You know when you find yourself in a situation and think “I NEVER imagined I would be doing this in my life”?! Well that basically summed up Wednesday afternoon, when we were asked by Forget me not Children’s hospice to come and share with BBC Radio Leeds our story of loosing a baby with a life limiting condition and how they have helped and supported us on this journey both antenatally and since. It was to be part of a feature they are doing of local charities for BBC Children in need.
WP_20151111_14_47_53_ProUnless you live under a rock you will be aware that tonight is all about children in need. It is the time of year where celebs, schools and regular people all over the country do various things to drum up donations for charities that work with kids and families with a whole host of illnesses and life limiting conditions. They work to make memories for the families, to help them make the most of the time they have together, offer support and respite for families, parents and siblings and they generally make life better for those struggling.

I (like many you) have always contributed a few pounds, did the whole non uniform thing at school and supported in small simple ways, but I guess its not until you personally become one of those parents/families or until you become a recipient of children in need donations to help you get time with your baby, bereavement counselling, play sessions at the hospice and holistic experiences to unwind at no cost, that you suddenly realise what a truly great cause this is. And I regretfully never really made the connection with peoples generosity and our support from the hospice until Wednesday’s interview, but after pausing to reflect on that question, I realised how truly grateful I am for Children in need and the annual support they offer to thousands of families like us!

From the beginning of this journey of expecting a child with a life limiting condition, I have been determined to use my experience to be able to help others in whatever way I can, not just via my blog but in person and other ways too, I have attended a baby funeral and emailed a friend to be there for them, I have met with families expecting a baby with Trisomy 18 to talk, and so when we were asked to do this interview, to be a feature to raise awareness in West Yorkshire and hopefully help to get more funding to help families like us to get that support and time with baby/their kids, I couldn’t say “no”. I knew I would feel nervous and perhaps it would be emotional too, but both Nathan and I desire to be able to have Poppy’s story live on and for others to gain strength or support from our experiences and so it was always going to be a definite “Yes”!

We were interviewed by Johnny I’anson (who Nath knew of very well and was shocked I didn’t…awkward), he was really nice and we had some laughs all together aside from the seriousness of the interview. The hospice, as always had plenty of beverages and treats on hand to enjoy and it was great to be with Emma and share another part of our journey.
InstagramCapture_d42d0ab5-0f6a-48d2-a34f-a643531cf25c InstagramCapture_64eec3b1-6415-4881-b509-b647eb4118fdShe went first and explained her role and a little about the hospice, and then it was our turn. He asked us about the hospice, how we felt and feel now about hospice care, what they have done for us, if it differed any from others experiences and then what happened with Poppy last year and what the hospice have offered us since then. I love Emma, she’s so kind and loving, yet such a joker and extremely supportive too, I loved hearing her talk so passionately about her amazing work, and knowing that many more people would be touched by her kindness!
WP_20151111_14_37_50_ProInstagramCapture_a5202181-d393-4c15-9c91-fb2b045889f0For that and so many other reasons, it was very easy to praise the hospice, to give the facts of the amazing work they do and how they are a home from home to us, but oh how emotional it was to tell the story of what happened. I get so used to telling the odd facts or things I have rehearsed about my story without too much emotion, but I rarely am on the spot to tell the whole story and I realise in those moments how fresh again it all feels, how very sad and tragic it was that our baby girl died. I also realise when I think of the stories of others from SANDS and others I have crossed paths with in life, that we were so blessed to have time at the hospice with her in a homely setting, with support and counselling on tap and a safe haven whenever we need it! I honestly do not know how different and much harder it would be without having had that. I don’t mind that I cried on the radio, they may or may not edit it out, I hope they don’t so that the listeners can feel a degree of our pain. That they can hear the pain of our experience and compare it to the joy in our voices when we speak of the hospice.

The interview will be played throughout the day on BBC Radio Leeds today, I hope if you are in a position to that you will be able to donate to this wonderful cause that enables experiences for families with poorly kids, that you cannot put a price on! I seriously never imagined I would be doing a radio interview in my life, especially for something so sensitive, but it was a wonderful experience with wonderful people and I am glad to be able to be a voice to raise awareness some more, and I am glad that Mr Smith was by my side once again and able to share his thoughts and feelings too!
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I have never shared this experience publicly before, I don’t think even my friends and family have heard much about the day following her birth other than the facts (hospital check, dressing her for burial, taking her to the funeral home…) but when I look back on that second day with her I remember it clearly from the moment I awoke. Here a year on to the day, it seems fitting to share it with you, to show how we made it through the week of saying goodbye and funeral planning.
web002bwWe had stayed overnight at the hospice, it was just Nath and I with Poppy. We were in the bedroom and her in the crib next door in the nursery. We didn’t set any alarms as we needed our rest after the previous days events and to be honest I imagined my sleep would have been broken anyway with the sadness of it all…I was very wrong.

I had the best nights sleep ever and awoke to the sun beaming through our curtains. It wasn’t too early and whether in denial, feeling surreal or just numb I had little sadness in my heart at that point, but I remember the words of the song “In the arms of the Angel” rang through my mind…I hadn’t heard it in years but at the moment it seemed the perfect thing to hear. I didn’t really know at that point what I believed about her in relation to the angels but I did certainly believe in angels, believed that they were around us to bear us up at moments like this and I also felt she was in their care…

“In the arms of the Angel fly away from here…You’re in the arms of the angel
May you find some comfort here” 

I sat there on the bed with these words, the tune going over and over in my mind and I took a deep breath and nodded…yes we were..all 3 of us were in the arms of not just one but several angels.Here we were in a place of refuge…the hospice had meant we could stay in a homely environment with our child, it meant we were protected from being on a maternity unit, it meant that we had the best nights rest before the natural duties after death and it meant that we truly did find some comfort there…whilst I am sure there were heavenly angels around us during that week – comforting, carrying our child…we were surrounded by angels at the hospice helping us to make the most of our time, comforting us and helping us with the next few steps.

