His Christening was held on Sunday 26th May at St Andrew’s Church in Tampa. A very emotional time as so much of the service relates to the life to come and the future development of the child as he matures to adulthood. This in Luke’s case is destined not to be. It was a lovely day and the family was supported by close friends at this occasion.
I have included a few photos of the day; as was once said: a picture paints a thousand words.
Time has flown by, we have been staying here for nearly a month and have to return to the UK in a few days’ time.
This visit has not been the ‘holiday’ of previous occasions, but was never intended to be either. It has certainly been harder work than I anticipated, but I can have no complaint. I have only had a month here, while my brother’s family have it every day.
My brother has made the first major steps in his recovery from a knee replacement (sorry about the pun!)
He needs the second knee doing but this first operation has proved this will not be possible at present, he needs to be able to walk and carry Luke about the house.
Luke’s bedroom has been moved downstairs. It has become too difficult and simply dangerous to keep carrying him up and down stairs. The downstairs shower has been converted to Luke’s bathroom, a makeshift bathing table constructed from plastic storage shelving, strong and no problem with water! Luke’s bedroom has been decorated with the paintings done by the children for the painting competition a few weeks back. This task was finished on Thursday with a final flurry of activity, unfortunately including an
emergency run to the local lumber store for a plank of wood to replace the slats 'Uncle Nigel’ broke when he stood on the bed to reach up the wall! A new changing table has been made, again from strong plastic shelving units, keeps costs down. For those with kids thinking why a changing table for a child now over 2 ½ years old? You have to remember, he is the physical size and weight for a child his age but that is it;
the effect of Luke’s condition is that in most other ways he is now very much a baby, and will remain so.
Hennrietta, ( Henny) and I have been working as delivery drivers while we have been here, no not for the local pizza company…. Yannick to school, then Charlotte, then Luke to day-care, then Daddy to work or physical therapy every morning. Quick break then the day continues with the collection of our morning deliveries after school , day-care and work completed. Some days, with Luke having physical therapy and Daddy having the same round of Doctors appointments and PT for his knee, the deliveries started at about 7.30am and went on until lunchtime! This is a logistical nightmare and being in 3 places all at the same time is almost possible!! Oh for warp drive or a transporter system !! The worst day was a day when the Gandy bridge was closed after a storm, the 20 minute trip to get Graeme took 2hr 40 minutes instead! This doesn’t sound like much of a problem but it is. Luke needs to have company all the time. When one parent is delayed the other can effectively be ‘tied’ to Luke. Not very hard you think, but sometimes he will not even allow his ‘watcher’ to have time to go the bathroom or anything else. It’s not his fault, just part of his condition.
This last week with school over for the older 2 siblings it’s deliveries to Day Camps instead. I seem to remember school holidays differently, at home, or caravanning. Needless to say sometimes the delivery deadlines are missed but most are flexible enough to get away with it. Graeme is now able to drive again so will resume the delivery driver role when we return home to the UK.
Daily life for the family completely revolves around Luke, it has to. All other ‘normal’ household activities just pass the family by. Gardening, cutting the grass? No time. DIY now stands for’ Do It another Year’. Watching a movie or TV in the evening? Not possible as Luke won’t go to sleep whilst he hears the rest of the family are up. You could believe he knows his time is short and wants to be with them as much as possible.
Luke really enjoys time in the pool. He cannot swim or float on his own but loves to be in his Mother’s arms, (and Dad’s), (and Henny’s!) and play with his floating basketball hoop or wind-up toys. This is in the short
time between parents getting home and dinner. Dinner is a haphazard affair, Luke will want to sit either with Mummy or Daddy on their lap, so one parent won’t be eating with the rest of the family, however hard they try to sit down to eat as a family together, someone will be left at the end having their dinner cold
after all the rest have finished.
His day-care is a wonderful place. The other kids like to hold his hand when he is in his ‘stander’. I was asked the other day by a girl about 5/6 years old what was wrong with Luke’s legs. Try answering that one quickly! The same girl followed it up the next day with “Will Luke ever be able to walk?” It was done so nicely and caringly. Kids hey ! They sometimes surprise you with their level of genuine feeling in a world filled with a diet of trashy TV and other petty influences.
Mum and Dad got out tonight for a visit to the cinema, not sure when they last managed that together. I’m sat typing this last paragraph in Luke’s bedroom. He is asleep on his bed, peaceful, hopefully enjoying beautiful dream. Bed repaired just in time and all the pictures on the wall.
Uncle Nigel