Unprepared

On 31^st March 2016 I gave birth to my beautiful son via C-Section at 1.86kg at 7:42a.m.  He had stopped growing in utero and was delivered at 36 weeks.  Perfectly formed, with thick dark hair, and oh so tiny.  He could breathe.  Whew.  They placed him on my chest for a matter of minutes and then took him to the Neonatal ICU (NICU).  I knew this would happen. I had been prepared, but I was not prepared.  I was not prepared to go to my room alone and see the empty cot next to the bed; to have to wait more than 24 hours to see my baby (let alone hold him); for the pain and struggle of expressing colostrum (liquid gold) or breastmilk; for my husband to have to sign consent for our son to receive donor breast milk; for none of our family or friends to be able to meet or hold our son.  The doctors and nurses had prepared me.  I was not even close to prepared.  And that was just day 1.

Looking back now, I realise that I was not prepared because I could not process the information I was being given – that my baby wasn’t growing; that he would be delivered prematurely; that he would be underweight and undernourished; that he would not be coming home with us when we left the hospital; that I would not have the opportunity to consider a natural delivery or to breastfeed my baby as soon as they latched; that his loving grandparents would all have to wait to hold him.  I still packed his clothes and blankets and took them to the hospital; I still notified friends who were allowed to visit; I still made sure that the room and car-seat were ready to go.  Something in my heart prevented by brain from making sense of any of this information.  I heard it, understood it and still acted to the contrary.  The day we left the hospital without him, I could not speak.  I did not have the words for how I felt.  We drove home in silence.  I showered and went to his room to unpack all the unworn clothes and unused blankets that had travelled to the hospital and back untouched.  I knew we would leave and he would stay.  What I didn’t know was that my heart would stay too and that my body would go home feeling empty, even more empty than before he was conceived.

For the 10 days he was in NICU and High Care, we received a lot of medical information every day.  After 2 days I stopped taking the hospital-issued pain killers because I felt like I couldn’t remember anything after it had been said.  In retrospect, I don’t think it had anything to do with the drugs.  It was that same inability to process that he’d been seen by a paediatric cardiologist (because of a low heart rate); that he’d been seen by a speech therapist to check his sucking reflex; that he was placed on a bili-bed for jaundice; that the cryogenics company had been unable to retrieve sufficient cord-blood due to the low birth weight and “placental insufficiencies”.

This ‘brain block’ happened to me again when, at age 2, my beautiful boy was diagnosed with a range of developmental delays and issues.  I knew something was wrong, I am a speech therapist for G-d’s sake, but I could not process it.  I could not process it, because I could not acknowledge it.  I could see he wasn’t speaking, but he understood everything and his gross motor skills outshone those of his peers.  He could walk, climb, jump and was seemingly fearless (a symptom of other issues, as I would later come to understand).  He had no words and could not blow out his birthday candles, but I told myself he was a boy (boys often reach milestones later than girls).  I told myself it would come.  So, I started him at playschool and buried my head in the sand.  He was absolutely fine, until he wasn’t.  Until his panic and crying became so severe that the school called me in and explained that it was more harmful to keep sending him than to keep him at home; that his gasping for breath was so distressing and they didn’t know how to comfort him.  The head of the school also suggested an Occupational Therapy assessment and gave me some names – she felt that his sensory system wasn’t coping with the intensity and range of input he was receiving within the school environment.  Then the Occupational Therapist suggested a Speech Therapy assessment “just to be thorough”, as she felt that he had motor planning difficulties that could be present in other areas too.

I will never forget the speech therapy assessment.  There I was, sitting in the practice of one of my former lecturers with my husband and son.  She was asking me questions from a questionnaire and I could hear myself answering her, could hear what I was saying: “No, he didn’t babble normally”; “No, he didn’t ever say those sounds”.  I held it together long enough to make it to the door of my car, where I broke down and sobbed.  How could I not have seen, not have known, not have realised?  Me, a trained speech therapist with almost 20 years under my belt.  Me, his mother.  I had failed him and it felt like someone had punched me in the gut – a gut that clearly was not telling me what it should have been!

The interesting thing about processing information, is that there is no timeline for how long it should take, nor for how long it takes to process different types of information.  Different types of memory are stored in different parts of the brain – for example, factual memories and emotional memories are not stored together, but separately in different structures.  Is the same true for how we process facts versus emotions?  I feel like I am only truly processing certain elements of my son’s birth and trajectory now, years later.  But why?  I remember the NICU counsellor introducing herself to us and offering her services. At the time, I couldn’t have thought of anything I needed less than to engage in counselling for myself.  Big mistake.  I was discussing this with another NICU veteran mom who agreed that we come out with some form of PTSD that we don’t acknowledge or discuss unless / until faced with the prospect of having a repeat experience.  Almost 5 years later, I find myself at a crux of decision making about having another child.  A junction that has forced my mind to travel back and (re)process the first journey in order to truly understand whether I feel able to possibly travel the same path again.