How do you go on?

We were sitting on Jude’s bench yesterday after school, watching our kids play in the glorious sunshine when my friend turned to me and asked, “how do you go on?”   At first I though it was a rhetorical question or an observation, but then she looked me straight in the eye and asked again, “how do you go on, how do you get up in the morning?”

I told her we have no choice and we have Isla to look after but I suppose there’s more to it than that.  I think I also have hope too.  Hope that it will get easier.

This blog was started to honour Jude but also to help me to track my progress since the beginning of this terrible journey.  There has been progress since then and there continue to be little milestones each week where I can see things are getting better.  I don’t expect to ever be the same as I was before I lost Jude but I can still be better than I was before I had him and that is good enough.

The first two days:  I couldn’t go anywhere without David.  I could still take care of Isla and make her meals but I couldn’t eat myself.  I had to sit in front of the radiator to feel warm, I was cold to my core.

The first two weeks: I stopped crying all day and mainly felt bad in the morning.  By afternoon I was too tired to cry.

Once Isla went back to school, we started walking 14 miles a day and became a little bit more practical about what had happened.  We looked forward to collecting her from school, that was the first happy feeling we had.  By the time the mid-term break came we had walked 500 miles and talked and talked over all the implications of what had happened.  This was our therapy.  It was free, healthier than wine and it helped my to regain an appetite and sleep well at night.

Now we are weeks down the line (I’m not keeping track of how many) and things are definitely better than they were in the beginning.  Last night Isla slept in her own room for the first time since Jude died and she even had a longer lie in!!  I typically have two really bad days when the tears are pretty close by but the  rest of the week feels a bit easier.  Someone told me that her first year after losing her precious daughter “passed gently”  that is really what I am hoping for.

The friend who asked me how I cope has had a terrible year too.  She’s had to face up to the possibility of leaving her young kids as she has battled cancer, but she’s winning and she’ll be fine.  I think I will be too.

 

By judesmum

Help?

There was an interesting interview with Amanda Holden in today’s Observer that’s set me thinking.  In it she says that she’d like to see more grief counselling available on the NHS and she states the fact that many parents aren’t offered counselling until after two weeks following the death of their child.

When we left the hospital, shattered and armed with a bundle of leaflets we were told that someone would be in touch.  The leaflets informed us that we would be contacted by a family support officer who would be able to support us in the options for grief counselling.   It was obviously Christmas time so things were a bit busy (as we quickly got used to being told by the various people we had to deal with) we waited to see in what guise this support would come.  Nothing happened.  Not after two weeks and not after three months.

Instead of being offered help and support to deal with such a huge and unexpected loss we were left to our own devices.  Thankfully we have amazing friends and family who were of tremendous support from early on and continue to be now.  They came immediately and let us talk and talk about our boy and our feelings.  I feel as though this was better than a meeting with a stranger who never knew my boy when he was alive, but really I’ll never know.  I think about the people who aren’t as lucky as me with their friends and people who lose their loved ones and have nobody else.  What the hell are they supposed to do?

In the days when people regularly lost children they were expected to suck it up.  Stiff upper lip, move on with their lives, don’t mention it.  I can’t stress enough that I don’t feel counselling in the traditional sense would’ve helped me but nobody knew that at the time, they didn’t sit me down and assess my capacity for pain and grief.  They didn’t audit how many friends and family I had and how compassionate they’d be.  Instead I was sent home without my boy but with lots of helpful leaflets full of empty promises and out of date information.

By judesmum

Retail Therapy

I’m no Carrie Bradshaw but I love a good old shop.  When we’d be in a department store my kids would chorus in unison “quick, don’t get stuck in the clothes mummy”

It will come as no surprise that I can now walk through the Mulberry section in John lewis without so much as a sideways glance.  The only time I’m in the clothes department of a store is when it’s en route to the toilet and even the Boden Kids catalogue lies on the kitchen counter unopened as I grimace at the picture of the wee smiling, blonde boy on the front.

The thing is though, my husband wants me fixed.  He has suggested three shopping trips in the last two weeks, he’s opened the Boden catalogue and told me that Isla could do with some new dresses.  Two weeks ago he won a bet on the cycling and he bought me a Nespresso coffee maker.  I know what he wants, I know that he’s trying to do everything he can to make me happy.  Last night, I came home from a busy day at work and he’d booked Breaking Dawn on box office and bought ice-cream for me.  He hates Twilight and he doesn’t even know what’s going on in it but he sat with me, eating ice cream and flinching any time it looked as though I’d cry.

