How life turned upside-down / the things we do for love.

It’s been a long time since I’ve written a blog. I have drafted a few, but not posted them. We miss him everyday. That’s not going to change.

I wanted to add the two blogs here that were published on the Action Medical Research Website before and following our fund raising run in December.

I also want to write more about Elijah, and how he still impacts our world now. Our life is hopefully about to change again. I am 33 weeks pregnant with Elijah’s little brother or sister. This is naturally a very complicated time emotionally. We are once again so fortunate to be in this situation. It changes nothing, and will change nothing of our grief for him. He will always be missing. ALWAYS. However Amos is hopefully about to get to be a big brother to a baby who lives, and we are hopefully about to get to keep another baby, and bring them home. I will try to write another blog before he or she arrives. For now, here are the links to the 2 blogs from the Action Medical Research website that I wrote a few months ago.

 

http://www.action.org.uk/blog/2013/11/27/how_our_lives_turned_upside_down

 

http://www.action.org.uk/blog/2014/01/10/supporting_vital_research_children_things_we_do_love

 

x x x

 

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Six months

Elijah arrived into the arms of the neonatal team at 01:24 in the morning six months ago today, all 823g of him. I came home a little after 7 to tell the big boys they had a baby brother and to take the older one to school and younger one to the childminder before returning to hospital to see Jenny and our as yet unnamed baby. We referred to him as “Lightning” as that is what Amos wanted to call him and, given the manner of his arrival, it seemed fitting. I remember struggling to hold it together on the school run. Jenny had been really unwell and so a number of people asked how she was. “She’s had the baby – we’ve got another boy”. I remember that feeling of fear and of hope. Hope that everything would be OK, fear that it wouldn’t. I remember people’s faces, their not knowing what to say. The usual “Congratulations” probably felt odd in the circumstances.

And so here I am six months later. Nothing to show for it. There’s a line in Cormac McCarthy’s All the Pretty Horses “Scars have the strange power to remind us that our past is real”. My scars aren’t visible, and sometimes even I don’t notice them. Life goes on as almost normal. Everything seems to be fine. I don’t ever forget about Elijah, but I’m not overcome by grief. Turns out there’s a fine line of grief and I don’t always realise how close I am to that line. A little gust of wind can push me across. If I felt overcome all the time, at least I’d know where I stood. My wounds have a habit of opening up when I’m not expecting it.

Jenny and I are both running a lot. We’ve entered the Percy Pud 10k which takes place in Sheffield’s Loxley Valley. The start/finish is close to the cemetery where Elijah is buried. Jen posted on facebook to see if anyone else fancied entering the race and maybe raising some money for Elijah’s tribute fund.  46 people will be running with us, plus three more are running a 10k down south. We’re a mixed ability bunch, with a handful of marathon and half-marathon runners, but also some who previously only ever ran for the bus. The love and support shown by others and their enthusiasm to remember him is overwhelming.

I first started running regularly after Jen’s cousin Laurie died. I ran the Sheffield Half Marathon with my good friend Martin to raise money for the Teenage Cancer Trust (TCT) Laurie Engel Fund. Back then it felt good to be doing something positive. Nothing could bring Laurie back, but I could at least do something to remember him. So I understand why so many people want to do something to remember Elijah. But now I’m the parent who has lost a child. I’m in this strange place where I’m pleased to be running regularly, pleased that Elijah has been an inspiration to others and immensely grateful for the love and support. I wish we didn’t need this support. I don’t want him to be remembered or to be an inspiration.

I want him to be.

I can’t have what I want. I am truly grateful for the support we’ve received. If you’d like to sponsor us, you can do via this link: http://www.action.org.uk/sponsor/teamlightning

 

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The End of Term.

It’s been a while since I’ve written, we go on holiday in the morning and I wanted to post something before we went. Time is trickling on, and I forget how I was a few weeks ago. I wanted to record where I was before I go away, incase I’ve forgotten by the time I return.

Elijah’s due date in early July, which happened to be James’ birthday wasn’t easy, but passed. This was a false milestone in many ways, because he had already come. I think the scenario which we grieve mostly for was the one in which he still came at 25 weeks, but didn’t get NEC. He would then have come home around the time he was full term. By the time his due date arrived we’d already known for nearly 2 months that he is never coming home. Whether they realised they were doing it or not, I was gently carried through the day by good friends at a picnic, talking about Elijah and the future. Since this date I am finding new babies a little harder to see. I can now associate him with them, as I feel Elijah would be “normalising” in size. I have no envy or sadness about babies, (well, maybe a little envy) I am still very pleased that other babies are born healthy. When I see them I am just more able to imagine how big he would be by now, but he is not. He will always be about the size of a small guinea pig.

At the end of the summer term I’d had a run of decent days, I wrote a few weeks ago about how I was doing, but never posted it:

I’ve spent a bit of time with my friends Dave and Virginia taking photos. Nothing more, just taking photos in the sun and chatting. It’s wonderful therapy, and I come home with something beautiful I’ve created. It’s very soothing. I can’t deny that if Elijah was here, or had never been here, I wouldn’t be afforded such luxury. Of course – it goes without saying that I would give anything for it to be entirely different, but I am glad I can still embrace some fun.

http://www.flickr.com/photos/anarchybunting

Today however has been horrible. No children about for most of the day and quite a lot of goodbyes. The staff at Amos’ nursery will have swapped around come September, so they were saying goodbye to him. I’ve also said goodbye to both childminders. Not for good, Mel is lined up for when I come back to work….but that physical thing of letting go of someone is incredible in its power to dismantle me. It’s also the end of term, and for part of this term I still had Elijah, and with the end of term marks a distance from him, I think. Both childminders have been incredible in their support – not charging us, or babysitting in the evening so we could be at the hospital with him, or just being flexible so we could do what we needed to do. Leaving them, even if just for a term feels like stepping away from their support.

