Monday, November 4, 2013
The day had finally arrived. We had been trained in CPR, ventilator care, and Emergency Procedures. Equipment had been ordered, nurses had been hired to provide care in the home, and we were ready to go.
Prior to the discharge date, we had a planning meeting with the doctors, nurses, and social worker. At this meeting I believe we were talking about what Caleb's needs would be when he went home and how we would meet them. The only thing I can remember from the meeting were the questions Bob and I wanted answered. Would Caleb ever be able to get married and live a normal life when he grew up? And, what was the exact date of our discharge? Of course, the doctors couldn't answer our question about what Caleb's life would look like when he grew up. From the time of Caleb’s conception I began to imagine the totality of his life. His birth was not only the beginning of a life but the beginning of a dream that I had already sketched out . I didn’t realize then that dreams can both give hope and cause great grief.
A few years ago our good friends’ ten year old daughter died unexpectedly. She was best friends with my son. We thought his grieving would be long and hard, but although he missed her in the day to day activities, his grieving was very different than mine. I not only missed Sara in the day to day activities, but I also grieved for all of the things that she would never experience - her high school graduation, her wedding day, the birth of her own child. My son lived in the here and now, while I lived both in the present and the future. Bob and I experienced this same loss with Caleb. Although we were adjusting to the idea of him on a ventilator,I struggled, needing to make sure that my picture of his future would remain as I had planned. Amazingly, as the years have progressed, it has not been the ventilator that has kept Caleb from achieving the dreams I had for him, but a very different diagnosis that we would not receive for a couple years to come
.As the nurses wrote out discharge orders, we got Caleb dressed in his "going home" outfit. Even though this outfit was larger than the one we had originally planned, it was just as exciting to put him in it. We were finally getting to walk the path that we had envisioned when we entered the hospital two months earlier, we were walking out with our child in our arms.
We headed out of the hospital, quite the entourage. Bob and I and Caleb led the way, followed by the doctor from the ICU, the equipment company, and the home care nurse. Everyone wanted to be sure that we got settled at home and that all equipment and systems were working as planned.
It was an exhausting day, but as everyone left that evening, except for the nurse, Bob and I basked in the joy of having a "normal life again". We thought we had made it through the toughest part of our journey and didn’t realize that the terrain would continue to be rocky with many more hills and a few mountains still to climb.