Life beyond bed No. 8

On January 9 our son Robert went to join our Lord Jesus in Heaven after a 13-year-long challenging existence.

Robert was born a healthy beautiful baby and was our second joy, following Christian's birth some six years earlier. Alas, at just one week old, Robert contracted meningitis, which almost took away his tender life...

Yet, Robert was a survivor. Actually, he was more than that. He was a winner. He fought for his life and, seeing in him his will to live, inspired both my husband Freddie and me to do the same. We made a solemn promise to Robert that, from that moment on, we would do all we could to fight for his right to life.

The illness left him with a disability. Yet, we went against all odds and doctors' suggestions and interpretations. With God's grace, we managed to help him live for 13 more years.

Even when the ITU became his home, and, indeed, our second home, we willingly endured all that encompassed. We saw people coming in and out of there, people dying all the time, some getting better. The sound of those beeps going on and off rhythmically. The frenzy of an emergency. The tears of loved ones saying goodbye. These things became our daily routine too. It was not easy.

Sometimes I wonder how the nurses actually do it! They truly need to be dedicated, one would think. Thanking those nursing officers, nurses, nursing aids and cleaners who truly believed in Robert's right to life is not enough. What some of these individuals helped us to achieve was going against the grain in many ways. They are the special ones whom we now can call friends, the ones we know made an extra effort to try to get to know Robert and grew to love him too.

We found some opposition, of course, from those who believed that what they were doing was in vain. They would have probably behaved differently had it been their own son.

Who knows? Their philosophy permeated in their attitude towards Robert and we could not but feel it in the way they dealt with us. Little did they know that the peace of mind my husband and I can feel now that he's no longer with us is only because we truly know we did everything under the sun and in our power to try to give Robert the very best; we researched all possible avenues, in spite of their beliefs.

Robert was in ITU for six long years and, due to his need of a respirator at all times, going out was very difficult, indeed practically impossible. It took the busiest consultant in ITU, the hardest working man we have come across, to make that extra special effort to help us take Robert out in the sunshine and fresh air once in a while in an ambulance.

It was the most beautiful gift the consultant could give Robert when he would somehow find the time and come with us, actually physically come with us on a Sunday and finally take Robert out together with a wonderful technician who was also always outstanding in his attitude towards Robert and always prompt to get everything done in time to assist my son in everything he needed, including to go out in spite of all the difficulties this entailed. Now that's true solidarity!

Indeed, to us it meant the world to see that there are people who know what disabled people truly need, what their families need to feel. The said consultant's constant attention was more than remarkable - it was unique. He truly believed in Robert' s right to a quality of life; he understood that although Robert was disabled, he had a right to fight for his life and for the very best care possible. We tried to ensure that that's what we expected and he understood... fully.

Sometimes people, including professionals, may feel that making a donation towards charity once a year fulfils their duty towards disabled people, but, in reality, what disabled people need is to be regarded with the same dignity and have their right to life respected as anybody else... not to be given less of a chance because they are disabled!

In the medical sphere, disabled people are not always given the same opportunities to certain interventions purely because they are disabled. Preference is always given to a non-disabled person on a waiting list... forfeiting the chances of a better quality of life for the disabled individual based on the false pretext that the latter stands a better chance of fulfilling that quality of life. Can anyone really make that distinction? I don't think so!

What is needed is for families to feel supported in their journey with disability, like the consultant mentioned earlier indeed made us feel and so we are truly grateful to him in particular. There were others who understood and tried their utmost to provide Robert with their best attention promptly and willingly and who tried to support us emotionally and humanely. Most of the house doctors on duty were always there for Robert too.

What these people did with our son is much more valuable than nice words or empty promises. It was much more valuable and appreciated than one could ever express. What they provided us with is that much needed hands-on support, the assistance to endure and, indeed, overcome all obstacles, big or small, with the Lord's help.

Over the years we saw changes in some doctors' attitudes. They grew to value the life of disabled people more. Others, however, did not.

Robert's paediatrician was more than supportive, right from the early years. He took a special interest in our son, he knew him inside out and followed him through thick and thin.

Even at the end, after he had retired, we still felt his support. How special.

Vital to Robert's well-being was the physiotherapy that he needed to have done diligently every day. The physiotherapists who came to him daily helped him maintain some form of movement and helped us avoid him getting any bedsores. Indeed, my husband and I had become very efficient at looking after our beloved son but everyone's contribution was vital and so appreciated by us even though it may not have seemed like it at times...

Our main and sole priority was the well-being of our son in a highly unusual setting, one where life was always touch and go, where there were so many uncertainties and fears.

We were living a nightmare we desperately wanted to turn into a dream... So we apologise to any of the staff in ITU if we ever came across too strongly.

We assure them it was unintentional. I hope those of them who understood our plight know that.

Now that bed No. 8 is bare, without the colourful soft toys decorating it, with no musical toys filling the air with gentle tunes that Robert loved so much, without those big blue eyes looking around the room peeking from under the bed sheets, we sincerely hope that bed No. 8 is no longer being skipped on certain ward rounds and that Robert's experience on this earth was not futile.

We hope he made an impact on the hearts of those who crossed his path and that such impact will benefit other disabled sick children in need of special hospital care.

Editorial note: Names of consultants, doctors, nurses and technicians have been removed to avoid problems with the Medical Council.