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.

Heni's story - Part 3

I don't remember much (from memory) of the first few years of life after Heni being born... it was one great long blur... a period of time in which I felt like I was in a black hole...constantly tired (hey what's changed?) and in a state that I can only call mourning.
I wondered every single day how long my precious little bundle was going to be around, but also at the same time trying to make the most out of whatever time that we had.
It's a weird "paradox" (that I still haven't quite managed to come to terms with fully)...
It's a mixture of mourning for the child you didn't have, mourning for the child who is still with you (but who may not be with you). This is mixed with the loss of a life that "could have been" but all the time trying to live here and now as normally as possible, trying to deal with the hand life has dealt you. At the same time, being ever mindful and grateful that I am a lucky one who still has the gift of a beautiful child who I can hold, love and enjoy. (Go figure that one out!)
All I can say is that it's a good job that I kept a photograph album and a journal to help me remember some of the things that she got up to during that very hard place and time.

Heni's Story - Part 2

  It's a good job that Heni had those three extra weeks inside of me to be nourished and grow a bit more. I think the fact that she weighed a hefty 5 lb on her arrival meant that she had at least a fighting chance to survive. Sadly, most of the babies with Edward who are born alive are much smaller and fail to thrive. Over the first number of months she lost a considerable amount of weight as feeding was extremely difficult for her. She found it virtually impossible to suck because of the very high palate in her mouth...when she finally did get enough milk she would throw it all back up again and thus the cycle of "express, feed, vomit" was established. Hour and hours and hours of it.

Hello!

Me ...on a "Flat Stanley" adventure! (for those who don't know Flat Stanley... more on that one in a future blog post)

Hello there... and welcome to Henibean!
This is my first ever post on my own blog!  I've read bits from other blogs on my navigation around the web and over the last few months, I've had a gradual kindling of a desire to write one of my own.

"Why a blog?" I hear you say...well, I guess my purpose is in wanting to share some of my thoughts, knowledge, experiences and life adventures with you all.
 I have wondered about what it is that I have to share that is any different from anybody else out there in the ether?  What Will I have to offer? Will it just be the "same old stuff". Guess what? It very well may be....but I hope not!  
However here I am. So let me tell you a little bit about myself.

My name is Jade. I'm a wife and mother of four children....one of which has a "life-limiting condition" (more on that one another time). I trained as a Chartered Physiotherapist many moons ago and through the years have done further studies in my "spare time" on massage therapy, life coaching, and Naturopathic Iridology. You could say that I have a thirst for knowledge on anything to do with health, fitness, nutrition, well being and spirituality. 

The motivation for my studies through the years has been to help my family and disabled daughter and also to try to fix my own declining health (due to caring responsibilities over the last 20 years). Now, I am wanting to share with YOU some of the things I've learned and the things I do to stay sane in this challenging stress-filled world! 

My posts will probably be wildly varied. They may range between my daughter's condition (Edwards Syndrome/Trisomy 18), to problems I've either experienced myself (or have treated in other people)... to things I do to de-stress, be healthy and be creative (like the craft room I'm constructing in my eldest sons old bedroom....he moved out and got married recently!) It may also contain some book reviews, a recipe or two and anything that may take my fancy! There may even be the occasional rant! In general, it may consist of ANYTHING  that I've done or learned to try to create balance in my life and that I think may be of benefit to you.  

So who knows what may appear in front of your eyes? Stay tuned and I hope that you will stick with me along the journey. Ultimately, if this blog gives you a bit more confidence and courage in you trials/challenges and a few ideas to stay strong, be healthy, look to a positive future and feel like you are not alone, it will be worth it.

Hope to see you again real soon.

Jx