SEPTEMBER 2012-Mark and I were sitting together on the couch watching little Jack sleeping peacefully between us, just a few nights after we had brought him home. The tears flowed. When something is wrong with your baby there’s a sense of loss. Loss of innocence. A hurt you feel for your little one: that everything isn’t OK and you don’t have the power to make it OK. A disappointment that your expectation of a healthy child is not the reality that you are experiencing. There were a million questions too. How serious is this? Will he have seizures? Will it stay this size or grow with him? Can it be removed? What is the surgery like? Did I do something during my pregnancy to cause this?
Time to Be A Hero
MAY 2012- We learned how essential these wagons are on Wednesday. Jack’s original surgery time was estimated to be around 10:30am, depending on when the surgeon finished his first case. It turns out the first case went long–which is completely fine with me, you don’t exactly want your surgeon rushing. So we waited. And the longer we waited the hungrier Jack got. For a while we played in the playroom and that was distraction enough for 45 minutes. Then Mark played the princess guitar and that was distraction enough for all of 30 seconds (although it occupied Mark for much longer).
When fear became reality
JUNE 2012-On Saturday night at 10:30pm my husband and I started to get ready for bed. Jack had cried out a few times in his sleep but had settled himself back down. I thought he might be cutting a few new teeth and went in to check on him and give him some teething tablets. At my touch he started to cry and scream, as if simply rolling him over was excruciatingly painful. We brought him into our room, took his temperature and searched his body for anything that could be wrong.
JUNE 2012- The doctors informed us that right now the only thing they could do was wait for the culture results from the lab, which would determine what kind of infection they were dealing with and help them decided on a more effective antibiotic. The lab results they said, could take up to 48 hours. Jack still needed to be seen by the plastic surgery team, who rounded later in the morning. They suggested we settle in. We were there for the long haul.
I think we’re gonna make it
JUNE 2012-I felt like a stranger in the world or “normal life.” Cars, pedestrians: people going to and from. It seemed such a foreign concept, the events of the past three days had started so abruptly in the middle of the night on Saturday it was now Tuesday. How did I get here? I asked. I didn’t feel like a participant, more like an observer in a foreign land. These people don’t know. I thought. They don’t know what I’ve been through. They don’t know that I have a son in a hospital crib, just up the hill. It made me wonder, how many other people, strangers I pass by are going through something equally or even more difficult. How many people are walking around hurt? Broken? Grieving?
OCTOBER 2012-It was this picture of Jack as an outcast that brought me to tears. But quickly following those tears was an overwhelming sense of joy. In the middle of that scene of outcasts is a wedding; is love. Love knows know boundaries, it knows no outsiders or insiders. Love casts out fear. Fear of rejection, fear of ridicule, fear of being ostracized and demonized. In the middle of the acrobat and the human cannonball and the tattooed lady and the dog-faced boy and the Jack-Attack with the mark on his back and all the other oddities and sideshows was LOVE.
I love an outcast. With all my heart I love him.
A year ago Jack’s back was “under construction, ” with tissue expanders, tubes, ports, drains and bandages. Now all he bears is an ever-fading scar. It’s a relief to be done, yet at the same time strangely sad to say ‘thank you’ and ‘good-bye’ to a very kind-hearted doctor who you entrusted your child’s life and well-being to on the operating table.
HELP MAKE A DIFFERENCE FOR KIDS LIKE JACK