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

29Sep/130

Do Your Worst, Mr Dentist

Fred

This week has been one of breaks with the past for Fred. For a while now, maybe every couple of months, Fred will ask can he have Colm or Vincent or Thomas over. These are names from at least 3 years ago when Fred was a regular at Lispole School. Sometimes he’ll get angry and remember something Vincent would have done. They had a fight one day over a shoe and Fred brought that up a couple of times this week, something that happened maybe 5 years ago. He’s not one to harbour a grievance is our Fred.

So at times this week Fred would leave out a deep sigh and say something like:

“I miss my friends,” or “I wish I could have my friend Thomas over,” or “that Vincent he makes me mad.” Now why he happens to think of these old friends we don’t know but it must be very difficult for him to come to terms with losing their friendship. But miss them he does. Maybe it’s being in a different school that has reminded him of them, who knows. But this week we had to lay it out that those friends are in the past,  for now. Even if Fred remembers them chances are that they may not remember him.  In fact Colm has lived in the US for last few years and Thomas left Lispole School before Fred did.

It was difficult having to tell him that those friends are gone and that he should now concentrate on the new ones he’s made in Blennerville. It was like telling a refugee that his past life was over and to forget it ever happened.

There were a lot of tears and sadness. To try overcoming this Lisa and I would point out that he’s making new friends. Jayden was mentioned a lot and Fred did say that Jayden was his best friend. To top it all I think Fred is also thinking of the carefree days he had with those old friends, before epilepsy took over his life. He’s remembering the good old days. It’s hard to tell a ten year old that he has to move on, especially one who’s been through as much as our Fred. But being the stoic that he is, he understood but the sadness is still there. The problem too is that Jayden has his other friends and for the time being Fred can’t go do what they all do together.

Very tough on the little man.

The second thing had to say goodbye to this week were his milk teeth. Fred takes his time with things and has been very slow in shedding those first teeth. Now at ten his adult teeth are coming through and need help getting space in his mouth. On Thursday Lisa took Fred to the dentist to pull the ones that needed to go. Before he went Fred gave his teeth a good washing...

“Did you wash your teeth?” I asked.

“Yes Dad,” he said proudly opening his mouth to show me, “and I dried them.”

“Dried them?”

“Yes, with the towel, they were all wet.”

Only our Fred would think of that one.

At the dentist Fred had some of his lower front teeth pulled. When he came back he showed me the holes left behind. Apparently he didn’t flinch at the extractions or when the needle went into his gums. Amazing how things have changed. Then again this is the man who had me pull out a tooth once that was dangling from his top gum, and thanked me for doing it.

That night though, just as he and Lisa went up to bed, I heard a big scream. Suddenly someone came running across the landing and down the stairs at the rate of knots. Fred burst into the front room, out of breath and his heart beating ten to the dozen. At the very least I though Dracula must have appeared at the window and Lisa was fighting him off with gloves of garlic. After he got his breath back Fred blurted out that there was a spider in the bed.

The man can look a dentist in the eye and laugh but runs like the clappers at the sight of a spider.

Yesterday Ed Galvin had me on one his magical mystery tours and I left the house at about 9.15am. As I usually go to the market on Saturday mornings to stock up on fruit and veg Lisa had to do it this week. It was great. Fred went with her, they went to all the stalls filling the bags and it was something that a few months ago we wouldn’t have dreamt of doing. He was on his best behaviour, helping Mummy and doing normal things any ten year old would.

Afterwards the two had to drive out to Dingle to collect Ruby. Fred was only too happy to get out and they met Lisa’s friend Fiona into the bargain. Now, on a normal weekend Lisa may have done that trip on her own and I would have gone to the market on my own. The way things transpired Fred got out and about, which can only be good for him.

When I returned around 6.30pm I got one of Fred’s big, dramatic welcome homes. He clings to you for dear life and follows you around so as to remind himself of what you look like. Phrases like “I missed you so much” or “you were gone forever” are used as is “please don’t go away again.” It’s very flattering and makes coming home even more special.

