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

31Mar/130

The Easter Bunny, Wild Garlic Pesto and The Special Bus

Freddie starting talking about the Easter bunny this week. I don’t know why,  I can’t remember it being mentioned it before and the only time Ruby had an interest was when the wonderful Lorna Swain used to do an annual  egg hunt, many years ago.  The origin of the Easter bunny, I looked it up, seems to lie with German Protestants, which would explain why he didn’t figure much in my own childhood.  What I do remember was the line of Easter eggs on top of the piano, and me waiting for Easter Sunday, so I could break my Lenten fast. Eggs would be sent out from Granny and other relations in Cobh plus the one my father would get in Cork. They were then put on display, laid out, tempting me for the week before the big day.  The smell of chocolate still brings back memories of walking into that room during those days before Easter.

It’s a mark of Fred’s innocence that he chose to believe in the bunny. But also it’s a sign of how, when he gets something in his head, that he just can’t let it go. Whatever the current obsession is, he’ll go on about for ages and ages and ages. Usually until he drives his mother to breaking point. Sometimes he gets two obsessions going at a time and we have to threaten one never happening to get him to stop talking about the other one...

If you were outside our house during the week you’d probably have heard lines like...

“If you don’t stop talking about the Easter bunny there will be no metal detector...”

Or

“If you don’t stop going on about that metal detector there’ll be no Easter bunny...”

If Lisa was the one saying them you could probably insert a few expletives as well.

The metal detector obsession is my fault. Fred likes nothing better than going through catalogues and I got him one from Argos this week. He couldn’t go to bed without his “magazine” and he’d sit up looking at what he wants to get. I always wanted a metal detector too so maybe when all this is behind us the two men in the house might get a treat.

For the meantime he’ll have to be happy with the picture but at least he got an Easter egg. From the moment he woke up this morning he was looking out the window, under the bed, in the cupboard. He nearly walked into the wall on the way out of the bedroom because he was looking over his shoulder to see if he’d missed anything. In the kitchen downstairs he was looking everywhere and I could see him getting more and more anxious. Then I pointed to a bag on top of the cupboards and the look of excitement was only wonderful.

“Jesus Christ,” he said looking into the bag, Freddie appropriately mixing religion with commercialism for the day that was in it.

All this has come at the end of a busy week for us.

On Tuesday Fred had an appointment at Temple Street. This is part of the assessments that are needed, so we know where he is with regards to returning to school and also what the effects of any possible surgery may be. There will a few of these over the coming months and it’s all part of getting Fred back into normal life, whether normal life is ready for our Fred is another question again.

As the appointment was on Tuesday morning, we headed up on Monday evening and stayed with Conor and Cathy. This was a major thing for all of us. We’d stayed in a hotel the last time and this was Fred’s first time staying in another house for maybe four years. Plus he loves Conor and Cathy and has being asking to go stay with them for a while now. Another of his obsessions. Heading off on Monday afternoon the car was so loaded down with homemade breads, cakes, beer, and wines, not to mention the wild garlic pesto and Lisa’s dill mayonnaise made from scratch, that you’d think Dublin hadn’t seen a food parcel since the lockout of 1913. It all added to the excitement for Fred and he was happy in back under his blankets. He never snoozes on these trips, just so happy to be looking out at the passing countryside and asking where are we now? Ruby sat beside me, iPod on and slept for a lot of the journey. Lisa was under her blanket reading her Kindle.

At Inchicore we had a ball. Fred had Conor all to himself, telling him stories and getting him to watch his Ben10 DVDs.  We were all having fun in reality. Lisa and I were relaxed, someway, leaving Freddie do his thing and not having to sit with him all the time. The wine flowed and the laughter could be heard back in Slea Head. There were stories told and embarrassing memories dug up, all mixed with a bit of sadness that we haven’t been able to do such things in a long while.  Lisa and Cathy were reminded how lucky they were to have landed Conor and me, as we were the kings of the Hillgrove dancefloor circa 1995.

When Freddie and I went off to bed about 10pm we were both knackered. Cathy got a hug and a kiss goodnight from Fred after she made him comfortable in the bed. The two of us chatted for a while, Fred looked out the window and I started to read...

