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
No comments:
Post a Comment