Every Cloud….

When Fraboo (now 5), arrived it was a relatively normal birth, and so when the time came for our second to come, we weren’t expecting any dramas. As things turned out though, our son kind of got stuck. Although the Doctors assured me it wasn’t the case, I still harbour suspicions that he had inherited the enormous sized head which has plagued my siblings and I, and this had a large part to play in his predicament. My wife was absolutely exhausted and the decision was made for him to be delivered by emergency caesarean. Whilst it wasn’t really the start we would have liked, all’s well that ends well. Mum and baby were both fine and really, that’s all that matters. During the time that they were in the hospital, a hearing test was done, and unfortunately our newborn failed it. My wife was assured that it wasn’t unusual after a caesar, and that we should have him retested over the next few days. For a number of reasons, Mrs L. decided that she’d had enough of being in hospital and so I bought her home without the hearing test being done.

As the months went by, it seemed that Boy-Boy’s hearing was quite normal, he would be startled when a door banged shut in the breeze or, as often happens, I dropped a saucepan.  But when he was about a year old my wife and I noticed that he didn’t seem to be responding to us in the same way as our daughter had at a similar age. He wouldn’t turn to look at us when we called his name and he had developed the peculiar habit of shouting really, really loudly and seemed to especially enjoy doing it when standing at the mirror and looking at himself.  This behaviour scared almost all of his little friends and so visits dried up from them and their parents.

“Oh well,” we thought, “boys do develop a later than girls.” We talked about it with our friends who assured us that it was probably a phase he was going through, but in the back of our minds we weren’t convinced, and so took him along to our GP. We insisted that he should be seen by an audiologist and were duly put on a waiting list. The first appointment came through pretty quickly (within a month) and we took him along to the hospital. As luck would have it the appointment time was scheduled when he would usually have a nap, and being rudely awoken and having a pair of earphones put on him didn’t go down well. This, combined with the fact that he had a cold didn’t help much either. The only thing that could be said with any degree of certainty was that there wasn’t much wrong with his vocal chords and his tear ducts worked just fine.  So we were sent another appointment for a month later. Again, this appointment was something of a disaster. I’m not sure that Boy-Boy understood what was expected of him, and although I think he was trying his best he just couldn’t (or maybe wouldn’t) complete the tasks asked of him. To make matters worse I was getting extremely stressed, being in such close proximity to an obviously distressed and uncooperative child, and I’m fairly certain that the audiologists had had enough too. After what seemed an age, they decided that they weren’t going to be able to get any useable data from which to get a diagnosis. The audiologists spoke to us had and told us that given Boy-Boy’s volatile reaction to the tests the only way that they would really be able to get any accurate information was if they performed a similar test whilst he was anaesthetised. Given that there had been no improvement in him, we agreed that this would be the best course of action. The major downside of this course of action would be that there may be a wait for the staff and equipment to become available.

I would like to point out at this stage that almost all of the people we dealt with were brilliant, the audiologists especially so, and I have no axe to grind with any of them despite what it may sound like. They were doing, and continue to do the very best they can, with scant resources and I understand that. I work in healthcare myself and understand the difficult balancing acts one has to perform, trying to prioritise the very sick with the worried (and usually very vocal) well.

We waited for our appointment and we waited and we waited and still Boy-Boy didn’t appear to be hearing us. The best case scenario seemed to be that he had glue ear and that the build up of gunge was impeding his ability to listen, but we hadn’t noticed any symptoms, certainly he wasn’t in any discernible pain. All the while my wife and I were aware that he every day he was unable to communicate, the further behind he was going to get compared to his contemporaries. We tried calling the audiology department, but due to staff shortages they were unable to promise any sooner testing, so we considered having the test done privately.  When I discussed this with one of the audiologists they told me that the examination was very specialised and we would be relying on the same person to do it, as would do it in the public system, and the only thing that would really change would be the size of our mortgage!

I then began a war of attrition with the department, phoning them daily, more than once if I had the energy. And do you know what? Within a week we had been given a cancelled appointment for the following day. It is entirely possible that we may have been given this appointment anyway, but it certainly made me feel as though I had done as much as I could do to bring about an earlier appointment. And this is what I want to convey from this post. As a parent you have to champion your child. You are their only advocate, and no one else will fight for them, or if they do, it certainly won’t be with so much passion.

After a sleepless night worrying about the effects of a general anaesthetic on our boy’s little body, as well as the outcome of the test, we turned up at the hospital. I’m not sure whether we were supposed to be first on the list but our Boy-Boy was taken through first. This was a very distressing time, seeing him carted away from us, fearing for his welfare, but he was quite happy, and is often his way, didn’t seem to notice that we were missing. We were advised that the procedure would take about an hour, so we went for a walk. When we came back, he wasn’t out of the operating theatre, and for an awful half an hour we just twiddled our thumbs hoping for the best. Eventually, the audiologists called us through to their office and sat us down. They explained to us that although there was significant glue ear which was certainly contributing to his hearing loss, but he is hearing impaired, and would have to wear hearing aids. At the time it was a tremendous blow, and both Mrs L. and I were gutted. She cried, but as I’m sure many men do, I tried my very best to hold it together. Within a few short minutes we were being asked to choose hearing aid colours, which would arrive the following week. It all seemed to be happening very suddenly.

As promised, within a week he had been given his hearing aids, selected especially for him, and they had been programmed for his specific needs. We were also introduced to a hearing impaired advisor, who has been a tower of strength and incredible resource to us. Boy-Boy then started at a kindergarten which is aimed at children who are hearing impaired or come from families who have hearing impaired members. As part of his education, he sees a Speech Language Therapist weekly, and his progress has been astonishing. As a family we are endeavouring to learn some sign language to give us and our son, the opportunity to embrace both hearing and non hearing worlds. At some point in the future, he will have to make a decision as to which path he wants to take, and we want to prepare him as much as we can for that day.

But what a privileged position we now find ourselves in. Upon learning of Boy-Boy’s handicap, if it can even be called that, I felt a tremendous sadness for him. It was as though he was somehow broken, and in the wee small hours, when nobody else was watching, I wept for him. But he neither wants nor deserves my pity. It’s true that there are certain things he won’t be able to enjoy; hearing the subtle key changes in a piece of music, or listening to a dawn chorus. Equally though, he won’t have to endure the nauseating teen pop which is so prevalent these days, or have listen to my dreadful jokes.

Through him we’ve had the opportunity to meet people and a whole culture which we would, under normal circumstances, have never encountered. And what an incredible journey we‘ve been on with him. I am smart enough to realise that on the scale of disabilities, Boy-Boy is barely even deserving of a mention, but nevertheless, his life will be, in many ways more challenging than most of ours. My job as his parent, is simply to try to remove as many hurdles as stand in his way, and those I can’t get rid of, help him over. I will do this to the best of my ability for all of my children, but I suspect that for him, the obstacles maybe just that little bit bigger.

Finally, I remember there was a playground joke which I was once taunted with; “Hey Ross. You’re not different. You ‘re special.”  This was meant in the most unpleasant way possible. But Boy-Boy is different, he is special. He is my son!

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