Broken hearts and goodbyes #HLHS #CHDAwareness

I have to start this post by confessing I’m not entirely sure if it’s the right thing to do. But, it equally felt so wrong to publish the first post after this weekend with a review of the latest in kids umbrellas, or the top annoying habits of our household. I need to stop and pay tribute to a very special little girl, and her Mummy Louise who I have come to think of as a friend and a pivotal member of our #coolmumclub community. 

Louise’s daughter Jessica was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) during pregnancy. She started her fight to beat this congenital heart defect in utero, with a complex procedure to expand one of her heart valves to improve blood flow, and allow her to be suitable for life saving post birth surgery. Jessica went on to have many major surgeries in her six years, and sadly this weekend, Louise announced that Jessica had passed away on Saturday morning.

Jessica was and always will be a very special little girl to our family. She shared the rare condition Hypoplastic Left Heart Syndrome with our second daughter, who was taken from us by this devastating condition during pregnancy. Jessica has always represented hope and miracles to us, and we couldn’t help but bond with her story through the connection to our own. Louise has always been a pillar of strength and understanding to me, as one heart Mummy to another, and at this time I send all my love and strength back to her and her husband Michael. She has given me the strength to say that CHD is part of our family story too.

As a fellow blogger, I have got to know Louise (a couple of times at events as well as exchanges through blogging) and through her, Jessica’s story. Like many others we watched on as Louise embraced life with Jessica and her sister Sophie, and expressed gratitude for every moment together as they lived a happy and full life as a family. We followed their ups and downs and all celebrated their recent happy news of a new addition to be joining the family, something that must have brought Jessica so much joy.

Of course we all rooted for Jessica through her operations and times of recuperation and ill health, but we also watched her growing, starting school, doing simple everyday things and smiling, that smile. Louise’s blog not only publicly represented family life with a heart condition, but it also brought so many people joy and smiles as she shared happy moments of their normal life.

Louise has done so much for CHD awareness through allowing others into her life as a heart family. In the meantime we all felt a longing for Jessica to live a long and healthy life, which sadly was not to be. It was however longer than Louise initially believed, something that was an everyday gift to all who knew Jessica.

As we all grieve for a child we never met, Louise’s strength has already blown us away, as she continues to be thankful and make time to thank others for their support at a time many of us couldn’t imagine being able to function at all. Through Louise’s faith, her courage and her incredible support network, I hope she finds a way through the unbearable pain she must undoubtedly be feeling.

Louise has expressed that she wants people to remember Jessica. To talk about her and to share her story. For many people reading this, you will already know Louise and Jessica’s, but if you don’t and would like to find out more about Jessica’s short yet remarkable life, you can read more on Louise’s blog, Little Hearts Big Love.

Like so many others who will have spent this weekend deep in thoughts for Louise, Michael and Sophie, and of course Jessica. As we watched our own six year old daughter we haven’t been able to escape the sadness in how cruel life can be. We have done all we can at this time; Sent our love and best wishes, cried heartfelt tears, planted a beautiful camellia in memory of two special heart babies which will flower each spring, and made a donation to the fund set up in Jessica’s honour. The donations will be given to a charity supporting heart children just like Jessica and their families, Little Hearts Matter. In posting this I hope others will do the same, and spread Jessica’s story as part of her legacy.

You can make a donation here:

https://www.justgiving.com/fundraising/jessicasheart

Sweet dreams Jessica.

 

x MMT

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29 thoughts on “Broken hearts and goodbyes #HLHS #CHDAwareness

  1. Kim Carberry Reply

    Beautifully written….Jessica touched so many peoples lives and Louise does so much to raise awareness of CHD’s. She gave me the confidence to write about my girls and their heart problems. x

  2. Louise (Little Hearts, Big Love) Reply

    Thank you so much for sharing such a beautifully written and heartfelt post. Jessica touched so many people’s hearts in her short life and it gives me comfort to know that her story helped so many people and hopefully will continue to do so. She was such a little miracle and she taught me so much about finding strength and joy in the toughest of times. I am so thankful that I got to be her mummy during her time on this earth xx

    1. Liberty on the Lighter Side - (LoLS) Reply

      Hi Louise, so sorry for your loss, i am sure your hearts must be broken into tiny pieces right now. Sending you love from far away.