I also got unexpectedly caught out in 2 shops today. In Dunelm Mill at the till, the lady in front of me got her phone out and showed the assistant a photo of her grandson. “He was born at 25 weeks, in February, but he’s coming home today. He’s coming home today.”  ….I just could not hold it together. So I stood face to face with the assistant, and tried to return a blind that was the wrong size, and just cried. So, I felt I had to explain. It’s that horrible thing of not wanting people to think I’m in danger or mad when I cry. So I feel I need to say. The assistant was sweet, and I mooched round the shop until I’d calmed down.

Shop number 2 was the Solo Gallery in Hunters Bar. I said to myself “If the lady is friendly, I’m going to be brave and ask her what I have to do to sell cards in this shop.” (thinking along the creative line) She was really friendly. So I asked her, and she told me what I needed to do. “Is this something you do then?” “No….I’ve got a bit of time off work, so I thought I’d try using it to be a bit creative.” “Oh, I’m so jealous, oh, that’s amazing, I’d love some time off work..etc.”
So, a conversation ensued, she had the option to take August off to be creative, and close the shop. I encouraged her to do it, saying she’d never regret doing it. “Oh, I’m so jealous of your time off.” ….So I said it. I stood there while she was expressing her jealously thinking “My baby has died, that’s why I have some time off, I have a maternity leave, but no baby.” So I said it.

It’s been a few weeks I think since I’ve seen the horror in someone else’s face. She was horrified, and expressed disbelief again that I was able to walk around, let alone feel able to be creative. But, I think I managed to persuade her that I’m not mad, and I am very sad, but I do have a little time, and I want to channel some of my energy into being creative. I hate being the person who has new reality and I have to, most of the time just sit with it with people, because of the horror and sadness it produces in them….and when I do mention it, I feel bad, or like I’m a crazy lady who really shouldn’t be let out alone – especially when mentioning it to strangers. I just wanted to tell her, that this new position I find myself in, I would say, life is too short not to do things you want to do to make life more fun or richer. I think she understood. As I left, she said “I think I needed to see you today, I was feeling pretty miserable. You have made me sad, but in a good way.”

At the Hawley Gig on Saturday we went back stage afterwards, and a man chatted to me enthusiastically and explained in great detail:    a: about a recent anal examination he had,  and b:   twice about how his cat had recently died in his arms. I didn’t say anything to him about Elijah. I just smiled and got on with it. That was the right thing to do. One of our friends in the very early days after Elijah died said she thought you needed “a lot of grace to deal with other people at this time.” Sometimes I have enough, sometimes it runs out. 

That was how I was 3 weeks ago.

At present I am living a pretty sheltered life. No one expects a great deal from me, I am looking after the boys and the house, (although my standards have fallen) meeting up with people and cooking. I guess I’m supporting the household practically while James is working. Although I think James would say he’s working and probably doing just as much as he ever did in the house too. Anything additional to the essential becomes more difficult. Although we have managed a few stop over visitors and visited a few people to sleep over and had some lovely times. Anything outside of our pocket of 4 can be exhausting. I know I don’t have the energy to fake social niceties. This is not intentional, I simply can not do it if I’m not relaxed. I get more flustered than I used to, and a little panicked if put under pressure. I reversed into a BMW on Elijah’s due date, when too hot, in a hurry and faced with a sports car coming towards me with an attitude. I just didn’t have the capacity to keep calm. Thankfully I reversed into a BMW belonging to the most understanding man you might like to reverse into. As far as he is concerned I’m as sane as the next person, “these things just happen.”

In Cambridge last weekend a wasp stung Amos, I can’t deny that I panicked and this whipped him into a frenzy and somewhere in all that, he grabbed the wasp and it stung his face. I definitely have a stronger reflexive need to protect my children, which in that instance was unhelpful. This Saturday Jonah cut his head open on a brick step. He has a small but deep puncture wound that bled enthusiastically. It needed glueing in A and E. I stayed calm and didn’t get flustered. Amos and Jonah however both got very upset. They both showed an immediate and very real fear that Jonah was going to die. Amos nearly choked and vomited with crying, and we left the house with him calling after Jonah “you’re not going to die Jonah, you’re not going to die.” Jonah sobbed in the car that he was frightened he would die as the cut was so close to his brain. The nurse in triage was able to reassure him, and he calmed down remarkably well for someone with a thickly blood stained tea-towel attached to his head. One of his other main concerns was that he’d have to have a bandage on his head and it’d look awful. No bandage, small glued area under his wonderful mop of hair, no-one would know.

Our holiday has been postponed due to Jonah’s wound. He can’t get his glued head wet for 7 days, a beach holiday to Wales would be no fun if you can’t get wet. We are going tomorrow instead. We all need a break. I will review where we are on our return, and perhaps make some longer term plans when term starts again. Then again, we still need to take it one or two days at a time.

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Milestones

Father’s Day, Elijah’s 3 month birthday, 2 month anniversary of his death, due date, royal baby born. Since I last posted, these, and other milestones we’ve been dreading, have passed. I did my best to avoid all the hyperbole of the royal baby. It makes no difference to my situation – Elijah isn’t any more dead because some other baby is born – but it throws everything into sharp relief. We seem to get through these milestones more easily than we might expect. I’ve read and heard that it is the surprise triggers that really get you and that has definitely been my experience. For example, during the Tour de France highlights show one evening there was a brief segment on next year’s Grand Depart in Yorkshire. The person being interviewed mentioned that leading up to the event there will be a cultural festival “starting 100 days before the Grand Depart on 27 March”. That would have been Elijah’s first birthday.

