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

29Jul/120

Cheesecake and Buzz Lightyear

It’s a Sunday afternoon in Ballyard. Lisa has gone out on her own, something very important for her, rarely done. She needs to get away from it all, get a bit of a break from the constant Freddie watching. More importantly almost, to me, is for Lisa to come back to a conscious Fred. Too often in the past she’s gone out shopping or whatever only for Fred to be hit by a seizure and to be laid out on the couch when she comes back. As a result, she doesn’t go out as often as she should or if she does she can’t relax, worried about her little man at home. Now, with some of the improvements of the last few weeks she can feel a bit more relaxed about going out, even if she won’t go further than ten minutes away in case she gets THAT call from me. As she left today, looking gorgeous, I said, “See you in the A&E!” which at least she laughed at…hope my attempt at humour doesn’t backfire.

Yesterday Lisa remarked that I always say in my piece that she’s “under the blanket reading her kindle” and that people reading will think that’s all she does. Well anyone who knows us will know that Lisa does everything in this house, spends her days worrying about Freddie and caring for him when needed, while at the same time making a happy home for us all. If she gets time to read her kindle, its time well deserved and the reading has helped keep her sane through these last few months. Sure there may be times when the cabin fever overtakes her and she uses language that no lady should ever hear, not to mind ever speak, but the fact she has kept sane these last few months is a testament to the woman I love. Even now as she’s out about in Tralee on her own she’s decided to go visit the mother of a friend who’s laid up in hospital. What more can I say…

It’s been the usual busy week for us all. Ruby went off toWaterfordlast weekend and is showing no signs of coming home. It’s great that she has a second home to go to, to be loved and looked after by her Aunties Clare and Rudi. The fact that she has little to say on the phone and is looking to stay another week is great, she’s getting a holiday from all this. The house however is very quiet without her. Since she’s been on her school holidays she’s colonised the place, had friends over and brought life to our little spot in Ballyard. Sure, she’s been grumpy, fought with her Mum but most of the time she lightens up the house and the place is just too quiet now that she’s gone. This morning Freddie was in the kitchen with me, helping me get breakfast when he climbed up on the shelf beside me. There was a photo of Ruby by the window, an old one of her rowing a currach, smiling up at the camera. Fred studied it, looking at his sister with those sad eyes of his…

“I miss my sister” he said, tears in his eyes “I wish she was home...”

In order to cheer him up I made his dream breakfast, one we’d talked about that morning in bed and he ate it with gusto. The poor little man should be down inWaterfordtoo, running about with his cousins, having a great summer instead of being cooped up here waiting for a seizure or two to hit him.

So it was this week. On Monday, after a Sunday of sleeping and fighting the confusion in his head, a seizure broke through. It was about 4.30pm, after another long snooze and it burst out of him as he was lying in his mother’s arms. Lisa said it was a real angry one, not a big one, the usual minute long event, but it was with a vengeance that it broke through. Freddie’s head really shook and a deep roar came from his lungs as the seizure that had been denied over the weekend expressed itself. If there is any good to come out of it, maybe again it’s a sign that the Tegretol is doing some sort of a job and almost holding it all in. Lisa gave him the Diazepam as usual and he was in a deep sleep by the time I got home at 6.30pm. He slept for a while and eventually woke about 8.30pm, hungry and confused. After a bowl of rice with Soya sauce and olive oil, he watched a bit of a DVD before falling back asleep. The diazepam and seizure combine to leave him very sleepy and after coming to bed with me at 11.00, he slept all night. As is our usual routine, Lisa came down to wake him at 6am, in case a morning after seizure struck and took him downstairs to snooze until breakfast time. When I came down at 7.30, he was awake, watching a movie and looked as if he didn’t have a care in the world, which in fairness is how anyone would want their kid to be… The starving little man devoured his breakfast and our day began. Throughout the day, as is now our normal routine, I rang home for updates and all was fine, he slept through most of it. The downside of him sleeping all day was that he wasn’t tired by the time we went to bed in the evening…by 1am he still hadn’t caught the night train and I drifted off. A few minutes later Freddie woke me up…”stop snoring Dad, I’m trying to sleep!” So I sat up and let him cuddle up to me and within minutes he was asleep, sending up zeds as my Dad used to say.

Wednesday was my birthday and Freddie had it all planned. There was going to be a cake, candles, balloons and singing “happy birthday”.  After I left for work, Lisa and Fred went off to get the ingredients for the New York Cheesecake recipe she’d promised me. They started the baking in the early afternoon so as to be ready for my return in the early evening. After work, still in Dingle, I got some cheese and crackers from the “Little Cheese Shop”. The plan was for a party, so I got a nice bottle of beer and some crisps for a the picnic in front of the TV later on, Freddie’s favourite. The big party Freddie had arranged for me was coming together.

Coming in the door at 6.30 it was all too quiet. On the couch Freddie was lying out in a deep sleep, Lisa looked at me in that rueful way we’re all too used to now. During the baking, Freddie had gone in to sit down and within a couple if minutes Lisa heard that horrible sound of a seizure coming on. She couldn’t believe it, didn’t want to believe it and rushed in to take care of the man. My birthday was ruined, at least the plans Freddie had made for me were ruined, at my age birthdays are no big thing but Daddy’s birthday was a big thing for Fred. He wanted me to have a great one, with cake and everything. On the mantelpiece was stuck a painting Freddie had done for me of balloons, celebratory ones he’d done for the birthday party. It may have been the excitement of it all, it is one of his triggers, but epilepsy just can’t leave this man alone.

In the kitchen was the cheesecake, despite everything Lisa had made it for me…
After dinner, Freddie woke up and had some dinner for himself. Lisa got me a slice of the cheesecake, with cream and strawberries. It was only delicious and at least Freddie got to see me enjoying it, even if he was doped to the hilt. After a sup of my beer and a couple of crisps, he snuggled into his mother and slept the night away…

My sweet boy wanted me to have a great birthday; all I wanted was for him to be seizure free for a few days.

If I had but one birthday wish…

Now it’s Sunday evening, four days seizure free and we’re cuddled up watching Toy Story 2. His mother still hasn’t come back but Buzz Lightyear is keeping us all safe.

To infinity and beyond….

 

 

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Posted by John Verling

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