Wednesday, 10 February 2016

To the Moon and Stars

Death. It’s the ultimate in finality. Put simply, it is the end of life.

January 2016 has witnessed the passing of a surprising number of household celebrity names. From famous musicians, writers, actors and presenters, it has been a sad time and it has encouraged people to pause and reflect on what losing those people has meant personally. The reminiscence of what they mean to you has no doubt been linked to specific memories and cherished days gone by.  The sadness caused by never being able to live that time over again.

Is death the thing we fear the most? Is it even something we give any consideration?  I think that unless you are living with illness, are closely connected to illness or confronted with the possibility of death in some form, it probably isn't something that the majority of us think about on a daily basis. And that's surely ok; if we are so busy focusing on our mortality, we might actually forget to live our lives to the full.

When my son Jake was a baby, he had major heart surgery to repair an AVSD (atrioventricular septal defect). This is a fairly common condition for children with Down Syndrome but can occur to anyone. Thankfully, we are very lucky to have the amazing Alder Hey Children’s Hospital on our doorstep in Liverpool. Jake had heart surgery just before he was five months old. However, following the surgery, we experienced numerous occasions in the subsequent couple of years where we didn’t know if he would live or die. There were some dark days and nights spent watching monitors and praying that he would get better. We joked at the time with a dark humour that we didn’t need to ever wait in A&E to be seen, we were referred straight through to one of the Crash rooms every time and on one horrible occasion we were admitted under blue lights. 
A day that will haunt me forever.

Jake’s stormy post-operative recovery was a challenging time, we were told that if he was suffering from pulmonary hypertension following the surgery, then he would not live to school age. We had an agonising wait for an appointment to carry out a heart catheter to see what was going on. Thankfully, it wasn’t the hypertension that they feared and I am so happy that we have a happy and healthy little boy who is now five years old. However, during this period, I spent many hours  considering life and death and contemplating what this meant to me… I don’t think I could ever fully accept the possibility that we would lose Jake.

This week, we lost a close family member. A kind, courteous gentleman who my children knew as their great grandfather. He adored his six great grandchildren (with a further little one on the way, who unfortunately he didn’t get to meet) and this was reciprocated. He passed away peacefully in hospital after several weeks of deterioration and illness. Looking back, we have suspected for a while that he had been ill, but courageously he didn't share this to protect his loved ones.

This presented me with the dilemma of how do you break the news to a five and a three year old that they won't see their Grandy again? Thankfully to date they have suffered no loss of family, friends or pets so this was a completely new concept for them. Should I have been straight to the point with them and explained that he had died and they wouldn’t see him again? For children who are just getting to grips with understanding days of the week and months of the year, forever is a long time to never see someone again. 

So what about the question of where he has gone? How on earth do you answer that question? Whatever your beliefs and if you have a faith or not, it’s an enormous concept to understand as an adult, let alone a child, My 3 year old, Joe, is in a “Why?” phase and was shocked that he had blood in his body recently. We needed to be prepared to deal with difficult questions. I guess that's just part of parenthood - to guide your children down the path of that middle ground of trying to prevent pain whilst educating them and helping them understand. Undoubtedly they would be sad about the loss of a loved member of their family. I was dreading telling them.

As it turned out events took a path which helped me be able to deliver the news in an appropriate way. A chance conversation with Jake's Teaching Assistant in School on a Stay and Play visit, happened the morning after his Grandy passed away. When I collected Jake from School, (which I can only do when I am on annual leave from work, so a rare treat for us both!), his teacher came and spoke to me. She said they had read a book with Jake about Elfie the dog who was old, grew sick and died. She said they told him that Elfie had gone up to heaven and was up in the stars. As part of the National Curriculum, Primary Schools are studying “Space” this term and I had been surprised earlier that day, at the level of detail the children knew;  the year of the moon landings, Apollo 11, about gravity and all the planets. Fantastic stuff.  Jake's response to Elfie being up in the sky with the stars, was that “he was with the moon.  And Neil Armstrong!” it gave us all the chuckle we needed. Even the staff had welled up reading the book with him.*

The advice from school was not to say that he had gone to sleep as that could set you up for future problems about being afraid of sleeping. That was really helpful as it could easily have been framed that way in order to soften the blow. They also recommended Winston’s Wish Charity which had some helpful advice

