I’ve always been an extremely over protective mother. The type who conducts a silent risk assessment for all the activities my children do and has ruled out a good deal of the parks in our local area because they are deemed unsafe in one way or the other. One of my biggest fears is that one of my precious babes will sustain a serious head injury. The thought of this happening to one of my children has always sent shivers down my spine.
Then one morning, I woke up to a perfectly normal life and, by the end of that day, I found myself living my worst night-mare.
Six months before, I had fallen very unexpectedly pregnant with our fifth child. On this day, three months before his due date, my placenta abrupted and waters broke with no notice. My baby was born extremely premature at 26 weeks, 6 days gestation and in really bad condition. On the fourth day of his life a neontologist and social worker walked in my hospital room and delivered the devastating news to my husband and I that our tiny 1 kg baby boy had an extensive grade four bilateral brain bleed – the worst brain injury a newborn baby can have. We were told to expect the worse – possible death, shunts to drain fluid from his brain, almost definite intellectual disability, and a high possibility of Cerebral Palsy and physical disability.
Over the coming months I grieved. I grieved for the opportunities in life that my baby might never have. I grieved for the dreams I had for our future as a family, and for us as a couple, that had most likely been lost. I grieved for the freedoms I had begun to experience as my other four children had been moving past the demanding early childhood years that were suddenly gone. I grieved as I looked into a future that appeared far more uncertain and difficult than it ever had before.
Yet it was in those months of heartache, as I sat by my tiny baby’s hospital bed and watched him grow, that I learnt some things that twelve years of motherhood had not yet taught me. As I gazed into a humidicrib, I saw a tiny baby who I barely knew, who had not been a part of my plans, and who was so unwell and “broken”. Yet I felt immeasurable love for him. It was in many ways a love that was different than I had ever felt before. I realised that I loved him not because of what he could give me, because in that moment he had very little to offer either in the present or, potentially, even in the future. He was not able to respond to me in any way. He could barely breath, requiring machines to do this for him. His eyes were fused shut so he could not even look at me. When I was finally able to hold him on his eleventh day of life he simply lay and slept. Yet despite his inability to show me any evidence that he loved me in return, and without the reassurance that he one day would, I loved him deeply, more than words can explain.
As he has continued to grow this year I have sat by his hospital bed for 102 days in total. There have been many excruciatingly painful moments as I have watched him fight for life and health. Loving him has required me to make sacrifices that were never required for my other four healthy babies. As I have walked through this journey of prematurity I have experienced a depth of grief, trauma and pain greater than I have ever known before as I have watched my baby endure so many ventilators, needles, IVs, blood transfusions, surgeries, brain scans, x-rays, nose-prongs, tapes, tests, tubes and wires. In seeking to be present as much as possible and meet his needs I have experienced tiredness and exhaustion beyond what I have ever felt.
Yet, I can honestly say that if I were given the opportunity to change all that has happened, I wouldn’t. I wouldn’t because the love I feel for this little baby boy is greater than I could have ever imagined. I wouldn’t because knowing this love makes life richer and more meaningful than ever before. I wouldn’t because as I have let go of the dreams I had for myself and my baby, I have experienced a peace and a surrender in my life and parenting that I have never known before.
It turns out that we were one of the very few lucky parents who would receive news after 8 weeks of awful brain scans that our baby was likely to do better than expected. The brain bleed had resolved unusually well and the grey matter had not been destroyed in the way that it does 99.9% of the time. We and the many that had prayed for our little boy celebrated this news. However, soon after this I would discover that our baby had other serious health conditions that would again put his ability to survive and thrive in jeopardy. As I have walked further along this path I continue to learn what it is to love our “special needs” baby fully and unconditionally, regardless of the circumstances and prognosis. This tiny little baby boy continues to teach me many things about love that I never would have known if he had never existed or been born well.
Former Field Leader and MOPS Wynnum Coordinator.
Here are some more photos of Ezra’s journey.