The End of An Era

Never did I think a week ago that I’d be writing this today. Last Saturday we managed to get Oliver out of his cot for a play before he resumed sleeping. But not anymore as after 21 months of fighting Oliver decided enough was enough.

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Just a week ago

The last six months have been so hard seeing our beautiful boy become so poorly but bravely solider on. 
We have always been realistic about Oliver and over the past six months in particular have had to face the reality of losing him more than once. Seeing Oliver’s eyesight deteriorate was one of the hardest things and we were increasingly concerned about his quality of life and what impact all the procedures were having on him.
Last week we met with Jane Hartley, Oliver’s consultant, and she told us that she wasn’t sure Oliver’s bowel was going to recover and we were all in agreement that Oliver had been through too much and we wouldn’t put him through any more major procedures. We also raised concerns about Oliver increasingly zoning out and struggling to focus and so Oliver had two scans on his brain.

On Monday afternoon we met with Patrick McKiernan who was consultant for the week and he sadly told us that the scans showed Oliver’s brain was slowing right down and that nothing more could be done. Within less than a week we had gone from knowing we’d lose Oliver at some point to we were going to lose Oliver imminently. 

We had spent the best part of 16 months at Birmingham Children’s Hospital and Oliver always managed to win the hearts of everyone he met and this week has shown what a loved little boy he was. On Tuesday and Wednesday Oliver had a steady stream of visitors all day with everyone telling their stories of Oliver and how cheeky he was, especially at night when he’d want to play, and of course his little chuckle.

People are so quick to criticise the NHS but we cannot fault them for all they have done for Oliver.  This week has shown how amazing both the NHS and the people that make it are. The Palliative Care Team quickly got involved and they and the Pain Team ensured Oliver had the best possible care and that he was as comfortable as possible. The staff of Ward 8 have been absolutely incredible, providing as much tea as we could drink and the best support. It’s easy to think nurses become immune to seeing children so poorly and not make it, but seeing the nurses so upset will always be something we remember as we realised how much a part of Ward 8 Oliver had become.

On Wednesday the nurses arranged to have a full size bed put into Oliver’s room instead of his cot and this meant we could both lie with him and cuddle him until he left us in the early hours of Thursday morning.

On Thursday we visited Oliver where he looked so angelic in the new babygro we’d left out for him, tucked up with Gruffalo.  We then said our final goodbyes on the ward before packing up and heading home for the final time.

Today was a bittersweet day as Oliver’s Nanny completed her 100ft abseil down Fort Dunlop to raise money for Ward 8.  Oliver passing away made her even more determined and we are incredibly proud of her!  If you would like to donate please visit https://www.justgiving.com/veronicasoar/

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We’re not quite sure what we did before Oliver or what we do now but I know we’ll get through it as I have the best husband, daughter and in laws who came every week.  I’d like to say that we had the support of our friends and that we had lots of visitors,  but that wasn’t the case and this whole experience has shown who our true friends are.  However it has shown how strong we are and what an awesome threesome we are.

Sleep tight Ojlet
X

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40 thoughts on “The End of An Era

  1. Hi Fran,

    I just had to leave a comment to this post. I had seen on your twitter about what your family are going through. I am so so sorry you have all been, and are still going through, such a hard time. You are such a strong family to not just through your experience, but to share the experience with the people who have followed Oliver’s story, me being one of them. I wish you all the love and positivity in the world.

    Kim (Toole)

  2. Your bravery through everything has been inspiring, Fran. Thank you for sharing Oliver and his story with us. I’ll never forget his wonderful smile. Lots of love to you all.

  3. I am a stranger but I have been following Oliver’s story and hoping that he would pull through for you all. I am so, so sorry to read this. You are a lovely family and I am sure you will be strong for each other and get through this, as Oliver would wish you to do. I can empathise with how you feel, as I lost my husband last September. He had battled leukaemia for four years but developed really serious GvHD, after what was a successful bone marrow transplant. This attacked his body, in particular his skin and bowel and sadly, he died from severe infections which caused septic shock. It seems so much worse when you have been given hope that the outcome will be different and I am sure that you will have experienced the same “roller coaster” of emotions, between hope and sorrow.