“Dad?”

“Yes...”

“Can we stay in Dublin for a long time?” he asked.

Fred loves the fun more than any of us.

The assessment went really well. Lisa and I were worried, as he seemed very dopey that morning but at lunchtime , Cathy, the neuropsychologist, said she was very happy with him, that he was very alert. That little man, you just never know where you are with him.

As Lisa and Ruby had gone off shopping, Freddie and I went for lunch together in the hospital cafe. Cathy wanted another session with him in the afternoon. The cafe in Temple Street is in the basement and is very good. The two of us went down in the lift, queued up and sat down at a table on our own. As I told Cathy afterwards it was probably the first time Fred and I had gone out for lunch together in about five years. Thankfully it all went smoothly, another step in us getting a normal life back. On our way back up we met Dr Shahwan and I gave him an update on Fred’s progress.

 

As always with epilepsy it’s never too far away.

We got home safely on Tuesday and got back to our usual lives on Wednesday. As I came in the door about five o’clock I could see Lisa lying an unconscious Fred out on the couch. He’d gone out in the garden with his paintbrush to brush down the rocks and find some dinosaur fossils. Jurassic Park is a big influence in Fred’s life, in fact combined with Jaws, Steven Spielberg must be Freddie’s favourite director. The little man wasn’t outside more than a couple of minutes before he went into a seizure, exactly seven days since the yoga incident.

Another night of Freddie watching was ahead of us. Remarkably however he woke up within the hour and carried on as if nothing had happened. Fred had dinner, watched a movie and went off to bed as usual. What a relief for us. Whether this is a new routine or not we don’t know, but it probably isn’t, unfortunately.  At one stage during the night he asked “what happened to me, Mummy?” Poor little man just hates those seizures.

The rest of our week went peacefully, incredibly so since Ruby has been around all day and Fred usually sees this as a good chance of starting a row. He likes to start a row and then blame Ruby or his mother for everything, looking at me with a pleading innocence that would soften the hardest heart.

Just now I had to break up a row in the kitchen. Lisa trying to keep him away from the fridge had to threaten with calling the special bus. The one that takes naughty boys away, I used to be threatened with Upton Industrial School so maybe just a bus is an improvement...

As I reasoned with Fred and used my cross eyes, Lisa went inside. After Fred calmed down, he followed her. I watched him go; he took Lisa’s phone and hid it under a load of cushions.

He wasn’t taking any chances on that special bus not working Easter Sunday...

 

 

 

 

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24Mar/130

The Yoga Incident

For the last week or so Fred has been asking me to get tattoos for him. The press-on type, not the full needle mermaid across his chest that he may choose to get when he’s older. As with all his obsessions, wolverine claws, Thor hammer, having Conor on a sleepover, he goes on and on about it for ages, and then stops for a while, before taking up the pestering again. When the pestering fails or his Mother tells him, in no uncertain terms, that what he’s looking for is an impossibility, he’ll stop. Usually this is followed by deep sighs and an ok, the sad face capable of breaking a million hearts. His one trick, before the pestering goes too far, is to throw his hands up in the air and sigh a lot. When asked, he’ll reply in a heartbroken little voice … “I’ll never get those...” Just his way of giving you a gentle reminder…

On Friday I got the gentle reminder and on the way home from work I popped into a shop that sells everything from toys to religious memorabilia. They had a choice of pink princess or pirates. Knowing my boy as I do I got the pirates and headed home. The look of delight on his face was worth a dozen Euromillions. Pirates, sea serpents, swords and ships were applied all over, and I have to say his mother looks hot with her tattooed arms. We all went to bed Friday night covered in tats.

About two in the morning, Fred woke up screaming…

“Oh Daddy I had a bad dream,” he cried, “a terrible nightmare.”

I asked what had happened.

“The pirates were chopping me up with the big swords,” he said before drifting off to sleep in my arms.

I don’t know if it’s the meds or his powerful imagination but Freddie has some great dreams and gets nightmares from the most unlikely sources.