Sometimes he’ll tell tales of fights between himself and Mummy but none such yesterday. He did tell me though that he’d had confusion during the morning while I was away. The fact he didn’t tell Lisa is upsetting as she would need to know so as to minimize the impact of a seizure, the last thing she would want is Fred hitting the floor at the market.

As I said to Lisa he probably didn’t want anything to interfere with his day. He just wanted a normal day with his Mum, just like any ten year old boy would.

Just a normal life, that’s what our Fred wants, with friends around and plenty of fun.

Someday soon he’ll get it, someday soon.

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22Sep/130

Fred Quits School

This week had a first for Fred, at least something he hadn’t had in a long time. He was off school Monday with a cold. For once it was a normal, everyday infection that grounded him and something that kids get every day. Another bit of normality for our Fred. Not that he didn’t know how to milk it. The duvet was brought down from the bed and he got a whole day of watching whatever he wanted. Every now and then he’d let out a sigh or do a big sniff, just letting us know that he was suffering, that the day home was justified.

In the evening he turned his sick face to me and said:

“Dad, I can’t go to school anymore.”

“Why?” I asked, smiling at the sincerity in his eyes.

“Cos, I have a cold, that’s the why.”

So as far as Fred was concerned the cold was putting an end to his school days, he’d done that and now it was time to move on. As it happens, as the day progressed he recovered strongly, enough for him to go back on Tuesday. In essence he’d had the cold all weekend and Monday was only a day of recuperation.  Funnily enough he hasn’t had many sick days over the last few years, probably not mixing with other kids kept him away from infection. Now he’s back at school and whatever is going around Fred is bound to catch. This cold was being blamed on Jayden as Fred reckoned he’d had it first. Poor Jayden wasn’t there to defend himself.

All in all this back to school process has gone very well. Fred has adapted well and seems to have made some friends too. Jayden has been over and there have been mentions of other names as well. His reading has come on leaps and bounds. He was doing homework with Lisa during the week and read his book from cover to cover without a stumble. The writing could be better, he still tends to make the letters too big but that will resolve itself in time. Fred is good at maths, he flies through the sums Denise gives him and seems to be getting the hang of the sums quickly enough.

Each day this week I collected him from school. Out he’d come with a different sticker from Denise on his jumper. “Excellent work” or “star” would be one day and “great” or “wonderful” another day.

Into the car Fred will jump...

“I did great work today Dad, I was excellent” he’ll say, bag still on his back, the shirt more than likely hanging out but a happy little man and that’s all we can ask for.

Back home he’ll always say is that he’s not doing any homework; his job is done for the day. The class diary will say differently though and after a bit of cajoling in the afternoon he’ll usually sit down at the kitchen table to do it. It’s getting slightly easier, he won’t fight to the bitter end to avoid doing it but he certainly won’t come easily. What kid does though?

On Wednesday as he was settling into being home, I emptied the school bag. It felt heavy, heavier than usual and when I opened the middle section there was a brachiosaurus, one of the solid German made models he got a few years ago. Obviously Fred decided it needed a trip to school and had snuck it in when Mummy wasn’t watching. Whether Jayden was shown it, I don’t know but I’m sure Denise must have seen it when getting his stuff together. Sometimes I think Fred brings these toys along with the idea of showing them to his friends but in the fun of school he forgets all about them. Or maybe he wants them for the comfort factor, who knows with our Fred?

The first thing Fred does is strip off the uniform and throw it to the four corners of the front room, then he’ll ask for lunch. On Tuesday I went up to get him a change of clothes and I spotted a pair of jeans he hadn’t worn for a while. When he put them on I could see why, he’d grown a bit since and they were a size or two too small. But Fred squeezed into them, looked at his legs and suddenly started smiling. He put his hands in his pockets and said:

“Look Daddy, I’m just like you!” We have the same jeans!” he looked as proud as punch and I started laughing, I didn’t half fill mine as well as Fred did his.

He followed me around, hands in his pockets, smiling. When Lisa came in she couldn’t stop laughing at the tight fitting jeans on the man but loved how he thought he looked like Daddy.

