Counting Our Blessings

A few weeks ago I couldn’t imagine anything as physically crippling and mentally tormenting as losing my son.  A very strange thing happens though when you are faced with the reality.  You start to look for the “at leasts.”

I haven’t used the words “at least” nearly as often in my entire life as I have since my amazing wee boy died.  Early on we said “at least he wasn’t in pain” “at least he didn’t suffer” “at least his life was full and happy” “at least it wasn’t an accident and there’s nobody to blame” Of course none of this brings Jude back but we were truly grateful that we had five years and four months of him full of health and happiness.  He didn’t have any of the restrictions of PH that he most certainly would have if he was diagnosed earlier (of course he didn’t have the slightly longer life the medication would have provided either but we cant dwell on this)  We didn’t have to make decisions about transplants or palliative care that would’ve left us all terrified and doubting  our role as parents.

Of course to people who haven’t lost a child this sounds like cold comfort, but what option did we have?

We also had other things to be grateful for.  The condition is very occasionally know to run in families so our daughter being given the all clear was a huge relief.  All our memories of Jude were a comfort nearly straight away.  We were told that children born with his condition are usually diagnosed at eight weeks old and all the figures suggest that patients who have severe ph die within 3 years of diagnosis; 2 and a half years of bonus time.

As a parent of a child, your worst fear is that something bad will happen to them.  Once they die, that fear has gone.  Its replaced by something more terrible that can’t be brushed aside with a quick cuddle, but it is your new reality.  There’s no option for an opt out.  A week after Jude died my husband bumped into someone from his work who was out with her four year old daughter.  She asked how we were getting on and added that “she couldn’t live without her daughter” as she held tightly to her chest.  She has that fear, and more importantly, she has the fear of carrying on without her child. It wasn’t the best thing to say but it was purely instinctive and I could relate to it.  There is no option to join your child or cease your life and that is sometimes the hardest part.  You need to carry on and try move forward with the pain and the longing.

We need to live our lives more fully than we did before and appreciate how fragile life is.  It is a painful lesson but very humbling and very important.

By judesmum

Bad day

Had to leave work today.

I’d left Isla at home with her dad.  She had a sore tummy but she was fine, better to be safe than sorry though so she stayed at home with the promise of Harry Potter and boardgames About an hour after I got into the office I had a call from home to say she’d been sick.

Now, my reaction pre Christmas would’ve been  “Oh I’m sure she’ll be fine and I’ll try to get home early this evening and give her some extra attention”  I might have stopped off for a magazine on the way home.

Now that I have fallen down the rabbit hole, my reactions are completely unreliable.  I have lost all perspective.  Jude didn’t die of an upset tummy.  He died because he had a rare and incurable condition.

I freaked out and had to go home.

I find myself wondering if it will always be this hard.

 

By judesmum

Saying Goodbye

Because Jude died during the Christmas holidays (just) things took a little longer to organise than usual.  We had lots of things to “organise” but these details don’t need to shared with any reader who has never done the task, and anyone who has, already knows.

What I will say about the funeral and the process of saying goodbye is that I was remarkably calm and in control.  My husband and I made all the decisions and sat in all the meetings ourselves and the day was exactly what we needed it to be.

Although it was in a Cathedral and it was a priest that we know socially who offered Mass, it wasn’t an overly holy affair.  I mean it was a full Mass and all traditions were observed in that sense, but it wasn’t about God or his will and even Abraham wasn’t mentioned.  It was about Jude.  It was about who he was and what he meant to everyone who knew him.  There were no trite words or talk of a divine plan.  There was no making sense of what happened or offering platitudes.

It was simple and beautiful and a perfect opportunity for everyone to say goodbye.  Of course we had already said goodbye but I told my daughter that this was everyone else’s chance.

The priest asked if we wanted to speak about him but at the time we thought we probably wouldn’t be able to .  I wrote a very ineloquent and short thing for him to read out but it really said everything it needed to.  The hundreds of people who came already knew who he was to us.

Here is what I wrote to honour our wee angel:

Jude was such a clever, kind and affectionate boy and he spent every day of his short life secure in the knowledge that he was loved and cherished by so many people.