On Wednesday evenings Freddie does yoga. An idea of Jillian’s and going is part of our trying to get back to normality. With the encouragement ofTemple Street, we’re trying to get back out in the world and not let the epilepsy imprison us in the house. Fred goes with Lisa and Jillian but Mummy isn’t allowed near him once he gets to the centre. It’s his thing and he likes doing his “exercises” as he calls the session.

The three set off and I went shopping.

When I got back, the others were just arriving home. Far too early. During the yoga Fred had got a look in his eye, Lisa, though not next to him was still watching him like a hawk and knew the signs. Apparently without notice, she swooped in and took him off to the car. Jillian, who’d never seen Lisa in action in these circumstances, did what she was told and drove the two home. On the way Fred had the seizure in the back of the car. Lisa the wonderful, caring woman that she is, saw it coming, she knows her boy inside out. Jillian was amazed by the whole event but it came as no surprise to me.

Inside, Freddie was lying out on the couch and we settled in for a night of watching him. Since the cluster of last week, we’d feared this night. We knew that only time would tell if the bad cluster was a one off or if we were back to the regular hospital visits. Though we weren’t talking about it, we both knew it was on our minds. Lisa had put up his Tegretol dose to try increase the levels in his system; maybe get some control of things again. The downside of this is that he can be very dopey when on an increased dose; it takes the body about ten days to absorb the change, to get used to processing the extra medicine.

Every move he made made us jump. The first hour is always crucial. By about 7 O’clock the first hour was over and we could relax a bit. I made dinner for Ruby and myself, trying to get on with things, hoping that the cluster wouldn’t develop.  Freddie woke up about half eight, dopey but hungry…”where’s my dinner?” he asked. Phew.

The rest of the night went smoothly. We went to bed after watching a DVD and Fred slept a good comfortable sleep, no nightmares.

At 6am though, he woke with a seizure, quickly followed by another about twenty minutes later. Two full blown, minute long, tonic-clonics.

As Ruby had to go to school, I carried on and Lisa stayed with the boy. By the time we left about 8 O’clock, he was sleeping in his mother’s arms. Maybe his morning meds were taking over, slowing things down.

At work, I called home and he’d had another tonic-clonic. The same as the two he’d had earlier.

It just doesn’t leave him alone.

When I got back for lunch there was Freddie sitting up on the couch, a plate of food in front of him.

“Hi Dad,” he waved at me, as if nothing had happened.

I just love how he gets on with life.

After work I went off shopping and coming out of the off-licence, a text came through from Lisa…

“He just had another tonic-clonic,” it read.

Talk about a kick in the teeth, one would have thought by that stage the seizures would have left him alone.

He was asleep by the time I got home but thankfully, he didn’t stay asleep for long, maybe the hunger took over. We spent the night watching him again but it seemed that the five o’clock seizure was a parting blow, just a reminder that the epilepsy can strike at any time.

Now it’s Sunday morning. Ruby is on a sleepover “back the west” and the two men are on the couch. We had the Sunday morning big breakfast and my hero is laughing it off watching Austin Powers. He never tires of the jokes.

Freddie is looking forward to Hannah coming over for the night.

No doubt he’ll show her his tats.

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17Mar/130

Ten Rounds With The Incredible Hulk

It’s St Patrick’s Day and the two men are home alone. Freddie and I are cuddled up under a duvet, he at one end of the couch, me at the other. I’m trying to write this on Ruby’s little 10”netbook, as Fred is happily watching YouTube videos on my laptop. Before I could use this netbook, I had to deep clean it of make-up and food droppings. It’s amazing how a girl who puts such effort into her personal appearance can have such a manky computer.

We’re alone as the ladies have gone off to Dingle, for the Parade, and all its social extras. It’s not about seeing the parade, its more about who you will see at it. Phonecalls have been made and coffees arranged. It didn’t take them long but they both look stunning heading out the door; if there was a competition for most beautiful mother and daughter, Lisa and Ruby would have it in the bag before leaving the house. I wonder will they make it past the first roundabout…at least Hannah and Tara are with them, so the rows will be kept to the odd bark.

Hannah and Tara came for a sleepover last night. As always, it was great to have them around and Fred was in his element drawing pictures as presents and getting the girls to join in his games. For dinner they all cuddled up on the couch, Freddie in the middle of the girls, happy out telling stories and devouring his chicken wraps.