I’ve been through a few other milestones recently. I’ve started to fear social occasions. Small talk can be tedious at the best of times, but when all that is going round my head is “my baby died” it can be tortuous. There have been times when I’ve got into the mood and enjoyed myself – it’s probably not healthy, but booze helps. I’ve been dreading seeing people I don’t know that well who might not know about Elijah. I’ve worried about what I would say if someone asked how I’ve been or similar. I bumped into an old school friend I hadn’t seen for maybe a year or more. She had a new baby. I said congratulations. She asked how I was doing. It felt awkward, but I told her about Elijah. I was glad I didn’t just answer “fine thanks” or “not too bad”. At the same time I felt bad because I could see the tears welling up in her eyes. She said how sorry she was and I came away feeling it had been a positive interaction. I’d dealt with one of my fears.

A few days later, I saw someone in a bar in town who again I hadn’t seen for a while. He asked how I was, clearly not knowing about Elijah. In that split moment, I made a decision not to say anything for some unknown reason. I then felt really weird about it. So weird that I felt I had to let him know and messaged him the next day. He was brilliant in his response – very sorry to hear about Elijah and very understanding of why I’d not said anything at the time and why I felt I had to after the event.

Another question I’ve been dreading is: “How old are your kids?” I got this one on Wednesday. I managed to fumble some sort of answer about my 6 year old and 3 year old and that we also had Elijah who was very premature and sadly died. The guy who’d asked said how sorry he was to hear about Elijah. I thanked him and told him how much I’d been dreading the question and worrying about how I’d answer it. He replied that he thought I’d handled it extremely well. Another positive interaction.

My overwhelming experience has been that people have been great. There’s been a few who don’t say anything but give me a sympathetic “I don’t quite know what to say” look. Lots of people, including many friends of friends have told me how sorry they are when I’ve seen them. We’ve had cards and messages from all kinds of people, many of whom we hadn’t been in touch with for several years, some whom we’ve never met. Knowing people care and that Elijah’s life has touched them means so much to us. Sadly, I find myself being increasingly intolerant of the few people who haven’t acknowledged Elijah’s death. It feels as if the all positive interactions are shining their light on the crapness of others. I hate the fact that it bothers me and that I’m wasting time being upset when what is really important is that we had Elijah, we miss him terribly and that we are so grateful for the support we’ve received.

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A reply to Auntie Miia

Things have been hard since James went back to work. We’re really sad, things seem to be sinking in. James’ sister Miia messaged me to ask how we were this week, so this is (a very slightly edited version of) my reply. It sums up how we’re doing this week.

“Hello. Thank you for your phone message. It takes us a while to get to doing things other than the essential at the moment, sorry for the delay, it’s not because we don’t want to talk to you. We’re alright. It seems to be getting harder. James is back at work, and that’s really tough for him. His brain isn’t working as it should or would have, concentrating, and actually doing stuff is difficult, his colleagues continue to be wonderfully supportive.
I miss James (and Elijah). We have just spent more than 2 months entirely together, so despite the horrible (and incredible) experiences, we have been with each other the whole time…the very longest time since we got married (almost 13 years ago) and the longest time since we met. So, I miss him…and I have more time to be alone, and my mind then wonders, which is fine, and it’s good to embrace the pain. We’re facing the tasks of taking down the baby cards and sympathy cards slowly, reading them all, and letting them affect us however they do. Amos is still going to his childminder (Mel) 2 days a week until the summer holidays. I need that time, just to be. (Lots to do, but I also need some time just to be how I need to be.) He also talks to Mel, and I can’t take her off him as well, yet. He loves her. He did tell her it was a shame that Elijah was so small, as he wouldn’t have been able to reach the kettle. (!)

When the boys are about, we do get thoroughly distracted, so it’s good to have some time to just think over the last few weeks.
We’re also a strange social phenomenon, some people know exactly how to manage us. (Which, at the moment is to ask us how we are, with long enough space to allow us to reply.) Some people don’t mention Elijah at all, I guess no one knows how we want to be really. But, when he fills our heads most of the time, sometimes it’s hard to just carry on a normal conversation, without acknowledging our current state…and I really don’t mind shedding the odd tear in public. When the subject is brought up, we can chat for a minute about it, and move on to other things if need be. It’s also hard for us to bring up the subject up, because we don’t want to be the people who socially always bang on about our baby who’s died, even though at times we might want to. I held a small baby in the playground on Monday (my request.) Which was lovely and terribly painful too. I’m feeling a real physical sadness today, I’m tired, Amos is snotty and has a cracking cough, so was up in the night. Amos misses him, and is sad. Jonah is not talking about how he feels at all. He has 2 peers in his class who have new babies in the family, and I can’t help but think he must find that hard, but I’m learning not to think I know how anyone feels.
We are still very lucky to have had him. I wouldn’t change that for anything. I just wish we still did.
I had my post-natal check last week, which was just a chat. We both went to it, and the GP was very good, she’d clearly read all my notes, and it was good for James to talk too. As the Mum I get more people being supportive of me than James does as the Dad. People ask me how I am more than they ask him. But then I am better at eye-contact than he is, and I meet up with friends, who talk, while he goes to work. He is being amazing. I’m so very proud of him.
So, that was a long reply. But you did ask.”

I think that was Tuesday. On Saturday night at a Party, our friends’ 10 year old son Fred waited until I was on my own, and came to find me, the conversation went like this:

“How are you feeling today Jen?”

“Do you mean about what’s gone on in the last few weeks?”

“Yes.”

“Thank you Fred, I really love you that you asked. We’re ok, it’s hard, but we’re doing alright. Thank you so much for asking.”

“I can’t imagine what it’s like for you.”

…We’re a difficult beast to approach, but Fred pretty much hit the nail on the head.

We have new tadpoles in the pond, and a baby frog, oh and a baby bird adopted us for a couple of days, and I can’t help but want to look after them.

