|July 19, 2011||Posted by peadar under Scríbhneoireacht / Writing||
Below is an article I wrote for the magazine of a voluntary organisation called Co-action. These people are a charity organisation based in West Cork who help people like us who have special needs children. We are always very grateful to them and help to hold a special fundraising event in the Mills Inn (Baile Mhuirne 00 353 26 45237) at the beginning of January every year. Ar mbuiochas leo uilig.
Well good reader, if you are perusing this article you are probably a member of that semi-secret society whose lives are completely bound up in the caring for somebody special. Special in both character and also in needs. Our lives are different to ordinary people’s in that our priorities are so different. It is a secret society in that, apart from the publicity at fund collecting times or media attentive seasons such as say, budget time, we exist in little cocoons divorced from the daily routine of more ordinary folk. Our attitude to hospitals is a little more jaundiced as a result of our familiarity with them. We are usually on first name terms with the more longer serving medical personnel in our county and we are the repositories of all kinds of weird information ranging from car models and the width of their doors or their height from the road, to what buildings in the county allow wheelchair access or which Government Departments are the fastest to respond to paperwork or what is the best thing to take to keep you awake after days of sleepless nights and so on. We know every specialist, expert, quack, witch doctor, alternative practitioner, faith healer, and others that are not even categorised. We are experts at all kinds of weird or wonderful diets. We know where to get unusual herbs or vegetables. We could stock a reasonable library with their requirements for books on therapies of all kinds. And we live a life where we daydream about a night’s uninterrupted sleep. The funny thing that I have found out is that on the rare occasions that I had the opportunity of such a wonderful luxury, I actually frittered the time away, not in a night of blissful deep sleep, but drinking and talking and socialising and staggering into the unused bed for the last hour or two before dawn. Does this mean a certain lack of sense being one of the requirements for this club of ours? I say this because I am not alone in this habit. But who would change it. I am sure that every one of us feel a deep blow if we receive the news that a member of this special club has been overwhelmed in the sea of grief as death sweeps heedlessly away the special person that had occupied the centre of their lives. We know what a battle it has been for that family, day after day, and the hole that is now left in their lives. We also feel dread as, for a lot of us, the same prospect is a strong possibility also.
My membership of this club began on the sixteenth of November 1989. My wife and I became the proud parents of twin boys Sean and Séamus after Geraldine went through a long and painful labour at full term. But Sean soon presented us with problems as he could not suckle or keep his milk down. Thus started a 12 year expedition through the hospitals of Ireland and London as well as every other possible source of help and cure. We still have no diagnosis. Whilst there seems to be no damage or non-working parts as it were, he still cannot control hand, act or part in anything. He cannot speak but has spoken clearly in sentences in his sleep. He cannot point or nod his head at will or even direct his eyes in such a way as to use that as a working means of communication. That he is very intelligent we have no doubt and those of us that live and work regularly with him can communicate with him. The book he found most interesting last summer was “Catcher in the Rye” ,not exactly the ordinary reading material of your average ten year old. We are convinced it is a metabolic problem with some specific protein. But then who listens to us, we are only parents.
There was a time when Sean would get up at the crack of dawn, head downstairs and switch on my computer and play away with it until it crashed and then he would return back upstairs to bed. He could feed himself and, even though he could not communicate with us verbally, nor was he in any way a ‘bit of an athlete’, he could get around. But then the epileptic fits started and he deteriorated until he was so weak he could not even hold up his head. His metabolism had major problems with the various drugs and the usual platelet and white cell counts kept us busy for the last seven years. You probably know the story yourself: the pneumonias, the crises, the mad dashes to hospitals, the rows, the worries and the constant drive to keep head “above water” and not neglect the rest of the family. The doctor who stands there dutifully doing their “ I am listening to you even if you are as mad as a hatter” as they stand there, hands folded, and that vacant stare on their faces that tells you they are miles away. I once even said a few sentences like “and then your trousers is on fire and the hair in your nose is turning pink...” and he did not notice until I stopped talking. Then there is the nurse that knows best. “I am the professional here and you are just the doting parent” syndrome. Funny thing I noticed about these people is that they are quite cruel or hard and must have had a tough or lonely life of their own. But then you meet some pure saints and angels. They are the oasis in a cruel tempest that sweeps in twisting turmoil around you as you try to assess the crises and your chances of getting through to the calmer oceans on the other side and of getting everyone home again back to the safety of daily routine.
But that routine can sometimes get on top of you. That is when you really value the Co-action lads and lassies. It is not just their skill but their understanding and also their lack of preciousness or over-care about language. Because there is nothing as uncomfortable sometimes as that well-meaning, over cautious person who is pretending that your son or daughter, sitting beside you is perfectly normal. A person who feels they might say the wrong thing. Or afraid to touch or even look in case they would hurt you or your child's feelings. They mean well but you would like to say “yes, look three heads, a hand and five legs, now, you were going to tell me about that night out?” And that is the joy in the company of Co-action staff. No preciousness. Don't get me wrong, we all have good neighbours and are grateful to them. Indeed, Co-action has very good friends in every parish in West Cork, but “an rud a théann i bhfaid, téann sé i bhfuaire” as we say in Irish (That which goes long, gets cold) and after years of constant demand, people are bound to grow weary and you find yourself left to your own devises more often. That is really the time you value the Co-action gang.
Still, while none of us chose membership of this special club, there are very few of us who would willingly drop out. And to Co-action, I for one, would like to say “Thank you”.
I wish you fellow members of this special club -the parents of special children, a happy year and remember that light at the end of the tunnel? It is not always an oncoming train!
Take care of yourselves.
Gach rath oraibh uilig
Peadar Ó Riada