Grandad's pain

Grandad - September (06)

2007-09-24T12:23:45+02:00

Wed 06 - Audrey got back to work - I had bit of a weepy morning - not good on my own.
Called up to see Ruby ( my mother) after tea time - wants us to use whatever savings she has to help Ellie in any way possible.

The next few days were a mixture of highs and lows - on Sunday I got a bit impatient behind a lady in a local supermarket - her small daughter turned round and smiled at me - she had Downs Syndrome - talk about feeling bad. Forced ourselves out in afternoon - went to local beach - man serving us ice cream from a van commented 'we don't know how lucky we are' - nodding in the direction of a group of people with learning difficulties. Strange when something is troubling you constant reminders seem to be all around.

Mon 11 - On way to gym in morning I was playing Emmylou Harris/Mark Knofler CD - All The Road Running - track called Love and Happiness came on - lyrics expressed how I was feeling about the wee lady - cried - Jani didn't phone in evening - always bad sign

On Tuesday Audrey spoke to man from Northern Ireland involved with PWSA - heard some good things and bad things - I listened to the Love & Happiness (L&H) track over the next few days and found I was able to handle it better - Jani phoned on Wednesday wee lady smiling and cooing - first genuine response from her - Jani sent first photos since Ellie's diagnosis.

On Friday (15) I booked three tickets for Jani/Ali and me to go to a Blues Brothers show on Oct 08, and on Saturday we decided that we would use some of Ruby's money to get private massage sessions for the wee lady, to see if muscle tone could be improved. We went for a run with Ali/Hannah in afternoon - on way home L&H came on in car - I made point of saying how I felt about it - mistake - more tears.

Usual Sunday (17) - everybody quite flat - don't like Sundays - on Monday my youngest brother Adrian( lives in Belfast) came down with Ruby - he didn't know what to say ( hadn't seen him since wee lady diagnosed) - Ellie had first massage session on Tuesday - Audrey gave in to going for check up at doctor - still very weepy - got on o/k - no medication offered - wee man won dancing competition at nursery.

Thursday 21 - Jani in very bad way - wee lady had bad reacion to first injections - very distressed and making pained noises ( still can't cry)- Jani convinced she has more problems than PWS - all in bits again.

Decided over next few days would have to pull myself together - know my demeanour affecting everybody - not fair on Ali as I'm not giving Hannah 100% attention - took first photos of her ( since Ellie's diagnosis) on Sunday.

Monday 25 - Decided to phone doctor for check up - determined to stay healthy - Jani went to an outside spa in Edinburgh in evening - really enjoyed it - dreamt at night that Luke and Ellie were reciting nursery rhymes - Ellie was word perfect - wee man gave his definition of graffitti -
' bad boys with big pencils'.

Had appointment with doctor on Wednesday - broke down completely in front of him - felt so foolish - condsiderd not carrying out examination as I was too upset - calmed down - thought blood pressure bit high - back in month for results of other tests. Bought blood pressure measuring machine.

Managed to get couple of laughs from Jani on Thursday - good sign - on Friday 29 - got call from doctor - back next week re cholesterol results - we went up to Ali's after Audrey finished work

Saturday 30 - Audrey had talked about ' brightening up her wardrobe ' ( another good sign) so we went shopping in Enniskillen - no luck - went for beer in Manor hotel - Ali went to gym and then joined us - everybody seemed quite relaxed so I finished the month off with a couple of brandy and ginger.

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Grandad's diary (2)

2007-09-06T13:24:05+02:00

Saturday 19th August

Good weather - good view of sea and shipping - found dining room and took table in corner (moved to window on future days)
Went to 'Welcome' meeting - both of us broke down in front of travel company rep when buying telephone cards - followed us to lift - said he would find us and chat later - spoke to receptionist about room - immediately changed it - got much larger room - again great view.

Wandered around and saw old haunts - phoned home - very upsetting listening to Jani and trying to be positive.

Sunday 20th August

Session with holiday rep at pool - suggested we have a chat away from hotel environment - thankfully didn't happen - guy meant well but reckon he had lot of personal problems himself.

For remainder of holiday we walked, talked, phoned home and cried a lot.
Very difficult watching families with two or three healthy, happy children without saying - why us?? - why Ellie?? - it's not fair - even though we know deep down everybody has problems.

