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

13Jul/130

The Love Of Paulie

Fred nearly made it to day 17. It would have equalled his best current record but it wasn’t to be. On Sunday evening Freddie went up to bed about 9.30pm, as usual, but when I followed about 10.30pm he still wasn’t fully settled. We read the ‘Friendliest Giant in Town’ and then Fred curled up in my arms to drift off to sleep. About 11.10 he asked “Dad, can I go to my own pillow?” The sweet boy thinks/ knows he’s doing me a favour by cuddling up to me in the bed. Soon afterwards I turned off the light and fell asleep myself. The current heat wave has me wrecked and sleep isn’t a problem these days.

About 11.40pm that all too familiar noise woke me from my light dozing. Eventually, after nearly three full days of waiting, epilepsy made an appearance. The seizure was a long, strong one and after turning on the light I held him as he went through it. After it was over I fixed him on his pillow and gave Lisa a call. As usual she took over, try stopping her, and I went upstairs to bed. About a half an hour later I heard a second one and came down to help. Lisa sent me away; she was in charge and was doing things her way, the way she knows best.  She nursed him through the next three hours and in all he had seven seizures before she gave him a shot of the Diazepam. Unfortunately we’ve learned that you have to let the cluster run its course before intervening. If you intervene too soon you may only prolong the attack as the epilepsy will keep coming back for a few more goes. Too late and you risk not being able to stop it at home and a trip to the hospital would be inevitable. Much and all that we love the staff of KGH, the less we see of them the better.

Funny how we welcomed the cluster, well maybe not welcomed but were certainly relieved that it had come when it did. As it had hit him overnight Fred woke on Monday almost unaware of what had happened. The only clue, I think, was that he was sore and a bit dopey. Also he didn’t have an appetite all day and had a couple of headaches. All in all he came through it ok.

On Monday morning Lisa got a call to say that an old family friend had died. May was 91 and her death not unexpected but still it upset Lisa that she was gone.  She had taught Lisa so much in her life from how to boil potatoes to how to wallpaper a room and Lisa wasn’t going to miss the funeral. As we were trying to work out how to manage things, Freddie had an appointment in Temple Street on Wednesday, I had an idea. Now that he’d had the cluster why didn’t we all go down to Waterford on Tuesday, stay overnight and travel up to Dublin Wednesday morning? It would give Freddie a chance to see all his cousins, Granddad Jimmy and of course Auntie Claire. We couldn’t see a downside to the idea and so it was done.

Fred was too excited for words when he heard we were off to Waterford. It has been about four years since we last went down and that has been too long for the little man. He slept on and off Monday and had a big long sleep Monday night.

Ruby had plans with friends so instead of dragging her around the country I dropped her out to Dingle. She was staying with friends and had a big match on Wednesday evening.  It is now Saturday afternoon and I haven’t seen her since she, Ali and Hannah sashayed off onto Ballydavid beach Monday lunchtime. The match was won, I know that much and I’m sure she’s having fun but when we’ll see her again I just don’t know.

Tuesday lunchtime we set off and it was roasting. Even with the air-conditioning on it was an uncomfortable journey and really we should have left either in the early morning or late evening. We arrived, baked, at about 4pm and Fred was delighted to be at Auntie Claire’s. Boonie was the only one there and Fred had a good look around to look for the others. If anything it was hotter down there than at home so I was conscious of keeping Fred in out of the heat. While too much heat isn’t good for some, it is certainly not the best for my little man. Eventually Auntie Claire arrived and got the biggest hug ever. Soon afterwards, in remarkably quick time for Shanahan women, Lisa, Claire and Boonie set off, leaving of course the barely supped mugs of tea behind. Soon afterwards Paulie arrived and Fred was beside himself with excitement. Paulie is a favourite and even came to see him when Fred was first in Temple Street earlier in the year. It seems like last year but it was only in mid January that we started our trips there.  Fred and Paulie went off to chat and get the TV working, as a distraction from him going out in the heat.

