bag. You were fragile and scary and I was intimidated and unexperienced. But, today you are oxygen and ileostomy free. You are eating half of your calories by mouth and getting scheduled boluses by gtube. You have no tubes or lines that we trip over. Now-a-days, we travel with only one diaper bag. And you have grown into an intelligent and independent young man. You amaze me daily with all the information you process and demonstrate through your signs, words and actions. You are becoming a boy with ideas and desires and demands.
But there are also things that have not changed in the past year. You still look at your Dad and I as if we are coming to rescue you from world-ending boredom. You are excited when we walk in the door and greet us with blown kisses and an excited shriek. You still have that determined look in your eyes when you attempt something new and make discoveries.
And you still have that home in my heart.
You have made my world into a place where it will all be okay at the end of the day, no matter how the day starts. Where reading The Hungry Caterpillar for the 40th time is still exciting, and cinnamon animal crackers could fix all the world’s problems.
I have thoroughly enjoyed this past year learning who you are and am looking forward to spending the rest of my life seeing who you become.