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

8Sep/130

Tow Trucks, Taxis and Tears

On Monday I was getting Fred ready to take to school. As part of trying to give him independence, of not having Mummy and Daddy forever fussing over him and to get him to do things for himself, I leave him alone in the front room to get dressed. While he’s doing that I make his lunch and tidy up the kitchen. Normally after a few minutes I get the call to help, sometimes he’s dressed and Fred only calls me say he’s ready. That morning Fred was quiet and when I’d packed his bag he shot into the kitchen to grab it off the table. He was almost fully dressed, no shoes on though and I gave him a minute or so before following in to the room. When I did he was hanging over the back of the couch, rummaging in the toy boxes...

“What are you up to?” I asked.

“Oh, nothing my Dad,” was the answer, the hand pulling the school bag under his belly but not turning his head to look at me.

A couple of minutes later we were heading for the car and as I fixed the straps of his bag on his back I noticed that one of the zips wasn’t closed fully. In that pocket I could see his space guns, shoved to the bottom, hidden from view.

In the car he was quiet; then he said...

“I don’t have any guns in my bag Dad,” looking at me with those ever innocent brown eyes.

“Hmm,” was all I said in return.

Later that afternoon he joined me in my office. He dragged a chair from Ruby’s room and sat at the desk watching something on YouTube, headphones on so as not to disturb Daddy. After a while he took off the headset and turned to me...

“Dad...”

“Yes?”

“There’s a problem....”

“Yes?”

He scrunched up his shoulders around his neck and took a deep breath...

“I have to tell you something...”

“Yes.”

“I’m sorry but I have to tell you I took my guns to school, it was an accident,” as he confessed he threw his arms up in the air, palms out flat and the lower lip even out further.

The poor man, it had obviously been on his mind all day and now six hours later he couldn’t hold it in any longer.

Not a man to take on a bank job.

This has been a tough week though for all of us.

On Thursday we had an appointment with Professor Mary King at Temple Street. Prof King is our Dr Shahwan’s mentor and the person he claims taught him all he knows. High praise indeed from the man Lisa and I adore for all he’s done for our Fred. Amre wanted MK, as she is known, to do a full overview of Fred’s case, run an independent eye across everything and give her opinion. Vital input for the upcoming surgical consult meeting. Very importantly too he wanted her to check for any underlying genetic disorder or metabolic problems that may be causing Fred’s epilepsy. Amre couldn’t go into the surgical consult without this work being done, as it may be one of the first questions asked. There would be little point putting Fred through surgery if his epilepsy is being caused by other factors. Also Amre had noticed a ‘slowness’ in Fred’s EEG brain readings, a slowness that couldn’t be explained by medication use and continued seizures alone.  MK is recognised as being an expert on childhood neurological problems and getting her to cast a cold eye on Fred’s case was a sign of how much of a perfectionist Dr Shahwan is, how he covers every angle.

We set off for Dublin on Wednesday. The idea being that we’d get a night with Conor and Cathy and arrive fresh for Prof King Thursday morning. As it was likely to be the last sunny day of this current round of trips to Dublin, we left early and took the scenic route to Limerick, the coast route via Foynes. The weather was gorgeous, the scenery lovely and we drove along, chatting as we went.

As we drove onto the motorway at Limerick I was sorry to leave the easy going trip along the Shannon behind. The motorway is great but can be a bit boring. We were making good time; all was ok with the world. Then, somewhere between Nenagh and Moneygall, I changed gear to move out to the fast lane when nothing happened. The gear stick moved but the car started losing drive, it wasn’t responding to the accelerator. At first I thought I was imagining it but as I pulled into the hard shoulder the car was shuddering and came to a full stop. The engine restarted first time but the car wouldn’t move.

We were  halfway to Dublin in a broken down car.

Luckily I’d taken up Audi’s offer of a year’s free roadside assistance and I rang the freephone number. The guy was very helpful and said that they would look after everything but it may take up to an hour to get us sorted. Luckily it was a warm day. Fred and I got out and sat on the steep bank, watching the cars go by and throwing stones into the deep grass. Lisa stayed in the car, reading her Kindle. Every now and then I’d get a call, updating us on what was happening, eventually I got one from the tow-truck driver who was somewhere outside Toomevara and would be with us by about 5 O’clock.

We ate fruit and rationed the one bottle of water we had. The cars sped by, the noise was heavy and the heat off the tarmac was strong. Fred kept asking where the repair man was, he was anxious to get to Inchicore.

Then he said to me...

“Dad, I think I have the confusion.”

