After being born a week late and on April Fools Day, I knew that Kellen was a kid that would march to the beat of his own drum and I loved him for it. I will never forget during our time in the NICU when the doctors, in a push to help him gain weight, decided to fortify my breast milk with extra calories and Kellen suddenly stopped eating. For days, we tried to get him to take his new bottle and he refused. The doctors believed his heart conditions must have been getting worse causing him to become too fatigued to eat because there was “no way” a two-week-old baby could tell there was a tasteless fortifier in his breastmilk. But they didn’t know Kellen like I knew Kellen. I knew him better than anyone I have known and believe I will ever know in my lifetime. We were that connected, as mother and son. See, I knew that nothing was wrong with Kellen, he just simply didn’t like them messing with his food and I didn’t blame him. Maybe a normal two-week-old baby couldn’t tell the difference between fortified and unfortified breastmilk, but Kellen could and after a taste of plain breastmilk, he ate like the champ he was. That is the baby boy I remember, stubborn and strong, the baby I loved.
My love for him was bigger than anything I had ever experienced and as time went on, three months into what would be our final hospital admission, I knew that I would make that dreaded trip home alone with an empty car seat. I knew days before he left this earth that it was time to say goodbye. The air was harder to breathe, the room felt empty, and the light -his light- was gone. He was already on his way, taking a piece of me with him, and I felt it deep in my soul. It wasn’t that we had given up, I loved him too much to not help him put up a fight. “There is nothing like a mother’s love”, they say. It is powerful, unyielding and in a helpless situation, that was the only thing I could offer my baby boy, love. Over time, I lost count of how many times they told us to prepare to say goodbye and he would just pull through like the superhero he was. Day in and day out, surgery after surgery I sat by his side advocating for him in every way that I could because of love. Our journey taught me that there are no limits to what we as parents will do for our children out of love.
We endure fertility treatments, morning sickness, and labor because of love. We sacrifice our time, money, and precious sleep because of love. We love them unconditionally beyond our and their wildest dreams, praying we never have to see them suffer because we love them. For those of us that have cared for critically ill children, a parents’ love becomes endless hope in the darkness and relentless faith in the wilderness. I loved my baby boy, my Kellen. I would have moved Heaven and Earth to ensure his safety and comfort. I would have given him my own heart if it would have saved his life. Despite this dedicated and selfless love, when your child dies it seems society expects you to move on as if that love magically disappears with the loss of your child. Their lives have resumed, so why haven't yours? The day he was born, I became a mom and my only job was to love my son unconditionally and now he is gone. Neither time, money, relationships, or even more children will ever fill the void that now exists. There are no diapers to change, no boo-boos to kiss, and no bedtime baths to give. In exchange for the earthly experiences of motherhood, I grieve.
In the beginning, I was ashamed and frustrated with my grief because I felt I was supposed to be “moving on” and I hadn’t yet. I wanted to be healed and “move beyond” my grief, as if his death was something that I could push away to never revisit again. On my grief journey, I have learned that the love of a parent for a child does not end because of death, it transforms. It adapts to the absence of physical connection and manifests itself in grief. I now realize that I was grieving because I loved. In fact, to grieve is to love or as a friend so beautifully stated, grief is love. Experienced individually and uniquely, grief is beautiful, heartbreaking, and unconditional. Just like I loved my child when he was here, I grieve for my child in his death. I cry happy and sad tears at the memory of his smile. I lash out in anger at God when I witness a mother happily playing with her carefree child. I talk about Kellen and say his name with pride when I share his story. I dream about what kind of toddler he would have been, the type of letters that would get sent home from his daycare. I long for his scent and the feel of his tiny fingers closing around mine. I imagine his voice and what cartoons he would like. I visit his grave and talk to him on my car rides home from work. In every way, I miss him beyond words and like the physical love I had for him here on earth, I will always grieve for him because grief is love, too.