In 1973 my husband and I moved from NSW to Queensland. We had applied to adopt a baby in NSW so moving interstate meant we were placed at the very bottom of the list again!
Not to worry my wonderful friend Ros said. Ros was a missionary nun working at that time at a children’s hospital in Brisbane which specialised in caring for very I’ll children. These kids were either wards of the State, or whose families were unable to give them the 24/7 care that their medical conditions required.
She suggested that as an interim measure, she and I take some of the little ones who were able to get around down to the local park for some play time in the sunshine. No red tape, seat-belts, insurance dramas in those days, just some hours of lovely down time for these gorgeous little people. There was one little blonde boy who kept attracting my eye! He looked like a little angel!
On one of these visits, I asked my friend what the future held for this little Master X. She told me he had Cystic Fibrosis. I had never heard of this. His prognosis was a lifespan of perhaps 9, 10 or possibly 11-12 years, if he was lucky. She told me he would be moved from this particular hospital to possibly another and perhaps then to a children’s home.
Well, I thought, I really don’t want this gorgeous little boy to have that sort of future so I felt perhaps my husband and I could give him a loving home for the time that he did in fact have. After all, we agreed, we weren’t to know if we were both carriers of the CF gene and we could easily have had a child with CF so what was the difference?
Fast track 6 months or so. We formally applied to Master X’s mother (a lovely young lady by all accounts, single and regretfully not able to give her little boy the full time care he required at that time) and she agreed for us to become foster parents and then ,if all worked out well, we would adopt him.
I picked up our newly named little man, now to be known as Justin James Robert on a lovely sunny day and drove him with much excitement and a little nervousness to our home on the Gold Coast. His first words were ‘doggie’… at 22 months he knew no other words. He and our little ‘Pookie’ had immediately fallen in love with each other and that little dog allowed our little Justin to drag her (literally) around with him all day long – except when he had her in his little toy trolley!
Justin absolutely blossomed…. he put on weight, learnt very quickly to make himself understood(!) and became very confident and happy to be around both family and friends. His very sharp intelligence was obvious from a very early age. I could not believe how patient he was and accepting of all the physio I had to give him each day and of ALL those capsules he used to have to have before every single meal or snack.
As I’m sure you’ve heard many times before this, one adopts a child and then bingo, one becomes pregnant! Well in this case, it is true and when Justin was 4 years of age, we had the ‘miracle’ baby, a little brother for Justin and then 2 years after that, another little ‘miracle’ baby, another son. Those three little boys were such a delight to us and everyone used to comment on how alike they all were!
We had been warned that we may have had to hospitalise Justin on occasions should he become ill with infections etc. but I am very thrilled to say he was not hospitalised once in all the years until he was around 20 years of age! So much for his prognosis of 12 years life expectancy! I’ve often thought how terrible it would have been to have made a judgement on NOT adopting him on the assumption that the prognosis could have been correct.
Teenage Years and Beyond
When Justin was a around the age of 12, we moved to a large inland Queensland town. On the recommendation of our new GP I went to a Cystic Fibrosis support group meeting. There were actually quite a number of people there – lovely people and very dedicated to the cause. However, I felt during the whole evening that so much emphasis was being put on the disability side of the CF children. I felt during that evening that I was the odd one out because I had felt so strongly about Justin not feeling he needed to be very protected and being made to feel too ‘precious’ about his having Cystic Fibrosis.
Instead wanting him to be very confident of a strong future ahead for himself. Rightly or wrongly, I did not continue to go to these meetings but of course appreciated the fact they were there and I’m sure those good people would have been a great solace to us had we needed it.
I was absolutely determined that Justin NEVER EVER feel that he was different or that he should be treated in any way other than as a relatively healthy human being. We very rarely spoke of CF in our home and his brothers never gave him any concessions (none that I was aware of anyway) in play or other aspects of their lives. We just got on with the everyday medication, physio when required, and generally led a fairly normal family life. Justin did go through a period of rebellion – who could ever deny that this would have been a very natural thing for a young man of 13 – 15 years of age.
Sometimes it really stretched our relationship as I was so not wanting him to become ill with any infections leading to damaging his lungs more than they already were. We survived those few sometimes traumatic years however, with just that one major hiccup when he had a collapsed lung (burning the candle at both ends I suspect) but after that, no hospitalisation for many, many years.
Around the time Justin turned 16 we felt he was getting to the stage where he might like to start taking some responsibility in so far as organising any doctor’s appointments he may have needed for prescriptions, check-ups etc. He was more than happy to do this and from that time on, I’m sure he started feeling that he was being more in control of his situation. He understood exactly what was happening to his body and knew whatever choices he made as far as sticking to his medication, exercising, partying etc. would have an impact on how he felt. He did overdue it sometimes I would remonstrate about this but he was of an age where he needed to lash out sometimes and it would have been nonsensical after all our years of preaching independence for him, for us to have interfered TOO much! His two brothers always came to his defence if and when I would, on the occasion, in frustration, have a ‘go’ at him for not having kept up his regime!
Justin’s longevity is a result of his commitment to his fitness regime, his INCREDIBLE attitude and his determination to have a full and fruitful life. I have NEVER ONCE heard him say ‘why me’. He is an inspiration to everyone with whom he has ever come in contact with. I just hope he’s as proud of himself as we all are of him!
I’m hoping that for those of you that may get to read this, it will inspire you to HANG IN THERE and get on with YOUR life. Justin has proved so succinctly that having the right attitude to his condition has obviously gotten him to where he is today. Not for him a world in cotton wool or expecting sympathy from all those around him. He’s done more in his life to date than a lot of us have and hopefully, after his new set of lungs, he will continue to thrive and probably outlive us all!