Last night, I succumbed to the waves of overwhelming grief. I cried so hard that I thought I might vomit. All I wanted, all I could think about, was holding my sweet, chubby baby in my arms. The knowledge that I would never do that again this side of death was too much to comprehend, and I spent an hour sobbing until my throat ached.
Today, I got up again and I kept going forward. I watched a YouTube video and learned how to make “The Dart” – i.e. a paper airplane. My daughters, my mother, and I spent a couple of hours on the porch in the dreary, rainy weather throwing them and retrieving them. At the request of my children, we listened to terrible dance music.
Tonight, Jim and I went out to dinner with James’s doctor. He picked a dark, private, quiet tapas restaurant where we could eat and drink slowly, enjoy our meal, converse. Spending time with him is cathartic. He knew James. He walked with us on James’s journey. We don’t have to explain anything about our feelings or our situation. He knows. He understands. So we are free to just be however we want to be.
Our conversation flowed easily. We talked about James. We talked about our decisions. We talked about books. We talked about television shows. We talked about life and death and the meaning of it all.
It was during that conversation that my feelings on grief began to really become cohesive. Grief is the confluence of two emotions -incredible love and incredible sorrow. It is everything that is beautiful about the world and everything that breaks your heart. It sounds strange to say it, but I am grateful that I have this grief. Grief is an emotion that sharpens your perspective, offering a view of the world that only a few will see.
Perspective. It’s all about perspective.
I spend time on GoFundMe looking at the current trending campaigns. There is so much pain and suffering and need in this world. There are so many people with less than we have.
When we first heard the words Trisomy 18, Jim and I were surprised that we had never heard the term before. Since then, I have realized the naivete of that surprise. The world is filled with hundreds of obscure diseases. SMA, Soto’s syndrome, Leigh’s syndrome, trisomy 13, triploidy….the list goes on and on and on.
When James was diagnosed and when he died, it felt like the world ended. And in a way, it did. At least, our world as we knew it ended. But James had 5 months and 1 day of happiness, of love, of adoration from his family and friends. Even though he was in the hospital 3 times in his 154 days, he was never an unhappy baby. Jim and I were always clear that we wanted to help him live his best life while minimizing the invasiveness of the care we chose for him.
I think we stayed true to that. I genuinely believe that every one of his 154 days was overall a good day. And that gives me hope that we will weather this. We gave James his best life and the most love, and I truly believe that.
Tonight, I read a fundraiser campaign for a family that has many children. One of them has a rare neurodegenerative disorder that will take her life before she reaches her teens. It causes intractable seizures, cognitive decline, joint contracture, pain, and suffering. Her parents must care for her, as well as her siblings, and somehow try to make it all work. They must carefully attend to her pain – which can be severe. They must watch their beloved child slowly wither away in front of them all the while knowing that they can do nothing to stop it. Ultimately, all of the medications will fail, and she will die. I read it and I thought “thank God that wasn’t James.”
People tell me that they don’t know how we did it. They don’t know how we do it now. I will tell you how – because even though it was hard, it was never a burden. Even though we were scared, we treasured every day. Even though we knew that it wouldn’t be for many years, we reveled in the moments. James was an integral part of our family and always will be. At dinnertime, he sat in his bouncy seat and watched us eat. At night, we snuggled on the couch together. When his sisters danced to terrible pop music, and his mommy did Zumba, he observed it all with his bright eyes. He wasn’t apart from us – not a sick, dying baby. He was our baby boy, the youngest, always part of the family.
It was a gift to care for him. And when all was said and done, his life was rich and full, and compared to so many others, it was absolutely amazing. He had great healthcare. He had food in his tummy. He had a family that doted on his every coo and smile. He had a warm place to sleep at night, snuggled with his mommy.
It hurts every second that he’s not here. I ache to hold him again, to tell him one more time how brave he was, how sweet, and how we would have chosen to be his mommy and daddy for as long as he needed us again and again. That ache will never, ever go away. But in my heart, the beauty of his life shines bright, casting light onto the darkness of my grief.
He was happy and he was loved. All of us should be so lucky.