Family

 

       

     Family - what does it mean to you ? 

Wikipedia says - In the context of human society, a family (from Latin: familia) is a group of people affiliated by consanguinity (by recognized birth), affinity (by marriage), or co-residence and/or shared consumption (see Nurture kinship). Members of the immediate family includes spouses, parents, brothers, sisters, sons and/or daughters. Members of the extended family may include grandparents, aunts, uncles, cousins, nephews nieces and/or siblings-in-law.

                 So I have my little ( conventional ?) family, me and my four gorgeous babies and I have my extended family, mum, dad, brother, sister in law, one niece, one nephew, one aunt, one uncle and two cousins, quite a small family . Just enough really ! Then when I was growing up we called my parents close friends auntie and uncle so we have a few of those special people in our life. 

    Now though I have an extra family it's my #TransplantFamily included in that are donor families,  parents with children with congenital heart disease (CHD)  and cardiomyopathy or adults with these conditions. Pretty massive family ! Sometimes this large family becomes dysfunctional there are breakdowns in communication, one up manship , disagreements, personality clashes, things can either blow up or blow over. That's just it we are all different, we handle things differently , we perceive things in our own unique way and that's fine.....on the whole ! We just have a common bond, that is sometimes all we have and that's ok isn't it ? Thanks to social media we've managed to find each other easily at the click of a button. I think peer support like this is Facebook at its best. 

                                    

Through what happened with Eloise I have met the most wonderful human beings, people I love dearly. Their pain or their happiness becomes mine too, I feel for them , I understand. Without organ donation and transplantation these people wouldn't have walked into our lives. You know I wish viral cardiomyopathy had never ripped Eloise's heart from her but it did, I can't change that . No amount of wishing can change that so all we can do is make life as rich as we can. People , special wonderful gorgeous people have been our saviours, the medical and nursing staff, Eloise's donor family, our biological family , our family friends and our carefully selected bonus #transplantfamily. 

   

     Mentally living with a child with a potentially life limiting illness is tough, it's like a niggling toothache, not too severe but the pain never leaves you. You manage, you lock down occasionally to provide self preservation but sometimes it's good to talk and who better to talk to than someone going through the anguish too. I'm a real believer in peer support. It works for me , that and writing a blog . I'm so lucky to have such lovely people at the centre of my #TransplantFamily, I love them a lot, together this all becomes easier than being alone but still allows me the solitude I often crave. I don't find it intrusive , you can tailor it to your needs tapping into it whenever you want or standing back if your own life needs you too. When Eloise was blipping I found sharing everything on Facebook quite hard so cut back on the information shared with the masses this is when I turned more to Twitter meeting another "branch" of the #TransplantFamily ! 

     I'm so proud of my #TransplantFamily they're just awesome , you've all been given a glimpse into our World if you've been following my updates on the incredible Stacie. You just don't know how much I wanted her call to come, it had to happen, three dreadful years of waiting, hope's flame starting to flicker . I won't deny that it was hard to keep the positivity going but you have to believe in miracles and cling onto hope as without hope you have nothing. I guess we were all a little scared for you Stacie. Thankfully a perfect match arrived for Stacie and she's just rocked post transplant recovery ! How our #TransplantFamily united in prayer, positive thoughts, strengthening vibes to see Stacie through her surgery it was empowering . I feel we all celebrated each milestone with her ,very uplifting. 

 So together we unite to celebrate the good times, the post transplant milestones , the progress, great clinic appointments, exam success, weddings, new babies and heart transplant anniversaries.

                              

    Sadly there's always a downside, miracles aren't always available as transplants don't always come in time, they don't always work, time post transplant can be limited. Not everyone makes it and that hurts. In the last 24 hours I have witnessed on my FB the heart community pulling together to send love, thoughts and prayers to a little girl battling to stay alive post cardiac surgery. The miracle never happened and she passed away. The community will wrap their arms around this little girl's mum, they'll support her and comfort her. We don't all know each other but we all care. #UnitedWeStand. Life is unpredictable and at times like this it just doesn't make sense .