Not the usual holiday photographs with me being captured with pint in hand, at numerous venues throughout the island - this time it was boats or horses.

We met a really lovely couple from Wales ( probably in their 80's) and would you believe it, I cried in front of them when they were saying goodbye. We had told them about Ellie and they were genuinely sympathetic and wished us good luck - we also met a nice couple from Scotland and exchanged addresses.

Friday 1st September

Walked about a bit in morning before leaving for airport around 1 o'clock - took almost 2 hours to check in due to crowds - flight was delayed for 50 minutes - had couple of rather large Bacardi and coke.

Jani, Luke and wee lady collected us at airport - Dee on night out following successful completion of course at work - wee man had his usual ride out of terminal to car park, on suitcase - felt quite ill on trip back to house -remember those two rather large Bacardi and coke??

Sat up late - highs and lows.

Saturday 3rd September

Stayed around house all day - Dee not in great shape after night out - don't think he really appreciated Spanish accordian we brought wee man back from Menorca - usual tears and discussion - caught Jani shaking her head and dropping a tear over Ellie in her Moses basket.

Sunday 3rd September

All went to Edinburgh zoo - we wanted Jani and Dee to go to fireworks display which offically ends Edinburgh festival - didn't go. I went for a beer with Dee - further discussions - no progress - going to be a long haul
Dee's sister invited out for dinner - didn't make it - held up by fun run in Glasgow ( staying there for week-end)

Monday 4th September

Audrey, Jani, Ellie and me went to a shopping mall a short distance away - Jani broke down in the cafe - we had to leave - Dee left wee man to nursery and went mountain biking.

In afternoon girls and Luke went a walk down the front - I glazed the summerhouse and met up with them at the Hawes (pub/restaurant)- phone off hook over dinner - missed call from Dee's mum.

Tuesday 5th September

I left wee man to nursery and said cheerio to him - got wee bit choked up - me not him.
Very quiet round house - all kept up on way to airport but tears saying goodbye - felt as if we were 'walking out' on Jani and Ellie when they really needed us.

Ali met us at the airport in Belfast - her and Audrey got into a terrible state - had to try and keep up. Journey back in car heartbreaking - all talking about how sorry we felt for Jani and reflecting on the things she said over the last few weeks - the great hopes she had for her baby daughter - where are they now?

Hannah gave us a bit of a lift when Ali collected her from her other grand-parents.

Don't know how Audrey is going to lift herself to go to work tomorrow.

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Grandad's diary (1)

2007-09-06T11:28:32+02:00

Monday 14th August 2006

Jani rang re Ellie's diagnosis - total shock, sorrow, disbelief.

Ali and Sandra were there - all stunned - I collected Audrey from work and told her in the car - couldn't take it in - grief.

Audrey didn't go back to work after lunch - she had lengthy conversations with Jani on the phone - horrible way to try and comfort someone - over the phone.

Tuesday 15th August

Left Sandra to the airport - pretty tearful farewell.
Ali was due to go come but stayed down to console us - in bad way herself.

I contacted lady from Prader-Willi Syndrome Assocciation in Scotland - only positive thing I could think of - got pretty speedy response by e-mail.

Were due to fly to Edinburgh on Thursday ( en route to Menorca) but changed flight to Wednesday to be with Jani as soon as possible.
Audrey went in to work at night - broke down in front of close work colleague - I broke down on phone to my mother and another colleague of Audrey's.

Wednesday 16th August

Out in garden - neighbour came to offer his support - choked up - had to come inside.
Mark took us to the airport in Belfast - both heavy hearts -Ali in terrible state when we left.
Jani collected us at airport - wee man his under seats in waiting area - jumped out to surprise us - just a normal visit as far as he knew
Tears back at Jani's - adamant we go on holidays.

Thursday 17th August

Got bus into Edinburgh to get bits and pieces for holidays -American tourists got on bus - laughing and joking - don't know how we managed to shop.
Audrey kept breaking down on and off all day.
Jani contacted lady from PWSA that I had been in touch with - she came out to visit - had long talk - showed photos of her son who had PWS - all got temporary lift from visit.
Dee questioned us about visit when he got home from work - got annoyed when he realised the full extent of PWS - had previously thought it was mainly a matter of diet and exercise - which could be controlled.

