Friday Focus 27/04/18 – Life after Jessica: the first two weeks

It’s been nearly two weeks since Jessica passed away suddenly. I’m not sure that the reality of it has really hit me yet. Most of the time it just doesn’t feel real – I can’t quite bring myself to believe that my beautiful girl has gone. There are moments when it does hit me; moments when the pain and sorrow is overwhelming and all-consuming. We drift from moment to moment, coping as best we can, making the arrangements that need to be made and trying to keep things as normal for Sophie as we can.

 

The word Jessica with a drawing of my heart angel

 

Sophie has been a little ray of sunshine. She has moments of missing Jessica and being very sad, but is coping well on the whole. She senses when we are feeling sad and has been giving us more cuddles which is very sweet of her. Most nights, she wants to go to sleep in Jessica’s bed, although by morning she has nearly always climbed in to our bed, wanting to snuggle up with us.

 

Jessica’s school held a special assembly for her last week which we were able to attend. Jessica’s school book and water bottle were placed in the middle of the hall, along with some pictures and poems from her classmates. The children shared some poems and some of their memories of Jessica, and placed her things in a memory basket for us to take home. It took all the strength I had not to break down completely when her year stood up and sang “Somewhere Over The Rainbow” – it was so beautiful but so very emotional too.

 

The display board in the hall at the start of the special assembly for Jessica

 

We were able to go to Southampton to speak to Jessica’s cardiologist and the cardiac nurses earlier this week. The surgeon who performed Jessica’s last surgery also happened to be on the ward and was able to join in with the discussion too which was very helpful. We discussed the concerns that we had had with Jessica being unwell on and off for the last few weeks of her life, going over the various conversations that we had had with health professionals, the symptoms that Jessica had shown and the treatment she had been undergoing. Going over all the “what if’s” that had been going around in our minds.

 

The discussion was reassuring in many ways. We had been concerned that Jessica perhaps had gone into heart failure. However, we were told that this would have been more gradual and sustained – she wouldn’t have had days of showing improvement in the way she had. Most of the things that were likely to have caused concern after the Fontan were things that would happen more gradually or that would have been much more likely to occur in the days following her op or years later – not three months later. Her collapse at home was so sudden and unexpected that even if she’d been in PICU when it happened, it was unlikely that the outcome would have been any different. There was nothing that we’d missed, nothing that we did that we shouldn’t have done, nothing that we should have done differently.

 

As yet, we still don’t know what caused Jessica’s death. Jessica had her post-mortem last week and we were told that the cause is still unknown and we are now waiting for results from tissue samples. The team at Southampton felt that things that would have been the most likely cause for such an acute collapse, such as a blood clot or an aneurysm, would have been obvious on post-mortem without the need to look more closely at tissue samples. They have prepared us for the fact that we may not get any clear answers; that we may never know what caused Jessica to pass away so suddenly.

 

This week has been mostly focused on all the practical arrangements that need to be made. We have chosen the location of Jessica’s forever bed in a pretty woodland burial ground and started making the arrangements for her funeral on 18th May. It has been a very emotionally draining week and reality has hit us hard at times. All we can do though is take each moment as it comes, holding fast to the wonderful memories that we have, moving forward one tiny step at a time.

 

Things that have made me smile over the last two weeks

  • Catching up with friends and sharing memories of Jessica while watching Sophie have fun.

 

Sophie playing with instruments

 

  • Seeing how much Sophie has enjoyed being with her friends at preschool and her usual groups and having moments of normality.

 

  • Watching videos of Jessica – especially the ones of her and Sophie together.

 

  • Sophie having fun at the park with Daddy.

 

Sophie and Daddy at Langley Park

 

  • Receiving Jessica’s gold reading raccoon certificate as she managed to read her 100th book during the Easter holidays.

 

Jessica's gold reading raccoon certificate

 

  • Feeling surrounded by so much love and support. The lovely messages we have received often make me cry but it does help to know that we are surrounded by such love.

 

 

The Reading Residence
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28 Comments

  1. April 27, 2018 / 6:20 am

    Oh Louise, I honestly don’t know where you are finding your strength from but you are just amazing.my dad is buried in a woodland burial site and it’s beautiful. Sophie will love visiting and being able to explore at the same time – it never feels like we are where we are – never surrounded by sadness like other places would bring. Sending you all my love as always x

    • Louise
      Author
      April 27, 2018 / 6:59 am

      Thank you Lisa. It is somewhere where I can imagine having nice walks when we visit Jessica there. Sophie is a big source of strength for us at the moment – trying to keep as much normality for her helps get us through the day although there are many moments when it feels unbearably hard xx

  2. April 27, 2018 / 8:19 am

    You have all been in my thoughts so much, Louise. Jessica’s special assembly sounds so beautiful and emotional, I am crying here just picturing it. A wonderful memory to keep with you, though. I’m glad that Sophie is able to offer up those moments of normality for you all, to keep on giving you strength. Much love to you all x #WotW

    • Louise
      Author
      April 27, 2018 / 8:38 am

      Thank you Jocelyn. Sorry to make you cry x

  3. April 27, 2018 / 9:09 am

    You’re amazing Louise, every time I read your blog I think how proud Jessica must be of all of you. The way you’re all pulling together and keeping each other strong is incredible. What an amazing achievement for Jessica to read 100 books by the Easter holidays despite her hospital stays. Still thinking of you all every day.
    Nat.xx