As it was getting on in the day I went and made dinner from whatever I could find. Fred and Paulie sat at the table and ate from the same big plate of fish fingers and pasta with pesto sauce. To say Freddie was in heaven would be putting it mildly. Sitting at the table with his cousin Paulie and both having the same dinner was just paradise for the little man. What was great for me, not just to watch, but that Fred didn’t need me, he was engrossed in Paulie and the sweet man that Paulie is he gave Fred his full attention. When they were finished Paul had outdoor jobs to do in the garden and Fred helped him, in between being called indoors by his ever worried and ever fussing Dad. Funnily enough I think that all the Vitamin D  Fred has being getting lately from the extra sunshine has done him the world of good, it’s just I don’t want him getting sunstroke in the bargain...

“Fred?”

“Yes my Daddy...”

“What are you doing?

“I’m doing Paulie jobs,” was the usual exasperated reply I’d get.

After Paulie had to go feed the horses, Freddie came in to watch some more TV. I checked on him after a few minutes and there he was in his throne. The armchair pulled up in front of the TV, footstool in front of him, legs up with a blanket over them and remote control in hand.

Such a sweet boy.

About 8.30pm Lisa and the girls arrived home, followed soon after by Granddad Jimmy, Rosarie, Aunty Helen and Cousin Susan. Fred ran out to give Granddad Jimmy a big hug and to ask where Paulie was. As Paulie wasn’t with them,  Fred went back to his throne. One by one guests would wander in for an audience and Freddie would tell them about what was on TV or ask on Paulie’s whereabouts. Beer, glasses of wine, cups of tea and GnTs were had and about 10pm Fred and I went off to bed.

Luckily as we were getting ready, Paulie drove up and Fred called him from the window. Paulie came straight up, kissed the man goodnight and promised to be around in the morning. As we were settling ourselves to sleep Fred said...

“Dad, I think I don’t want to go to Dublin.”

“No? Why not?”

“I think I want to stay here with my cousin Paulie.”

The little man just loves his cousin Paulie.

Wednesday morning we were up and out by 8.15am. Luckily Paulie, Boonie and Aunty Claire were up to say goodbye and a very sad Fred set off for Dublin. Just down the road we met Uncle Bill,an extra treat for the man, but didn’t make up for the leaving of them all behind. An uneventful but cooler journey had us in Dublin by 10.20am and a breakfast in Temple Street.

Thankfully all the excitement and heat hadn’t dulled Fred’s brain and he had a great session with Cathy Madigan. This was to be our last time with Cathy and Fred spent about three hours with her, breaking only for lunch. By now Cathy reckons she has enough to compile a report on Fred’s brain. The work Cathy has done has been invaluable to us and Fred of course. She has given us the courage and the belief to get back into living. Without her we wouldn’t have Fred back at school, back at the beach, out on drives, indeed we probably wouldn’t have even been to Waterford. So much is owed to her by us that I could never describe in full how much she has actually done.

We said our goodbyes with hugs and kisses. It’s not the end by any means with Cathy but, as fellow epilepsy suffer Winston Churchill said, ‘it’s the end of the beginning.’ The meeting of the surgery team won’t happen till the autumn so we won’t be all together again till probably September at the earliest.

Off we then went to Conor and Cathy’s. This too was our last visit for a while and even a few months ago it would have been unthinkable for us to go stay in someone else’s house. The stays there have been wonderful and the highlight of every trip to Dublin. We had a big dinner, more beers and wine and a lot of laughing before we all went off to bed about 11pm. These special sleepovers in Inchicore will be badly missed by us and not only because it gave us a chance to get a break away. As we said our goodbyes on Thursday morning the sun was beginning to beat down again, a big contrast from the first morning there when it was snowing as we left.

Hopefully it won’t be September before we see Conor and Cathy again. Our visits to Dublin have been made special by the stays in Inchicore, something we’ll never forget.

If all the promises of visits come true Fred will be inundated with guests over the next few weeks and hopefully it will be so. Paulie, Auntie Claire, Conor and Cathy, Ella and Ben, his brother Thomas, Granddad Jimmy and Rosarie...its going to be a busy house.

At the turn of the year Lisa and I couldn’t have dreamed of such a summer. Back then the dread of another year locked up trying to keep Freddie safe was all we could see ahead of us.

So much has changed and all for the better.

Thank you to all involved for making it so.

 

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Posted by John Verling

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