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

19May/130

The Blennerville Card School

It has been a week since Fred’s last seizure, well almost. The curious condition that is epilepsy seems to have Fred on a two week cycle at the moment and the last few times he’s had a bad day the epilepsy has signed off with one last seizure, just as you think the little man is out of the woods. Last Sunday Fred was put through the wringer but as always he fought back and about 6pm he asked to get out of bed. He came downstairs, wrecked after a day of about eight big seizures and a few small ones thrown in for good measure. Plus he’d had a shot of diazepam to try stopping the cluster and an extra tablet of Rivitrol.
For the next couple of hours he sat, mouth open in a daze and watched TV. About 8pm he asked me if we could go to bed as he was tired. After the day he’d had and all he could complain of was of being a little tired, some man...so I took him up. At this stage the last big seizure hadn’t hit, I was fully expecting it at some stage. Lisa and Ruby were watching The Vampire Diaries and Lisa said she’d come up later to take over. One of my many oddities is that if I go to bed before 11pm I just can’t get to sleep, so 8pm was far too early. Lisa the wonder woman knows me well enough at this stage, so the offer of letting me come back down later was much appreciated. Not that I didn’t love being cuddled up with my man, him sleeping and me reading, also the weather was terrible which makes it even cosier being in bed. Now Lisa had spent the day with him, nursed him through each and every seizure, while Ruby and I tried to have a normal Sunday. Selfless is too small a word for what she does on these days...
So about 10pm Lisa came up and took over. When Freddie had gone to sleep, almost immediately we got into bed, I was fully expecting that last seizure. It quite often comes on him when falling into a deep sleep, not this time though. After watching some TV and reading the paper for a while, I took over again and once more Lisa offered to spend the night with Freddie but I sent her up to her bed. I probably fell asleep almost immediately; I do remember waking at one stage with my book open on my chest, like a comedy stereotype of a sleepy Grand Dad. Then at exactly 3.45am the big seizure struck, that last one which we’d been expecting since the night before. Epilepsy just doesn’t give up. I called Lisa, she took over again, neither of us said it but we were both hoping it was the last one and not the start of another cluster...you never know with epilepsy.
At 7am I got up to make the breakfast and take Ruby to school. Freddie had slept soundly since the seizure and Lisa was sitting up reading her Kindle. Just before Ruby and I left for school the two came downstairs, Mr Sleepyhead and his beautiful mother.
“How are doing?” I asked.
“Fine,” he answered, slightly annoyed that I was asking.
When I got back from Dingle he had had his breakfast, it takes a day or two for his appetite to return fully but he still doesn’t like to miss a meal if at all possible. The little man stayed awake during the day watching TV and doing his own thing. All Lisa wanted to do was snooze; she’d had a long 36 hours or so of being on guard and deserved every stolen nap she managed.
On Tuesday we were off to Dublin again, for more neuropsychological assessment with the excellent Cathy Madigan. To keep with the mantra of getting Freddie back to a normal life and to keep epilepsy as just an inconvenience, the little man went to school for the morning. As usual he loved it and the fact he went really helped to put Sunday to the back of our minds. A small thing maybe, but it really helps normalise our lives that bit more. We set off about 2pm, the car full of Freddie’s toys and the obligatory food parcel for the Inchicore Two. When all this is behind us I think the UN would do well to employ Lisa for delivering food relief to troubled parts of the world. Fearless, with a brain for logistics and a timeless beauty, what more would they need.
On the way up Fred had a snooze, just a small one, most of the time he looked out at the passing countryside and asked every so often “where are we now?” In no time at all we were in Dublin and Fred ran from the car straight to Conor and Cathy’s door. Conor was given the biggest hug and Fred went in looking for Cathy. As he was out he spent the next while out watering the back garden and then took up a spot by the front window to look out for Cathy. When he saw he arrive he ran out to give her her big hug and walked her in home.