I got him down of the bank and into the car, into the loving arms of his mother. Typical Fred, what a time and place for the poor boy to feel a seizure coming on. Lisa laid him out on her lap and he was asleep in seconds. As Lisa pointed out, maybe the concentration of car noise had sent to brain into overdrive. We closed the doors to lessen the noise but it was so hot we had to open the windows on the bank side.

About 15 minutes later I saw the tow-truck arrive. Fred popped his head up to see, the confusion had passed, or so he claimed. The driver, Mark, was a lovely fellow and could see immediately that not all was well with Fred. He put Lisa and Fred in the cab of the tow truck while we tried getting the car up on the back. Mark managed to drive it up and soon we were on our way. In the truck he rang his HQ to report that we would need immediate help as we were travelling with a sick child. In fairness to Fred he did look a bit wrecked, both from the heat and the confusion. It was a tight cab, all four of us were squashed in and there wasn’t any air conditioning.

A seizure now would be just perfect I thought to myself.

Mark got us off the motorway; he’d gotten a call to say that he was to take the car to Limerick and that there would be a rental car waiting for us there. As Mark explained our situation they told him to get us a taxi for the journey. So in Nenagh Mark had a taxi waiting, we unloaded the car into the back of the lovely, cool, air-conditioned BMW and headed for Limerick.

Fred was sitting up now but Lisa and I decided to head for home. Freddie wasn’t having it; he wanted to see Conor and Cathy. At 6.30pm, five and half hours since leaving Tralee we got to the rental place. Luckily I had my driving licence with me and by 6.45 we were sitting in the new car. Fred, delighted to be on the road again, sitting up beside his mother. After a bit of discussion and checking Fred over, we decided to continue to Dublin. The next day’s meeting was too important to miss and Fred did seem to be over the confusion. We grabbed a quick ‘dinner’ from Burger King and ate it in the car, back on the Motorway. Fred sat up for the whole trip, looking out at the evening views and was delighted when he saw the lights of the city as we approached Dublin.

In Inchicore we knew we’d done the right thing, all our troubles slipped away. We arrived bang on 9 O’clock but the welcome made us forget our tiredness and we put the trip behind us. It became a story to tell. Many stories were told, we laughed, we ate and we drank some wine. Freddie watched a DVD until about 10.30pm when he and Mummy went off to bed, only after kisses from his Conor and Cathy.

All in all not a bad end to an eventful day.

On Thursday we were in Temple Street for nine. After signing in we went down to our favourite cafe in the basement for breakfast. Mark rang to say he’d dropped the car off and I thanked him again for all he’d done for us. Lisa and I were nervous about the meeting, Freddie didn’t want to meet ‘Mary King’, he wanted ‘Cathy Madigan.’

As it happened Cathy Madigan joined us in the meeting. From the beginning you could see that Prof King was a formidable brain, someone who knew everything about their field, someone you could trust. She did many, many tests. She had Fred hopping on one leg, jumping around, spoke directly to him and more importantly ignored the parents. Fred was her subject, she wanted to get her judgement from her questions and Freddie’s answers. She swopped opinions with Cathy as she went, drawing on Cathy’s months of time spent with Fred, always thinking, always assessing.

When she finished she laid it out for us. She didn’t think that there was any genetic disorder and gave us many reasons for this opinion. To confirm her view she was ordering a series of blood tests, just for the record really but also to be definite.

What she was concerned with was the slowness of Fred’s EEG readings. This correlated with what she had garnered from her own tests and from Cathy’s work. She believes that Freddie has a learning disability but cannot say if it’s from the damaged part of his frontal lobe as identified by Dr Shahwan or if it is separate from that again.

Only surgery will tell.

Either way it’s going to be a long struggle to get Fred’s brain functioning fully.

After the meeting Cathy took us to her room for a talk. She explained that Prof King’s findings were very positive, if there was a genetic disorder the prognosis would be a lot more serious. Cathy outlined how tough a road Fred will have in front of him, but also how much we already had in place, how much work had already been done. Fred was back in school, he’d had the months of brain mapping as done by her and the resource teacher had being appointed for one-on-one learning.  He’d even had Jayden over to play. The Temple Street team is in place to start work immediately on Fred, once the surgery is done.

That decision we are waiting upon.

This is a difficult time for us. There are many variables at play and much won’t be known till Fred has his surgery. We are pinning all our hopes on the team saying yes to Dr Shahwan’s case and he reckons the meeting will happen in early October. Amre has covered every angle in preparing Freddie’s case and we really feel the Temple Street team is behind us every step of the way.

In the car home Lisa shed a few quiet tears; it had been a tough morning.

“Don’t cry Mummy,” said Fred, wiping away the tears, “Mummies are for looking after their little boys, not for crying.”

Oh my Fred, you have such a beautiful way of lightening your parent’s load.

 

 

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Posted by John Verling

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