Guarded Hope

It wasn’t until something that I wanted so badly was completely out of my control that I understood what it meant to hope. I didn’t know what hope was until it was all I had.

When I found myself in the emergency room, I remember the doctor explaining to me the gravity of the situation. He said that I had severe preeclampsia. I would have my baby soon. I was only at 24 weeks and assumed he meant somewhere closer to 30 weeks. I have heard of 30 week babies being delivered. However, the doctor wasn’t finished. He continued to say that if my blood work did not look good, I would have to have my baby immediately. I cried while I waited for those results. There was nothing else I could do.

Fortunately, I was given a reprieve. I was allowed to carry on with my pregnancy while on hospital bed rest. In the best case scenario, I would be able to carry until 32 weeks. I was afraid to hope for 32 weeks. I could only hope for my baby to reach 1 kg before delivery.

My baby was delivered at 26 weeks. She weighed 790 grams.

The first time I saw her, I was only able to hope for her survival. Each day, I stroked her head and hoped that she would make it to the next. Gradually, she got stronger. It seemed too greedy to hope for her to come home. Instead, I settled on hoping for improvement each day. There were days, I wasn’t so lucky. On those occasions, I regressed to hoping for survival.

That is how Charlie’s NICU stay went. I hoped one day at a time while constantly being reminded “Never trust a preemie.”

One day, her doctor used the word “home”. It was too much. He exceeded what I could hope for. I started crying in the middle of the conversation. I knew she would come home eventually. However, up until that moment, I felt like it was too much to hope for.

We left the NICU almost six months ago. I continue to find myself hoping. Due to her developmental delays, I find myself hoping for each milestone or for therapy goals. Some days, I hope for and delight in the slightest signs of progress. I was asked to set Charlie’s long term goals for Early Intervention. I find this task to be impossible.

What I want and what to hope for are two very different things. I want her to “catch up” by the age of two. I want this whole preemie thing to be behind us. I want it to be a history and nothing more. But, I can’t hope for that yet.

I can hope that she will walk. I can hope that the momentum gained in physical therapy will continue. I can hope that she will learn to eat.

To me, hope is a double edged sword. It is what is left and what I cling to when things are out of my hands. Conversely, hope is a reason to carry on when jaded and weary. It can be crushed in an instant. After so much loss and heartbreak, it is important that I guard it. I look forward to a time when I can hope without restraint.