He’s hurting too, but he can see where I am and he’s struggling to find something to take my pain away.  The only thing that can do that is my wee boy but he’s really trying.  The thing is, there are days when I feel okay and there are days when it creeps up on me unannounced, unnerving me.  It’s just hard to predict when it will happen.

Last week I was leading a training session for teachers and I was really in the zone, professional head on and gearing up for a busy workshop.  Just as I started a woman who I’ve met on a couple of occasions came in and gave me  that look to indicate that she’d heard what happened.  It completely caught me off guard.  I was okay and I powered through but after the session I cried in the car all the way home.  When I’m standing in a room full of colleagues, trying to appear professional and engaging, I have no idea whether some of them know what has happened.  If they do, do they sit there and think how can she stand there and pretend everything’s okay or poor lady, her life is over?

It’s all a bit of a confusing mess.  I do know that I have less bad days than I had at the beginning though and as it starts to turn to spring I feel more hopeful than I did last month.  Not ready for a trip to the shops but not convinced that I’ll never be happy again.

By judesmum

Still Crawling

In the week that Isla went back to school, they had a visit from a health and wellbeing troupe who worked with her class on emotional literacy.  This had been planned well ahead of time but obviously it was ideal for Isla.  Friends and fellow teachers had all pointed us in the direction of various bereavement charities for children.  Some of them I’d worked with for children I’d taught who’d lost a parent so I already knew about all the good work they did.  We kept it in mind as we watched for any signs that she was struggling with the enormity of what had happened.  She has always been a secure and happy girl and we encouraged her to talk about Jude and how she felt about him.  We shared that he was a very sick boy and that we were all so lucky to have had such a lovely and happy life together.  She started to talk of him as being a little miracle and she told us that he would be in heaven watching over us all (did they have toy shops in heaven?) She was coping well and although she couldn’t grasp the size of the tragedy or the finality of it all, she seemed to understand and assimilate it into her world pretty quickly.

The people who came to the school did lots of exercises and workshops with the class.  One them was to ask the children to move around according to how they felt.  If they were really happy they should run, quite happy they should  jog, walk if they were feeling okay and crawl if they were sad.  Isla told me that she walked that day but she felt that soon she would be running again.  I asked her how she felt the rest of us were doing and she told me that daddy was walking with her and they could sometimes run but that I was crawling.  That was only 3 weeks after my life fell apart, I felt okay with the diagnosis. We’re now 3 months on and she says that I’m walking now and she can see that I’m feeling better.

Of course I know that I’m still crawling.  I’m just getting better at hiding it.

 

By judesmum

What about the ashes?

We decided pretty quickly that we wouldn’t have a burial.  It was a number of factors really but it boiled down to the worry  about leaving him somewhere or going to a cold cemetery to remember him coupled with the fear that seeing the casket lowered into the ground would make me want to fall in after him.  We didn’t tell Isla that he would be cremated, it’s just too scary.  That said a helpful “friend” from school explained to her that because she didn’t know where the grave was he must’ve been burned.  Isla just asked us outright if this was true.  Rightly or wrongly we told her his body was buried where we left it at the Crematorium.  It occurs to me now that perhaps cremation is scarier than burial but really neither is ideal is it?  It’s definitely better to have your child living and breathing with you.

Collecting the ashes of our beloved son was the worst thing we had to do after we lost him.  It was surreal to be handed a small woven box with his name carved onto the top.  I was terrified to touch it and determined that we should scatter his ashes as soon as we could because I couldn’t bear to have it in the house.   We thought about the top of Arthur’s Seat or the local park.  We discussed planting a tree in the garden and burying the ashes underneath it.  We really went round in circles until it reached the point where I was no longer frightened by the little square box, in fact I liked that it sat in his room like it was part of him, a physical presence.

I made up my mind that I’d like Jude’s ashes to be put in with me when I die.  I don’t care what they do with us then but I want us to be together.  The Guardian had an article about this very thing at the weekend.  I’ve linked it here.  It was very well timed and I’m so glad that I hadn’t already rushed out to scatter them.

How depressing to have to make decisions like this but they have become fundamental to our discussions in the past few weeks, part of normal family life.  We can flit easily between making plans for dinner and talking about the implications of inherited cardiac conditions and mortality rates.  I have gone from someone who never discussed death to someone who has made clear that my funeral notice should not have mother to Isla and the late Jude and someone who although not actively looking forward to my own demise is now somewhat ambivalent to the prospect.

