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Hero Diaries – Week 5

Posted on February 13, 2018 by Spider-Ede Leave a comment

Edie and Niamh with a large soft dog!

It’s been an emotional rollercoaster this week, but we’ve got through it and our little DIPG warrior is still fighting thanks to the love and support of everyone back home.

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The Spider-Ede Appeal – DIPG Awareness

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Sometimes it’s the small things ❤️ Sorting through the piles of envelopes & leaflets that we have just left at the side when they’ve been posted and come across this. Almost missed the little message. We don’t know this person, had no idea he knew us. If anyone knows Jack that delivers for amazon in the Wirral area please thank him and let him know this made us smile. Jack might not have said this to us if we had been in and opened the door. We often see people looking at us not knowing what to say or if they should say anything at all. Please don’t ever be afraid to speak about Edie, tell us you are thinking of her or of us. She is not a stigma, she still is and always will be our daughter ❤️💙 to know that people are thinking of her means so much. If you can be anything, be kind. You might just change someone’s day completely. Thank you Jack, you didn’t have to write this but it was very thoughtful, especially from a complete stranger ❤️🙏 #DIPGAwareness #BeKind #Love #Kindness #ChildhoodCancer #CancerSucks #DIPG

Exactly a year ago today. Driven by love and desperation. Our little family of 5 flew 5000 miles away from home in search of hope. We didn’t know then that we would be flying home after losing Edie to this Monster 💔💔 We had to hope that something could save our baby. Never wanting to just accept what Doctors had told us, prepared to fight and do anything we could to give her a chance. 💪 DIPG is a high grade brain tumour that develops mostly in children aged 3-10 and has the shattering prognosis of up to 9months. 9 months to make memories, with a beautiful child you brought in to the world, have been watching grow up, and never imagined that would be cut short at 4 years old 😢 Edie was normal, happy, seemingly healthy 2 year old until summer 2017 when she started getting headaches and became increasingly emotional. She was diagnosed with DIPG 30th November 2017 after a precautionary MRI scan. We had 11 months with Edie from diagnosis, but it was a rollercoaster. Her fight and bravery made us so proud and she raised so much awareness, touching so many hearts❤️ We have been struggling during the festive season, our first without our girl. Please give us a little more time and we’ll be right to it again. Thank you for all of your well wishes, love and constantly having us in your thoughts. We need it and appreciate it🙏🙌 We wish you all a healthy and peaceful 2019

What do you give a child that isn’t physically here anymore? 💔🎄🎁 Edie has a bench and a tree in our local cemetery for us to visit her. We have painted a #SpiderEdeRocks with her favourite movie characters and on Christmas day we’ll put it near her tree. We hope when people see it they remember or learn a little bit about our girl, who she was, what she likes ❤️💙 Our SpiderEdeRocks are to raise awareness of DIPG and of Edie’s personal fight, they will forever be her legacy. If you want to help us out search for the Facebook group #SpiderEdeRocks and get involved. #RememberMe #Cancer #DIPG #DIPGAwareness #CancerSucks #PediatricCancer #ChildhoodCancer #HomeAlone #Ratatouille #SpiderMan #Beethoven

The staff and parents at Edie’s nursery Park Wood Private Day Nursery and Forest School have been so supportive of our family this last year.🙏 We received this photo of some of Edie’s lovely nursery teachers. Each of the staff at nursery have personally gone out and bought 2 extra presents whilst doing their Christmas shopping, one for Niamh and one for Len ❤️💙 Every time we take Len into nursery we get to see a beautiful memorial for Edie outside, set up by the staff and children, including Edie’s friends👭👬 They have a memory book inside the hallway and anyone attending Park Wood can write in there. We regularly stop to look through the pages, so please keep leaving us little notes. Thanks to little things like this we have faith our girl will never be forgotten 🌟 Park wood, along with Niamh’s school, our friends and family have all gone above and beyond to help us get through this time of year. More than we would ever have expected 🙏🙏 Thank you all so much, this has taken great pressure off us and we haven’t had to think about Christmas too much.

We hadn’t yet posted all the details of Edie’s service. We weren’t sure if it was appropriate or would it be a bit “weird” to be telling people. But, we now know people have been wondering but not wanting to ask. As a family we carried Edie to the crematorium ourselves immediately after her service in Mexico. Mummy and Daddy holding the sides and Wonder Niamh came forward, holding the front and helping to carry her sister ❤️💔👭 It’s thanks to Niamh that we can look back on these moments and see beauty and love in such sadness. When choosing Edie’s urn, we liked a pure white box, but Niamh said “no, Edie can’t have white, she gets too messy” 🙈 she knows her sister well. So here she is, after flying home on our knees, together the whole time, Edie now stays at home with us ❤️❤️ #AlwaysOurBaby #ForeverOurBaby #Forever4 #DIPG #DIPGAwareness #Cancer #PediatricCancer #CancerSucks

Yesterday evening the real Santa from Story Time with Santa made a special visit to our home 🎅🏻❤️ As parents Christmas is proving difficult for us after losing Edie, she absolutely loved this time of year and we know she’d love us to still have a magical time. Especially her brother and sister. We had every intention on trying to take the children to see Santa but knew that it was going to be emotional. Then, one of our superhero friends Yvonne swooped in to save the day again! She arranged for Santa to come to us to take away a bit of pressure and help us avoid any crowds. Well, Santa was truly incredible! Niamh hasn’t stopped talking about it, he read a lovely story and although Iron Len ran riot he managed to get him to join in too! Next year I really hope we feel less pain because we would love to be able to visit Santa at one of his wonderful shows! Thank you Santa! 🙏🎅🏻

Still a few tickets available ❤️💙

This 5 year old girl lost her little sister to DIPG not even 2 months ago. Being only 13 months apart in age they weren’t just sisters, they were best friends. Niamh is so brave and remembers her sister everyday. When her class had to paint decorations for their class tree, Niamh chose not to use the class colour of green but asked if she can do a red and blue one for Edie as well as her own one. So Edie’s angel decoration now sits at the top of the class tree, sparkly and beautiful just above Niamh’s all red one. ❤️💙 The staff, parents and children have been incredible at Church Drive. We have such a great support network, from sat crying in the car and parents I don’t know coming up and hugging me (thanks Julie, I did need it) To raising money to help us out over Christmas while we try and pick up the pieces. This community is part of the reason that I can say I think we’ll be ok. We miss Edie so much, DIPG took her from us far too early and we cry everyday. But if we look around there is also so much love that we can’t not smile even through the pain. Keep being kind to others, you never know what they are going through 💔

🎄Come and join the Christmas fun!⛄️ For just £7 per child there will be a Santa visit with a gift each, disco, children’s buffet and so much more! Don’t forget to dress to impress, you could win the Christmas outfit competition!! 🎉🎁 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

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