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

29Dec/130

Thank You 2013

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My internal sleep clock is all over the place and has been since the beginning of the school holidays. In our house we’re used to rising about 7am each morning, breakfasting and out the door with Ruby by 8am. Through the dark mornings we’ve been doing it, Fred coming down yawning and rubbing his eyes, Lisa looking like she just stepped off a catwalk and Ruby just being wonderful. For the last ten days nobody has had to get up and so our sleep-ins have gone from a luxurious 8am to a decadent, self-indulgent sometime beyond 9am. This morning Fred and I put our heads over the duvet at just gone 9.50am. The side-effect has been that I’m waking almost every night about 3.30am and lying awake for a couple of hours. For Fred it means that he can’t fall asleep at night; last night he was still awake at gone midnight, the night before he was wandering the house at nearly 1am and getting short shift from his sister when he disturbed her sleep.

As I was awake at 6am, I got up to give Freddie his medicines. This morning routine goes off like clockwork. Lisa normally comes in with the tablets and glass of water, Fred rouses himself, knocks them back and we all fall back to sleep for the next hour.  Today he roused himself, didn’t seem to take much care that it was his father and not his mother with the little cup of tablets, drank the glass of water and rolled over again. In I got beside him and just as I was getting comfortable a little voice spoke in the dark...

“Dad?”

“Yes...”

“I love you,” and with a loud sigh he rolled over, wrapped himself around me and continued his big sleep.

The one thing Fred definitely isn’t short of is love.

This week we’ve had Jaden over twice. On Monday he came for a pre-Christmas afternoon and yesterday he was around again for a post-yuletide catch-up. Before Jaden arrived on Monday we got a surprise visit from Denise, Fred’s SNA at school. She hadn’t had a chance to give Fred his present as he’d keeled over before the last day. Freddie was delighted to see her and gave Denise a big hug. Lisa mentioned that Jaden was coming over and Denise spoke of how upset Jaden was when Freddie had the seizure at school. Apparently when Denise had gone into the classroom to get Fred’s gear Jaden was full of tears, worrying about what had happened to his friend outside. It makes me cry just to think of it.

Once Jaden came around he was smothered in love by Fred. They cuddled up on the couch, under a blanket watching YouTube videos and the TV. They seem to get on very well, Jaden does his thing and Fred does his. Sometimes they will play battles and at others Jaden will play an online game while Fred watches or has a DVD going. At one stage on Monday I looked in at them and Fred was putting Jaden’s arm around him, just so he could get closer, Jaden didn’t seem to mind. Our man stayed until about 7pm, a good six hours and he didn’t want to go. He did leave eventually with a tin of Lisa’s homemade cookies and a card from Fred.

Yesterday Fred and I went round to collect him. Once we had him in the car Fred climbed into the back to be closer. The two laughed and spoke about what they got from Santa Claus. I took the long way home, just so I could listen to then chat in the back. In the mirror I could see them as close as they could be, looking at Jaden’s tablet, a Santa present. Looking at Fred, totally at ease with his friend was a lovely sight and then Fred topped it by saying...

“You’re a great friend Jaden.”

My eyes filled so quickly I nearly had to pull over to wipe them clear.

Back home the presents were shown off and Fred had done well.

In fact we had a great Christmas Day...

Last year Fred had been up by about 6am but this year I had to wake him at 8.30am. We called upstairs to Ruby and the whole family crept down to see what Santa had brought. The tree at the foot of the stairs was all lit up and two big sacks had been left underneath. Fred dragged his into the front room and emptied it out on the floor. All he’d wanted was there, Ironman, Wolverines, Batman, Godzillas and Ultramans. Santa even remembered a bottle of his favourite pink lemonade and a new pair of pyjamas. The pyjamas were quickly tried on for size and the lemonade put in the fridge for later. Santa was good to Ruby too and even the Daddy got a few special presents. For the rest of the day we ate, drank, played, watched movies, read and just had a lovely time. Fred seemed to go for the Godzilla Rex as his favourite and carried him everywhere. However later in the day, after he’d lined them up on an armchair I asked him which was his favourite...

“They all are,” he said, looking from one to the other.

Now a few days later, Lisa has finally managed to get the new PJs off Fred and into the wash. We have had a wonderful week of it and there is the excitement of Auntie Claire coming for a night. For Fred it’s been a great holiday, as it has for all of us

The New Year is on its way and it is a time of looking forward and of reflection. This time last year we were in desperate straits. In fact I think this day in 2012 I wrote to Dr Amre, imploring him not to forget us; he had made contact with CUH only just before Christmas saying he wanted to take on Freddie as a patient. Little did we know then of what an impact he would have on us and how his influence would lead to so many highlights in 2013. Without the guidance of Dr Amre, the great times of 2013 may not have happened as we would not have had the belief to even contemplate them happening.

Among these highlights, and in no particular order would be

  • Visiting Temple Street for the first time and meeting with Dr Amre...it’s led to everything since.
  • Our monthly meetings with Dr Cathy Madigan and her putting us on a path to recovery.
  • Fred going back to school.
  • Jaden coming over for the first time and every time since.
  • Denise as Fred’s SNA.
  • Blennerville School and how they care for Fred.
  • Elaine Stapleton taking over as Fred’s home tutor and hearing the laughter from the front room.
  • Uncle Bill coming over on his motorbike and giving Fred a spin around the estate.
  • Aunty Ella and Ben coming for numerous visits; making visits normal again.
  • The visit of Aunty Claire and Rudi in February and having the house full of chat.
  • Our visits to Inchicore; the love and welcome from Cathy and Conor still makes me cry as I write.
  • Going to the beach for the first time in years.
  • Me going for lunch in Cork with Denis, Brian and Cuzzie and not worrying myself sick.
  • The trips with Ed Galvin which were fun filled and not full of worry.
  • Small things like going shopping with Fred.
  • Family drives.
  • The VNS implant and what it may mean.
  • Fred fighting with his Mum over doing homework and having to go to school.
  • His bus trips to the museum.
  • Having the Swains for lunch.
  • The welcome we get at Temple Street every time we visit.
  • The good wishes from everyone.

I could write forever but all these normal events are highlights because last year they would have been beyond us. The idea of doing any of them wouldn’t have even occurred to us.

To all who made our 2013 so wonderful, thank you.

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Posted by John Verling

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