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

27Apr/140

Away From Fred

This week for the first time in a long time, I voluntarily spent a night away from Fred. It must have been at least five years, possibly Ger Flood’s wedding, that I last dared socialize away from home. On this occasion it was Conor’s fiftieth and the chance to celebrate with friends was just too good to let pass. So I made the trip to Dublin, surprised by how relaxed I felt, how far we’d come and I really enjoyed myself. Fred on the other hand cried because he missed his Daddy, the boy knows how to pull on the heart strings.

When I came back last night the hugs and cuddles nearly knocked me off my feet. As we cuddled in bed, my eyes heavy from not sleeping, Fred kept up the emotional warfare...

“I missed you my Dad,” he said, “I don’t want you to go away again, I missed you so much.”

Surprisingly though I was quite relaxed. My worries I pushed below the surface, knowing that Lisa was in charge. Though each time the phone rang I got a fright and each time I called Lisa I listened not to her beautiful voice but to hear sounds of Freddie in the background, just to know that all was fine in Ballyard. All was good; the man was fighting with his Mum, going out playing with friends and getting confusion.

His Daddy too was going out playing with friends, laughing, eating, drinking and telling stories; giving him a different type of confusion on Saturday. Thankfully the train trip back to Tralee gave me a chance to recover and enjoy the evening at home, though we were in bed by 9.30pm, asleep by ten.

This last week of the Easter holidays has been great, passing all sorts of records for normality. Fred has been playing each day with the kids on the estate, they were even calling over to ask him to come outside. Fred loved it but for some reason or other he kept getting confusion. One of us would be keeping an eye on him, checking on him from time to time and at least once a day he’d have to come back inside for a rest. In a way this is great, he’s getting the warning signs, heeding them and resting up until the worst has passed. You can tell all is not ok as he turns for home, almost dragging his feet and has a lost look on his face. A short snooze on the couch, a swipe with the magnet and he’s out again. We both worry, want to keep him in but we know we can’t, we have to let him off, doing what he loves doing.

Once again he’s got all the kids into digging for dinosaur bones. Fred dragged my old tool box over to the rocks and before we knew it all the kids were banging away with him. After a few close misses I took the two claw hammers back, being responsible for creating a batch of one eyed kids was just too worrying. Jaden was over a few times as well and he seemed to enjoy it as much as the others. Our Jaden also came up with the idea of giving his phone number to Lisa so that when they are out, Lisa can call the man for reassurance. Such a good idea and I don’t know if he did for practical reasons or just the make Lisa feel better, but what a sweetheart.

It’s funny how much Jaden has become part of the household. He just breezes in and relaxes us all while he relaxes too. Jaden likes his curries hot and shares mine with me, he likes to chew on a coffee bean and have a mint tea while watching TV. This week he even began to reprimand Lisa for leaving her phone in the bathroom or for having it covered in make-up, all done with a smile on his face.

On Thursday evening I took him home at about 7.30pm. He was upset to be going but I explained that as I was collecting Ruby from a match it made sense to do the two at the same time. At the match they were only mid way through the first half so I turned around to drop Jaden home...

“Can’t I go back and play with Freddie?” he asked and I wanted to but it was getting on to 8pm so I drove him home. A very quiet boy got out at his house, upset at his day being cut short.

Even though Fred is on holidays Lisa has been trying to keep up his school work. This makes perfect sense as he is as likely to forget what he’s learned and he made such good progress up to holidays, it would be a shame for him to slip. Of course this met with a lot of resistance and he managed to get out of it most days, between playing and confusion attacks. Though a couple of mornings he did his work and did it very well.  We’ll see how that continues with Denise and Ms O’Se tomorrow...

There are times when I look at Fred, especially when he’s with friends, that I think about the dual task of being Fred’s parent and his carer. Usually the roles are merged into one but there are times that he is Fred the boy with epilepsy instead of being Freddie my son with epilepsy. The father wants him to have a great life and also wants to protect him, nothing unusual in that but the carer only sees Fred as the boy with epilepsy. When Fred is out playing with friends, or even when he’s in watching a movie it strikes me I miss that he is the boy being himself, the Freddie that we all adore and I only see the epilepsy patient. In a way, the years of living with epilepsy have done that and the advances of the last year have let the son come to the fore again.

The fact that Fred has come through all the changes in his life and is even more determined to have a normal life is testament to his strength of character. There are many, many times I’m reminded that he is too just a normal kid, looking for a normal life. Though I know he is strong, it will take enormous strength for him to achieve his potential. This strength he has, it’s his Dad’s reserves that are under pressure, and if anyone can get us through it will be Fred, with Jayden pushing us on...

This week Fred mastered what he called the CarBike. A sit down, three wheeled go-kart with a front wheel which you peddle and you steer by leaning from side to side. For the first day he wasn’t getting anywhere but by Sunday afternoon he was whizzing around the estate, careering around corners and parking up outside the house like a Lewis Hamilton. Lisa and I loved watching him, though filled with trepidation.

This was our boy being a boy.

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Posted by John Verling

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