James: Going back to work has been strange. My colleagues have been great and I couldn’t imagine things being any better on that front. If I want to talk about Elijah, it feels OK to do so. I’ve found getting work done difficult. Concentration and focus are not easy and jobs that perhaps would have taken a few hours are taking days. Whereas before if something went wrong I’d enjoy the challenge of fixing it, I now feel numbed. I’ve lost some fight and seem more tolerant of work bureaucracy. The other day, I simply accepted the fact that I needed to fill in a form. Before Elijah was born, I would have launched into a tirade of vitriol at having to waste my time. Mind you, I’ve still not completed said form (some things never change).

I gave blood on Monday. This was always going to be rather poignant. I was barely holding it together on the short walk from work to the Donor Centre but was doing OK until I sat in reception and noticed the tissues on the coffee table were the same brand and box size as the ones we became all too familiar with in hospital. Still, I managed to explain to the nurse why my eyes and nose were running and that I was physically fit to give blood. It hurt a bit this time – I don’t think the nurse got the needle into the vein at the optimum angle. On one hand it seems a little churlish to complain given what Elijah went through. On the other hand, if they can get a very small needle into a tiny baby’s minuscule veins, they shouldn’t have any trouble with me – bloody amateurs!

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One month on

Blog posts are a bit like buses – you wait two weeks then two come along at once. Jenny and I both find writing about Elijah and the aftermath of losing him cathartic. We come at things from different perspectives, so it is worth reading on, even if you have read Jen’s post from yesterday.

It’s a month today since Elijah died. On Sunday, it’ll be 37 days – the same amount of time he was with us. It’s not right to say the time has flown, more that it has disappeared. I find weekday mornings seem to vanish – I take the big boys to school and nursery at about quarter to 9 and suddenly it’s 11.30 and Amos needs collecting from nursery.

“The big boys”. There’s a phrase. When Jen’s uncle Matthew came to visit Elijah in hospital, he picked me up on referring to Jonah & Amos as “the boys”, pointing out quite rightly that Elijah was one of the boys too (Matthew being the youngest of three boys himself could empathise). After Matthew’s intervention, I started making a point of referring to “the big boys”. I wonder for how much longer I’ll continue to do so.

It’s not quite fair to say the time has not flown. Our holiday in the North York Moors last week did seem to zoom by. We had a really good week. But then our situation would hit us. We shouldn’t have been on holiday, we should have been sitting next to Elijah’s incubator or maybe he wouldn’t have got NEC and we’d be making preparations for him to come home in a few weeks or maybe Jenny would still be pregnant. Or maybe we’d have lost him at 14 weeks when Jenny had her first bad bleed. Or maybe he would have never been conceived. While it’s not where we want to be, I’ll take where we are over the latter two possible worlds.

The day before we went on holiday, we went to visit Elijah’s grave. Elijah is in the woodland burial area at Wisewood cemetery. At his internment, I noticed a hole in the fence very near his plot and that there’s a footpath on the other side. A few days after the funeral, I got out the OS map and realised we could probably do a walk along the River Loxley, visit Elijah’s grave and get a bite to eat and a pint of Farmer’s Blonde (half a lemonade for the big boys) at the Nag’s Head. We tested my theory out on that Friday. The Nag’s Head does a pie (or fish and chips) and a pint for £6 – bargain. Family well fed, we had a lovely walk along the river and then snuck through the gap in the railings. The big boys reaction upon arriving at the plot was so natural and moving. They both squatted down and Amos asked “Are you OK Elijah?” We’re happy with our decision to have Elijah buried there and with how well it’s worked out. We can walk along the river and through the trees and feel close to him. Talk about letting your standards slip. Our baby died but at least we found a nice place to walk and decent pub.

At the eulogy I gave at his memorial, we both spoke of many of the positive things to come out of the experience. Despite how terrible things can seem at times, those positives matter. We had a letter from Action Medical Research acknowledging receipt of over £900 in donations towards the fund set up in Elijah’s memory. The Individual Giving Manager had also found this blog and noted that Elijah was taking part in the Dove Study that Action Medical Research is funding. They are hopeful that Dr Andrew Ewer and his team will make a breakthrough in the next couple of years. Too late for our baby, but I do so hope it will make a difference to others. Even if it turns out to be a false dawn, I’m happy that we are supporting this sort of research in Elijah’s memory. As Einstein famously said: If we knew what it was we were doing, it would not be called research, would it?

Friends (and in some cases strangers) continue to tell us that they think of Elijah when they are giving blood, or that Elijah’s story has motivated them to make an appointment to give blood. Not only are we comforted a little by the knowledge that Elijah, despite his so short life, can make a difference, it reassures us that he will not be forgotten. I think that’s one of my greatest fears: as time passes other people, or even I, will start to forget him.

This is not the blog I wanted to write. When I started writing about Elijah, I thought it would be about the ups and downs of life in hospital before Elijah came home. Until he got NEC, I never seriously considered that he might never come home. I’m so glad I started writing as it helps me to remember.

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The immediate weeks after Elijah died.

Leading up to the burial and memorial we were busy, we had deadlines and jobs that needed doing. I was surprised at what I was capable of doing, just because it needed doing. Had I known about Elijah a year ago, and that he would die, I would have imagined I would have had to be carried from one place to another, perhaps with someone moving my lips for me so I could speak. I did collect the “order of service” sheets from the printers myself, and I did order and collect the flowers for his coffin face to face with the tearful florist. No matter how distressing the jobs might seem, they needed doing – so we did them.

