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

20Apr/140

Trains, Go-Karts and The Easter Bunny

This week Fred went on the train to Dublin. We had an appointment at Temple Street, the six month check-up; it has been that long since the VNS was inserted in Fred’s chest. One of the benefits of the VNS is that Dr Amre runs the out-patient clinics so not only were we getting a review of the VNS progress but also the team was getting to catch up on Fred’s case. Of course everyone was getting updates on his status but when no news is good news the face to face is important for all those involved, team and parents. It keeps us all on the same page, to use the language of corporate speak.

On Thursday we were up at 6am. Well poor Fred was dragged out of the bed about 6.20am and the three of us bounced up the road to be in the station by 6.50am. Despite a minor row in the ticket office, we were on the train by 7.00am. Lisa as Fred’s official carer was given a travel pass for allow for free rail journeys. Under an anomaly we had to pay for Fred. Not the end of the world but the bureaucracy of the system had me arguing with the station master. Why Lisa had free travel and Fred, the reason Lisa is an official carer, did not, just wouldn’t be dealt with by the official. The problem lay with the issuer of the travel pass, Fred’s name wasn’t on the pass, but time was when a train inspector would see the problem and rectify it himself. The fear of making a decision and dealing with the consequences outweighed the sense to do the right thing. Surely he could see that Lisa wasn’t over sixty-five and why else would she have the pass?

Anyway we weren’t going to let officialdom ruin Fred’s first train trip. Strictly speaking it wasn’t his first. We did go from Stansted Airport to Liverpool Street on a London trip, when Fred was just three years old and epilepsy was just a term you’d see in a book. Fred however doesn’t remember that one, we barely do, and so this was his first proper train journey. We sat at a table seat, Lisa and Fred on one side, me on the other side. Not long after we sat down the train slid away from the platform, we were on our way. One of the best bits of train travel for me is to stare out the window, watching the world go by. Once we got beyond the station Fred asked for the computer...

“Don’t you want to look out the window, see all the fields?” asked Lisa.

“No,” said Fred, “I just want to watch the Godzilla battles.”

This was Fred’s idea of heaven, the laptop all to himself, no Ruby to disturb him and the promise of breakfast to come.

It has been busy week for Fred. Now that he is on holidays and the sun is shining he’s keen to go outside to play. Time was when that filled Lisa and I with fear. How many times in the past have we lifted him off the ground, carried an unconscious little man back into the house? But we have to let him off, trust that Fred will deal with the confusion if it hits and not pretend all is ok. All part of making epilepsy just an incidental in Fred’s life. We did it last summer; this season, with the VNS and Fred a year older, we have to let him off. This year Fred has the confidence to approach the kids on the estate, to ask them to play and to follow their lead. “The girls” as he calls the group have been wary of him, they don’t know who is this boy and he’s being taking a softly, softly approach to getting to know them. When Jaden has been over the two can play together but it’s not easy trying to break into a group of girls. Not that it will get any easier as he gets older...

After about half an hour on the train hunger set in, we had been up early but had skipped on breakfast. From the buffet carriage we got coffee, a sandwich and a breakfast bap for Fred. This he reluctantly shared with his Mum. Now the idea of heaven had become a reality: on the train, watching Godzilla and eating a bap stuffed with rasher, egg and mushrooms.  The next stop was at Mallow and a woman from the Cork train took the free seat next to me. Fred was getting tired and when finished the bap he snuggled up to his Mum to complete his sleeping.

All week he’s been sleeping in but we’re conscious of not letting Fred lose his sleep pattern. As Dr Amre reiterated at the meeting, regular sleep is vital and sleep deprivation is a huge trigger for seizures. So Fred is going to bed a bit later now that school is on holidays but we’re only letting him sleep in until 9 o’clock at the latest. Most mornings he’s been getting up without being called or at least without much coercion.

This morning he’s been on an egg hunt. This was organized by the mother across the way from us, Heidi, who is one of those super-moms, always with a trail of kids in tow and always gathering more to entertain. Fred was still in bed as I got up but when I came out from the kitchen a few minutes later, I found him on the stairs, putting on his socks. The other kids were out already, the sun was shining and he was eager to be joining them. Soon he was on the scooters and the three wheel go-karts that the kids have, speeding around the estate without a fear in the world. Who would have thought our man would be out go-karting this time last year? Certainly not his parents. After he came in for breakfast the call came to go back out, the Easter bunny had arrived, hiding chocolate all over the walls and in the bushes. Fred went off with the kids, finding the hidden treasures. All finds were put in a basket and evenly distributed back out among all the kids when the hunt was over. Fred asked Heidi if he could have a chocolate bunny lollipop for Jaden. One was given and Fred put it in his pocket, to keep for his friend who is never far from his mind.

On the train Fred woke just as we approached Dublin. As we trundled through Inchicore I called Conor, who was picking us up and taking us to Temple Street. Another treat for Fred, I hadn’t told him and so he was doubly excited. Conor picked us up outside and Fred jumped. Chatting and laughing we headed off across the city, getting a guided tour of the spots along the way. In an all too quick time Conor dropped us at the hospital; we said our goodbyes and headed up to neurology.

Not long after checking in Cathy Madigan called us to her office. It had been a few months since she’d seem Fred, probably last August, and she was delighted with the change in the man. His stature, his walk, his whole appearance has improved dramatically and she noticed this immediately. Of course the VNS has been a big factor but Cathy’s hard work and setting us on the path last spring has been crucial. We had a good meeting, everything was discussed, education, social life, Jaden, reading, speech and plans for the future. It sounded like we were boasting but there was so much to tell of Fred’s progress and how proud we were of him, the effort he has put in to get himself better. Cathy though was only delighted and for once we had a meeting with her that didn’t involve tears.

The same was true of the meeting with Dr Amre. He was astounded by how much Fred has come on, the changes in a year he thinks are little short of incredible. As both he and Cathy said, we are with Fred all day and don’t always notice but to them he’s a different boy. Suzanne put up Fred’s VNS to the next level and it may be that he will stay at that output for a while. The VNS, at a good level, may take time to show all its benefits so it might be worth leaving the machine do work over time. Both Suzanne and Dr Amre were conscious too of preserving the battery life and if the VNS can do a job at a lower level, so much the better. Fred’s output is at about half of what Temple Street considers a maximum; there is plenty of room if needed. For now we may just let time do its job.

After the meeting we had lunch in Fred’s favourite cafe, The Basement Cafe, in the hospital. He feels safe there, knows where everything is and the food is good. Coming on 2pm we left, the man at the desk called a taxi and before we knew it we were on the 3pm train back to Tralee. The train was packed but we found a seat. Lisa slept; Fred drew pictures and even looked out the window for a while between watching YouTube. We were home by 6.45pm, Ruby was waiting for us and the family was in bed by 10pm. I tried reading but my eyes were too heavy, Fred was already asleep beside me and soon I joined him. All in all a very successful trip and first proper train journey for our Fred.

Now he’s downstairs having lunch. The estate is quiet; all the kids are in resting after the morning. No doubt Fred and the friends will be out later, playing in the sun and having go-kart races. Just like any normal day. In fact Fred’s legs are covered in plasters; he managed to fall a few times and grazed the knees, just like any other little boy.

The chocolate from the bunny and the cuddles from his Mummy will help the healing.

I might go look for some of that myself.

 

 

 

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Posted by John Verling

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