The little man is a bit doped again.

After a good ten days of a bright, alert and full of fun little boy, Fred got hit by a terrible cluster of seizures on Tuesday afternoon. We knew that something was on its way, ten days is a long time for Freddie to be seizure free. What we weren’t expecting was the ferocity of it all. After the joys of last week at Temple Street and the new regime of rolling with the punches, Tuesday really was a kick in the teeth.

I was home for lunch and Fred was at his homework. He was doing his tasks and I was watching. As always it came out of nowhere, he just slipped into a full seizure, the usual minute long horrible, horrible tonic-clonic one. Luckily, Lisa was sitting beside him and was able to hold the little man as he went through it. We put him on the couch, he was in a deep sleep and he cuddled up to Lisa, the safest place in the world for the little man. Lisa sent me back to work, we have to try get on as normal, not let the epilepsy rule our lives.

As I walked back the road I felt a little uneasy, worried but then I always worry. To keep my mind occupied I locked myself away in the news booth, practicing my voice projection.

At about 4pm I texted Lisa...

“He’s had four tonic-clonics,” read her text…

I couldn’t believe it; this was a ferocity we hadn’t experienced since August 2011. Lisa sounded very serious when I called; I packed up and hurried home.

At home, he had another one, not long after I got in. We gave in and gave him a shot of Diazepam in an attempt to stop the cluster. As it was nearly five, I headed off and collected Ruby.

Just as we got back, he had another one. That was it. Six is just too many, he was unconscious, this was status-epilecticus, a very dangerous situation. In a flash, Lisa was packed up and we were off to the hospital. As we drove over, the contrast with last week's high was all that was in my head, it couldn’t have been starker.

At the A&E I ran in to get a wheelchair... Fred was so zonked we couldn’t rouse him from the back of the car. Luckily, Peter, a nurse who’d been through this with us before, met me at the door. He knew from the look on my face that it wasn’t a social call. Pete got me a wheelchair and went off to ready a treatment room.

We rushed Freddie in and the team took over.

By the time I completed the paperwork in Admissions and got back to the A&E, Fred had another one. The Diazepam wasn’t working; epilepsy was definitely giving our man a good going over. He was so out of it that, when they put the line in for the Lorazepam, he didn’t flinch. Normally he’d wake and fight the needle to the last, making it even more difficult for the doctor to find a vein. Not this time though, the line was prepped and blood samples taken without so much as a peep from our boy. It was nearly time for his evening meds and we were anxious to get them in him before the Lorazepam was given, if it was to be needed. Lisa managed to rouse him enough to get the tablets in; he looked through me with eyes that had no focus, very upsetting for us.

I needed to move the car as it was parked in a no park zone outside the A&E. It’s a no park zone for a reason and I was conscious of blocking anyone else’s access to the emergency unit. So off I went and parked in the car park,  I took Fred’s bags up the Cashel Ward, there was no doubt he’d be spending the night there. Up on the ward I got the usual welcome from the nurses, they had his bed ready, as always next to their station so they could be at hand. We never can describe fully how assured they make Lisa and I feel.

Down in the treatment room they’d given Fred the shot of Lorazepam. A full adult dose, they know he can take it and it was necessary after he had his ninth seizure of the day. Now it was a matter of wait and see, he’d been stabilised and time for him to go up to the ward. Peter went with us and gave the team there a full run down of what had happened, before heading back to the A&E. Anyone who criticises frontline staff need only spend a couple of hours with the likes of Peter or our nurses on the Cashel ward to realise what a vital job they do and how they earn every last cent of their pay.

Lisa,  practical as always, sent me home to feed Ruby and get a list of things she’d forgotten in our rush over. I kissed and hugged our knocked out little man and did what I was told.

Ruby was well settled on her netbook, iPod and phone. All she needed was to be fed. After feeding her and packing up all that was needed, I headed back to the hospital. It was nearly 9.30pm, the whole afternoon and evening had gone in blur, I was sick to the stomach but had managed a bowl of pasta. On the ward, Lisa and I had cups of tea and toffees, anything to keep the strength up. Luckily the little warrior, the strongest, bravest man I know, was sleeping peacefully and seizure free. The Lorazepam was doing its job. An hour or so later I headed home to look after our daughter.

