Saturday, 28 March 2015

Why Henibean?




Why Henibean?
I mentioned in my introduction that I have four children. My second eldest is a girl named Heni. Hence my nickname for her being Henibean. She is super cute and super special in more ways than one. She is a little miracle. In July we will hopefully be celebrating her 20th birthday. No mean feat considering that she has Edwards Syndrome (Trisomy 18...full form) and considering the statistics have always been against her!
Live birth prevalence is 2.3 babies per 10,000 births.  Only 9% diagnosed pre-term make it to a live birth. Sadly most babies with Edwards are usually miscarried.
looking like and angel playing the harp at her 8th birthday

I say sadly because I cannot imaging the last 20 years with out our little Henibean... and although it has been the hardest thing I have ever done, she has given back far more than I could ever possibly give her. She lights up a room with her smiles and if you have ever heard of the saying "love the one you are with"... that saying epitomizes Heni. She truly does love everyone.
She was give the label "incompatible with life"  before she was born and I was advised to terminate her at 30 weeks by the Doctors at a popular London hospital, even though the median survival for full T18 is a humongous 14 days! 20% of live births survive 3 months and 8% live to being a year. 

Adventure girl in the days when she had more energy!


Hiding in the all terrain buggy at Tarn Howes in Cumbria (2012)

Here we are almost 20 years later having lived a roller coaster ride of highs and lows that would churn the strongest stomachs. She has taught me many things and is still teaching them even though she can't utter a word. She requires 24 hour care and can't do any of the things that we do and take for granted on a day to day basis. When I have a bad day (and there have been lots of them!) I have to remind myself that at least I can complain about it, walk out of the house and go for a walk/run and return with a better perspective (...if I have respite!).  She is stuck in her wheel chair and still smiles! Don't get me wrong....she can be a real minx too and has the lungs that can make the most horrendous noise.... even though she is on full time oxygen! That one has always been a bit of a mystery to me. She has pulled my hair, pinched my skin, slobbered all over me, tried my patience over and over again (together with numerous other things) ....she has also be a big contributor to most of my stress related health issues! However, without the bad there cannot be any of the good that goes with it. The growth, painful as it is. The search for knowledge that it's sent me on to find answers.  Last but not least, the most amazing pure unconditional love that she shows me and those around her. I am forever thankful that my little Henibean is one of the 8% of the 2.3 out of 10,000.

So now I have a second "Henibean" on line, named after the first, in which I can share my thoughts, frustrations, advice... and things I have learned along the way. I am still forever learning... but for some people, I may be a little further along the journey and hope to be able to help in some small way.
If you want to know more about Edwards syndrome you can read more here:-
 www.soft.org.uk and also
https://www.facebook.com/trisomy13.18familiesuk

I hope you like the pictures of Heni!

 Jx

Last summer in the Garden ( age 19).





2 comments:

  1. Amazing story and may God bless your patience.

    ReplyDelete
  2. Hi Jade, I just happened upon your blog from a linkup and I'm moved by your and Heni's story. I pray that you will find strength for the road ahead and that each day will be filled with reasons to smile. :-)
    Blessings!
    Marva | sunSPARKLEshine

    ReplyDelete

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