The rest of the evening was spent laughing, eating and a little drinking. These trips to Dublin have become real tonics for us, we all relax and put the bad days behind us...all part of the normalization process. As it got dark Conor took me for a walk around the estate they live in. Built in the 19th century by the GSWR for their employees on the railways, it’s a unique part of old Ireland. The fact that there are 240 houses with just one narrow road in and out, makes it feel like a hideaway from the rest of the world.
It certainly is for the Verling family.
On Wednesday we set off for Temple Street. Lisa was bit hung over, the result of a few carefree glasses of wine, only what she deserved after the Sunday she’d put down. Fred was looking forward to seeing the other Cathy in his life, not as much as Cathy Berry, but he’s resigned to the fact that these trips are all part of him getting better.
The little man spent two hours before lunch with Cathy and then we went down for lunch in the basement restaurant. In truth I think this is the real reason Fred likes Temple Street, the chance for lunch in a restaurant. It’s a great place with excellent food and the staff are all true Dub women. They really care about doing the job well and outside of preparing good food they always give large helpings, they know you’re not there for the fun of it.
After lunch Cathy took Fred for another session. She wasn’t expecting this to be a long one as she thought he was a little tired. Once again he confounded the sceptics and did a good hour and a half. Afterwards Cathy called us in for a summary of where she thinks we are. This is a no punches barred session, Cathy tells us it as she sees it and she’s the expert. As parents we know Freddie and know he is full of potential but Cathy is there as a dose of reality.
Cathy was amazed at his progress. Freddie was scoring 9 in tests that only two months ago he was getting 3. As Conor had said the night before he sees a much more confident Freddie than he saw in January and Cathy Madigan agreed. His walking is much improved, his speech is clearer and he is much more alert. She was delighted that Conor and Cathy had seen the difference too, it confirmed her thoughts. The one thing I’ve noticed recently is that Fred is now taking his time with talking, if he can’t remember a word he’ll wait for his brain to retrieve it rather than blurt out an incorrect sentence. You can actually see him stopping and thinking or waiting for the right word.
We believe all this improvement is down to a few factors. The longer breaks between seizures no doubt helps enormously, the balance of medication that Dr Shahwan has him on must help too. A big help is the return to school, just getting him out with other kids is jolting his brain into action. The normalization process, the trips to the beach, going into shops, being outside playing, all these many things must be adding to this alert Freddie we’re getting back.
The improvements have been so great that Cathy can’t yet produce a final report for the surgical team. The report has to be accurate to the nth degree, no ifs, buts or maybes. In fact during lunch I met Dr Shahwan in the restaurant and he remarked that the work Cathy is doing is almost more important than the surgery itself.
We are so lucky to have got in with the team in Temple Street, so, so lucky. Because Cathy wants to do more work we’ll have at least one more trip to see her. If she thinks it will take ten more trips then we’ll be there.
On Friday I took Freddie to school. He’s now up to an hour and a half. His SNA now comes out to collect him and walks him in, bag on his back and laptop under his arm, quite the scholar. While I was waiting Pam and Ed Galvin stopped for a coffee on their way to Dublin. I couldn’t leave my station so the three of us stood on the footpath in Blennerville, drinking our coffees while Freddie did his learning inside. It’s a funny life we live at the moment but all our friends combine to work around it and every bit helps.
At 10.30am the kids came out on a break but no sign of Freddie. The headmaster came out to say he was busy playing cards and would be a few minutes, then his teacher came out to apologise too. There was no need to apologise, the idea that Freddie was inside playing cards with his new friends was the sort of thing we’ve been wishing for, for the last five years, if I had to wait till three o’clock I would have gladly done so...
“Who were you playing with?” I asked when he came out.
“Oh just Joshua, Daniel and a girl,” was Fred’s nonchalant answer.
The fact his answer was so matter of fact, the fact he has friends he can talk about, the fact he’s started a card school, make for such a normal life for our Fred.
All in all it makes everything just about right.

Share

Posted by John Verling

Filed under: News Leave a comment
Comments (0) Trackbacks (0)

No comments yet.


Leave a comment

No trackbacks yet.