On Friday I had to go collect our car from the garage in Limerick. Two weeks and a day from when they first received it. I was upstairs when I got the call and when I came down to set off, Fred was lying out in Lisa’s arms. He’d suddenly felt the confusion coming on and had quickly gotten into his mother’s arms to try sleep it off. For all the abuse Lisa gets from both Ruby and Freddie it’s always her they turn to when in trouble. Its testament to the mother she is and how much they actually do love her.

Lisa wouldn’t listen to my not going, she sent me on my way with the logic that, it was only the afternoon away and not to let it break up the weekend by going off on Saturday instead. So off I went. Fred was very quickly in a deep sleep, it’s amazing how an onset of confusion can do that.

Once I got to Limerick and retrieved our car I called home. Fred was awake and doing well, looking for dinner and watching a DVD. The relief to hear his voice in the background calling his Mum was massive. Back to Tralee I drove and got the biggest welcome home ever from the little man. You’d think I’d been at sea for the last year the way he ran out to meet me.

Soon though it was obvious things weren’t well. Hannah was over, which made Fred very happy, but he didn’t say a word when she came in the room. Instead he had that look of fear that comes over him sometimes, those times he knows there a seizure on its way. Into his mother’s arms again but this time Lisa took him up to bed. Being prepared is the key here. We got him to the toilet and laid out the bed, where he’d be safe.

Fred wasn’t two minutes in the bed when the seizure struck. However there was a lot of shuddering not the full blown explosion of the usual kind. His eyes had flickered a lot leading into to it and he looked as if he was fighting it. It lasted the usual ninety seconds or so and he relaxed on his mother after it was all over. When he was safe I went back down to eat my dinner and chat with the girls.

About an hour later I went up to check on them again. Fred was full of shakes; his whole body was shaking, shuddering really but not going into seizure. Remarkably he was awake, the poor little man only too aware of what was happening. I sat in beside him.

Eventually the mother of all angry seizures broke through. Like a racing car revving up for the off, it blasted through and gave Fred a fair whacking but he took it. After a couple of minutes it passed and Lisa sent me away again. She likes to take charge of these episodes and doesn’t need me fussing about. When not directly involved I tend to hover about, probably getting in the way more than anything else. I did what I was told but first made a cup of tea for Lisa.

Every now and again I’d check in on what was happening but all was fine, Fred was sleeping heavily but no more activity. At about 11pm I went up to bed but Lisa sent me off upstairs, she wasn’t for moving. All I could do was what I was told and kissed my sleeping man goodnight.

For once I must have slept well for the next thing I knew it was 7.30am. I rushed downstairs and in the bedroom the two were almost exactly as I’d left them. Fred had had a peaceful night and was sleeping it off. Lisa allowed me take over and off she went for a walk.

Normal service had been resumed.

Fred got up with me about an hour later and we made a big breakfast. Ella and Ben came for a quick visit and though Fred didn’t come in from the front room it was more out of tiredness than anything else. Even as they left he came out to say goodbye and did a few laps of the estate after they’d gone.

Sometimes he recovers so strongly and so quickly it is amazing. However he didn’t have much of an appetite and complained of a headache last night before going to bed.

Considering he’d carried on during the day as if Friday night hadn’t happened, they were only small complaints.

The little man bounces back with aplomb.

 

 

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15Sep/130

Fighting with Mummy, Again…

A scream of ‘just go away’ coming from Ruby followed by a ‘no you go away’ from Fred has reached me upstairs. Now should I go down and see what’s up or leave them sort it out for themselves? Fred is in great form this morning but that great form doesn’t translate into funny for Ruby when she’s just out of bed. Lisa, Fred and I were up earlier than Ruby, my teenage daughter needed to catch up on her sleep; she was at a party on Friday night and has been jaded since coming home yesterday. It’s gone quiet, it sounds like a full outbreak hasn’t occurred, maybe it will be safe to go down for lunch.

