Today is the day I bombard you with scary pictures. Today is the anniversary of my (most recent) brush with death. Today is Noah’s birthday.
Some years have been harder than others to celebrate my youngest miracle child. In those years, filled with failed therapies, dashed dreams and an overwhelm I felt in my bones, his birthday was a reminder of all of his struggles.
I would remember the monitors and alarms that wailed in the NICU (and also in my dreams) as I looked at photos of a 1 lb. 6 oz. baby. I would remember the feel of his paper-thin skin and the smell of hospital hand sanitizer. I would cherish the nurses who looked over his incubator when I didn’t have the strength. Who would softly sing him songs and talk to me about ‘normal’ things when most people avoided me out of fear of what to say.
I would think back to our 29 in-home nurses. The ones who guided me, who provided our family with the ability to sleep soundly at night. The ones who gave us outrageous stories to laugh about. The one who would sit in front of his ventilator all night and cry (she didn’t last long).
I would remember the 17 times he extubated in the NICU before receiving his trach, the handful of times I saw him blue and unresponsive in my arms, his Survival Flight we watched fly overhead as we drove to the hospital without him, and the 27 sedations he had in one year to repair his closing airway.
This year? This year we are making progress. Real progress.
There are still so many things to work on, but he is moving forward in so many ways.
I can look into his future and see ways it will all work out. I can see places he will fit in.
The past year has been so hard for so many people, but we survived it! We stayed healthy, we made the adjustments we needed to make and we are thriving.
On this birthday, I’m not only remembering the challenges he has fought so hard to overcome, but I’m envisioning the possibilities ahead.
Happy Birthday sweet boy, I love you more than you could know.
This is so beautifully written, Jillian. Thank you for sharing his story, your story. You are such a warrior! Happy Birthday Noah!! – Jessica