  3. occupation:(m)other Reply

    This is really such a beautiful post. Saturday’s news was and continues to be devastating. Louise is amazing in her strength and articulate sharing/thanking/remembering. I am in awe of her. Lucy x

  4. sensationallearning Reply

    Beautiful post, and a such a sweet little girl. So so sad xx
    #coolmumclub

  5. mini human resources Reply

    This is a lovely post. I cant even begin to imagine what Louise must be going through, but clearly her strength is an inspiration. Rest in peace beautiful little lady. x #coolmumclub

  6. Gemma - Mummy's Waisted Reply

    Such a beautiful post, and a reminder to other parents as to how lucky they are with their own children #coolmumclub

  7. mummyhereandthere Reply

    What a heart felt post, devastating news especially if you have been reading Louise’s blog through the years you come to know Jessica. X #coolmumclub

  8. Talya Stone Reply

    Still absolutely reeling from this new just can’t believe the loss for Louise and her family I know that all our hearts and minds over at #coolmumclub are with them xoxo

  9. viewfromthebeachchair Reply

    I have no words. Loss is the worst thing. Thank you for sharing her story. #coolmumclub

  10. Life Love and Dirty Dishes Reply

    So well said Sarah and echoing how so many of us feel. It must be particularly hard for you having such a personal investment. Thinking of Louise so much. #coolmumclub

  11. The Squirmy Popple Reply

    This is such a beautiful post. I had been following Jessica’s journey and was heartbroken when I heard that she was no longer with us. Louise has displayed such strength in sharing her story even in her grief – I think of her and her family often. #coolmumclub

  12. Laura: Adventures with J Reply

    What a beautiful post. Very touching and caring. Jessica’s loss has touched so many people. I am sorry for the loss you experienced too.

  13. Tubbs Reply

    Such sad news … A beautiful post about a lovely family 🙂

  14. Sophie Reply

    Well done for writing this amazing post and thank you for putting into words what some of us are feeling. #coolmumclub

  15. Liberty on the Lighter Side - (LoLS) Reply

    Such a sad but lovely post of a sweet looking little girl. Losing a child is really the worst thing I can think of. My sister last her little boy and it shocked and saddened us all deeply – our kids still feel the aftershocks too after over a year. Thanks for writing such a heartfelt post. #coolmumsclub

  16. Morgan Prince Reply

    Such a beautiful post hun. I was so sad to learn about Jessica and my heartfelt wishes go out to Louise and her family at this sad time.
    #coolmumclub

  17. bringinguptheberneys Reply

    I was in tears reading both this and Louise’s own blog post. I can’t even begin to imagine what the family is going through. Sending all my thoughts and prayers to them. Beautifully written post x #coolmumclub

  18. anywaytostayathome Reply

    That’s a lovely post. It’s got me crying all over again. Jessica’s story will stay with all of us. #coolmumclub

  19. Charlotte Stein Reply

    Beautifully written Sarah. Lousie and family are in my thoughts and I’m so sorry to hear of your loss #coolmumclub

  20. Kat Reply

    So beautiful. I have shed so many tears for this brave little girl and for her wonderful supermum Louise. I really do wish her all the best and send her a lot of love. She really is, as everyone is saying a true pillar of strength #coolmumclub x

  21. thesingleswan Reply

    Thank you for sharing such a heartfelt post. Jessica was clearly a courageous and wondrous young girl. Her legacy will live on. Pen x #coolmumclub

  22. Sleepingthroughyet Reply

    Such sad news about Jessica, her mum sounds like a truly brave and inspirational woman. #coolmumclub

  23. Musings of a tired mummy...zzz... Reply

    Such sad news. I was really upset when I saw what had happened. Louise was so brave telling the world so soon after it happened and I think the whole blogging community is still in shock #coolmumclub

  24. The Queen of Collage Reply

    It truly is sad what has happened. I myself found I was very emotional despite not meeting her or the rest of her family. #CoolMumClub

  25. Cheryl @ Tea or Wine Reply

    Such sad news. A beautiful post Sarah and tribute to Jessica. Thinking of Louise and the family, life can be so very cruel. #CoolMumClub xx

  26. crummymummy1 Reply

    This is just so sad – words cannot describe. A fitting tribute #coolmumclub

  27. Nicola Reply

    How very sad…things like this make you realise how very lucky you are and makes you hug your little ones that little bit tighter. #coolmumclub

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