Daisy And Me People I meet when on my walks with Daisy

30Nov/140

Rocket Man

It is such a beautiful clear wintry Sunday morning here in Ballyard. As Lisa said this morning ‘it’s one of those days that you are glad to be alive.’ My answer was that I’m glad to be alive every day but I know where she was coming from with the sentiment. It’s one of those days where you can forget all your troubles for a while; pack em up in your old kit bag and smile boys smile.

In fact it has been a trouble free week. Fred put down another good five days at school; no confusion or sick tummy as an excuse to come home. Though come Friday morning it was difficult to get him out of the bed and he came out with one of those difficult to answer in a good way questions...

“But why do I have to go to school Dad?” he asked, rubbing the sleep from his eyes.

“Because you have to,” was all I could think to say.

“But why?”

There wasn’t any gain in pointing out the lifelong blessing of a good education at that hour of a wintry morning so I went with bribery...

“If you go this morning you won’t have to go tomorrow,” I said, “and you can stay up late tonight.”

“Ok my Dad,” he said stepping off the last stair before putting on his slippers and shuffling to the kitchen.

I watched him go. Our beautiful boy who’ll be twelve in January, walking tall and proud into the kitchen for his breakfast. The struggles he’s had and will have would daunt anyone but he’s taken them on the chin and got on with life.

On Wednesday Fred announced he needed a haircut and Lisa took him to the barbers Thursday afternoon. I wouldn’t dare, as I can’t even get my own hair cut, going completely tongue tied when asked what style I want. For the last eight years I’ve being going to the same hairdresser and each time I just say “whatever you think, you know best.” In fairness to Magda she is the hairdresser and always does a great job, leaving me to browse the latest fashion magazines, while the women chat around me. If I took Fred to a barber he’d come home with a pudding bowl cut or something worse. Thankfully the barber here in Tralee did a great job and made our man look beautiful. Later on I saw him looking in the mirror, checking the style and swishing the hair to the side. He’s growing up all right.

During the summer Fred and I used to look at the stars before going to bed. This habit dropped off as the cold nights came in. On Thursday night Fred announced he was going outside for a walk. On went the jacket, his boots and he found a torch in the drawer. It was about 8 O’clock and I was settled reading a magazine, in no mood for a walk. Off he went and came back about ten minutes later. You feel the cold off him but he didn’t seem to mind.

“I saw the stars and the half moon,” he said.

“Where did you go?”

“Oh just here and there.”

Santa might be bringing Fred a telescope.

The arrival of Santa or the waiting for the arrival of Santa is driving Fred crazy.

“Why is Santa taking so long?” he said in bed one night.

“That’s the joy of Christmas,” I said.

“Well he’s driving me mad.”

Between school and waiting for Christmas it’s been a tough week for Fred, though one of the best for us.Through it all he’s been flying through his homework, impressing his mother with his reading and despite misgivings having a great time with Denise, Ms O’Se and Ms O’Connor; all three commenting on how much he has come on lately. ‘The Science Man’ came on Tuesday and they had a great time setting off rockets in the yard, whatever actually was going on I never did discover.

Waiting for Santa though and firing off rockets at school.

Now that’s a proper childhood.

 
 

 

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23Nov/140

Encouragemnet

Recently we’ve seen great improvements in Fred. It’s probably that the cumulative effect has become more noticeable than it been any sudden change in him. Habit has played a big part, the daily routine, not letting him slide into bad practice and encouragement. Not long after Ruby was born someone said to me that encouragement is the greatest thing you can do for a child. Certainly with Fred we can see the effects; the fact that Ruby is wonderful may be down in part to our encouragement, who knows?

Not too long ago I couldn’t have let Fred alone in my office. Every drawer would have been emptied, every pen left uncapped and every piece of paper scribbled or drawn on. Last week though I did leave him. Fred had come up to see what I was doing, it was early evening and I think he wanted to spend time with his Dad rather than the girls. While I worked he took things out and rummaged about.  After I’d finished I said that I was going back downstairs...

“I’m staying here,” Fred said.

“Can I trust you not to take out anymore stuff and to tidy up afterwards?” I asked “and not to go near that bottom drawer?

“Yes my Dad,” he answered, almost annoyed at me.

“I trust you.”

“Yes my Dad.”

Later he came down and watched a program before going up to bed.  A couple of hours later I went up to check the room. Everything was as tidy as I would have left it myself. Things were put back in the right drawers and the bottom drawer looked untouched. I was genuinely surprised, delighted and even a little emotional at such a demonstrable sign Fred’s improvement. In bed I told him how proud I was of him and he just said:

“I know, now leave me alone I’m trying to sleep.”

