Balloons and Flowers

It’s been a rough few days since the funeral but we have had some lovely and poignant moments with the family at home in Cirencester. One of these was last Saturday.

Edward’s beloved Uncle Tom and girlfriend Naomi (who Edward insisted on calling ‘Benomi’) bought some balloons for Alice and Arthur to release into the sky with messages of love for their much missed brother. We all walked through Cirencester Park to a favourite spot and gathered together before letting them go. We watched them for ages with tears in our eyes as they drifted up and away. It was a beautiful sight on a beautiful day for a beautiful boy.

We have also visited the church regularly to see Edward’s funeral flowers which now have pride of place in one of the side chapels. We go in, light a candle and think about him. It is a very calming and comforting thing to do for all of us.

Clare tends to Edward's flowers in the side chapel

Clare tends to Edward’s flowers in the side chapel

Alice and Arthur have been superstars. Telling them that awful morning that Edward had died was one of the hardest things we will ever do. The four of us cried together and held each other tight.¬†Arthur let out a cry of such anguish that lasted for several minutes and will live with us forever but he registered the enormity and finality of losing his twin almost instantly. We’re told that this was the best thing that could have happened. Alice, who always knew that her brother had a very serious heart condition and might not come home, has been incredibly brave throughout but is clearly finding bed time in particular very hard without him. We all are.

We talk about Edward all the time and encourage it. He was, is and always will be part of our family. We are so, so proud of him.

9 thoughts on “Balloons and Flowers

  1. Claire

    I’m not really sure what to write. Just wanted you to know that as fellow parents of a child with HLHS, you are always in our thoughts.

    It must have been awful telling his siblings, but you’re all there for each other and he is still watching over you.

    So sorry you are going through this.


    1. Rose

      Hi Andy and Claire, once again we are so sorry for your loss, Ned had a wonderful send off and I’m sure he was looking down and enjoyed every bit of it ( espcailly the fancy dress ),although I know how serious hlhs is I don’t think it ever entered my head that how truly enormous it really is until I met your family, Abaigh ( my granddaughter ) was very poorly at the same time Ned was and they both started to show signs if improvement at the same time, Abaigh continued to improve but sadly Ned didn’t , and I know I felt so guilty of the joy I had that Abaigh grew from strength to strength when you , Claire and Claire’s parents where going through so much pain, you all stayed in my thoughts after I came home and I was so sorry when Catherine told me Ned lost his battle with that awful infection, and became a beautiful angel,it thought me not to take things for granted that things always turn out as you think they will, Ned will always be with us and as we get ready to take Abaigh home I realise more than ever how very very lucky we are( I sent a pm on Facebook I hope you got it), thank you for sharing your beautiful story of neds journey…. So honest
      Love and strength to you , Claire and family

  2. sally spring

    Just to say you are all in our thoughts many times this week. Alice must be finding this hard given her age. Trying to be brave for you …so hard to watch I am sure. For Arthur losing his twin his wing man must be like losing a part of himself. However take strength that they have had entirely healthy reactions from my experience anyhow
    Keep talking about Ned as you already are and I will think of your darlings as I put my boys to bed tonight.
    As the months pass there will be little windows of time appearing when the grief is not so paralysing… time goes on those windows grow longer
    Keep talking together keep remembering together and as a family you will keep strong
    Sending you love and strength
    Sally spring xxx

  3. Norma

    Dear Clare and Andy,
    That was tough to read; but I am grateful you are able to share this very personal and devastating “moment,” of informing Alice and Arthur of their brother’s death. To hear in particular of Arthur’s reaction, as gut- wrenching as it is; he powerfully acknowleged what you had said and that he has understood as well as a four year old can.
    Again you have shown us your amazing “team Wheatley” spirit.
    I can’t be the only parent who internally asks “how would you deal with this”; what to say and do.
    I cannot imagine; nor want to even try.
    Another question is “how can you deal with this?” You have both been inspirational ,as many others have said; and not forgetting Clare’s parents. The love and strength of your family shows “how.”
    With the lovely idea of taking balloons to the park and releasing them for Edward. Looks like you will all work it out together.
    Thinking of you. Love and hugs to all. XXXXXX

  4. Laura Woods

    Hi Andy and Claire.

    Again, it’s hard to know what to say but you are in our thoughts and we are here whenever needed for teams Wheatly and Rocknean.

    Following your last post I sent a message via Facebook recounting my memories of Ned’s beautiful ceremony. I hope you received it but please let me know if you didn’t and ill resend.

    Much love
    Laura and family xxxx

  5. The Palins

    Sending all of our love – you are all in our thoughts, constantly. Thanks for the continuing blog entries, Andy, it makes the distance seem not so vast. Love to you, Clare, Alice and Arthur. Edward is in our hearts always. X

  6. nikki shears

    Dear Andy, Clare, Alice and Arthur,

    I am so overwhelmed by your updates and pleased also that you can let us- neds army, know how your family is doing.
    I am in awe ( if thats the right word to use in this instance) of your courage and bravery that astounds me every time i read an update – i can see where ned got his brave beautiful personality from.
    I did chuckle a little a couple of times in your address at some of neds quips whilst in hospital, thinking to myself, i like his dry personality! Also, when ned requested cous cous for dinner – he has good taste in food, sophie and kian love lamb cous cous!
    What a fantastic and beautiful idea of uncle Tom’s to release balloons into the sky- i am sure Alice and especially Arthur found this a lovely way to reach Ned. This was such a positive act of love that will certainly help your family.
    Remember we are still all here, thinking of you, sending all our love and wishing Alice and Arthur all the fun in the world before the new school term begins.
    love paul, nikki, sophie and kian x

  7. Natalie Baird-Clarke

    I continue to think about you all every day. We have the funeral programme with Edward’s gorgeous photo on the front sitting in our kitchen, on a shelf next to a couple of photos. Today Isabella noticed it for the first time and spent ages looking intently at the collage of photos on the inside, smiling and giggling at many of them. It made me think that Edward will always bring joy and love to so many hearts.
    Sending you all our love, every day,
    Natalie & Isabella xxx


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