    I understand what you mean about friends not being supportive. The same issue with me. However, the really true friends do stand by you and they are worth more than a hundred who are not true friends. Treasure them and I hope that they will be a good support to you in the future.

    All that remains is for me to wish you all well and that you will find peace and happiness in the future. I hope that life will now be kind to you.

    With my best wishes and love.

    Anne (Bingham) xx

  4. Fran – although I don’t really know your family, I have followed Oliver’s journey via your blog for over a year and have constantly been touched and inspired by the strength, courage and love shown by you, your family, and wonderful Oliver. The photo’s showed your beautiful boy to be smiley, happy and courageous in his fight.
    I wish you all nothing but good things for your future – thank you for sharing such a personal experience with us all.
    I send you, Paul and Ella my love – you are all in my thoughts at this difficult time.
    Katie xx

  5. Fran, you are one of the strongest families I know. I am absolutely devastated for you all and will miss Oliver’s lovely face smiling out from your blog pages. No words can help at a time like this but want you to know that my thoughts and prayers are with you all xxxx

  6. I’m so sad to hear the news about your gorgeous little Oliver.
    I am thinking of you and your family and my heart goes out to you all.

    Lyndsay (Gabbys mum)

  7. Fran,

    I’ve been following all your posts about Oliver and his journey. Each and everyone one has touched my heart, and I’m sure all of those who’ve read them too.

    You’re such a strong family and I admire you all greatly. You’ve been through so much and always seem to do the best you possibly can.

    My utmost condolences on the loss of Oliver, but I know you and your family and the NHS have given him the best short life he could have wanted.

    Love

    Cara (may 08)

  8. Hi Fran.

    Am sorry to hear your sad news. Have been with you all through your blog and remember your pg. You are such an inspiring family with your strength and courage. Whilst Oliver was only with you for a short time, he was placed in the hands of the best family he could have hoped for, he was an extremely loved little boy. Sending you the strength to get through this and rebuild your lives however possible. Much love n hugs.

    Zoe (may08 zoe80)

    Xxxx

  9. I’m so so sorry. I was so shocked and gutted for you. You have been incredible and I hope so much that you find your way back into life with some happy memories. You are so right about how lonely and isolating it is. You will always have your small bowel family though and we’ll be there for you if you need us. I’m thinking of you loads and please let me know if there is anything at all I can do xxx

  10. ward 8 will not be the same with out this beautiful little boy, thinking of you Paul fran and Ella. Sleep tight beautiful boy x x x x

  11. Hi Fran,
    I just wanted to say thankyou for joining may08 them years ago & Thankyou for sharing your story via the blog.
    I have followed it religiously from the outset.
    I would like to say, What an incredible family you are.!! You have been & I know you will continue to, show that strength until together again.
    I can’t even begin to imagine what you, Paul & Ella are going through at present.
    Oliver was blessed to have you as a family, as you were gifted with such a beautiful, joyous baby in Oliver.
    His Heart-filling smile will be his legacy. As every time it was seen it brought an indescribable wealth of emotion to the recipient.
    Since you raising the awareness of the Ronald McDonald charity, we donate without hesitation on every visit.
    My heart is filled with sadness for your loss and I have often cried & smiled whilst captivated in your blog. Tears again now but I will go look at that smile once more.
    The pain of loss will never leave you, but he’s not gone, as every time you close your eyes you will see him, smiling and happy. Every time you listen you will hear his little chuckle. He will always be with you in the two places that controls us… You head and your heart.!

    Rest easy now Oliver..

    Love, thoughts and sincerest condolences from Leah & the family whom ive shared your story with.xx

  12. I am so, so, so, so heartbroken for you. Have spent most of the day trying to find the right words to send on a card to you via Haley, but nothing seems right. I never got the chance to meet Oliver, but I always hoped him and William would have a playdate one day even though we lived miles apart! You, Paul and Ella are amazing and i wish there was more I could do. Xxx

  13. Fran & family,

    I’ve followed your journey with Oliver since the beginning of your blog, your strength and courage to make light of situations that would break any other being is incredible and truly inspiring. Your little boy was a fighter and it sounds as though he brought so much happiness to all those around him.
    I wanted to let you know that you are all in our thoughts and prayers and hope that Oliver is at peace.
    Love to you all.
    Sam x

    • I hope you don’t mind me forwarding this on to you, a friend passed it on after her little boy passed away ….I hope it can help you to find some comfort too…….