Over breakfast Fred was full of his fun. He was telling us about ‘Jaws the Girl’, his name for the first Jaws movie and re-enacting the funny bits when the three stars are drunk on the boat at sea. I’m not sure if it’s the contagious laughter of the three men he finds so funny or the actual jokes. You never know with Fred, he has a great sense of humour. Before sitting down at the table he’d been doing a silly dance to some music on the radio, making his parents laugh at his nonsense. He calls the movie ‘Jaws the Girl’ as a young girl gets eaten in the famous opening scene of the film, also I think it’s because a still from that scene is on the cover of the DVD case. One may question a ten year old watching Jaws but he loves it and knows it off by heart at this stage. At a pub quiz one time there was a question to which I knew the answer was Jaws because Fred watches it so often. A fairly obtuse one too. A woman, who knows me and Fred, asked for a hint to the answer. The usual carry on at a good natured pub quiz. I said ‘it’s to do with the sea and it’s my Fred’s favourite movie.’ That team wrote down ‘Finding Nemo’ and were a bit surprised at the answer being Jaws. Always one for a surprise is ‘my Fred.’

Last night he sounded like he was going into a seizure. It was in the middle of the night, he made that horrible sound I can’t describe and his body stiffened. It was over in seconds, I wasn’t even sure what was happening when Fred called my name...

“Dad, I had a nightmare,” he said through a sleepy mouth as he cuddled quickly into me.

So that was what the noise was.

“What happened?” I asked.

“There was a scary fox, with scary eyes and he was chasing me,” was the reply, “he was running very fast.”

As I cuddled him he dropped off to sleep, leaving me awake, I still hadn’t recovered from thinking he was having a seizure. A scary fox was fairly removed from a thirty foot shark, wherever he got that image from. Freud and Jung could spend a lifetime at Fred’s dreams without being any the wiser.

Yet another thing we all love about the little man.

Ruby wasn’t the only female Fred has been fighting with this week. On Friday I took over from Lisa for the second shift of waiting outside of the school. Now that he does a half-day it can be too long for one person alone to sit on duty. Someday we’ll get brave enough to skip home while he’s inside. Lisa told me how a row had erupted just as they were heading to school. Fred, for all his wonderfulness, can be frustrating when you’re trying to get him out the door in the morning. If he’s not looking for something to take with him or just doing anything except getting dressed he can push you to the limit when in a hurry. On Friday I think it was the fact he’d spilled toothpaste on his school jumper when washing his teeth. This time instead of taking the reprimand he’d gone for the row and two had a right old ding-dong. So much so that Lisa had forgotten to make his lunch. After dropping Fred she’d had to rush home again to get it; no matter how big the row the love of the mother still triumphs.

Lisa went off home and I stayed on duty. At lunchtime when Fred’s head came around the corner, I got out to meet him. Denise, as always walked him to the gate and when saw me he took off, running with arms outstretched.

“My Daddy,” he exclaimed, as if I’d been away at sea for the last ten years. Such a man for the exaggerations but it is lovely all the same.

Into my arms he ran, we thanked Denise and got into the car.

As he strapped himself in Fred said:

“Dad, there’s a problem.”

“What’s that?” I asked. Sometimes it can be that he had confusion, other times he’s just reporting Jayden being bold, you never do know.

“Mum and me were fighting, again,” he said, as if it was a continuing domestic problem, his arms out for the dramatic effect, “she shouted at me and I shouted at her, the she shouted at me again and I shouted at her.”

Back home Lisa was standing in the kitchen. Fred stood beside her, head down but looking up at her from time to time. Lisa holding her stance, looking down at him, not saying a word.

“What do you say to Mummy?” I asked, trying to move on the process.

“Sorry Mum,” Fred said, rubbing his fingers together in contrition.

“I’m sorry too Fred, but you know I expect better,” Lisa replied.

“I know Mum,” was the answer as he wrapped his arms around his mother, not giving her a chance to continue. Lisa did the inevitable and melted into his embrace like a starlet would with Clark Gable in any movie worth its salt.

That boy, he puts us through it.

On Monday afternoon, I was having lunch and Fred was beside me, watching a movie. He was bit jerky, it was day fourteen so this was to be expected. Outside on the back wall a pair of magpies were eating the crumbs I’d put out earlier. Two for joy, I said to myself and pointed out their beautiful colouring to Lisa. She agreed and I headed off upstairs to my office leaving the happy two to relax before doing homework.