Friday 18th August

Summerhouse Jani had ordered some time ago arrived - I helped transfer it to back garden ( over garage roof) - rained all day on Dee and guys erecting it.
Audrey bad again - Jani tried to keep up - impossible - questioning what type of life Ellie would have - their lives and ours would never be the same again.

Jani left us to the airport - going on holiday in a daze - flight delayed by 2 hours.

Taken by taxi from airport in Spain to hotel - arrived about 1:30 a.m Spanish time - room very tiny - had to go back down to reception - guy had held on to return flight ticket when taking accommodation voucher.

Not a great night's sleep.

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Grandad's pain (2)

2007-09-06T10:59:28+02:00

After a rough time for our eldest daughter Janice (Jani), Ellie Elaine Stevenson was born by emergency caesarean section on Sunday 28th May 2006 in St John's hospital near where Jani, her husband Dylan (Dee) and four and a half year old son Luke ( the wee man) live.

My wife Audrey and myself had travelled to Scotland on the previous Wednesday and were on hand to help out and offer whatever suport we could.

Although she was four weeks early Ellie weighed over 5 lbs, which seemed not too bad - there were however some concerns even at that time. Ellie was not feeding too well, she wasn't too active and didn't cry. Staff kept re-assuring us that the problems were down to the fact that Ellie was premature and she would be o/k.

After a couple of days she was moved to the special baby unit and Jani and Dee took turns staying at the hospital feeding and looking after her.

Ellie came home shorthly after, much to the delight of the wee man, but there was still concern amongst ourselves as to Ellie's progress. Jani was exhausted - not only by the the birth but the added stress of worrying how Ellie would do.

Audrey and me delayed our return home as long as possible, but we had the added concern over our youngest daughter Alison (Ali) who was expecting her first baby at the end of June - we were concerned what effect the worry over Ellie's condition might be having on her, plus Audrey had to return to work.

After a lengthy labour, Ali gave birth to a baby girl, Hannah Eve, on Sunday 15th June - both were fine. We spent a few days with Ali and her husband Mark after Hannah came out of hospital, before heading home ( about 60 miles away)

We had a family get together in Londonderry at the start of August - the three gradd-children, mums and dads and Audrey's sister Sandra from England. It wasn't the usual light hearted gathering with plenty of laughs, but we tried to make the best of it - there were many tears about Ellie, her lack of progress and what sort of future she would have.

On Friday 11th August Jani received a telephone call from St John's hospital asking if they could bring Ellie in on Monday morning. We were all a bit stunned - we knew if they were required that soon there must be something seriously wrong.

Jani rang back to the hospital to try and get further information and the doctor seemed to be quite re-assuring, saying they wanted to carry out some more tests - our minds were working overtime - we were convinced that bad news was to follow.

I received a call from Jani at mid-day on Monday morning telling me that the wee lady had been diagnosed with a rare genetic disorder called Prader-Willi Syndrome - I was totally shocked - we knew something wasn't right, but never something like this. I had never heard of PWS, but from the explanation the doctors had given Jani and Dee, it didn't sound good.

I did my best to comfort Jani, but I was useless, i couldn't find the words.

When we finished our call I immediately went on the internet to find out more about PWS - that was a bad mistake. I nearly broke my heart at some of the articles I read.

One thing is certain, Monday 14th August 2006, was a day that changed the lives of our wee closely knit family - forever.

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Grandad's pain

2007-09-06T10:24:32+02:00

My name is Trevor McClay, I am 61 years old, retired and live in Northern Ireland.

My wife Audrey and I have two married daughters, the eldest lives in Scotland and the youngest here at home.

Our eldest daughter has two children ( boy and girl) and the youngest a little girl ( who will have a a new baby brother or sister by Christmas).

The reason for this blog is because the little girl in Scotland, who is 15 months old, was diagnosed with a rare genetic disorder known as Prader-Willi Syndrome (PWS) on 14th August last year.

Our whole family was devasted with this traumatic news - many a tear was shed and will undoubtedly continue to be shed for the rest of our lives.

We do not know what the future holds, but we do know that for all of us life will never ever be the same.

As a parent you always feel you can help your children to sort out their problems - not this time!!

For whatever reason I started keeping a diary after receiving the news about our garnd-daughter, and now just over a year later I feel able to share with anyone who might be interested, how we as a family are trying to cope.

Hopefully it will help me by sharing my pain, and also help raise awareness of Prader-Will Syndrome.

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