James

Queensland, July 2010

James (Jimmy) Dylan Irwin was born on 2 July 2010. He was our first baby and everything was going so well, I was starting to think having kids was almost easy. I had had a brilliant pregnancy and a trouble free birth.

James was born 5 pound 14 ounces, 49cm long and with a head circumference of 31 cm. It was almost straight away that we noticed he had a very little cry and we just thought he was adorable.

24 hours after the birth, things were rolling on well. I thought I had a beautiful, calm baby as he didn’t cry much. I remember saying to one of my closest friends that he sounded so cute, just like a little kitten. That conversation would play over in my mind some days later but at that stage we were blissfully ignorant.

24 hours rolled into 48 hours and James wasn’t breastfeeding properly despite many attempts in a variety of positions. His lack of feeding was blamed on swallowing meconium during the birth, so he had his stomach pumped and I was told that he should feed well soon. But he didn’t. Then a nurse told me that he wasn’t feeding because he had been “overhandled” by all of his adoring visitors. By this stage sleep deprivation was setting in, my anxiety growing and my confidence dropping – how could it all be this hard?

48 hours became 72 and the paediatrician visited, telling us with a sense of urgency that James would need to be admitted to Special Care and tube fed as he had lost nearly a pound. I was devastated. I remember asking what was wrong with him but being reassured he was fine. I was told that they would run a set of standard tests just to be sure.

Next to the other babies in Special Care I realised how different James looked. We had been jokingly calling him Eskimo Jim because with his little woollen hat on, he looked like an Eskimo baby. I now know that was because of the extra skin folds on his eyelids. And even in those early days, I was very aware that he was the only full term baby in Special Care who had not had a traumatic birth. But I kept pushing those worries aside, telling myself he was just little. I remember crying when I left hospital without James (he was still in the nursery) thinking there could be nothing worse for a first time mum than having to go home without their baby.

Tube feeding and bottle feeding went well and we took James home a couple of days later, still not breast feeding well, but trying and improving. Things were going well at home and I had just started relaxing about the whole experience, when on the morning of the 12 July I thought to myself, I wonder if I should call up about those test results? I dismissed the thought, thinking the hospital would have called if there was anything wrong.

A few hours later I received a phone call from the hospital that we would have to come for an urgent appointment, James has Cri du Chat Syndrome. I could write pages on the devastation of that day but it would still not articulate the shear heartbreak we felt. We had never heard of the syndrome and it was just presented so bleakly. Phrases that are etched on our minds forever are “moderately to severely retarded”, “won’t walk until he’s older and maybe never properly”, “probably won’t talk”, and “facial dysmorphism”.

I remember my husband trying to be strong for both of us and desperately grasping for anything to give us hope – he used the analogy of a girl with Down Syndrome that we knew, who worked and lived independently. I remember the doctor saying, “Listen, she sounds like a high functioning Down Syndrome child. James will not be as functioning as even the lowest functioning Down Syndrome child”. And just in case she wasn’t clear enough, she elaborated with, “For example, he will never be able to operate his own bank account”. It took us days to bring ourselves to read the print outs we had been given and over a week before we could look at this website. I was so worried about what “facial dysmorphism” looked like.

I remember feeling so overwhelmed in those first few weeks, there were split seconds where I lost my breath. I also felt like such a failure. I knew that was ridiculous but I couldn’t help feeling that way. One of my biggest worries, the thing that made me feel physically sick, was what would I do when James was an adult? When he wasn’t cute and the world wouldn’t love him? What if we died? What would happen to him? Could our marriage survive this? It was almost too much to bear.

I was an absolute nervous wreck and I don’t think I slept for more than 2 hours at a time for those first six months. When I did nod off, I would dream of the little boy I had imagined I was having – often of a little boy skipping down the road after school saying, “Hi mum, how was your day?” – I would then wake up and cry because I knew that little boy didn’t exist.

I was so frustrated by our inability to “fix” this. Both Rob and I have always made our own path – If we were poor, we worked harder; if we didn’t like something, we changed it. But this just had to be accepted. I felt so frustrated, trapped by nature. There were times in those early days when I felt like a worn, broken 100 year old person in a 28 year old body.

I remember being amazed that the human eye could continually cry so many tears, just streaming for hours – while cooking, cleaning, driving… And something about telling a person for the first time about James was so difficult, I would just breakdown and feel even worse about myself.

I wanted to share some of our experiences because I never want any parent to feel as lost and hopeless as we felt on 12 July 2010. At the time I truly wondered if I would ever properly laugh again. I remember going to dinners with friends and just switching off from the conversation feeling an overwhelming urge to cry and then I would click back on, with no-one noticing that I had just completely disengaged with life for a few seconds.

Only 1 year on, we can’t believe how sad we were in those early days and how we don’t feel like that anymore. We feel very grateful for this Support Group and especially the other parents such as Sonia and Dave (Cameron’s parents), Jo (Harvey’s mum) and Hannah and Matt (Claire’s parents) for making us feel that we’re not alone and for sharing their experiences and advice.

I always thought that parents of special needs children said they were a “blessing” because they had to give some meaning to the hard card that they had been dealt. But now that we have our little boy, we really do understand what it means to appreciate the small things in life, as partners to love each other more and not sweat the small stuff. Maybe all parents are biased, but we really do feel that we have such a beautiful little person in our lives who despite all his apparent “limits” has brought us more smiles and laughs than we could have imagined. And those milestones are just so joyous when they come.

In one short year, James has already achieved so much more than was expected. Despite all odds he managed to breast feed for 6 months, he has learnt a number of signs such as more, bottle, dog, finished etc. and understands so many more things. He says “mamamama” when he is sad, commando crawls, claps, pushes himself to sit and just in the last week or so he has pulled himself up a couple of times to standing on furniture – though it is very wobbly and he seems a long way off walking yet. However most importantly he smiles all the time, has a great sense of humour and just loves us to bits. Yes, he can be difficult and fussy to feed, has been a wakeful baby, seems to have constant colds and when teething is an absolute misery, but he also is very charming and loving, determined and gutsy and just a dear little mate to have by our sides.

If we get the inevitable twinge of sadness – usually when we hear about or see other children at the same age and how they are developing – we always push it away, because we never want James to think that his little life has brought us sadness or disappointment. That would make us feel worse than the diagnosis itself. He was never going to be anyone other than the person he is and I have learnt now that our job as parents is to bring out his best. And in doing so, we are finding he is bringing out our best.

If anyone would like to contact me I would be more than happy to have a chat, those early months can be very lonely and frightening. While we are early in our journey, it certainly isn’t feeling like the end of the world anymore.