Torn

Torn

Heart Transplant Families UK has now been running for 2.5 years, I started it in August 2011 with 26 members all mum's of paediatric transplant recepients it now has 353 members from all the UK Transplant Centres. 

    Lately we have experienced a lot of sadness and deaths in the group, deaths of young transplanted children. This is hard to comprehend , why do some transplantees have 20 years others just 1 or 2 ? I think it always brings it home that nothing post transplant is guaranteed , it's still a lottery of survival. No different really to when listed for a transplant. It makes us all feel vulnerable. Also because of the group some of us know these children face to face, they aren't just names. Our children know them, have played in clinic together, shared the transplant accommodation or been in the next bed on the ward. Without the group I guess some of our relationships with each other wouldn't have formed. But that's just it because of the group when these tragedies happen we support each other, we continue to look after these families. They are still very much part of our Transplant Family.

       I guess though that is why at times I am torn, I'm sure a lot of transplant families like mine feel the same. Do you get to know other families and share a fraction of their pain when things go wrong or do you not get involved in the transplant community ? I guess we are drawn to each other anyway, a common ground an unspoken understanding. Something that people not in our World find hard to understand. I think that is why I have enjoyed setting up our Heart Transplant Families UK Community Page on there we share our stories and thoughts with the general public. They get a glimpse and a level of understanding of the realities of transplantation. https://www.facebook.com/HeartTransplantFamiliesUk?ref=hl

    Torn.  I think sometimes it would be easier to walk away from the group as you can imagine at times there are arguments , differences of opinion and clashes of personality. As admin to the group I have always stayed publicly neutral that is not to say behind the scenes that I do not have a strong opinion. I find it hard not ranting at people, I'm only human. I do feel pressure to keep everyone happy and provide a useful supportive group. However some days like yesterday you have to say do you know what you are getting nowhere, turn off FaceBook and go and enjoy your day. After deleting a couple of posts including my own.....The group is only a small part of my life I just have to realise I will never please everyone. You cannot let it take over your life. So we'll see what today brings. I know in reality I cannot walk away I know the majority of group members appreciate what goes on behind the scenes so to speak to keep the group ticking over. I had some lovely private messages of support yesterday so I guess they go to balance the negativity ! 

     Torn. I guess it all lies in how much you let yourself be defined as a heart transplant recipient , a heart transplant family or in my case as well a transplant mum. It's getting the balance right. Dipping into the group, into transplant media, research etc but not letting it swallow you whole. Keeping it boxed in a separate part of your brain and then going and enjoying that "normal" life we so want for our transplanted loved ones. Eloise is only one of my children , I have three other wonderful children they all need me and are all as equally as important and special. 

So no major conclusion to this blog post, I will probably remain torn at times but that's ok. I know I have transplant mums and adult transplant recipients amongst my closest of friends. They understand me on that transplant world level but we have also clicked anyway. Transplantation was the common ground we shared initially but our relationships are now so much more than that. So I thank you Heart Transplant Families UK and @HTF_UK for bringing these lovely people into my life. I love them dearly. #UnitedWeStand