                                      

So my dearest family I love you lots, thank you for being there for us. I hope I'm there for you in return. Big squeezy hugs to you all. XxxxxX 

Dear Rebecca

Dear Rebecca, 

         We're nearly at that significant date again and I cannot stop thinking of you. I think of you stood in intensive care looking at your baby . I've seen a picture of her now haven't I so that image is strong. I admire your strength, I always have but knowing now that you held Zara in your arms while they performed a lumbar puncture that wasn't to aid her diagnosis or prognosis but to allow her to become an organ donor I'm totally in awe of you. You stared at that monitor willing her not to flatline, knowing that would mean you couldn't donate her organs. How I too stared at monitors, listening to them alarming, looking at my daughter, looking to her nurse for reassurance. I too willed Eloise's heart to keep on beating. We were in parallel situations at the same time, both facing what no parent should ever go through. Our daughters were dying, sadly time ran out for Zara on the 9th June and she was diagnosed as brain stem dead . Time was running out for Eloise as well, the clock was ticking and drawing her nearer to needing ecmo, her condition was now critical. On the 8th of June Eloise had been listed on the Urgent Heart Transplant list and was at the top of the European list. 

       Late afternoon on the 9th of June 2002 we were called into a side room to talk to Eloise's cardiac surgeon, an organ donor had been found for Eloise. He carefully explained the heart wasn't a match blood group wise but he felt this was Eloise's last and only chance of a transplant. Of course I knew nothing of you or your baby right then Rebecca. I was shocked, scared, grateful, you know all those emotions rolled into one, a massive ball in the pit of my stomach. Then not long after on receiving an increased dose of sedation my baby arrested in intensive care. I willed her to live , I did not want the donor heart to go to waste. I did not want you to hear your daughters heart couldn't be used. I wanted Eloise to live, my fighter survived, she heard me. She was taken into theatre at 22pm, whilst there she suffered a further cardiac arrest. You daughters gift came at just the right time Rebecca. Eloise made it through the transplant and critical post operative period. It was a week later I think that I was told a few details about Zara, knowing her name helped me. I needed to see her as a real baby , knowing her as "just a donor" wasn't enough. That is when I wrote to you for the first time, it was so hard getting that right, I don't think I did , but I know you treasure it. To hear that you keep my letters safe with some of Zara's belongings meant a lot to me. 

                       Your decision to donate Zara's heart saved Eloise,  without you I would be in mourning too. I cannot say thank you enough, it's not enough, it never will be. You say it is, you are comforted knowing Eloise is happy and well . That's all I can give you isn't it, reassurance that we'll never take your gift, Zara's life for granted. We don't forget Zara, maybe it's Zara that looks out for Eloise, we all need a Guardian Angel . I hope you can see in the snippets of our life I share with you via email that Zara's heart came to the right little girl. I love my daughter so much and I'm immensely proud of the wonderful young woman she's growing up to be. I hope you are too, I want you to know her. One day you will both meet and I think you'll fall into each other's arms. Remember our meeting ? Prior to it we both confessed to not being touchy feely people yet we had to embrace and hug each other goodbye. It felt right, we'll always have a bond. Drawn together by tragedy and a miracle of life, Zara and Eloise ❤️

      Right now I'm feeling overwhelmed, I'm thinking of all those treasured milestones I've witnessed and all those memories made over the past 13 years of Eloise's life. I gave Eloise life on the 7th September 2000 and you gave Eloise's life back to me on the 10th June 2002 by being incredibly brave and letting Zara become an organ donor. I guess I'm crying as you don't have what I've got an extra 13 years of memories,  for Zara there was no first day at school, no family holidays , no getting a new pet, no sleepovers, no learning to swim, the list is endless. How I wish neither girl had got sick , no meningitis for Zara and no viral cardiomyopathy for Eloise, I can but dream, I expect you do to ? But the unthinkable happened, we faced every parents nightmare. You saved me from living my nightmares Rebecca. I know Eloise's future is uncertain, there is no guarantee she'll be here for as long as I want her to be but I'll live with that and treasure what I have, I have her here right now and for that I'm grateful.

                        

          You do realise how important you are to me? How I love it when an email pops up from you. I love the fact you never forget when Eloise has an appointment. I love how interested you are in her transplant, her medications, her tests etc. I'm honoured to have you in my life, you were so supportive when Eloise was having her rejection blips. I was so afraid to tell you, not wanting to upset you. But you were so happy I did tell you and you went and "researched " all you could about rejection and treatment etc, educating yourself ! It's the "nurse" that's inbuilt into us I do love a plan ! 

           So Rebecca tomorrow is Zara's day, we shall remember her, light a candle and send up her heart balloon. I shall think of you dear lady as I'm sure your heart will be breaking all over again tomorrow. I'm sending you love by the bucket load. 

                        

                                                  Loads of love  Bec x