The Box

David went to school today to collect Jude’s things.  It has taken us a long time to have the courage to do that but as it’s the end of term we thought we should.

I was at work and I’d put it out of my mind but he texted me to say how it was really lovely but really hard.   I lost it and, for only the second time I had to leave.  I drove in the inside lane all the way home as I struggled to see through my tears, rushed in the door and tore the lid off the large blue box.

It had all his work from his five months in primary one, an unopened Christmas present from his teachers, a book of condolence from the parents, photographs, his gym kit and letters and cards written by his classmates about what a good friend he was.  It was really lovely but so so hard to look at.  One of the worksheets asked what he was most looking forward to in Primary one and he’d said, “learning why Batman can’t fly”. He had high expectations my boy and I’m not sure that school quite rose to that.

 

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By judesmum

That day

Six months ago tonight I gave my wee boy a bath.  He’d had a sickness bug all week and was off his food but he seemed to be getting better and we had our fingers crossed he’d be fine for Christmas Day.  When he came out of the bath I noticed that his little fingers and toes were blue.

David read him his book and put him to bed while I googled his symptoms and called NHS 24 (for the second time in two days) They told me to go straight to the local out of hours surgery.

I picked him out of bed and popped his dressing gown and slippers on and I took him the short journey while David stayed at home with Isla.  I wasn’t worried.

The doctor listened to his heart and blew on the ox sat monitor as she couldn’t trust the reading.  An ambulance was called and we cuddled in all the way to the hospital.  I still wasn’t worried.

Things were bad at the hospital and I soon realised everything was about to change.  We met the cardiologist and a friend of mine who is a consultant there came in to see us.  She told us we were in the right place and I knew we were but I still knew it was bad.  They kept asking if he had been born early, did he ever have trouble breathing?  Did he run around and play with his friends?  It was as though they didn’t believe that he had been a perfectly healthy (overdue) baby and a boisterous and happy child for five years, right up until 5 days before when he caught a tummy bug.

David and Isla came up to the hospital.

They had Christmas decorations in the hall and Jude couldn’t see the star from his bed in A&E.  I took a photo and showed it to him.

David and Isla left and we went upstairs to the high dependency unit (not ITU) I was given a room in the parents’ apartment but I couldn’t leave him.  Eventually at 2.00am he went to sleep and the nurse convinced me to go upstairs to sleep.  I went because I knew that I needed  to be strong the next day.  I made them promise to call me if he woke up.  I fell asleep in my clothes crying my heart out.   At 4.00am they called to say he wanted me.

I sat by his bed until David came up with Isla at 9.30.  I took her for a walk and promised her we would have a second Christmas once Jude was home.  Jude had an echocardiogram at 10.30  and we were due to see the consultant at 12.30.  David called his parents to come over and look after Isla.  He took her home to them then came back up.

That meeting changed everything.  Once Jude was better he would go to Great Ormond Street.  It was very serious but there was no hint that he would go so quickly.

David went home to take Isla to see Santa at Dobbies because it had been planned for so long and there was nothing they could do there.   I sat and cuddled my boy.  He wasn’t improving so plans were made for a transfer to Glasgow.  He would be put on ECMO, the blood would be taken out of his body and oxygenated then put back in.  I texted David to tell him to come back. About 10 minutes later they tried to give him another dose of antibiotics and he started to get very upset and started to cry and ask to go home.  His oxygen level dropped to 30%, his eyes rolled back and I was pushed out into the quiet room.  I called David and told him to hurry up.  I heard an alarm go off and  I fell to floor sobbing and screaming.  I was by myself and I knew it was over.

Soon David and Isla were there, then everyone was there.

That’s how it happened, it’s not pretty and it’s not eloquently put but it needs to be recorded.

That was six months ago.  Six months since I looked into his huge blue eyes and saw his smile.

I miss him more than words can ever say.

By judesmum

Talking about Jude

I had a difficult couple of days at the start of this week. I just felt really sad and for the first time I also felt that guilt that they all talk about.  Not that I think I could’ve done anything to help Jude, it was inevitable that he’d die from almost the moment he was born, although we didn’t know that, but as his mummy it was my job to protect him.  These thoughts have been going around my head for the past two days and I’ve found it pretty hard.  There’s also the constant dull ache of missing him which I expect will never go away.