Every morning would start with a huge cuddle on his mummy’s knee and he heard the words “I love you” about twenty times before breakfast. He loved to play with Isla and although they would argue, there’s no doubt that they were the best of friends. They enjoyed pretending to be in Hogwarts, cycling in the patch and playing in the park every day after school with their friends.

Jude loved being thrown around by his daddy, chatting with his mummy and he cuddled up to hear Harry Potter each night before bed.

Although it is so hard for us all to say goodbye to the boy who was our world, it is important for us to focus on how blessed we were to have him in our lives for those amazing five years. It is a huge comfort to us to know that Jude never knew he was ill and he never suffered, even at the end.

We will think of him every day and we will honour his memory by being as happy and positive as he was as we carry on without him.

By judesmum

How to talk to a bereaved parent(?)

On the night my son died we got our first card through the letter box at 7.00pm.  We had only been home back from the hospital for an hour and a half and at first I was shocked that someone already knew.  I was terrified to open it.  If I open a card of condolence I am officially a bereaved person.  Of course, hours earlier I had held my child’s body in my arms so I knew I was already bereaved, but it was mine and it was private.  I opened the card and it had the most comforting words that told me someone else cared about Jude and about us and I really felt that he had touched the person who wrote it.  This was my first lesson in talking to bereaved parents.

Before December 2011 I had never lost anyone close, I lived a pretty charmed life and in many ways I was still very childish and naive in my outlook.  I shied away from stories of tragedy and ill health and I must admit, to my shame, that I never wrote a sympathy card to anyone.

The second card came two hours later and it was hand delivered by three of my friends who live nearby.  They posted it and then stood at the end of my path.  I  immediately asked them in.  They only stayed for ten minutes but later they would tell me that they were so glad that I opened the door, so am I.  From the start we opened the door to all the people who came, we asked people round for coffee (and wine) and we met everyone’s eye when they said they were sorry.  This was how we wanted it and this is how we communicated that to our friends.  Thank God.  We were clear about how we needed people to be with us and that has been so important in helping us to heal.  Lesson number two was don’t expect people to know what to do instinctively, show them what you need them to do.

My friend flew over from Australia for Jude’s funeral.  This was a huge deal and we were so grateful that she made the effort for us all.  Before she came, she had time to think about how to deal with us, as an academic she turned to books and articles to see “how to talk to bereaved parents”   She was so worried and nervous about saying the wrong thing that she read up on it.  Unfortunately there are no books tilted “How to talk to Fiona about the death of Jude”  and so all the things she thought she shouldn’t say, “at least you have Isla,” “He had a happy life,” etc were exactly the things she needed to say to me.  Lesson number three was that we all deal with things differently and there is no manual.

There are still one or two people who don’t know what to say because they have waited too long to get in touch.  They are probably waiting until we are feeling better and therefore easier to deal with.  All that’s happened though, is that too much time has passed.  I am a different person and they haven’t travelled the road with me so it will be awkward when we eventually do meet up.

The biggest lesson I have learned is not expect people to know how to react.  It is such an unusual situation and I know people will be nervous about saying the wrong thing in case it upsets me.  Saying nothing is the only thing that can upset me, avoiding my eye or pretending I’m not there will upset me.  Nothing can my make my situation worse but some kind words, a hug, or a chat about what people remember about my amazing boy will always make it slightly better.

Back to Life?

So, two months after my world crashed down around my ears, I have returned to work.

This has been a difficult move and  although I have very understanding colleagues, it’s difficult being away from home, from my husband and daughter and from all things related to Jude.

Day one saw me changing my screen saver so that I wouldn’t be surprised by the picture of him on his first day of school, or cuddling his sister at the park.  I can’t have him there yet.  I need to be strong there.  If I cry at work, I’ll never stop.

 

By judesmum

Jude’s Bench

After Jude died we thought about a fitting memorial to him.  He wasn’t buried so there would be no grave.  We thought about planting a tree but it appears they can only be planted in memorial gardens near cemeteries.  Our boy had never been to a cemetery, we couldn’t go there to remember him.

