Sunday, 18 March 2018
World Trisomy 18 awareness day
It's Sunday the 18th of March 2018....World Trisomy 18 awareness day (and month)!
It seems like forever since I last wrote anything here on the blog and I've missed it... but It's been a journey of many ups and downs and even now over one year on from losing Heni, our Trisomy 18 warrior, it's still really hard and a constant daily battle. A journey of adjustment to life without her.
However, despite the lack of motivation that I often have (to put words about how I feel down here on these pages) I didn't want today to slip by and NOT remind myself (and you) of the enormous blessing that my daughter was and that all of these precious little souls with T18 are.
We are especially grateful to have had Heni with us for over 21 years...a lot longer than the average! Some would say it was a miracle that she lasted so many years... and it truly was. Heni never had her heart mended, had minimal intervention, and we tried as best we could to give her a life free from hospitals and the pain and discomfort that they often bring... that was our choice and it worked for us and for Heni. However, I know that other parents would chose differently but unfortunately they are frequently denied the ability to access the often needed medical procedures that they would like for their children.
A lot of the medical profession still see Trisomy 18 children as being "incompatible with life", and doom many of these precious kids to a death sentence by this denial. I've seem countless stories on Facebook support pages from far too many parents about the denial of tube feeding, heart corrective surgery and so many other life saving interventions. How can this be? Isn't one life just as precious as another... despite the "seeming lack" that some children are born with?
I'm pleased to say that there are many Trisomy organizations (and parents) throughout the world who are doing a much needed job of educating professionals and spreading the word, changing perceptions and hearts along the way. They are also giving hope and courage to new parents who are often sent reeling in to shock when faced with such a devastating diagnosis.
The world at large are also often in ignorance of the innate value of what these children can bring to life and are unaware of the love and lessons that they share ...even during the briefest of sojourns through it.
That is why stories of families and children who do survive are so hugely important in this educational process and to that I have tried to add my voice and would like to again today.
Yes, we have shed many tears and felt much heartache during Heni's 21 years, but she was definitely compatible with life in many ways, and lived life to the fullest that she could. She needed full time care, needed help with everything, but she also gave back to life so much more than she took out. She was able to teach many lessons, gave so much love to everyone along the way and brought a mountain of joy during her lifetime. Although hard, I would never wish to have been without this learning and experience and feel that I am so much the better for having had her in my life.
So on world Trisomy 18 awareness day I would like to ask one favour of you, and that is ....if you know any medical professionals who are still under the misconception that these children are a waste of medical resources or the right to life.... I would kindly ask you to point them in my direction and share Heni's story with them. OR better still send them to one of the support organisations that can share educational resources with them and enlighten them of the right to life and immense value of these precious kids.
If you would like to know more about Heni you can read more here
Heni's story part 1 here
Heni's story part 2 here
Heni's story part 3 here
Heni's story part 4 here
Heni's 21st here
Empy chair and an aching heart here