In all of his activities there are improvements. Fred’s schoolwork is coming on, though after seizures he slips back a bit which is a real curse. On Monday the school called saying that Fred was unwell. I went over to asses him. Ms O’Connor and Denise were a bit sceptical but we all know not to take a chance which is why they called. Fred looked a bit pale but not too bad. Maybe because the cluster had been comparatively mild that it hadn’t cleared fully. To emphasise the point Fred moaned and groaned while moving closer to the door. To be safe I took him home.

At home he went to bed and slept for a few hours. He woke about 2pm looking better and even sat up to have a chicken sandwich in bed. Bliss. To add to it he got the laptop and watched a few Ben 10 episodes while I worked at my desk. Later when Ruby came home she snuggled up to him for a while and by dinner time Fred declared:

“I think I’m better now.”

The next morning he went off to school and performed to his best. All the teachers were delighted with him and at homehe flew though his homework, impressing his mother on the way. Sometimes we just have to go with it, listen to Fred and let him have his time when needed. A different type of encouragement.

By Friday Fred was fed up with school but went because it was the last day. There was also a cake sale as a fund raiser and Lisa was up early baking. At about 10am I went over with the Tupperware’s of cream and chocolate buns. Not cupcakes, these are proper buns that taste delicious. Just as I came in the gate Fred walked around the corner with Ms O’Se and a big smile broke on his face when he saw me with the cakes. With the smile getting bigger he took the Tupperware and walked in with to the cake sale.

“Oh excuse me these are from my Mummy,” he said struggling with the boxes, Ms O’Se and Denise standing watchfully over him.

Afterwards I asked him how he got on.

“Great,” he beamed, “I had four cakes.”

Yesterday I was to go away and Friday evening I asked Fred take charge, that I trusted him to be good and not to be fighting with his Mum or his sister.

When leaving in the morning I said it again, adding a quote from Voltaire...

“With great power comes great responsibility,”

He nodded in assent.

I got home about 8pm and Fred ran out to greet me.

“I was great at being in charge,” he said after giving me a big hug.

Now we just have to hope he doesn’t get too power hungry.

 

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16Nov/140

Bird Watching In Blennerville

Fred and I are just in from bird watching. There is a spot not far from home, next to the Blennerville Windmill which is ideal. In the car park is a grassy bank, where we climbed and took up our positions. We had a pair of my father’s binoculars which did the job perfectly. It took Fred a few tries but eventually he figured where to look and his excitement of seeing a bird on the wing was great. In my pocket I had a book of birds but luckily I was able to identify the ones we saw from sight alone. Beautiful Brent geese, an egret, a heron, some Terns and a lot of crows. During the week I’d seen starlings doing their air display but none of that today.

After about a quarter of an hour Fred got the confusion so we packed up and headed home. I’d forgotten the magnet, which was silly of me in the circumstances. Back home I gave Fred a few swipes and he was as right as rain in no time.

“I’ll just have a lie down and watch The Cat in the Hat,” he said, pulling a blanket over himself.

Ten minutes into the movie and we got a call from the girls to come and collect them. Before going bird-watching Fred and I had dropped them at the gym, now they were finished. Off we drove and picked them up. All the way there and back Fred was talking of his trip to New York. Yesterday evening he overheard Lisa and Ruby talking about a fantasy holiday to the Big Apple. Now he has it in his head that we are going but the deal is that we have to wait until he gets better. That and winning the Lotto. It’s tough on him and the family that we can’t do such trips but yet one day we will. A big decision made was that we were going on the plane rather than a boat and we were going to stay in a big hotel for a long time. All ok with me.

The week has been a good one for Fred. On Monday he started a new routine. Instead of me walking him into to school he now wants me to wait at the car while he goes on his own. I was happy with this, a sign of his independence and growing confidence. Once he reached the gate he turned to wave and then Denise walked out to him. She saw me waiting and gave me the thumbs-up, she had him, all was ok.

At lunchtime Denise told me of the consternation Fred had caused with his new routine. Apparently some of the kids came running into her shouting:

“Freddie’s walking in, on his own!”

She too was delighted with the new move and now it’s our daily routine, me waving and the thumbs-up from Denise.

On Thursday though I knew Fred wasn’t himself. This time he wanted me to walk him in and hold his hand. A step backwards I thought. After school I was waiting outside when I saw Ms O’Connor come out and look around. Not a good sign. When I got out of the car she just gave me the nod. That knowing nod. Fred had been waiting to go home, sitting in his chair with his bag on his lap when a seizure struck. No panic though. We made him comfortable, waited for all the kids to leave and when the chaos had cleared I drove the car into the yard. Fred walked out, got in and we went home.