Upstairs I was checking my emails, one arrived telling me I hadn’t got the funding for a project I was planning, at least my name wasn’t on the list. As I looked over the list, over and over again, I thought so much for the two for joy theory when it comes to magpies...

Then that horrible noise came from downstairs.

I rushed down.

Fred was coming out of the seizure just as I got into the front room.  ‘No sixteen day break this time’, I remarked as I helped Lisa get Freddie comfortable, not that fourteen days isn’t great. Apparently he had asked Lisa if he could go to sleep and as he was making his way across the couch the seizure struck. She’d noticed his eyes flickering but it had hit very quickly. The poor little man probably had been caught unawares but at least he was in his mother’s arms.

All afternoon the epilepsy took a go at Fred. Lisa nursed him, kept him safe and made as little fuss of the episode as only she can do. At about six o’clock Fred had number five, the number we agreed to step in at, and so Lisa gave him the shot of Diazepam to try call a halt to it all.

It worked. The seizures stopped and Fred slept soundly. He woke about 8 O’clock and moved over to cuddle up to me. So much for the mother giving him all her care for the day. She’d sat there all afternoon, for nearly seven hours, with just cups of tea and the odd digestive to keep her going. There was no way I could take over, it wouldn’t be even contemplated while Fred was in seizure. Now Lisa could get a break, she could relax and catch up on her day.

Fred woke up after a bit a bit and though dazed, was doing fine considering the day he’d just put down.

“Dad,” he said in a weak voice, his mouth dry from all the activity.

“Yes,” I said smiling down at him.

“I can’t get the fainting out of me. I try and try but it’s still in me,” he was getting tearful, as if it was all his fault.

“We will, the doctors will.”

“But when Dad?” the sadness of his face would break your heart.

“Soon, my little man,” was the only answer I had.

“Ok.”

With that he cuddled back into me and fell off to sleep again, leaving me in tears.

Oh that boy.

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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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1Sep/130

Jayden and the Pharaohs

Yesterday morning was the first Saturday of the back to school era. As we’ve suddenly being getting up at 7am again, maybe 7.15am for our Fred, yesterday’s lie-in till 8am was nice. This morning it was nearer 9am which was even nicer.  The really great thing about Saturday morning was the chance to have a lazy breakfast and catch up on some reading. So there I was, on my second cup of coffee, Lisa off doing Lisa things and Fred finishing his breakfast. My head was in my magazine, I was reading a review of a book on modern democracy when Fred asked...

“What are you reading about Dad?”

Now, as I was still trying to get my head around what I was reading, I wasn’t sure how I could explain it to my little man, so I answered...

“Oh, about different countries like Russia, China, America and how people live there,” was my best effort.

“And the triangles?” asked Fred.

“The triangles?”

“You know,” he looked at me, the brown eyes wide open, expecting  me to be on the same thought wave as him, “there are triangles there and sand desert.”

“You mean the Pyramids, Egypt?” as it happens a lot of the article was about Egypt so it was in my head.

“Mum!” went up the cry, “get me some paper and my markers please.”

Lisa got him a drawing pad and the markers from his school bag.

“I’ll show you,” he said to me, sliding his chair over beside mine and pushing me down the table.

Fred began to draw and, as I’m not allowed look when he’s drawing, I went back to my magazine. After a few minutes the little man beside me said...

“Ahem,”

So I looked over.

On the pad Fred had drawn a pyramid, two statues with staffs, a sphinx, a desert, a body floating down a river on raft and a tablet with some small symbols on it.

I was amazed.

“What’s happening here?” I asked.

Fred launched into how the story of what was happening was on the tablet...

“The boy goes down the river and the statues bring him to the pyramid,” he said.

“The boy has to play the harp as a key to the pyramid” at this he hummed a tune, “then the doors open and the boy is brought in.”

All the while Fred is pointing to symbols he’d drawn on the golden tablet.

“Then the statues close the door and the boy stays inside and the Sphinx stays outside to mind him.”

I was blown away.

“How do you know all this?” I asked.

