Miracle Boy

Six years ago. It feels like yesterday. A flood of amniotic fluid on a chilly July morning in Johannesburg office block and a panicked rush back to my gynae in Pretoria, my wonderful husband as calm and solid as I needed him to be.  A short two hour labour and our precious first born child came into the world, two months early and fighting for his life. He was unexpected and unplanned but so very much wanted. As I lay in a drug born haze, he fought for his life that first night. He stopped breathing a number of times and was connected to so many wires and drips and pipes you could hardly see his tiny little body, covered in a fine down.

 In and out of lights to fight jaundice, intravenously fed with penicillin to fight a raging infection, my boy fought. I saw his face for the first time two days after he was born, I held him for the first time a week after his birth, so scared I would hurt him. His skin was too sensitive to touch so I could not even stroke him to comfort him. I wept with him as yet another drip was inserted and his wide blue eyes looked at me as if to ask why I was not keeping him safe. My body and mind were so stressed that I did not have milk to feed him and they had to resort to supplements a week after his birth.

And still he fought. Two weeks after his birth they moved him to an open incubator. Still on oxygen and fed by a naso-gastric tube he was slowly winning the battle to survive. No more intravenous drips meant I could hold him without fear of him bleeding to death if one of the drips came out. His first bath, where he screamed so loudly in indignation that the matron and number of other nurses came to see what was wrong. We survived that. 

 We survived he first night home, where he screamed incessantly from hunger and I cried hysterically from fear. We took him back to the hospital, his brilliant paediatrician put him on formula feeds full time and he started to thrive.

We survived his first day at his day mom and me going back to a job I increasingly hated. He grew, far behind with his milestones and yet he met them one by one. Slow to go on solids, slow to sit, crawl, walk, talk and yet he reached each of the milestones, not according to the books but in his own time. Slow to have all his vaccinations so that at one time I was taking two babies at once to be vaccinated.

We survived our unplanned pregnancy with his sister when he was only 9 months old. Sick as a dog, weeping constantly from hormones and trying to juggle work, a prem baby and an unplanned pregnancy all became too much. I resigned and stayed home full time just after he turned two.

We survived his third degree burns from a cup of boiling tea, me weeping with him as they changed bandages and tended huge blisters covering his arm from shoulder to wrist. We survived day his undiagnosed concussion from having fallen and hit his head twice on one day against two different pieces of furniture and the subsequent trip to have his head x-rayed with a suspected fractured skull nearly a week later. I remember him screaming hysterically for mommy from the x-ray room and me weeping outside as I was 5 months pregnant and could not go in to hold him.

We survived bringing Mia home when he was 17 months old, not knowing why mommy had left him alone and then come home with a “kitty”. He insisted she was a cat and very lovingly stroked her shock of red hair, saying kitty over and over. Trying to crawl into her bassinet to see what she was doing. Sitting in the car seat with me holding his bottle and trying to breastfeed at the same time. Double nap times, double nappy changes, double bottles and endless trips to the paediatrician for check-ups until he reached the age of two.

Two little bodies, one blonde and one red head, refusing to go anywhere or do anything without the other, more like twins than brother and sister separated in age by 17 months.

We have survived endless hours of occupational therapy, eye tests speech therapy and countless questionnaires. We have survived many tears cried into each other’s arms late at night as it became clear that Noah had a learning difficulty and we would need to get him into an LSEN ( learners with special educational needs ) school.  Wrestled with the why and the why not. Worked through the guilt that only a mother can feel. Worked through the endless questions and raised eyebrows of family, friends and strangers and we struggles to come to terms with a child who would not follow or conform to society’s standards of normal. Learnt the hard way that my son needs structure and stability to function and feel secure. That he still needs years of therapy and medication to help him learn. Battle with him as he struggles to control his temper and emotions, to articulate his feelings, his thoughts and ideas.

His first glasses, his Ritalin for ADD, his new school where for the first time in 4 years he has been separated from his beloved baby sister. His fear of the new class, new teacher and new friends. His grief over the separation from his best friend. He has met and conquered each of these challenges with his innate Noahness and fight for life .

We celebrated his first full bottle feed, his last all clear check up, his first tottering steps at 18 months.

The first time he sat up unaided on his first birthday. His first words -“light on”. The first day he no longer clung to my leg when I had to leave him at school. The joy at his first report his year which said he had greatly improved and his teacher was proud of him. The delight on his face when he saw the sea for the first time and felt a wave break against his foot. The first time he recognised his name.

We still have a long road ahead, this beautiful, emotional, headstrong, sensitive son of mine. He is God’s blessing to our family and a miracle we never expected. As we celebrate the last six years that have flown by, I continue to ask for wisdom and guidance to know what is best for Noah as we journey a very unknown and often rocky road. There is no manual or map for a parent, particularly if your child is a bit different. I have had to grow a thick skin and become a lot more assertive to protect my child. As he grows, so do I. I sometimes wonder who the adult is and who the child is as he has taught me so much. I look forward to what God plans for his life and pray that he, like his namesake, would be used as a blessing to others.

As we blow out six birthday candles, do a complicated Lego together and watch him climb to the highest slide on the playground and fling himself down, I realise once again that it his God given ability to fight for life that will stand him in good stead to meet all the challenges that life will throw at him.