In April 1994 I was happily 8 months pregnant with First Born. I was young and oblivious to the trials and tribulations that life could throw at me when suddenly at a routine check up, I was whisked off to the hospital for an emergency scan. The midwife was concerned about the size of my baby and thought hat he should be much bigger at this stage. She did not alert me to her concerns and made it sound all very normal and routine. Being my first baby, I thought this was all very normal.
At the hospital though, this state of oblivion was all very suddenly turned on its head. My first clue was the fact that this scan was already taking three times longer than all my previous scans, then there was the “Excuse me” and the return with another health care professional and talks in whispered voices. They then went away and came back with another and continued speaking in hushed tones. Suddenly the room started spinning as they told me that I was to deliver the baby early the very next morning, I was to return home and gather my belongings and come into the hospital at 6 a.m. the next morning.
I wasn’t ready. I had one more month to go and hadn’t gotten everything I needed yet. I didn’t understand. Neither did they it seemed. All they could tell me was that my baby was “small for dates” and they needed to get him out sooner rather than later.
I returned the following morning with my parents, my sisters in fast pursuit and the induction process began. It was all very fast, much faster than anyone anticipated. After a quick half an hour delivery, First Born came into the world. Only he was not screaming. He was quite non responsive and had to be taken away and resuscitated. He was so small and so frail and delicate and it was all spinning so very fast. I still could not understand what was so wrong that they had to deliver him early. They didn’t really know either.
Health care professionals were in and out constantly, monitoring him, poking him, prodding him, taking bloods. He was too small and weak to breast feed and much to my dismay, they put him on a bottle by the end of his first night. Something was wrong. I had no experience of newborn but my instinct just told me that something wasn’t right.
The following morning, a pediatrician came to see him and I still don’t know why, how or when I had come to this conclusion, but I said to her “My baby can’t see or hear me”. She laughed at me and told me I didn’t know what I was talking about. I still had no clue why I had said such a thing or how those words tumbled out of my mouth without thought. That’s the way of my mouth though. Often things fall out without me having thought twice. As offended as I was about her laughing at me, I relaxed in the knowledge that a doctor said he was fine and as a young mother I just had no experience of what was normal.
This was just the beginning though. Soon enough an eye specialist came by and did some checks. He was rushed and at the end of an all day shift and obviously perturbed by the fact that he had been called back in to the maternity ward just when he thought he was heading home. He announced brusquely that my son could not see and left as quickly as he came. It was late into the evening and I was confused. My family were all nearby. One or another of them. That same evening, a specialist pediatrician came to see him, my mother was present. A scan was done through his Fontanelle and he announced that First Born had scarring on his brain.
In asking for more information about what this meant, he told my mother and me that it meant that we should “just take him home and cuddle him, that’s all he would need”. The world stopped spinning again. In those few days, the world was always spinning too fast or had stopped altogether. Nothing was “normal” anymore. My mother and I deduced from the sugar coated way this doctor was trying to put things that my son had brain damage and would never be normal. In fact, that he would be like a vegetable. The question of his hearing was addressed a couple of weeks later and it was confirmed that he was in fact profoundly deaf as well.
That was eighteen years ago. I left the hospital with a very tiny baby having been told that he was deaf, blind and quite probably a vegetable. I was scared, anxious but fortunately not alone. I had a most loving and supportive family around me and I had the added benefit of having slipped into auto pilot. Our days were filled with one hospital appointment after another with various specialists. Sometimes two in one day in different hospitals. By the time First Born was 3 weeks old he was having his first surgery to try to restore his sight.
Over the coming months he had several surgeries on his eyes, contact lenses, patches and fortunately had some sight recovered in one of his eyes. He was fitted with hearing aids. Not the behind the ear types but a body worn aid that looked more like he was using an iPod. It was HUGE on his little body and had grotesque beige curly wires leading to horrible moulds in his ears.
A profound moment for me was walking down the street to the grocery store one day with im in his pram. All snug and sleepy with his hearing aids in. A woman coming towards me peeped in to have a look and the horrified expression that came across her face. She actually doubled back and went around my pram to have another look. She was clearly trying to figure out why I had outfitted my newborn with a music listening device! She never did ask though. She just stared. This changed my approach to all “different” people then. I never stare or look anymore. If I really need to know I walk right up and ask.