“Oh, I remember it from the Little Einstein’s,” he said as if it was the most normal thing he’d ever done, the Little Einstein’s being a program he used to watch as a kid.

The marvellous way my boy’s brain works never ceases to amaze me.

On Monday, day sixteen, Fred was anxious to have Jayden over. As Jayden’s Mum was busy Lisa and Fred went over to collect him. From my office I saw them arrive and could see how happy Fred was to have his friend over. They went inside and when I came down at lunchtime, the two were digging into chicken sandwiches and watching Mr Bean. They were both laughing at the same things and I could see how happy Freddie was to have someone to share it with. Much as I try not to, I still find Mr Bean annoying, so for Fred to be able to share his jokes with someone was great to see.

Later they went playing outside and were having great fun doing boy things.  After a while they came in and the two went upstairs to get some tools, Fred had decided to go digging for dinosaur bones. The rocks over the other side of the estate are an ideal place for an archaeological dig. So the two set off with screwdrivers, brushes, a hammer and various other tools.

When I looked over they were getting an audience. The other kids on the estate were getting interested in the dig and were gathering around. This was great for Fred, they are all younger than him and as they are running around doing their own thing he doesn’t play with them. Now for once they were following his lead, getting interested in what Fred was doing. Lisa went over to the dig to keep an eye on things.

After a few minutes Jayden came running back...

“We need more tools,” he said and ran upstairs to the spare room, this was going to be a big job.

While Jayden was upstairs I looked out at the other kids getting tools from their houses. Freddie really had them all going, little Billy across the way was struggling down the footpath with a garden shovel. Then one of the other mothers came running towards our house.

I knew what that meant.

Lisa was holding him in her arms, Fred had been kneeling so hadn’t fallen, just collapsed into her arms. That maternal instinct of hers just knew not to be too far away from her man. The other kids were standing around, confused more than shocked, Billy leaning against his shovel. We got Fred into the car and brought him home.

As we lay Fred on the couch Jayden came downstairs with a box of tools. I asked him to go get the tools they had brought over earlier and he ran off. When he came back with the full box, Ruby packed up his bags and I put him in the car. As I drove him out of the estate he asked...

“What happened?”

In all the rush, the military style manoeuvre to get Fred safe, nobody had told Jayden what had happened. All the poor boy knew was that one minute he was getting tools upstairs and the next Fred was unconscious on the couch and he was being whisked back home.

I explained as best I could, he seemed to understand.

Oddly enough what happened was a good way of breaking new ground. Fred had interested the kids in his things, Jayden too, and the seizure, which had been expected, was handled well by Lisa and little fuss was made of it. If there was a good way of showing Fred’s epilepsy to the estate and to Jayden, Monday’s event was probably the best we could have hoped for, with little fuss and minimum drama.

Not Fred’s usual way of doing things, mind you.

The night went ok. Fred didn’t have any more big seizures but he had a few small ones. About 8 O’clock he woke and ate two small bowls of risotto. We went to bed about 10.30pm and after a book he went off to sleep. An hour later he had a couple more small ones, and I expected a night of big ones to follow, but he slept well.

About 5.50am, a big one hit. Lisa gave the medicines as usual at 6am and another seizure hit about 6.30am. Fred slept soundly for the rest of the morning, Lisa lying beside him keeping guard.

Later on when he came downstairs, a dazed but somewhat ok little boy, he announced...

“There’s a problem.”

“What’s that?” asked his Mum.

“I can’t go back to school!” he exclaimed.

“Why so?”

“Because I had a faint!” he exclaimed again.

Anything to get out of that dreaded day.

On Thursday Fred went back to school, uniform on, bag on his back and he was actually looking forward to the first day. It was great for us that he was doing this, just like all the other kids.

Afterwards his SNA Denise told Lisa that she had asked Fred if he was feeling ok and that he had answered fine...Jayden though had a different opinion.

“Really Freddie?” he had said, “sometimes you say you are when you’re not.”

Jayden obviously hadn’t forgotten Monday’s events and was fast learning Freddie’s ways, but it looks like he cares about Freddie.

Fred chose well there.

 

 

 

 

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