      A Child Loaned
      “I’ll lend you for a little time
      A child of Mine.” He said.
      “For you to love the while he lives
      And mourn for when he’s dead.
      It may be six or seven year
      Or twenty-two or three
      But will you, till I call him back
      Take care of him for Me?
      He’ll bring his charms to gladden you
      And should his stay be brief,
      You’ll have his lovely memories
      As solace for your grief.

      I cannot promise he will stay
      Since all from Earth return,
      But there are lessons taught down there
      I want the child to learn.
      I’ve looked this wide world over
      In my search for teacher’s true,
      And from the throngs that crowd life’s lanes,
      I have selected you;
      Now will you give him all your love,
      Nor think the labour vain
      Nor hate Me when I come to call
      And take him back again?

      I fancied that I heard them say,
      “Dear Lord, They will be done,
      For all the joy Thy child shall bring,
      For the risk of grief we’ll run.
      We’ll shelter him with tenderness,
      We’ll love him while we may,
      And for the happiness we’ve known,
      Forever grateful stay.
      But should the angels call for him
      Much sooner than we planned,
      We’ll brave the bitter grief that comes
      And try to understand.”

  14. Thoughts are with you all at this heartbreaking time. Was a pleasure and a privilege to nurse your beautiful boy on ward 8. I am shocked and saddened by this news as oliver was so well the last time I saw him. Love to you all. Mel xx

  15. Fran,

    There is nothing more I can really add to what everyone else has said. Iv read all your blogs and been amazed that that little boy could still smile after everything he’s been through, and you Paul and Ella too. You’ve done something I think most of us think we could never get through and I’m in no doubt Oliver knew how much you all loved him. You’ve been so strong for him he was so lucky to have you. I’m sad to hear you haven’t had much support and its a shame we were all dotted around the country as if we were all near you, we’d have been there for you all in person. We are all here still if you ever want us. My heart is truly broken for you xxx Lianne xxx

  16. Thank you for sharing the time you had with Oliver with all of the may 08 aunties. We have followed his ups and downs with hope, and are crying right beside you now. We will be there in spirit with you, thinking of you and your family and sending you all cyber hugs.

    Rip Oliver, May you dance with the angels, and be forever free from pain x x x

  17. I will miss Oliver and you all greatly. He was such a brave little boy. His cheeky laugh and mischievousness will stay with me, I’m sure of it. Thinking of you all Xxxx

  18. Thinking of you, Paul, Ella and extended family members during this sad and difficult time.

    Oliver was such a wee trooper during these last 21 months and always did so with that amazing smile on his face. Heaven has gained another angel whose wings grew far too soon.

    Play high above the clouds Oliver.

    Lots of Love

    Lynda (May 08)

  19. i am devastated to read this, I used to work on ward 8 and I used to look after you Oliver, well your mommy & daddy mostly did, I just helped a bit!
    Rest in peace little man and all my thoughts are with your beautiful family. Sleep tight x

  20. Fran,
    I’ve never met you or your beautiful boy but I feel your loss so deeply. Oliver was such a brave little man and I’ll never forget him. Thank you for sharing his journey with us.

    Sending you and your family so much love.