It wasn’t a bad cluster, the rest of the day was clear, Fred even woke for dinner. The next afternoon he had a couple more, nothing serious and today it feels like nothing happened.

Fred has this lovely practice of lying in bed with his eyes closed and asking me questions before drifting off to sleep. Sometimes it’s about what I did as a boy or it might be about when Christmas will be here.  On Tuesday night he lay there, and I actually thought he was asleep, when he came out with...

“Dad?”

“Yes?”

“Was your Daddy on the moon?”

“What?”

“Was your Daddy an astronaut?”

“What?” I was confused on this one, wondering where he’d developed the line of thought.

“Was your Daddy an astronaut when you were a kid?”

“No, why?”

“Oh, nothing, night Dad,” he said rolling over on his pillow.

Where he got that one I’ll never know.

That’s the beauty of our Fred.

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9Nov/140

A November Saturday

It’s a dirty day. The rain is bucketing down; the clouds are dark and heavy. Without a doubt winter is here and the jackets are on again. Going out this morning with Fred the sun was shining, by the time we were coming home the skies were opening and we hadn’t been out that long.

Taking Fred with me at the weekends is something I should do every week. At times I just leave him be, enjoying the break from school and whiling away his day. Then come Sunday evening I always regret that he hasn’t done much, evidenced by his slowness from not being challenged. Fred’s life is challenging, he has many hurdles to overcome, but his brain needs to be challenged too, that is the other side of the coin. So when I said after breakfast that he was to come out with me his first reaction was to say no, or “no, thanks,” as our polite boy puts it. Other weeks I would have said ok but this time I insisted. After a shower and a change of clothes Fred was waiting with a shopping bag, happy to be going out. The two of us set off, leaving Lisa at home; our Ruby had gone to Cork at 7am, school stuff not shopping...

Fred and I drove over to Super-Valu. Inside he set off on his own, something I am getting confident of letting him do, only checking on him every five minutes. When he did come back to me he had some scented Christmas candles in the bag,

“You can’t be taking stuff off the shelves,” I said.

“But I didn’t take it off the shelves my Dad,” he pleaded, “they were on the table over there.”

It took a few minutes of explaining that it doesn’t go down well to pack your bag before paying for goods but he got there in the end. We kept on shopping until Fred found a display of DVDs and spent the rest of the time shifting through them. As a reward for doing good work, he had to pack the bags at the checkout and carry them to the car, he was allowed one that hadn’t already got at home. Since we got back he’s been watching it, happy that his Daddy is happy and not onto him to do something.

All this comes at what I think has been Fred’s first full week at school for a while. Between seizures, illness and school holidays I think it may be his first this term. It was a good week for him; he did his work, did his activities and came out yesterday afternoon with a smile on his face. It was Friday, the weekend was here and no homework, the perfect day really.

Little by little Fred’s schoolwork is improving. Despite setbacks due to days off I can see his writing reading and maths getting better, still behind others of his age group but that can’t concern us now. What is important is for him to catch up, get the basics right so he can move on. At times it feels like pulling teeth but those days are getting fewer; he is making progress. At night now he reads some of his books on his own, not stopping over words he knows but pushing on, getting to the end of a sentence. It may only be a paragraph here and there but it’s an improvement.

During the week Sam Maguire paid a visit to the school and Fred got a lovely photo of himself with the cup. Fred had no knowledge of what the cup was for just that it was a ‘massive trophy the football team won.’ A good way of putting it I suppose.

For the rest of the weekend Fred will take it easy. There is no point in going out, the weather just won’t let up. A call has been put out for Jaden to come over but that doesn’t look likely now.

Fred is happy cuddling his Mum, his Mum is happy to be cuddling him while the rain falls.

A typical November Saturday really.

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2Nov/140

Halloween

Fred Halloween

This was a week of great days. Days when nearly everything goes right and Fred’s life as well as our own knock along as normal as possible. Fred will always ensure that every day is different no matter how normal it may appear. He’ll find a way of doing things or saying something that is just off centre making us either laugh or cry in the process. Our man has a knack of looking at life differently, sometimes with a single minded purposefulness that would take me years to get down on paper not to mind do justice to his way of thinking.

