I love that on different apps, we can see photos from “this day” in past years. I love getting to see my now 12, 10, 7, and 5 year old children as babies and toddlers and preschoolers. And this time of year, I see their back to school pictures, proof of how much they’ve grown over a years time. One year ago, two years, three, four.
Then comes five and a photo of a nine month old baby boy pops up on the screen. A photo of a happy, smiling baby boy. A baby boy using both of his hands and a smile that is even on both sides of his face. And then a picture of all four kids, with that nine month old boy tilting his head down as he looked up with his eyes towards the camera. A sign of something that would change our lives forever. We thought it was cute. We called it his “Flynn Ryder look”.
Knowing what I know now, I scour pictures from days before. Looking to see if I’ve missed something, anything. Nothing. We noticed it immediately. That brings some comfort. The very next day shows a photo at the doctors office for his 9 month well child visit. Nothing is abnormal and I don’t think to mention his new look, as it only started the day before.
A few days later, I see pictures of baby boy taking his first steps, the beginning of walking all over the place. Two weeks later, Labor Day weekend, we notice one eye twitches back and forth and I begin to wonder about the eye movement and head tilting that has not ceased. I begin looking closer at the first day of school photo, when we first saw the adorable head tilt. Knowing something’s not quite right, we schedule an eye appointment. The eye exam shows he has nystagmus, a common condition, however, it usually occurs in both eyes. An MRI and an appointment with an ophthalmologist is scheduled for three weeks later to see what is causing the eye movement. Life goes on as normal. Nothing seemed alarming, and three weeks for an MRI certainly didn’t show any urgency was needed in the situation.
I go to the zoo with my cousin for her birthday. Her last birthday. The next day we have family photos taken. Not knowing these photos would soon be all over facebook filled with prayer requests for our family. More pictures of my now 10 month old baby using both hands as he pushes his tractor and crawls in the sand. Pictures of me with the kids that a week later I wondered if they would be the last with him. Photos at a family event that will be my cousin’s last. Enjoying beautiful weather, cousins, aunts, uncles, seafood and fun.
Then comes the day. The day of the MRI. The day I watched sedation medication go through the IV and my baby go limp. Something today that seems routine. The photos from before and after. The day 5 years ago we were told, “There is a mass.” The photos I look at and see no difference except the fact we now know why there is eye movement and the cute Flynn Ryder look that changed our life forever. I remember everyone asking, “how is he?” I look at the pictures, and he’s fine. The only thing that’s changed is what we know. Our baby has brain surgery in one week.
Many photos taken during that week. They include photos of all the kids, many outside, some in doctors offices that have become routine in our life today. Trying to enjoy the week, yet dreading the day of unknown. Not knowing if these photos will be the last of our baby boy. Trying to capture every last ounce of him. And in the meantime, losing my cousin from a brain tumor. She enters hospice that weekend and I do not get to go to see her one last time. Blessings of food and cards and love flow in through the mail and personal visits.
Then the photos of surgery day. The photos before surgery as he played in the waiting room, happy and mischievous as could be, falling asleep on his own in my arms and I am grateful I don’t have to watch sedation kick in because I hand him off to the nurse sleeping and peaceful. Wondering if it’s the last time. Fully prepared for the worst. Photos of a full waiting room as many friends and family came to be with us. The photo taken at 11:50pm seeing him for the first time after surgery. The photo my husband took at 3:40am when our sedated baby boy pulled the breathing tube out of his mouth and doctors and nurses surrounded the bed, stunned that he went straight from a breathing tube to room air without requiring any oxygen or assistance. Very rare indeed. But again, so are brain tumors.
Photos follow of our 28 days in the hospital. Good days. Bad days. Long days. Hard days. Days with no photos of our other kids, because we are not with them. Photos of a birthday party hosted by my sister-in-law in our home because we couldn’t do it ourselves. Photos of celebrating my oldest’s birthday in the hospital, just one floor above where she was born 8 years before. This is also the day of my cousin’s funeral. I’m unable to have full closure from her death because my baby boy spikes a fever that morning and I can’t make myself leave the hospital.
There are photos of progress as our boy learns to take a bottle, sit up, eat solid foods, and each day has less and less cords and monitors attached to get tangled as we hold him, eventually able to leave the ICU room to ride in the wagon upstairs to a new room.