It is now 4 weeks and 2 days since he died, I should be 35 weeks pregnant today. The past 4 weeks have been surreal in many ways. Elijah never came home, we never had the chance to prepare for him at home, so we don’t have an empty room to stand in and note his absence. We have a collection of old baby things in the attic, but these almost entirely belong to Jonah and Amos. The new baby cards are still up, but almost all of them have a sympathy card in front of them. I wasn’t particularly big, and retruned to feeling physically much like my old self rapidly, so I don’t feel physically like I’ve recently been pregnant or recently given birth as a reminder either. Expressing milk is a very detached form of feeding a baby, so I don’t have the memories of feeding him myself. I have the tops that I wore when I held him, and the blankets that he died in. While in hospital, there was occasional talk of keeping momentos of his time in NICU. I kept certain things to show him when he was older, just to prove to him how incredibly small he once was. I have a tea-bag sized nappy, and a CPAP mask the size of a 5 pence piece. We also have the hair that they shaved from his head when they put in a cannula. In the white box we were given as we left the hospital are his wires, and his blood pressure cuff. I didn’t want to bring home the box, I wanted to bring home the baby. That’s not how it works though.

There are so many scenarios that could have played out with my pregnancy. We could be in several different positions to where we are now. I may have lost him at 14 weeks as we thought, but we didn’t. Or at 22 weeks when I was finally admitted myself, but we didn’t. He might not have got NEC, and therefore he might be aiming to come home in about 4 weeks time, or we might still be battling through with him being due to be in hospital for another 10 months, working out life with minimal intestines. Or I might just be finishing work at 35 weeks pregnant. But we’re in none of those positions. He’s not here now, he’s been and has already died, but we did get to have him for a while. While that is incredibly hard, I realise we are so lucky that we did get him for at least a few weeks. We got to see him with life and character. Not everyone gets that much.

We’ve been away for a week at a cottage in the North Yorkshire Moors. It was good to get a change of scenery, and the boys loved it. James and I got chance to rest and relax, and we got exercise and a lot of fresh air. We got chance to sit and think and talk too. The time that Elijah was alive was so intense and so out of the ordinary for us, that when we are a 4, it can feel remarkably normal – yet with a clear and ever present difference. Sometimes I feel physically sick and am definitely a little more anxious about the boys well-being. I woke up one night last week having a bad dream…you know the usual… I’d (along with a group of friends) crucified a homeless man, and the police were coming. My anxiety levels were high, but when I realised it was just a dream the relief didn’t come, it just shifted back to our current reality. It’s hard to describe how we are, or how it feels. We can still have a lovely time, and we don’t forget – he’s in the background sometimes, but if I shift the focus back to him, then it naturally overwhelms me. We are so fortunate to have Jonah and Amos as a distraction. I know I hold them more keenly, and more tightly. Amos fell asleep on my lap in the pub on holiday, I can’t remember the last time that happened. That was lovely. I am caught between an aching for Elijah and loving his big brothers, but at the same time still finding them exhausting and too lively. I am told this is normal.

James returns to work on Wednesday. I am still entitled to my maternity leave – which is of course horrible, no longer having a baby, but is less mean than no longer being entitled to it because he has died. I have bought a new bike. I have loved watching cycling since Stephen Roach won the Tour de France in 1987 – but despite my longest friend Catherine trying her hardest to teach me as a child, (she was 36 days older than me.) I didn’t learn to ride a bike until James taught me in Finland when we were 21. I can’t do inclines, declines or corners – which living in Sheffield leaves me somewhat scuppered. I say “new bike” – it’s a second hand, folding shopper. It’s bright blue and I love it. I hope to get better at cycling this year, and since buying it 13 days ago, I’ve already cycled further on it than I’ve ever ridden in my life. I also hope to focus a little more on my photography – to learn a little more of the technical side. I’m pretty much a photographic chancer to date.

We’re doing alright considering. There are many triggers that set us off, and we cry. We miss Elijah terribly. But there are still 2 big boys here who need us, but seem to be getting more independent by the day. Amos said yesterday “I wish Elijah could sleep in the tent with us, I wish we could have kept him.” He speaks words of truth.

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Memorial for Elijah Joakim Halse

We have reproduced below the programme for Elijah’s memorial ceremony that took place yesterday. Also included are the eulogies we both gave our beautiful little son. More than 100 people came along and many of them came back to our house to eat and drink, laugh and cry. It was something we wish we had never had to do, but it was a very special day. Thank you to everyone who came and supported us, and thank you to everyone who couldn’t come, but let us know their hearts were with us.

Elijah Joakim Halse

Image“Sorrow is not forever. Love is.”

27th March 2013 – 3rd May 2013

Welcome by Auntie Miia

“Say not in grief he is no more, but live in thankfulness that he was.”

Reading:

From “The Prophet” by Kahlil Gibran. Read by Grandad.

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your    dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might  that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as he loves the arrow that flies, so He loves also the bow that is stable.

Poem:

“Something Beautiful Remains” – Author Unknown. Read by Auntie Minna

The tide recedes but leaves behind

bright seashells on the sand.

The sun goes down, but gentle

warmth still lingers on the land.

The music stops, and yet it echoes

on in sweet refrains…..

For every joy that passes,

something beautiful remains.

Eulogy for Elijah: By James. (Dad)

When we started planning this ceremony, we asked the funeral director for advice arranging a memorial gathering. He told us if people don’t go for a religious ceremony, then they tend to do their own thing. The ceremony might involve reading a couple of poems and a eulogy – adding “but you can’t have a eulogy for a baby as there’s nothing to talk about.”

He hadn’t done his research. We’ve got plenty to say about our youngest son.

Before Elijah was born, Jenny and I were discussing baby names with Jonah and Amos. Amos was very keen to call the baby “lightning” after Lightning McQueen from the film cars.  And so “Lightning” became his working title while we decided on what to call him officially.  It’s a fitting moniker in more ways than one.