All Lisa and I could think of was what had gone wrong, why had this terrible cluster come back to attack our boy, the worst in nearly eighteen months. On my way home I reckoned it must have something to do with his Tegretol levels, if the level in his blood had dropped, then would he have had no protection against a cluster. Why it would drop was another question.

On Wednesday morning, I drove Rubes to school and was on the ward by about 9.30. Before heading to Dingle I’d rung Lisa, they had had a peaceful night and Freddie was still sleeping. When I arrived he was awake, trying to watch a DVD, but was so doped he didn’t know if he was coming or going. I’d brought some breakfast but he wasn’t even hungry, very unusual for him. The doctor and his team came and gave us the all clear to go home. Flap over, we were being sent home to recover; at least there we’d be comfortable and only five minutes away from the hospital, if needed.

On the way out I met Nurse Marie, she’s been on duty when we’ve gone through some terrible nights and it’s always great to see her. Thankfully for Freddie, and Marie, this cluster was all over and we could have a happy chat.

Funny how Freddie can bring you to the ends of the world with worry, then within hours it’s all behind him and he’s walking out as if nothing ever happened.

Of course he leaves his parents, Marie and the rest of the Cashel Ward feeling as if they’ve gone ten rounds with the Incredible Hulk.

Long may it be that way though, that’s what we’re here for…

 

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10Mar/130

The Candidate

Sunday morning and its very quiet around the house. It is always the same when Ruby goes on a night away. Yesterday she went for a night at Hannah’s, back in Ballyferriter, which meant I had to drive “back the west” with my darling daughter. It was good timing as it gave me a chance to catch up with Kev Moriarty, home from England for the weekend. It’s always good to catch up with an old friend, especially as our news has improved somewhat since I last saw him in early December.

While I was off travelling, Lisa took Freddie off to the beach. While it’s not exactly beach weather Freddie wanted to go and collect seashells. The beach trip is all part of the new policy introduced by Temple Street this week. On Wednesday we had THE meeting, the one that was to give us Dr Shahwan’s opinion on the tests carried out in January and early February. Dr Shahwan’s complete analysis on everything done by his team; scans, pet scans, psychological assessments, everything…

This was a presentation of their plan for Fred’s future. Lisa was dreading it; I tried not to think about it. Lisa was having sleepless nights; I was trying so hard not to think about it that I finished by book in record time. Appropriately enough, the book I was reading was “The Road to Wellville.”  After all the years of struggle we were going to hear if Fred was indeed a candidate for surgery, was he eventually to get some sort of life back?

Ruby came with us. This was an important time for the family, the most important yet and Lisa thought that she should be there. As always, well nearly always, she was right. We are a tight group, rows aside, plus, we wanted to make something of the trip. The meeting was for a few hours on Wednesday afternoon so we booked a hotel for the night, to make an adventure of it all. The Verling family set off in the morning on the adventure, not knowing what was ahead of us but at least we were all together. We stopped off inLimerick, for what Freddie called a snack; those picnics in the car are part of any trip away from home.

At Temple Street, we were almost an hour early. Unusual for us. I dropped the family at the door and went off to park the car. When I got back, they were in the café in the basement, Freddie tucking into a ham sandwich.

“Look what I got Dad,” he said, holding the sandwich up for me to see.  At least it was an adventure for him.

I always make myself eat when nervous, there was a time when I couldn’t but now I force myself, takes my mind off things, I suppose. At about 2.10 we went up to the top floor, the meeting was at 2.30 and knowing Dr Shahwan, Amre, he wouldn’t be late.

In the waiting room it hit me. This was the big meeting of my life; nothing could match it for what was going to happen. Freddie was relaxed, Ruby was on her iPod and Lisa was together but very nervous.

Bang on 2.30, Cathy Madigan, the Neuropsychologist, came for us. Ruby and Freddie were staying in the waiting room but Cathy took Ruby to where the meeting room was, just to show her in case she had to come find us. Always thinking ahead…

There were five of us in Amre’s consulting room. Lisa, Cathy, Amre, Imogen the speech therapist and myself.

