Several weeks ago I painted a beautiful picture in my head of what our homecoming reunion with TC would look like. While there have been splendid moments in the past 24 hours, the reality in no way matches the picture. It started with T’s discharge. We had hoped to make a seamless transition from the rehab hospital to the hospital where TC will have his cranioplasty performed. Going home without his skull put in place was something we definitely wanted to avoid. However, after a long and complicated battle with our health insurance, we were booted from rehab a week earlier than planned. They simply didn’t want to pay for anymore days.
On Friday afternoon, I picked TC up from the hospital, collected Jack, and started the two hour venture down to southern Maryland. About 45 seconds into the trip TC became violently nauseas and spent the entire car ride holding a plastic bag to his face as he tried to vomit. I suppose the motion of being in the car coupled with the dizziness and poor balance he suffers without his skull were to blame. In any case, Jack did not help the situation. He spent two hours screaming bloody murder from his carseat. By the time we arrived, I had pulled over 4 times to accommodate everyone’s misery. The three of us were in tears: Jack crying from exhaustion and the stress he sensed from both of us, and TC crying from the headache Jack’s screaming caused and from his feelings of helplessness as he watched me try to fix the situation. My tears were the result of physical exhaustion, illness, and the overwhelming desire to finally give up. At some point during the horrific journey I had a flashback to one of our earlier trips to southern Maryland, laughing and catching up in the car as Jack slept. “Look at what these people have done to my beautiful family,” I thought. “Look at how damaged we are now.” Those two hours were the worst I’ve experienced since the afternoon of August 18th.
After the storm, the dust settled a bit, and we were able to put ourselves slightly back together. TC is thrilled to be away from the hospital, eating home cooked food, and watching Jack play as he observes all the changes in his son that have taken place over the last few months.
It is joyful for me to witness TC’s joy, but the responsibility of taking care of him in his current condition is terrifying. There are so many steps, so many safety concerns, and so much planning involved in every little thing, even when it’s as small as moving TC from the couch to the bed. Add in a little guy who is desperately trying to grasp the new situation and who clings to my leg yelling, “Mommy! Mommy!” and the reality of the situation most definitely strays from that picture I painted.
Sometimes I want to fast forward a year in my life and get a glimpse at what is, hopefully, a brighter future. Sometimes I want to skip backward into the arms of my old husband as I explain to him how scared, overwhelmed, and alone I feel. He would listen. He would understand. He would fix it. And sometimes in the present, I want to find a dark room, close the door, and never emerge. I have been through 11 weeks of hell, and the truth is, the path is still so much longer. It is difficult to see the light when it’s blocked by a mountain of hard work, frustration, and exhaustion ahead.
I’m not sure there are any pretty pictures in my immediate future, but the ones I imagine in my head will have to suffice in carrying me through the journey we still face.