Elijah was fast. He arrived not only way too soon, but at some speed – born in triage within 45 minutes of Jen telling me “I feel quite uncomfortable”. Like a rookie, he tried to run before he could walk. He showed every sign of wanting to breathe for himself and was taken off full ventilation after 2 days. But he got tired after a few days and had to be put back on. He then showed again that he didn’t need the ventilator, but again wasn’t really ready. The doctors were a little more cautious after that and a little more wary of his bravado. He came off the ventilator after a week or so, but in the meantime had been working up to full milk feeds via an NG tube. He wasn’t quite a star pupil, but he was making good progress.

Sadly, his illness attacked his guts at a rapid pace. He nosedived. The consultant looking after him did not think he was going to make it through the day – but he did. That same rookie cockiness and fight came through. Another consultant remarked that the sorts of oxygen saturation levels, blood pressure and blood gas readings they were taking from him weren’t all that compatible with life, but Elijah didn’t seem to care. Alas, it transpired the consultant was right. Just as we thought he was on a road to recovery, we discovered the extent of the damage done. As Karen one of his nurses said to him “You fooled us all Elijah”.

We’re desperately sad to have lost our little lightning, but despite his all too quick life, he made a mark. He lit up our community and brought people together. I banged on in our blog about donating blood and many people responded. Maybe lives will be saved with the pints of blood donated by those Elijah’s story inspired. I’d like to think so.

And the support we’ve had from this community has been amazing. I wish we hadn’t had to go through this to fully appreciate just how wonderful people are. In the bereavement pack we received from the hospital was a flyer for a support group called “Too Beautiful for Earth”. No. I wish Elijah could have grown up to see how beautiful this earth is and to meet the beautiful people who put themselves out for us while he was in hospital. The people who looked after his big brothers so we could be with him, the people who brought us meals and cakes, the people who gave us lifts to hospital so we didn’t have to worry about finding a parking space. And people continue to show us the same love and support, doing what they can to help us prepare for this event and coming here today to support us.

And how I wish we could take Elijah back to Jessop’s Hospital in a few years time to meet the nurses and doctors who did everything they could for him; the surgeon who operated on him while has on an oscillating ventilator to give him a chance because, and I quote, “he deserves it”. That’s not how his story ends.

It’s hard to celebrate a life so short, but we have much to be thankful for. Elijah – it isn’t easy, but I love being your Dad. Feeding you via an NG tube was a little detached, but at least it was efficient. And on those rare occasions I got to hold you, everything seemed right. I am so very proud of my three sons.

Einstein said “There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.”

Elijah was a miracle. The chances of him being, the chances of any of us being, are tiny. A well-known biologist wrote:

“Most people are never going to die because they are never going to be born. The potential people who could have been here in my place but who will in fact never see the light of day outnumber the sand grains of Arabia. Certainly those unborn ghosts include greater poets than Keats, scientists greater than Newton. We know this because the set of possible people allowed by our DNA so massively exceeds the set of actual people. In the teeth of these stupefying odds it is you and I, in our ordinariness, that are here.”

Elijah defied those odds to be here.  We’ve been struck by lightning; we’re broken and our landscape has changed forever.  But we will regrow and mend, different from how we were, but I hope with a greater awareness of the beauty that surrounds us.

Eulogy for Elijah by Jonah (brother) – read by James

Elijah was probaly the smallest baby that I had seen in my life. Elijah was born way too eary. And he got very ill, and he died. Me and Amos got a big cuddle on Elijah’s last day.

Eulogy for Elijah by Jenny. (Mum)

It is going to take most of my strength to read this, so I’m going to take my time. Thank you for coming.

It’s clearly a very special and important day. But this is not the celebration we wanted to have for Elijah.

Where to begin Elijah? Right at the start. It’s true you weren’t planned, it’s true we took a good while to accept that we had room for 3 boys in our life. We love Jonah and Amos through and through, but I’m not the most patient mum, I can’t pretend I relished the thought of spreading that patience any thinner.

It was a difficult pregnancy, I was trouble, or you were trouble, and things just weren’t working out. And then you came.  25 weeks and 3 days. You came swiftly and silently into the arms of the medical team.  I held my breath when I asked if you were alive. “she cried a little when she came out” they said.

“She?” They double checked, “He” they said.  We smiled, we were happy to avoid Disney princesses.

They placed you in a sandwich bag, to keep you warm and to protect your see-through skin. “You’ll be able to tell him that when he’s older, you were small enough to fit in a sandwich bag.” One of the doctors said. That was the first morsel I clung to. Someone thought you might be able to survive this early arrival.  And we loved you immediately.

We missed that incredible moment where you get handed your new baby to hold and to sniff. I touched your hand through the sandwich bag, and you were whisked off to intensive care.

“Has he got a name yet?” the staff asked for a couple of days. You’d caught us rather off guard.  We settled on Elijah, another biblical name to go beautifully with Jonah and Amos – in the weeks to follow I looked up who Elijah was and found this snippet: ‘Elijah showed up out of nowhere, and wasn’t easily intimidated.” This was more fitting than we could have ever known. And why Joakim? St. Joakim was said to be the Father of the Virgin Mary, which would have kind of made him the Grandfather of God, which we thought would be a great delusion of grandeur for our 823 gram baby to aim for.

As the days and weeks passed, we sat with you, we “contained you” with our hands to stop your heart from racing when you were being handled. We touched you when we could, but hesitantly because of your delicate skin and because you were still meant to be in utero. We tucked your feet into your bedding to keep you cosy. We leapt at the rare and wonderful chance to hold you.  I got 4 cuddles in 37 days. James got 3.