    • Louise
      Author
      April 28, 2018 / 6:36 am

      Thank you Nat. We’re just trying to get through each moment as best we can x

  4. April 27, 2018 / 9:37 am

    Louise, Jessica was one special little girl and one we will all hold in our hearts forever, she will always be remembered. Please, try not to focus on the ‘why’ or ‘how’ sometimes there are just no concrete answers and trying to find them will drain you. You know that no-one did anything wrong which must be a great comfort, it seems that the beautiful Sophie is being a great comfort too. Times will be hard for so long but keep holding on to the good memories and she will always be there with you in some way. Your strength is amazing, but it’s also okay not to be strong too. Sending you much love and hugs and keeping you all in my prayers xxx

    • Louise
      Author
      April 28, 2018 / 6:39 am

      Thank you Anne. There are definitely lots of times when I’m anything but strong. We’re trying not to focus on finding answers when there are none although we do talk through the ‘why’ and ‘what if’s when they come mostly so we don’t lock them up and stew over them x

  5. April 27, 2018 / 2:03 pm

    Hi Louise, every time I read a post of yours I am struck with a feeling of great admiration. A woodland burial site sounds really lovely, a perfect place to visit and remember. I’m sure Jessica will be watched over by woodland fairies when you aren’t there too. Big hugs.

    xx

    • Louise
      Author
      April 29, 2018 / 8:53 am

      Thank you Debbie. I like the idea of her being watched over by woodland fairies x

  6. April 27, 2018 / 2:09 pm

    Louise,

    Jessica’s passing was so sudden and unexpected that it was bound to take a while for the reality to sink in, for all of us.
    It’s good to hear that the medical professionals were able to provide some reassurance for you — and that Jessica’s classmates, and Sophie, have been making their own contributions.
    These well-known words came to mind the other day: “Do not let your hearts be troubled. […] My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you?” We can be sure that Jessica has a place reserved for her.

    • Louise
      Author
      April 28, 2018 / 6:41 am

      Thank you. Reality very much hits in short bursts at the moment. I remember reading those words after my Dad died and found them comforting x

  7. April 27, 2018 / 3:40 pm

    The assembly for Jessica sounds absolutely lovely, what a beautiful way for the children to remember her. I can’t imagine how hard each day is for you, you are right though all you can do is take little steps. Thinking of you as always x

    • Louise
      Author
      April 28, 2018 / 6:42 am

      Thank you Angela. It was such a beautiful assembly, we were so glad to be able to attend even though it was hard too x

  8. April 27, 2018 / 4:13 pm

    I really can’t imagine what you are going through but I have been thinking about you a lot.
    I am glad you got some answers from the hospital…
    The woodland burial ground sounds perfect…
    Sending love and hugs x

    • Louise
      Author
      April 28, 2018 / 6:42 am

      Thank you Kim. The talk with the hospital helped a lot x

  9. April 27, 2018 / 6:15 pm

    Louise, I admire the strength that you have to write about all that you are going through during your grief. Reading this made me so sad, I don’t fully understand a world where we outlive out precious children.

    It’s wonderful to see that your writing community are so supportive.

    I’ve always thought that I would like a woodland burial, I think that you have made the perfect choice for your little girl. At peace amongst nature.

    Whimsical Writer

    • Louise
      Author
      April 28, 2018 / 6:43 am

      Thank you. It is hard to write about it at times but it’s always been my way of working through the tough times and I am finding it helpful x

  10. Laura: Adventures with J
    April 27, 2018 / 7:32 pm

    I can understand why you needed the chat with the cardiology team and it must be very hard to not know what took Jessica away from you. This is something I know I would really struggle with. Keep doing whatever you need to do to cope with your grief at this terrible time. Sending thoughts and prayers. Xx

    • Louise
      Author
      April 29, 2018 / 8:53 am

      Thank you Laura, we are very much taking each step as it comes x

  11. April 27, 2018 / 8:33 pm

    I don’t want to write anything to add to your tears. I think the woodland burial site sounds perfect. Hopefully a good place to visit among the trees and wildife. What a lovely choice. I’m so glad Sophie is part of your strength. The assembly sounds like a beautiful tribute. I would have been a complete mess. Sending hugs to you all.

    • Louise
      Author
      April 29, 2018 / 8:54 am

      Thank you Cheryl. It was such a lovely assembly for her x

  12. April 28, 2018 / 2:12 pm

    You have been in our thoughts so much over the past few weeks. What the school did for Jessica was so lovely. I’m so sorry you might never get the answers to her passing. I am glad that the ‘what if’s’ feel a bit better. Sending you lots of hugs and thinking of you all x

    • Louise
      Author
      April 29, 2018 / 8:54 am

      Thank you Jane. It is hard to know that we might never get answers but at least the “what if’s” no longer plague us quite as much as they did x

  13. April 28, 2018 / 2:44 pm

    I cant believe how strong you are all being this be be horrific to go through as a family, Jessicas forever bed sounds like a beautiful place that you can all go and feel near to her. The assembly must have been so tough for everyone involved, you are all in my thoughts sending love Louise x

    • Louise
      Author
      April 29, 2018 / 8:55 am

      Thank you Sarah. We are just taking each moment as it comes x

  14. Jen Quish
    April 28, 2018 / 8:49 pm

    Hi Louise,

    Just been reading through some of your posts and just wanted to say what a huge inspiration you are. You write so beautifully and show such incredible strength. I have three little daughters of my own and can’t stop thinking about Jessica and Sophie as my eldest two are similar in ages and very close too. Really hope your pregnancy is going well, take care. Xx

    • Louise
      Author
      April 29, 2018 / 8:56 am

      Thank you Jen. I’m glad your daughters have that lovely bond too – it is such a beautiful thing to see x

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