So now I needed to tell them both about Grandy.
I decided to tell them over dinner, largely as I’d been putting it off all day and didn’t want it to creep towards bedtime. I also didn’t want to make a big thing of it and “sit them down to tell them”, I felt that if it was explained when there were no other distractions (food aside) then hopefully the message would be clear. I explained that Grandy had died and gone to heaven, up in the stars, he wasn’t sick any more, but we were sad about it and wouldn’t see him again. Jake didn’t say anything, he was busy eating, but Joe asked “Why won’t we see him again? Why has he dived?” No, that’s not a typo. It was a new word for him, so we went back over why he had “died”. I explained about how people are born as babies and they get older and people die. It happens to everyone! He said “That’s sad!” He also asked about the stars and how Grandy had got there “Did he go in an aeroplane??” No Joe. “Well how did he get there then?” Tricky question that one, I had a brief flash in my head of trying to explain the separation of the soul and the body and considered the inevitable questions that would follow. So I took the easy path “It was just like magic, he’s in heaven now and not sick any more.” That seemed to help but I didn’t really know how much had been understood and didn’t want to press the matter. 

The next day, we were in the car going to the Museum and out of the blue Joe said “Mummy… Grandy died.” Yes Joe, “Magic up in the sky! Oooh A DIGGER!!!” as he spotted building work out of the car window. You have to love how kids are very much in the moment. 

Later that day, we read the book that school had sent home. It was a sad book about Elfie growing up from a puppy and how he grew old and died. It helped to reiterate the facts. I think Jake has a basic understanding of what has happened, but he isn’t giving too much away. Joe on the other hand is a chatterbox. He said after the book “Grandy isn’t sick now. But Nanny is sad. We can draw her a picture to make her happy!” And they both worked hard on their pictures for their Nanny. :)

I love that he thought of something practical to help, I think we must be doing something right as parents ;) I hope that I haven’t set us up for future problems, but what a tricky thing to go through. Another parenting first!

In considering life and death through the eyes of my children, it raised the question of how many of us actually give thought to those who are alive and with us now?  Many of us spend so much time worrying about what has gone before or planning for the future that we neglect living in the present. One day the people around us will have grown up, might have passed away, time passes so quickly. So my challenge to you is to consider all that you have in your life right now. To stop worrying about the past which can’t be changed, to live in the present and not focus too far into the future that we forget to live right now. We only get one chance at this life, it is time to shift your focus and embrace it to the full.

In the words of Joseph Scott, aged 3, wise beyond his years. “Ooh a DIGGER!!”

*I'll Always Love You by Hans Wilhelm

Tuesday, 9 February 2016

Separated At Birth

Last night my youngest son, Joe, was busy playing after his dinner. His big brother was practising writing his letters on one of those magnetic boards which wipes clean again (fabulous invention and no mess either!). So in looking up to him, as all three year olds tend to do, he decided he wanted to draw on his board too. 

He seems to have a creative streak and enjoy drawing, painting and colouring in. It has been largely scribble and the odd shape to date so my expectations were low as to what I was likely to see…

“Mummy, this is a picture of you! Wait, I’m just finishing the hair…”


I am pleased to say that it is indeed a fabulous picture, I am delighted that he seems to have inherited some artistic ability. Just a shame I look like Herman Munster…


Five Years On

Five years on and the memories are still vivid
Of a tiny baby being wheeled away, off into the twilight of life versus death
Five years since the longest wait to see you again
Covered with wires, the bright intensity and babble of foreign medical languages which we had yet to learn.
Five years since the sleepless 3am visits and somehow existing
With the unexpected kindness of staff, family and precious friendships
Five years since we took you home for a while, heart working well
And yet you were not well, the sleepless nights, the return to monitors, oxygen, constant alarms
The delayed return to work, the fear that we didn’t know what was wrong, of holding our breath and living on pins
Would you make it? 
Sitting on the campbed in new makeshift residence and living out of bags
The sun trying to force its way through the blinds and tell us it was going to be ok in the end
Five years on, you are a picture of strength, happiness and cheekiness
Five years on we are stronger and almost healed…

Today marks the five year anniversary of my son Jake’s open heart surgery. To say it was a tough time is really quite an understatement. With thanks to Alder Hey Children’s Hospital and Ronald McDonald House for all their fantastic work and to family and friends for their love and care.