You made me so proud. I told you so many times how proud I was of you.  You repeatedly defied expectations, you showed strength and determination and self confidence. On day one you were showing signs you didn’t want ventilation, but you just weren’t quite ready. You just kept on trying and trying and trying. You very nearly died age 3 weeks, ashen faced and swollen, but you pulled through enough to face surgery bigger than any I hope to ever have, and this nearly 12 weeks before you were even due.  I told Mary your glorious Scottish nurse – “but he has no choice, he just has to do it.” “Oh, he has a choice dear, he wouldn’t do it unless he wanted.” I have to believe that. And you survived the surgery, but life would have been very hard.

We had a message this week from our friends Toby and Sara.  Which I thought was well worth sharing:

“I’m not sure Toby and I will be able to come up to Sheffield on Thursday as Toby is flying off to Japan next Monday for the World Blind Sailing Championships and has already taken most of his leave, but we will be there in spirit and we will be praying for you all. We followed your blog ever since Elijah was born and prayed that he would be OK but it would have been a very difficult few years if he had recovered. Toby and I were both premature and he is blind because of it and although Elijah was being checked for retinopathy of prematurity it could still have developed later on and it is very unpredictable. I spent much of my childhood in hospital and my mum had to tube feed me for the first 4 years, which is hard work and distressing. Elijah would have been a wonderful and amazing boy with a fantastic, loving and caring family but now he doesn’t have to suffer, be brave and feel different to his siblings and friends. He will forever be in your hearts as a perfect little boy who was beautiful, brave, small but determined and that can’t be a bad thing.

Life would have been hard, but we’d have given you our all. We would have loved you, and cared for you, and squeezed you, and shouted at you, and taught you pop trivia, and dragged you round charity shops and up hillsides and down dales. Your brothers? They would have carried you, and sat on you, and fought you, and loved you and sung to you and thumped you and fed you. We would have loved you to have stayed to make us 5.

But you didn’t stay, you couldn’t stay. That wasn’t you giving up, your body was no longer able to sustain your life. Your brothers were thrilled to hold you. As were your dad and I. Getting to talk to you, and cuddle you, in private without the noise and the tubes. You were bright eyed and wriggly, but calm. You enjoyed that time of comfort and warmth. I have to be glad that you died in our arms peacefully and painlessly.

And what did you show us? What did you bring to us? You brought us pride in your persistence and strength.

We learnt so much about the value of life. Despite your extreme prematurity, and vulnerability the staff treated you, and fought for you and stopped at nothing to try and keep you – we were amazed and so grateful for what they, the NHS were prepared to do for you.

And outside the hospital we were amazed at what people were prepared to do for us.

On one of the many drives to the hospital, I was listening to the radio. Humphrey Littleton was described as “Having got into the bloodstream of the British Public.” I feel in many ways that’s true of you Elijah. Not the British Public, but certainly our families, friends, friends of friends – a wide community.

You brought out a community of people near and far who bent over backwards to support us, and love us. People fell in love with you, and were desperate to know you were safe. We are so glad to be left with a community of people whom we know love us, and care for us very deeply. For the month of April you created a buzz in the air, of hope and love and generosity. You have reminded us of how lucky we are to have Jonah and Amos. And what a warm and loving place this world can be.

We are so sad that your story is not one of your survival, and you growing up to be a huge great hulk of a lad, that would have been a wonderful tale. I don’t think of you in soft focus, baby blue with angel wings or with glittery stars. You are and always will be our incredibly small, beautiful, strong, determined, cocky, self assured and precious baby and little brother.

While you are not here anymore, you leave us with warmth and love and pride.

Sorrow is not forever, but love is.

Song:

The First Time Ever I Saw Your Face” written by Ewan MacColl:

Sung by Yo Tozer-Loft, guitarist, Glen McGlone.

A time for Reflection:

Song: “King of Rome” written by Dave Sudbury and performed by the Unthanks.

Poem:

“Turn Again to Life” by Mary Lee Hall. Read by Grandpa.

If I should die and leave you here a while,
be not like others sore undone,
who keep long vigil by the silent dust.
For my sake turn again to life and smile,
nerving thy heart and trembling hand
to do something to comfort other hearts than thine.
Complete these dear unfinished tasks of mine
and I perchance may therein comfort you.

Photos:

Song to accompany the slide show: “The Littlest Birds” by The Be Good Tanyas.

ImageAll the photos can be viewed here:

Seeing my baby's back for the first time. Helping him tolerate the CPAP

Lullaby:

Written by Cousin Laurie Engel. Read by Auntie Katy

Sleep. Tomorrow will bring the burning sun shining in the east

Sleep. Tomorrow will bring the tiger hunting his prey

Sleep. Tomorrow will bring the cock crowing in the morning

Sleep. Tomorrow will bring the tree spreading its silent branches that sway in the wind

Sleep tomorrow will bring the sun shining in the west.

Close

Miia finished with these words from the Northumbria Community:

“Be gentle with the one who walks with grief.

If it is you, be gentle with yourself.

Swiftly forgive; walk slowly, pausing often.

Take time, be gentle as you walk with grief.”

James and Jenny would like to extend their heartfelt thanks to everyone who has supported us in so many ways over recent weeks and months.

Elijah-acorn

Acorn illustration by Jonny Ford

We lost count of the number of blood and platelet transfusions Elijah had over his short life. We are immensely grateful to the strangers who donated blood or platelets that helped give Elijah a chance. To make an appointment to donate, go to http://www.blood.co.uk or freephone 0300 123 23 23.

We have set up a tribute fund in Elijah’s name to raise money for Action Medical Research. It’s one small way of remembering Elijah. If you’d like to make a donation, there are gift aid envelopes available, or you can donate online at:
http://www.action.org.uk/tribute/elijahhalse

Or if you’d like to remember him by donating to another charity like Bliss or Sands, that’s great too. Remember him.

 

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Formalities

We’re still here. It’s been a week. I think, under the circumstances, and perhaps compared to my expectations, we’re doing alright.