We decided to have a bench commissioned  in his memory and have it placed in his favourite park.  The park he played in almost every day of his short life, where he went after nursery then school with his friends and played “Pirates and Mermaids”

Here it now is and we pass it 4 times a day on the way to drop Isla at school and collect her at the end of the day.  Last Sunday I took her to the park and there was a little row of daises on the top of it.  People loved Jude and they will always remember him.

 

By judesmum

Pulmonary Hypertension

So we’d gotten through Swine Flu, Chickenpox, Meningitis Scares (overactive imagination) and two fairly bad colds.  Surely the only thing that could go wrong was a road accident, no?  But we live in a small estate and our kids are almost as risk averse as their parents, so we can sleep easy.

Who knew that there were any number of fatal diseases lurking around the corner waiting to snatch away our children, and with them, our plans and dreams?

Jude was admitted to the Sick Kids with a chest infection on the 22nd of December.  About three minutes after we got there I knew it was bad news.  I counted the consultants and doctors who came into A&E to see our poor wee boy, sitting up in bed wearing his Lightning McQueen jammies and holding my hand.  I knew enough to realise this was no in and out, precautionary visit.  I also understood that a Cardiologist wouldn’t pop in just to add numbers to the other three consultants who were hovering around, whispering and checking equipment.

The following day he had an echocardiogram and the nurses talked in hushed tones of ventilators and “getting him through the chest infection first”  I sat with him and I told him the story of King Arthur and the Knights of the Round Table while he ate Rice Krispies.  We also talked a lot about whether he would see Santa Claus from his hospital window (I knew he wouldn’t be home in time for Christmas).  I was cuddling up to him in the bed when a nurse overheard him tell me that I was the best mummy in the world.  She checked that she’d heard right then commented that it was such a lovely thing to say.  I didn’t mention that it was daily occurence in our house and that Jude and I were practically attached at the hip.

When we met the cardiologist at lunchtime her opening gambit told us all we needed to know.  “I have some very bad news for you , considering you thought you had a healthy boy”

The next two hours were filled with worry anxiety and preparations for a potential move to a Glasgow hospital or Great Ormond Street if he could make the journey.

It turns out he couldn’t make the journey and he slipped out of consciousness at ten past three in the afternoon and died.

The next few hours are as clear as though they happened today.  We went into the quiet room with his body and washed him, dressed him in clean jammies and then after we all had a chance to say goodbye, we carried him to the Chapel of Rest where we laid him in a bed surrounded by teddy bears.  Then we left.

We left knowing that we hadn’t left our boy at the hospital, there were no worries about whether he would be cold or alone because we both knew at our very core, that he wasn’t there anymore.  That realisation and understanding helped.  Without it, we’d never have left him there, at the undertakers, in the crematorium, anywhere.

We did visit the following day but it was a mistake and he still wasn’t there.  That was the last time we saw our gorgeous wee boy with his bright blue eyes and messy blond hair.

By judesmum

Early Days

Two months on from the shocking death of my boy, I find myself reflecting on the events over December and January with a mixture of abject horror and a good dose of pride that we  managed to do some of the most unthinkable tasks and still stand at the end of the day.

As a mother I would often proclaim that I couldn’t cope if “anything” happened to my children.  By “anything” of course I meant “anything bad”  but I really would’ve wrapped them both up in cotton wool and walked them to school until 5th year so that  I could stop “anything” from happening.

Both my children were breastfed for a year, wore real nappies (no chemicals) and ate only home-made, organic food.  When they reached one year old I breathed a sigh of relief and really thought, okay we’ve made it.  Of course I knew that children died.  We all know.

But we don’t really, not until it’s our child lying in the hospital bed being given the last rites.  Until we are hanging up one stocking instead of two the day after he dies.  Until we are sitting in small office with a box of hankies picking out a handwoven casket that looks like a Moses Basket. Until we have to face the pain of waking up every morning to the heart wrenching pain of not having him here.

Though I did all of these things and more and yet I’m still here.

This blog should help me to remember this journey and hopefully honour the wonderful wee boy who lived every day as though it was a gift.

By judesmum