    Deon (May 08) xxxxx

  21. Reading this broke my heart again.
    Just wanted you to know that he stole my heart too, and I feel
    So privileged to have been (even just a little) part of his journey.
    I can’t find the words to describe him,but he was an absolute joy, and so brave.
    As always, love to you Paul and Ella.
    Your brave little man will be truly missed
    Xx

  22. Oliver was the loveliest little boy ❤️ who ward 8 will really miss, was a privilege to have got to known you all. You’re amazing parents and so very strong. Well done nanny on yesterday’s absail was amazingly brave and emotional. Sleep tight gorgeous Oliver lots of love Claire xxx

  23. Dear Fran, Paul & Ella,
    I have been following Oliver’s journey on your blog, and I was so shocked to learn that he had passed away.
    The courage and strength that you have all shown throughout this journey has truly been an inspiration to me, and I will never forget how your beautiful little boy smiled and chuckled although he had so much pain and adversity in his life.
    He will always be with you, and we are always here for you Fran, if you feel able to come and chat.
    All our love, thoughts and prayers are with you.
    Amy xxxx
    (May08)

  24. Fran, I am so sorry to hear of the loss of Oliver after such a fight, as a family you gave him all the love and support he needed and he was obviously a great joy to you.
    Your blog has been inspirational and I have looked forward to each installment (hoping of course for good news). I think you should publish it as both a tribute to Oliver’s brave fight and to give people an insight into what life can be like for/with a premature baby.
    You may have found out who your true friends were during this time, but a lot of people were supporting you through your blog and would love to have been your friend..
    xxx

  25. Hi Fran,

    I am so devastated to here of your sad news and the upset all of your family have been through. Stay strong together. I hope you will find happiness and peace in the future.
    What a gorgeous little boy, sleep tight Oliver. Love to you all sophie xxx

  26. Sleep tight little man I know we never got the chance to come and meet you but you are a incredible little boy who fought everyday. I am so sorry. You have a very special mummy and daddy and the best big sister. So sorry paul and fran sending love and kisses to you all love caroline, luke , emilie and louie x x x

  27. I can’t believe oliver is gone. What a brave little boy. I’ll never forget his cheeky little face, he brightened up many night shifts. Rest in peace little man, all my love to your family xxx

  28. It’s taken me a couple of days to think of the right words to say to you but they stll elude me. I am so so sorry for your terrible loss I have been following your blog the whole way, Oliver was such a beautiful boy and such a fighter with a smile on his face the whole time. I would also like to say that you have a really good friend in Hayley. My thoughts are with you, Paul and Ella at this difficult time. All my love, Kate xxx

  29. Fran… I am so sorry for your loss…. I read your blog every week and followed Oliver’s journey. I know we have lost touch, but I need you to know that you and your family were often in my thoughts. Rest in peace lovely Oliver. Love to you, Paul and Ella xxxx

  30. Oliver was a blessing to you, your family and to all who came into contact with him. I have followed his progress and yours for over a year and can truthfully say that you are also a blessing with your words, commitment and love. Oliver’s life was painfully short but his memories will last more than a lifetime. One can only strive to be as strong as Oliver has taught us to be. Your son will be teaching us lessons for the rest of our lives. He has blessed us one and all. Thank you for all of your updates and tweeter. Without saying, I have nothing less than heart felt condolences. Prayers for you and your family and especially Oliver, without whom we would be less than who we are.

  31. Hi..Gay and Keith kept me updated about Oliver and I was so sorry to hear of his passing. A very special and loved little boy who will watch over you all. He went through so much in such a short life but gave so much to so many people. Take care and please take strength from all the wonderful memories he gave you. Sue (Keith overalls sister) xx

  32. I’m so sorry to read this sad news, I’ve been following Oliver’s story through Gay. You are such a special family, Oliver was a lovely boy, Rest In Peace little one. Love Evelyn xx

  33. Fran, I’m so sad I only just saw this, and the fact yoube been strong enough to write this beautiful post. You invested so much time and love and care and hope into ensuring Oliver had such a wonderful life, albeit short.
    I wish I could cuddle you all, I’m so sad and can’t stop thinking about this. Even though I didn’t know him, I saw all your lovely posts and pics and his personality shined through.
    With a heavy heart I sign off and send all of your family my thoughts, love and best wishes.
    Lauren x

  34. I am so sorry for your Loss, I followed your blog and your journey with Oliver, I wish you healing, love and support from those who love you, Oliver was a beautiful and amazing young man who will of taught you so much, he has left a deep impact on your life and the people around him, he will never be forgotten. Much love to your family. Nat x (May 08)

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