On his computer, Amre went through all of Freddie’s scans. He had samples from Cork of the telemetry, PET and MRI, which were all done last year and had alerted him, via Brian Mac, that there was something in Freddie’s left frontal lobe worth taking a look at. Then he went on to the work he’d done in January, his versions of the same scans. His work confirmed his belief; there is a malformation in Fred’s left frontal lobe. A piece which probably didn’t form correctly in the womb, and now had atrophied. It looked obvious once he’d shown us but then, he was only showing one good sample from the hours and hours of work he’d gone through. Thankfully, the man is a perfectionist in everything he does. His PET scan confirmed his telemetry work.

Dr Shahwan believes that Freddie is a candidate for surgery.

At long last we’d heard from someone who specialises in this field, a man who is a true wonder to us, that he believes our Fred is a candidate for surgery.

This of course, this is his opinion, a very well thought out and thought through opinion. His next job is to convince a surgical team that he is correct and that surgery would improve Freddie’s condition. As the team work in different hospitals, it will be sometime in May before he can get them all together. In the scheme of things and considering how long it took us to get where we are, till May isn’t a long time to wait.

Now Amre broke Fred’s case into three sections. The epilepsy and its surgery was one, Fred’s reintegration into normal life another and Fred’s education the final one. It makes sense and it shows the holistic approach the team are taking to get Freddie back to normal. He handed the meeting over to Cathy Madigan, to cover the next two stages.

Cathy has spent a lot of time one on one with Freddie recently, so she knows where he is at with his social skills. She believes that it is vital for Freddie to start back into normal life immediately. As Amre added, it will not be like flicking a switch after Freddie’s surgery; he will not suddenly be like a normal ten year once the surgery is done. In a further meeting, with us alone afterwards, Cathy laid it out what we need to do; we have to put our fear of epilepsy behind us and get Freddie back to school, get him back out into the world. Easier said than done of course but the back up we are getting from Temple Street is just amazing. Cathy has been in contact with our local school, they are ready for Fred to start after Easter, and she has had the Irish Epilepsy Association visit the school, to talk with teachers and pupils. She is fighting the Dept of Education to get a fulltime care assistant to be with Freddie at all times at school. There isn’t a stone left unturned from what I can gather. It is her firm belief that Fred needs social integration more than anything else; his education will follow afterwards. A half hour of school per day, then working up to more until he can do a full day, is the plan.

What the parents have to do is get used to thinking if he has a seizure we deal with it, not let it dominate our lives…this isn’t going to be easy.

Imogen too spent time with Fred lately. She is in total agreement with Cathy and is working closely with her as part of the team. Even though Freddie’s speech development has stalled at that of a six year old, oddly his vocabulary is very rich. The job now, and this is connected with his return to the outside world, is to get his speech to catch up with his vocabulary.

There is much work to be done. The trip to the beach yesterday was part of the new plan. It was a very brave Lisa who took the little man to the beach to collect his shells, but they did it and returned unscathed. When I got back from meeting with Kev, Freddie was busy painting them, a very happy little man.

After the meeting, the team were anxious to meet Ruby, put a face on the name. All part of their all round approach to the Freddie conundrum.

A relieved, happy, daunted family left Temple Street and headed for the hotel. The plan was to check-in, before heading over to Conor and Cathy’s for dinner. The family headed up to the room and I went off to park the car. It couldn’t have been more than ten minutes but when I got to the room Freddie was already in his jamas and in ‘our bed’ watching a DVD. It was a dirty evening and we were all tired.

The room was lovely, comfortable and warm…outside is was dark, misty and overcast.

I phoned Conor…we weren’t going anywhere… he said he’d be over about 8pm.

Lisa sent me out to get water and biscuits. Up the road, I found a Chinese takeaway and took a menu. In a convenience store, I got biscuits and big 2-litre bottle of sparkling water. Freddie loved the sparkling water; he called it 7-Up and kept the bottle next to the bed. That lead to an evening of burping and peeing.