By judesmum

What would have been

This week I have spent a lot of my time on the Facebook page for parents of children with Pulmonary Hypertension.  These are the kids who are living with PH and their carers and it really brings it home what this disease does to the whole family.  There is the mother who has been admitted to hospital because she just can’t do the constant care by herself, the siblings whose lives have been altered beyond recognition as they watch their beloved brother or sister cope every day with a disease that keeps them hooked up to machines, in pain and unable to take part in simple childish activities.  I must admit to a degree of shame that I’m a voyeur, stalking the families, feeling a mixture of relief that my boy was spared that agony and jealousy that they still have their children with them. They are my other reality.   This is what my life could have been.

Every time I talk about what Jude’s life would’ve been  like (I do this a lot) I always feel the need to preface it with”I would’ve done anything for him.”  My husband says that goes without saying, but I need to say it.  I would’ve done all the things these parents are doing and more to have him with me now for one more day or hour, or even one more wraparound cuddle on my knee.   But what would it really have been like going to an “end of life” meeting and making plans to ensure that his last days were slightly better than agonising?  How would we have coped with the depression and anxiety that a severely restricted lifestyle would’ve brought to our happy and bright wee boy?  We would’ve coped, of course, there’s no doubt about that.  But at what cost?

The most sobering thing about the stories from the Facebook group is that lots of these families are in America and they find themselves with a very sick child and spiralling bills because palliative care isn’t covered by their medical insurance.  One family opened a Just Giving page to save up for their daughter’s double lung transplant.  They managed to cover all the costs of the transplant but when it failed and they lost their daughter they had to keep the page open to try to cover the costs of the medical bills up to that point.  The NHS might need a bit of work but surely to God it’s a better option than this?

I’m not really sure that I belong in their group but I need them right now so that I can put what’s happened into perspective.  It’s a window to my alternate reality and while I’m rooting for the families on it, I’m soothed by the thought that my boy escaped all their anxieties and pain.  It’s a cold consolation but at least it’s something.

 

By judesmum

People are lovely

When we went the park yesterday evening we there were two girls from the primary school playing there.  As they saw us approaching, one of the girls quickly walked over and moved her bike from where it was leaning against Jude’s bench.  It was as if we would’ve been upset or annoyed.  Of course we wouldn’t have been, but it was nice of them at any rate.

As we got closer to the bench we noticed that someone has planted daffodils right next to it.  How thoughtful.  We probably won’t find out who did it but it’s lovely to know that people care and it really brightened my day.

People really are lovely.

By judesmum

Christmas Past

Every year I would pack away the Christmas baubles and hope that things would be exactly as they were when I opened them the following year.  I knew we were a really lucky family.  We had two healthy, happy and well behaved children who we loved immeasurably.

This year as I hastily shoved the baubles into bags bound for the attic (or the bin) on Boxing Day, I felt sure I’d never want to see them again.  Memories of that lovely day at the start of December when we all decorated the tree together as we listened to Slade blaring out from the iPod were too painful.  But we probably don’t have that luxury, just as this year we didn’t have the luxury to pull the covers over our head and ignore all things festive.  Isla was still waiting for her visit from Santa and we still had to go through the motions for her.

By the time Jude was sick we were are geared up for Christmas and all the presents were bought, wrapped and hiding in the outside cupboard for “Santa” to deliver.  As he lay in the hospital bed, his heart being massaged to keep him alive long enough for the priest to arrive, I cuddled him and wailed at him and then I stopped.  I had something very important to tell him.  I held him close and told him that he was such a good boy and that Santa had been going to bring him the light sabre that he had asked for.  I know that he couldn’t hear me and that it would make no difference to him whether there was a light sabre hidden in the outside cupboard but I needed to tell him.

Christmas morning was tough.  Isla was still excited and looking forward to presents, games, visitors and chocolate before breakfast.  We survived it, just.  The problem was, and still is, what the hell do we do with the sack of presents that are sitting outside?  They were never his so they don’t hold any sentimental value in the way his toy cars or lego sets do, but I can’t bring myself to move them.  He deserved them.  They should have been his.

A few weeks ago my in laws came up with a plan for next Christmas.  They opened with the line “Christmas will never be the same” and proceeded to invite us to go on holiday with them and “escape.”  It was a well meant thought if very misguided on two important counts.  Firstly we don’t have the option to “escape” Christmas.  There is seven year old girl who also deserves her presents, christmas trees and chocolate before breakfast in her own house and if we managed to give her that this year then surely we can do it again.   The second reason is more fundamental.  My mother lost her grandson so how on earth could I run away and deprive her of her only child and granddaughter at the time of year when we need to be strong together?  Christmas will never be the same, but then neither is a trip to the shops or a walk in the park, there is no escape.

 

By judesmum