On Tuesday Ed Galvin paid us a visit, killing time between appointments . Fred came with us on a trip to the electrical shop as we needed bulbs for the kitchen. When I was growing up we had one bulb for the kitchen, a strip-light in the ceiling. Today in our kitchen, which isn’t much bigger than the one I grew up in, we have nine ceiling lights, six under shelving ones plus the two in the hood over the cooker. Energy crisis? What crisis? Anyway I needed to replace some bulbs and we drove over in Ed’s Bentley.

Fred took the front seat, Dad was relegated to the back and at the store Fred took Ed’s hand. In the store he stood near Ed watching what he was doing and taking in the new experience. For me it was great as Fred stood still, wasn’t pulling at everything and not asking to buy a torch, for once.  No doubt Ed had an influence but Fred too has grown-up a lot lately and he came through this test in flying colours.

That was day twenty-three in the current cycle, a record equalling day for Fred. When Ed extended an invitation to lunch we thought it better not to push it and Fred stayed at home with his Mum. We still live in fear of something happening in public places; no matter how well life has being going for the man. He didn’t mind too much though and when I came back he was happily watching a movie. For the rest of the day all that was on my mind was would be make it to a record breaking day twenty four.

Wednesday dawned and Fred had made it. He got up as usual and had a good breakfast. Ruby had gone off to Cork with the Currans so when Lisa went to work at noon it was just the two of us. He wasn’t quite himself though he had lunch and I worked around him. During the afternoon he asked me to sit with him on the couch which I gladly did as I had one of those feelings. We watched a movie and some TV. About four o’clock he gave me his glasses and rolled over on his side, immediately falling into a deep sleep. Twenty minutes later and the seizure struck and so day twenty-four became our new milestone.

Lisa came home an hour later just as the second broke through and she wasn’t surprised. Neither of us had really spoken that we expected a seizure but we both knew it was on each other’s minds.  In the way only Lisa can she took over Fred’s care and got him through the rest of the evening. It was a bad cluster, spread out over the night but at 2am Lisa called a halt by giving him the Stesolid. We try not to give him the shot as it can stay in his system for days, making him lethargic and it reminds us of the boy he was just a couple of years ago. But after five or six seizures you give up hope of the VNS stopping the run and intervene.

Fred was wrecked the next day but asked for his breakfast about 2pm. As he hadn’t eaten since lunchtime the day before I made him plate of fried eggs and toast which he ate. His appetite was good and he was sitting up watching TV, all back to normal in under twenty-four hours which says a lot for our man.

That night going to bed Fred asked for a bedtime story. I found him a book and he sat up on his pillow waiting for me to get ready:

“Ooh,” he said.

“What?” I asked.

“Ooh, ooh,” he repeated and slipped into a seizure.

That last one, almost a goodbye from the epilepsy as it leaves after a cluster. Sometimes it hits in the morning, other times in the evening and now just as he was going to sleep. We made him comfortable and he slept through the night.

Friday was Halloween, a day Fred had been looking forward to for weeks. Ali and Hannah came in for a sleepover, adding to the excitement for Fred. Once it got dark Fred started to get ready and the two of us set-off trick or treating. At each house we went to I stood back and Fred rang the doorbell, sometimes twice if they didn’t answer fast enough. As we were the first out Fred did well, very well indeed. So much so that I had to carry some of the loot in a separate bag, much to Fred’s delight. Back home he showed Mummy how much he’d gotten and poured it all into a bowl to look at.  He showed it to the girls after they came home from the cinema, proudly offering them to take a sweet.

That evening I watched the original Halloween movie and Fred, sitting next to me, did as well. Though it’s a bit dated now it still has some scary bits. Going to bed Fred asked me:

“Dad?”

“Yes Fred,”

“So there isn’t a man with a knife and a mask in our house?

“No, of course not,” I laughed.

“Not on the stairs? Not in the bathroom? Not in the bedroom?”

A good scare makes a perfect Halloween.

Yesterday the two of us went to the cinema. For some reason we got out of the habit of going and the new Teenage Mutant Ninja Turtles was on, in 3D. We queued, bought our tickets and the 3D glasses. In our seats we put on the glasses and the movie began to roll. The 3D was new to us both but Fred loved it, taking off the glasses and putting them on again, seeing the difference. For about twenty minutes all was well but it got quite dark and noisy. Fred said he was scared, that there was too much jumping. Whether this was due to the surround sound and 3D or maybe a throwback to the Halloween movie I don’t know. We left but the manager kindly put us into an animated movie and all was forgotten. Fred ate some of his sweets from the night before, pulled up the armrest and cuddled up. A great way to help with his recovery.

This morning he slept in and came down for breakfast about 10.30am.

“I’m back to normal now,” he announced, clearly rested after the long sleep.

Another one for the books.

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