We are drinking more tea than you would dream possible. If Mrs Doyle from “Father Ted” were here she’d be having a field day. We’re busy. The boys make that a certainty. We’ve had a couple of days with them out of the house all day, which has meant we can immerse ourselves in Elijah more, and deal with the inevitable formalities. We have made important decisions and made plans.

It’s clear to me that everybody’s experience of this time is very different. It’s going to change over the days and weeks, and I’m learning not to expect how I should feel. It’s proving to be a very hard and heavy but special time at the moment. I’m grateful for some space to be with James and the boys so we can be how we need to be. At the same time friends have popped in to drop off dinner and baked items and cards and plants and trees and newly learned songs, tissues and love. We’ve been listening to some of our favourite music, there’s been photos, slow dancing, black humour and tears. We are in a little bubble, but we have registered his death, and we have planned all the necessaries with the funeral directors.

The Funeral will be next Thursday afternoon (16th May) at 2pm at the United Reformed Church on the corner of Chesterfield Rd/Beeton Rd. Although it is being held in a church building, it will not be a religious ceremony. We’d like anyone who feels they’d like to come to come. If you need to bring children, please feel that you can, Jonah and Amos will be there. There will be a room for them to play if they need to. Everyone is welcome. We are having a small family burial in the morning, the afternoon will be music, photos and some words from James and I.

We will be having drinks and some food back at our house afterwards. Please let us know if you’d like to come so we have an idea of numbers. We hope to see you then.

Please no flowers, but if you’d like to make a donation we have set up a tribute fund in Elijah’s name in aid of Action Medical Research. Action Medical Research is one of the organisations that funded the Dove Study mentioned in one of our previous posts. The URL for the tribute fund is:

http://www.action.org.uk/tribute/elijahhalse

There will also be envelopes at the funeral if you’d rather make a donation offline.

Alternatively: We’d really like to provide every member of staff on the ward with a small tube of hand cream. Our experience of hand washing so thoroughly and so often on the ward left our hands painful and sore. This is a permanent fixture for the staff. We’d love it if anyone wanted to donate a small handbag sized tube of vaseline intensive care hand cream. (other hand creams are available.) It’d be a small token gesture that Elijah may contribute to soothing their hands. We know there are 150 nurses on NICU, goodness knows how many other staff members right through the ranks. Thank you.

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The Bereavement Pathway

So here we are. We’ve landed on a path that no one wants to get on. This is the official term for where we are in the system. James started a blog to help keep people near and far in touch with Elijah’s progress. It became to us, much more than this. I think it helped us process what we were experiencing, maybe it didn’t. Maybe it distracted us and stopped us processing. It certainly did keep people in touch which where we had all got to, and it also helped James and I manipulate a wonderful community of support (near and far).

So I find myself turning back to write. Maybe I want to distract myself. I am well aware we’ve left people hanging. This page turner ended abruptly with the outcome none of us wanted. 

I feel like I shouldn’t be able to write. I feel like I should be wailing constantly. “Should” is a horrible word. As James tells me, “there are no rules.” But, I’m going to write, whether I post it is another matter, but it might help me organise my very busy head. 

We are obviously devastated. When I look in the mirror my Grandmother Annie is looking back at me, I have her eyes right now. We are certainly in shock. It is coming in waves. But we are eating at odd times of day, and we are shattered, so we are sleeping too. 

Jonah is sad, and talking about Elijah intermittently. He is sad that he can’t carry Elijah around, and that he won’t be able to teach him things. He was so excited that he got to hold Elijah, but in the same breath disappointed that he only got to do it once. He is asking lots of questions about Elijah’s body (by which it turns out he means his torso, not his arms and legs and head). He is also very pleased today as he has mended his Lego X-wing fighter which has been broken for several weeks. When he left the hospital on Thursday evening he was very concerned he’d left his lego mini-figure in the waiting room. The consultant went and found it for him. 

Amos is saying very little. Although he did tell me at bedtime last night that he misses Elijah. He does love babies, and he had been very excited about the baby coming. For the last 5 weeks, he has been saying, “I can’t believe my baby brother has come already.” I suspect he’s taking more in than we realise. He is also enthusiastically avoiding having eye-drops put in, and punching himself in the “nuggs” every time James or I cry saying “this will cheer you up.” 

They are keeping us busy, and amused. – We’ve had some great help from friends who’ve looked after them for a few hours so we can rest and immerse ourselves in this new phase. 

Cards and flowers have started arriving. Which is very thoughtful. I don’t want to be me right now. I don’t want to accept that the cards and flowers are for me. The flowers and cards  show us even more love, and in time they’ll be part of the process that helps us accept this new “normal.” 

And Elijah? I can’t quite believe he arrived. We didn’t get the preparation and anticipation, and nesting phase. We went from very sick me, to our summer baby arriving in the snow. We went full pelt into Intensive Care. Now, “Intensive Care” – there’s a phrase. Whoever thought of that name was having a good day. It’s been non-stop, full-on care. Whether for Elijah, James and I or the big boys. I can’t begin to accept he’s gone already. 

Thursday night with Elijah was beautiful. I can’t write about that. I can’t bear to look at the photos yet. We are so glad we got the opportunity to spend time alone with him, he was true to form, lively and once again defied the Dr’s expectations. Had he died immediately post surgery or even before he recovered a bit we wouldn’t have spent those precious hours with him. 

There are many things to think positively about. I now have time to tidy away the lego, and we did go to Stannage Edge on Friday afternoon which was wonderfully refreshing. But clearly the tip of the balance amounts to very little in comparison. 

The bereavement co-ordinator will contact us on Tuesday and then we’ll start the process of working out how to celebrate that beautiful little rascal. We’ll keep you informed. 

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