The Chinese was ordered and delivered. The Verling family, for once feeling like things are going our way, tucked into spring rolls, noodles, sweet and sour prawns, rice and tofu in black bean vegetable sauce. Nothing quite like that stuffed with a take-way feeling when you’re in a hotel room, tired and its miserable weather outside.

About 8 O’clock Conor and Cathy came round. We explained our day, the first time we’d done so since the meeting. Hearing the words come out of our mouths was a real feeling that all this was happening. Pints were ordered, wine for Lisa and tea for Cathy Berry. Freddie had Conor to himself, showing him the Godzilla movies on YouTube. The laughing and joking in our little hotel room must have echoed around the world, it felt that great to us.

Back home on Thursday night, Freddie and I were sitting up in bed…

“Dad?” Fred asked, “Is the doctor going to fix me?”

“I hope so,” I answered, trying not to cry.

“In the giant magnet?” was the next question, referring to the PET scan.

Whatever happens I hope Freddie's view of the world doesn’t change that much.

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3Mar/130

The Mother and Daughter Of All Rows

On a Sunday morning there is nothing better than lying on the couch, full from a good breakfast and all the family around me. Ruby is on one couch, her kingdom, surrounded by her phone, Ipod and laptop, earphones in so she doesn’t have to listen to us. Lisa, Freddie and I are on the other, doing lazy Sunday morning aslittleaspossibleness. A few minutes ago Freddie raised his head from a cushion…

 

“Mummy, what happened yesterday?” he asked, innocently.

 

If only we knew, I said to myself, if only we knew.

 

Yesterday morning Freddie and I were settling into a morning on our own. Ruby and Lisa were going off toWaterfordfor a last day with Aunty Rudi before dropping her  to the airport for the trip home. Before the two left I was hugging Lisa and Ruby joined in, such acts don’t happen as much as they used to when Rubes was a child. It was a lovely moment. However, this was going to be the men’s day. Daddy and Freddie were going to do nothing and we had all day to do it. We’d already had the big breakfast and Freddie had a load of movies lined up for us to watch. That morning after he’d come downstairs Fred had had a small frontal lobe seizure, just a five second “fright” and so I was happy to keep him safe on the couch.

 

After all the hugs and goodbyes, the two ladies set off and Fred pulled a blanket over us two.

 

About ten minutes later Muttley the dog made that whining noise he only makes when he hears our car on the road. Couldn’t be, I thought, they’re on the road toWaterford. But, sure enough, Muttley knows his cars and within a minute Ruby walked in, or should I say, strode in, Lisa striding not far behind.

 

“What happened?” I asked, “Did ye forget something?”

 

“Mum’s being a @£$%%,” Ruby said, heading for her couch.

 

Not a word else was spoken between the two of them, but they never made it toWaterford. Poor Aunty Claire had to take Rudi to the airport, while Freddie and I had a day of tears and swearing, which were not in any of the movies we watched. So our day of men at home doing nothing was ruined by a row which even today, neither of us are any the wiser how it happened or were in any way involved but we do know it managed to take over our home. I was looking forward to us doing our own thing but so it wasn’t to be. The power of a teenage rage. Despite my best efforts of brokering peace, the house lay under that cloud of rage for the day, Freddie and me doing our best to keep out of it.

 

24 hours later its still on Freddie’s mind, the little fellow doesn’t understand how it all happened. His slightly wiser, 46 year old Dad hasn’t a clue. Later last night we watched a doc about how a beautiful, older tiger was driven out of her home by her daughter; very appropriate viewing for the day that was in it.

 

All this came at the end of an eventful week for the family. Last Sunday evening I had a Skype call with Ed Galvin. Fred loves sitting on the side of the computer, just getting his head in shot, watching and listening to the call. As Ed was flying in fromMaineon Thursday and arriving inTraleeat eleven, I offered to collect him at the train station. Freddie was delighted, we were going to the train station. My only hope was that the two of us would make it over to collect Ed. It’s in our make up these days that we don’t plan for the future, you never know what’s going to happen in our house. By Sunday he’d been four days seizure free, great as always to have those days, but you never know what’s around the corner.

