I've been reading some incredible books lately, including two written by parents of children with special needs. They are so much more helpful than the tripe my therapist lent me, and they've inspired me to write my own testimony.
So, here it is. The first draft of my testimony to what being a parent to Little O is really like, right from the very beginning. This may take some time, so buckle in...
My Pookie Bear
My husband and I decided to try for a baby in the late summer of 2008. A naturally realistic person, I was concerned that conceiving a child would be very difficult, and prepared myself for several months of waiting and frustration. My son, however, had other plans.
We found out I was pregnant in September 2008 and immediately visited the ob/gyn to get started on the merry-go-round that is pre- and post-natal care in the USA. I read up on the subject of pregnancy as much as I could, researching all the things I should and should not be doing, and generally becoming very excited and proud. At about eight weeks gestation I began to have hyperemesis gravidarum, which meant my work schedule and household chores became a daily battle against nausea, vomiting, and keeping anything other than water down. I was eventually prescribed medication for my extreme sickness and things began to look up in early 2009, when my husband and I excitedly went to the L&D ward at the hospital for my 20-week scan.
It was at this scan that we were first introduced to the notion that all was not well with our baby. A neonatologist trained in sonography scanned my belly and announced two things: 1) that we were having a boy; and 2) there was a possibility our son had a heart defect. To be honest, I was still reeling from the shock of being told my baby's sex - I was absolutely convinced we were expecting a girl, and I remember my stomach dropping just a smidge when a tiny set of genitalia was pointed out on the monitor. I was still shaking my head in disbelief, therefore, when the doctor told us he was referring us to a foetal cardiologist for further tests. I came away from the hopital absolutely numb. I had to get back to work, so my husband and I talked on the phone as we drove our separate ways, and I remember being so confused and so upset that I took a wrong turn and ended up at Milwaukee General Mitchell Airport. Frustrated at the lack of accurate signposts and terrified at the thought of losing my baby, I had to stop the car to sob hot, angry tears. Looking back, the feeling of utter helplessness and lack of specific knowledge about my son's condition was actually excellent preparation for that confusing period of time following his birth.
When we visited the foetal cardiologist (which we did, twice), she assured us after lengthy scans and pokes at my baby that all was in fact well. She saw no evidence of a heart defect, and thought that the first doctor must have seen a shadow, or a rapidly-moving baby too fast to guarantee a clear picture. Still, despite her reassurances, I continued in my pregnancy to feel as though all was not right. My mother had experienced peaceful, trouble-free pregnancies with her first two children, and then an astonishingly distressing one with her third. And that third baby ended up having such serious disabilities that to this day, at the age of 22, my younger sister requires 24-hour supervision. I was fearful that this pregnancy would have a similar outcome, but to the world and to my husband, I just put on a brave face and knuckled down to the job of waddling about with a beachball attached to my stomach.
At six months, I was made redundant from my job. It was a Thursday. I looked my employer straight in the eye and walked out of that building with my head held high. The next day we signed contracts, closed on our new house, and moved in to our baby's first home. On the Monday, I sat on my couch and filed for unemployment benefits, then continued working on the manuscript for my second book, Baby Names 2010. After all the stress of the previous week, I was content to just sit and relax and maybe take a nap or two. A few weeks later, my Da died. I was too heavily pregnant to fly home to the UK for the funeral, so I mourned the loss of my baby's Great Grandfather from afar, writing a dedication to him and including it in the service sheet. Eleven days after his death, I went into premature labour.
Labour is a funny thing. At 35 weeks I wasn't expecting it, although I knew the signs to look for. The weekend before, I had stood in my baby's new nursery and yelled at my husband for not working quickly enough to get the room ready. At the time he laughed at me and called me mental, but now we look back and realise I was 'nesting' - my body knew the baby was coming but I had no idea. On May 14th, 2009, I was at home and working on the computer when I felt hip and back pain. Assuming it was just pregnancy aches, I attempted some exercises on the floor to encourage the baby to move about, and then spoke with a friend online. She warned me that I might be in labour, so I called the doctor and sure enough...
Over the next 55 hours I worked harder than I've ever worked before. I was not a strong or courageous woman in labour until the last hour, when I became incredibly focused and determined, and pushed my tiny son into the world in 45 minutes. He was born at 5.12pm on Sunday, 17th May 2009. When I remember the feeling it brings tears to my eyes. I was just so relieved he was here. I didn't care that he was early, or that I was bleeding on to the bed. I didn't care that I was experiencing a life-changing moment: I was just so glad he was here.
But if I am to be totally honest, then I have to be brutal. And blunt.
When Owen was born, I was not surprised that he didn't breathe. I was not surprised that he was pale, and floppy, and had a massive bruise covering most of his scalp. I was not surprised that they rushed him to the bed warmer and stimulated him to cry. I was not surprised when they announced he had inguinal hernias, blood in the meconium, or an ear tag. I was not surprised that he didn't open his eyes, or that I wasn't allowed to hold him until they had worked him over.
I was not surprised, because I knew already. I just knew. I knew something was wrong at that 20-week scan, and I knew something was wrong when I compared my pregnancy sickness with my mother's. I knew something was wrong when I went into premature labour. It's hard to describe, but I just knew. I listened when people told me everything would be alright, but I didn't really take it in. I listened when my sister told me of her own pregnancy sickness and how her own scans had been normal, but I didn't really take it in then either. I just knew something would go wrong, because I had been preparing myself for so long for the worst.
But you know what? When I was finally allowed to hold Owen, I cried and cried and cried. I cried, not because of all his 'wrongs', but because of all his 'rights'. He was astoundingly beautiful. He was pale, with creamy skin just like his Mama and two tiny rosy cheeks that bloomed across his face when he cried. He had the smallest and pointiest chin I've ever seen on a baby, and it is still my favourite part of him. That tiny little chin was so cute and perfect and smooth, and I would run my finger along it over and over again to feel the sharp little curve. He had small and slender lips, and tiny starfish hands, and curly toes that we would later identify as coming from his father's genes. His wrist was the size of my thumb and he had no hair at all. In fact, his head was so round and smooth and white that the nurses all told me he was nicknamed 'Cueball' in the nursery.
In short, he was gorgeous. Like any newborn baby's mother I thought he was stunning, but another, more rational part of me also thinks so. He was just a lovely looking baby. Perfect and tiny at only 19" long and 5lb 14oz, but strong and breathing by himself. I decided there and then that he was a superstar, and the first book we read to him was called Baby Brains Superstar, because the baby looked just like him.
More to come...