I think that part of the problem this week was that I had a busy weekend and spent a lot of the time not talking about Jude.  I spent a whole day with some people who really won’t talk about him.  I think it upsets them, or they worry it might upset us.  I find it difficult and tiring and although I still talk about him, their lack of response frustrates me.  At home and with friends we talk about him all the time.  Not always about his death or how much we miss him but just in the same way we talked about him when he was here, remembering funny things he did or said and these people know that we need to hear his name.  He needs to remembered because he can’t make any new memories.

Kids talk about him all the time.  My friend’s wee boy asked what would happen to all his toys just after he died and instead of making us upset (she was mortified) it made us laugh and it was a gift to hear his name from someone else.  Another of his friends was talking about how they won all the races at the playgroup sports day last year as he was showing me his medal.  Kids aren’t frightened of making us cry, they say his name as though he was still here “Can I have a go on Jude’s scooter?” and I love them all for it.

In days gone by when losing a child was much more common people were expected to contain their grief and never mention the child.  These days it’s much more acceptable to talk about grief but child loss is so rare that people don’t know how to react to bereaved parents.  It’s a bit of catch 22.   I’m so lucky to have friends who are happy to remember my boy and I hope we can still do that 20 years from now.

My two oldest friends have done very special things to show that they care about Jude and about us.  Apart from the constant stream of communication from both of them (even when I’m too tired to reply they still email, text , write long letters) the last minute flight from Australia for his funeral, holding my hand on our first get away without him and listening to me talk over and over about him as I struggled to take it all in.  My two oldest and closest friends, also happen to be the most determined and talented people I know.

Lisa, I have know since birth, we were each other’s bridesmaids and she is the godmother to both of my children.  She is on the last few miles of a 500 mile walk in aid of a children’s hospice in memory of Jude.  She didn’t do this, like David and I, as an excuse to get out of the house but she fitted it around a full-time job and three kids!

Jill my oldest school friend and drinking buddy is a journalist in Australia. She started to write a book about her year of sobriety and her early drinking days in Scotland last year, when my only worry was how my teenage self would be reflected in print.  She has included details of her time with Jude last summer and when he died.  She asked if I was okay with this and of course I was.  It means that his name is written down somewhere in print and people who read the book will know that he was here.

 

 

 

By judesmum

Missing out

Isla seems a little bit preoccupied on what Jude has missed out on lately.  She often comments that it was a shame that he didn’t make it to Christmas eve to see Santa at Dobbies or Christmas day  so that he could’ve opened his presents.  We watched the film Men in Black the other day and said that Jude would’ve loved that film.

I felt like that in the beginning, especially on Christmas day.  I felt like that to the extent that I didn’t want to eat anything if he couldn’t and I didn’t want to enjoy anything if he couldn’t.  I would rather have stopped breathing if he couldn’t, if I’m being completely honest about it.  But that has passed.  I feel like I can’t count all the things that he’ll miss out on in his life, I can’t project him into the future and imagine him missing out on his birthday, Christmases to come, high school, wedding, kids.  There are just too many to think about and I can only imagine him being 5 and missing out on the only thing he really needed, his family.  Simple things like cuddles, stories, treats and long chats over a scone and jam on a Friday morning that’s what he’s really missing out on, but at least we had it once.  It hurts so much that he’s not here, not because he’s been robbed of all the big life experiences, but because he’s not here to be cuddled and tickled and to cheat at Monopoly.

When he died we got hundreds and hundreds of cards but one really stuck out.  It was from David’s relative who has nursed her 45 year old partner for the last 6 years after a really bad stroke and it said,

“some lives are short and wonderful and others are long and full of pain.”  I know what kind of life our boy had and I also know that the alternative wasn’t an option.

By judesmum

Things change

Last summer

Tonight we went out for dinner.  A table of three.  The thing with that is, there’s always an extra chair.  No problem to most families of three, no significance.   To us it underlines the missing person, it attracts my gaze throughout the meal.

Beside us there was a happy family of four.  Mum, dad and two little boys.  They laughed and chatted with each other in that easy way that we used to do.  I don’t resent them, I remember that feeling and I hope one day we will do that again but that also highlights the gaping chasm in our family.

The thing that’s getting me right now is how quickly it all changed for us.  One day I was cuddling into a happy wee boy who was recovering from a cold and watching the Cbeebies Christmas Panto, the next we’re leaving hospital a diminished unit of three.  It turned on a dime, without warning.  I arrogantly made plans for the future and discussed summer holidays and Christmas arrangements without a thought that things would be so different for us.

I heard about this address that Joe Biden gave to the families of soldiers who’d been killed in action.  This is a man who knows how quickly things can change.  It’s not about war but about hope after grief.  I pray that he’s right.

By judesmum