This was the beginning of a new chapter in my whole family’s’ lives. First Born was different. We were different and First Born was one of THREE people in the country with his condition. Congenital Rubella Syndrome. So our days were filled with nosey doctors and junior doctors or students coming to see him all the time. Lots of people from Local Authority departments were coming to see him. It was like I had given birth to Jesus with all of these visitors. However, none of them were really that useful.
My mother was a pillar of support. We could not actually get much practical help from any of them so she organised sign language classes so we could learn to communicate with him and ensured that steps were put into place so that he would get the education he needed. And sometime in his fourth year at his end of term play at school, we all went to see him. I remember I just cried and cried the whole way through. Everyone else was smiling and laughing at this Christmas play. All I could do was cry. There was my boy. It was like nothing was different about him at all. He sure was DIFFERENT to the prognosis I was given in the hospital when he was born though. He was up on a stage, signing furiously and enjoying his part in the play. He was a healthy, walking, signing and intelligent boy! He scored top of his class most times and I just couldn’t help but sit back and think of the early days. It wasn’t bright. Not like the bright spark that was lighting up that stage at that Christmas play!
Over the years he continued to thrive and prosper. He has always been in and out of hospital appointments for his eyes and ears and general check ups however there have never really been any Local Authority (Government) Agencies that have been able to deal with his deafblindness as a package. Very early on in his life we were made aware of a charity called SENSE who specialise in people with deafblindness. They have been a pillar of support and advice from the very start. And we never felt like we were alone.
First Born will be 18 in April. I have been racking my brains about what to get him. Eighteen year old these days don’t want the necklace or souvenir key. Noooo… they want so much more. Knowing my son as I know him, he probably wants a new computer especially built for his online gaming. That should only set me back a thousand pounds or so….. *FAINT* Or maybe he wants an iPad to complement his Mac Book. Or whatever else he wants, I guarantee, it doesn’t fall into the category of meaningful, sentimental or could be considered a keepsake. And it certainly doesn’t fall into the category of affordable either. So as part of his birthday present to him this year, I have decided to commemorate the eighteen years he has walked in his not so easy life with a not so easy task.
First Born has walked all these years, through all the trials that life has thrown at him with dignity, with pride and has taken every challenge head on. As hard as he may have found some of them, he made it look easy. Easier than I know most people would find it if they had their hearing AND sight ripped away from them. I am so very very proud of him. And so very grateful to my family, my friends and to SENSE the deafblind charity for walking this journey with him. But he will be eighteen soon. He will be starting to walk this path of life alone without his family soon and I rest assured knowing that SENSE will always be there for him. They will continue to offer him support and advice throughout his life even after we are all long gone.
So what better way to commemorate his birthday with doing a walk of my own. I have pledged to walk the London to Brighton 100km cross country walk across all terrain and through the night in aid of raising money for SENSE. Please help me to help them and click on the link and donate even just a dollar or a pound. Every little will help me to reach the huge target I have set.
This is a terrifying task for me. Terrifying that I have entered late and have just 55 days to meet the target I have set and also terrifying that I have committed to walking 100km. I can’t even remember when was the last time I walked as much as 2km at a time. I have never been in a marathon and I don’t exercise regularly. I can’t even repeat what my mother told me when I told her what I was doing….. in a nutshell all my friends and family think I am crazy… but you know what???? If First Born can walk the path that life has carved out for him for the last 18 years and keep doing it with a smile on his face then I can walk a crappy 100km through the night over a 24 hour period of hideous uncomfortableness….. and I pledge to try to do it with a smile on my face too.
If SENSE can offer the support and advice and help to all the deafblind people in the world that need it, and do it with a smile on their faces and with love, compassion and understanding in their heart… then I can do this too. Can you sponsor me to do this so we can keep this charity alive and keep a smile on my son’s face and the faces of many others like him? Click on the Virgin money giving logo to sponsor me.
Many Thanks for reading, for all of you who sponsor me and to my very dear friend for walking this walk with me! Hopefully we will still have legs at the end of it!!!!
Single Mother Stories