 

Thursday came around and all was still well. Lisa took Ruby to school, a bit later than usual so Fred and I were on our own, he’d get to come to the train station after all. He was a bit dopey but claimed to be fine. The poor man is so fed up with being asked how he’s feeling. When he wakes in the morning, “how are you feeling? Any confusion?”  And so it continues throughout the day, every day. His answer as always is “YES, I’m fine”, usually with more than a little annoyance in his voice. Oh those over protective parents, will they ever leave that poor little man alone?

 

At about five-to the two of us set off. Fred sat in the car. I asked that question again, to which I got the same answer. We drove across town, Freddie describing everything he could see out the window, “the sky, some trees, a hotel, an old lady, another old lady.” He tells it how he sees it. At the station we waited outside, me worried about Freddie, the man himself reading his Incredible Hulk magazine. Ed arrived more or less on time and we headed to Ballyard.

 

After a while Lisa came back home. Freddie wasn’t his usual ebullient self, especially with a visitor in the house but I tried not to read too much into it all. We could spend our days trying to second-guess what’s going on in Freddie’s head, in fact we do, but we can’t let it restrict his life. About midday, I took the jetlagged Galvin off to his home in Kilmurray and left Lisa to care for Fred.

 

It was great to get out and do a few things. We settled Ed at his home and I headed off to get some frogspawn. Freddie loves the stuff and I thought it would a nice surprise for him. There is a great spot at which I’ve got some before and there was plenty again this year. I filled a small bowl and wedged it under the back seat.

 

In Dingle I did my jobs, I’d decided to wait around and collect Ruby, it was a good opportunity to do a few things. So I had lunch and a chat with Keith before heading off to collect the darling daughter. She got in and we chatted for a few minutes, until about half way up theConnorPass, before the headphones went in. Not too bad.

 

Arriving home, it was a bit like the old days of Ballyseede last year; Freddie was asleep under a blanket. How many evenings last year did Ruby and I come home to that?  He’d had a couple of small frontal lobe seizures and was trying to sleep it off. Eight days free, that was what we’d been granted. I showed Fred the frogspawn, he was interested but very dopey, he cuddled back into his Mum. As I had a few things to do, I headed off to my office. When I came back down, he was still asleep.

 

“He’s had his tonic-clonic,” Lisa said, with an air of resignation, we both knew that it had been on his way.

 

Fred woke to the sound of my voice and he wasn’t letting the epilepsy take his evening. He wanted dinner and so I started making one for him and Rubes. A few minutes later, a sleepy boy, helped by his mother, staggered in to see the frogspawn. They hadn’t been forgotten either. Dinner was demolished in true Freddie style and no sooner than he’d finished when a little frontal lobe broke through. He was not deterred by it, in true Freddie determination he shook it off and continued with his evening. About ten o’clock we headed off to bed, read a few books and Fred soon fell asleep. Just an hour in he had another frontal lobe, five seconds long as usual, but he just turned over and fell into a deeper sleep.

 

Friday was a take it easy day. Fred had yet another frontal lobe about 7am but he didn’t let it bother him. Lisa took Ruby off to school and the two men went about their morning rituals. After Lisa returned I did my few jobs but we were all on high alert for the day, surely the epilepsy wasn’t going to leave him off with just the one tonic-clonic…

 

About five, Ruby came home from school. It was a Friday evening and the house was in good spirits. The week was behind us and there’s something about a Friday evening that, when you close the door it feels like your life is yours again. In the kitchen I was making dinner, Fred was helping. Lisa was hovering, worried as always. Just as well that she was, as she was able to catch Freddie as he collapsed to the ground.

 

The second tonic-clonic. It hadn’t gone away.

 

The couch was prepared and Fred cuddled into his mother for a recovery sleep. It didn’t last long. He soon woke looking for his dinner, that wasn’t to be forgotten. The rest of the evening passed peacefully, Fred watched a movie before heading off to bed about ten o’clock. No ill effects from that seizure which threatened to ruin our favourite night of the week.

 

As we cuddled up for the night, Freddie asked what we’d do tomorrow. Tomorrow was Saturday, the day the men were to be together…

 

Little did we know that cyclone mother and daughter was on its way...

 

 

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