I wished that day hadn’t meant I had to go to the hospital and be late back, that I missed the opportunity to dress my daughter.

I wish we had been by her side for the day..looking at her, talking together and making memories, but it wasn’t that way. Its Okay though because as long as I hear that song I will be reminded that we were comforted and helped that day through Angels all around us in the hospice, and those we couldn’t see.
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The hospice has done so much for us over the last year that whenever I go back its like going home. There’s a peace I feel there that I cannot explain and it is a “safe place” where I know I can be open about where i’m at and can share anything. From the start they have sheltered me from further pain by offering refuge at the most difficult time and now, at times (like Monday) when I go I know its okay to be sad if I want to or laugh if I want to or feel whatever that day has brought me.

There are a couple of people there that we see as our super heroes, they came to our rescue when we most needed it. Emma from the care team whom we have worked closely with, who helped care for Poppy after birth and who remembers to text us on mothers and fathers days, always looking out for us and always interested in our journey – I love to see her and catch up and laugh together and it was nice to do just that, as well as enjoying a gorgeous lunch together when I went there Monday. Its like seeing an old friend and I know we will never forget her!
WP_20150629_12_52_15_ProThen there’s Lisa – the councillor who has since a few days after the funeral sat and listened, talked, laughed and cried with me and helped me figure it all out. Who constantly assures me its normal and ill be okay, who lifts me up when it all gets too much and reminds me of things I can’t always see in myself (she sat with me again Monday so I could talk about some recent struggles with it all) together her and Emma have created an environment that when I go if Im having a rough time its Okay to let it out and be honest about it, with them there’s no pretending.

We have been doing various things with the hospice since we lost Poppy because they have done so much for us and we wanted to give back some of that super hero vibe to other families – we have of course fund raised and shared Poppy’s story for an Ante natal leaflet and for some funding from Children in Need – and then I have started on with “Poppy’s Gift” which we gave the first of to them and which was gratefully received.
WP_20150629_11_25_11_Pro InstagramCapture_f191d4a1-e47b-488f-affa-e179d4bfb425It makes me happy, despite my grief to be working with them on various projects and I love that because of that, now when I go in I am made to feel somewhat like a celeb.  As I walk around I  am always introduced as and referred to as “Poppy’s Mum” it makes me feel mint (do you know how good that title sounds and makes me feel?) to be acknowledged and accepted as her mum, no buts she died or whatever and no questions – just an acknowledgement that I am her mum. They are grateful to us for sharing her with them and working with them on these things but we are grateful for their super hero attributes in helping us through this journey and helping us to help Poppys memory live on an bless so many lives! #HospiceLove

Meet Emma from the care team and our families biggest support - she is  amazing!

Meet Emma from the care team and our families biggest supporter – she is amazing!

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Not compatible with life but Compatible with Love…

I still remember how my stomach turned as the Fetal Medicine specialist told me over the phone at 30 weeks gestation that our baby was “not compatible with life”, because she had tested positive for full Trisomy 18, she didn’t have a chance to live and she probably wouldn’t live without assistance from the very people that had labelled her as that. I know exactly where I was  (in the car outside Pizza hut for a lunch date with Nath) and how I felt when they asked (at 30 weeks) if I wanted to end this now with an early induction?!
So because my daughter was not compatible with life, it also meant she was not compatible with love?

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Thankfully my heroes at the Hospice believed she was and Emma has taught me this and been our friend ever since. We visited again this week to discuss with her “Poppy’s Gift” a little gift of love our family have set up in Poppy’s remembrance to help other families with a similar diagnosis to know their baby is compatible with love and to know we want to support their desire to wrap them in love for however long they have them. The thing that brought a lot of comfort to us was the blanket that Naths mum had made her and the hat and cardigan my mum made were essential when she was born and so we decided to include them in a little gift pack for the Hospice to take to families referred to them and these will continue to be knitted by volunteers and packaged up by us. I still have Poppy’s blanket (of course) and in the early days it filled my arms, as a new mother with no baby it gave me something to hold, something physical to look at to remind me she was here. It almost told me “you are a mother and you wrapped and held your baby in this”.  Now It sits a little further away from my bedside but I still look at it and touch it occasionally and remember her little body wrapped inside.

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Emma also gave the kids some Christmas gifts from the hospice that Santa had left them, which made their life (that and the flapjack they seemed to scatter everywhere) and gave me a special gift too – the leaflet they have been working on and that will go out to hospitals for antenatal referrals. Inside is our story, another way we wanted to spread the word that their babies are compatible with love and another way to help Poppy live on and for others to know of her:

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I feel so pleased that despite our loss we have been able to use our experience in these short months to be able to help other families that have to face a “not compatible with life” diagnosis. Whilst my grief is still under the surface and quite regularly erupts, working on these projects with the hospice and finding these ways to keep Poppy’s memory alive have helped me to heal some. I feel I am finding healthy ways to remember her, and ways in which she can touch the lives of others for the better (something I hope all of my children will do) and give a gift to them because of her life.

I felt so positive and peaceful and that life was beginning again that I also chose not attend this months SANDS meeting. I haven’t made my mind up yet if this was a brave thing to do or a mistake Ive made but on the day I just felt so good at where I was at in that moment that I didn’t need to bring up Poppy, I didn’t need to relive what happened and I didn’t have the capacity to share the load of others grief either. I just felt like a ray of sunshine was poking through the clouds, that things in the world were starting to look good again and that I had no more energy than to bask in it until the clouds cast over and the storms hit again.

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