Friday, 19 February 2016

Heni's Story - Part 4


I love the photo of Heni above in which she looks like she is playing the harp! It was taken when we celebrated her 8th birthday...almost 13 years ago. We had a garden party, food, friends in fun hats, a balloon release and even a harpist, who played us beautiful music to chill out to... and we were even favoured with fantastic weather. It was one of those times where you "mark the occasion"....making something memorable happen... a memory to look back on with fondness.
Because of Heni's diagnosis of Edwards Syndrome we have never really known how long she would be around; we have experienced multiple roller coaster rides where she (and we) hit the bottom and thought that it was the end of the ride....and we never ever expected that she would still be there with us back then at the party. 
.....Even now all these years later, I never expected to be sitting here writing about her while she is fast asleep (having her routine afternoon nap after college)....AND In just five more months will hopefully be celebrating her 21st birthday!


 So what can I tell any parents out there (of other Edwards babies who are still with us)  about these past almost 21 years? 
I think I would begin by telling you to prepare for the worst...... and then prepare and hope for the best...... prepare to have your heart melt inside you and prepare to become a completely different person. Prepare to be tried to your utmost and prepare to feel a love beyond measure.... but most importantly.....I would say prepare  yourself to be SURPRISED!

 When Heni was such a sickly baby it was hard to envisage any future at all and we never expected her to be able to do a lot of the things that she has ended up doing over the years....

We never expected her to be able to go outside and enjoy feeling snow flakes on her face.... but she did...


We never expected that sickly baby to be able to go out on bike rides.... but she did...




 We never expected  her to go on holidays and enjoy riding a pony.... but she did.....


 We never expected that sickly baby to become the fab flyer and travel to Europe and America a number of times... but she did...

We never expected her to love all the normal things that our other kids do.... but she did....


We never expected her to eat food (as tube feeding seemed to be the norm for Edwards kids)... but she did....


We never expected her to travel the seas and get stranded on a boat in a thunderstorm... but she did!


We never expected her to be the culprit at the airport and get frisked... but she was!


 We never expected her to love going to school and doing fun activities... but she did...


We never expected her to steal Red vines off the table and eat them when we were not looking...but she did....

 


We never expected her to love the beach and be such a sun bunny but she does.... 


.... and we never expected her to love going out on lovely crisp autumn days for family walks... but she does....

There have been many unexpected things along the journey that have not been quite as enjoyable and there are many things that she (and we) still can't do.... or can't do any more.....  but  when I look back in time, we have certainly been amazed and awestruck by the many many lovely unexpected things that she has been able to do over the years (including sitting by herself and walking in a walker). 

Among all the things we have experienced together we  most certainly have been SURPRISED....and GRATEFUL to have experienced so many things along with her.
So prepare yourselves for the worst... hope for the best...go on the journey of transformation and know what it feels like to have your heart melt.  Know that you are strong enough for the trial and deserve to be loved beyond measure.... and I hope that you will be blessed to have as many SURPRISES  as we have along the way!

Jx


If you would like to know more about Heni you can read
Heni's story part 1 here
Heni's story part 2 here
Heni's story part 3 here
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26 comments:

  1. Unknown19 February 2016 at 01:53

    And Heni certainly loves the twinkle of Christmas lights. It's the twinkle in her eyes when Daddy walks in the room that melted my heart Jade. What wonderful parents you and Tom are, much love H xx

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  2. jadebie19 February 2016 at 06:43

    Yes she does! And she does so love her Daddy. Hope all is well with you and yours H! Xx

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  3. Emily23 February 2016 at 05:43

    What a blessing to have the opportunity to make so many great memories! It sure looks like she is enjoying herself. :)

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  4. jadebie23 February 2016 at 05:47

    Yes Emily, She is normally a very happy bunny. .... Unless she is bored or tired or ill
    Thanks for stopping by.

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  5. The Forever Joyful Homeschool23 February 2016 at 13:46

    I'm sure your journey has been rough and emotional. I love how you're real in your post but constantly pointing to the positive. Blessings to you and thanks for participating in the #LMMLinkup.

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  6. Lux G.23 February 2016 at 22:58

    Such heartwarming story and photos. So much love visible in those smiles.
    Thank you for sharing this inspiration.

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  7. Anonymous24 February 2016 at 08:01

    Thanks so much for adding this to Faith 'n Friends Blog Hop. I love the pictures of your beautiful daughter and all of the wonderful memories you have been able to make. Blessings to you all!

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    1. jadebie25 February 2016 at 02:35

      I'm glad that she's been able to do these things. I wish she could do much more but I'm grateful for what we have.

      Delete
  8. Unknown24 February 2016 at 10:00

    Beautiful reflections, thank you for sharing them on the #RaRaLinkup. Love to you and your family. My brother has Down Syndrome and I am so blessed to be his sis. :-)

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    1. jadebie25 February 2016 at 02:36

      I think these kids give so much back in love and light! Thanks for reading x

      Delete
  9. Renee24 February 2016 at 11:33

    Oh, sweet Heni...what a beautiful story...Tears here as I give thanks for His love and goodness for us all. Your story is so powerful and a blessing for me today. I am so thankful I stopped by today to read it.

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    1. Jade from Henibean20 April 2016 at 09:24

      Thank you for coming to read about Heni. I hope you have a blessed day.

      Delete
  10. elizabeth24 February 2016 at 12:35

    I love seeing God's grace at work in your girl and in you as you praise God for the daily miracles He gives you.

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    1. jadebie26 February 2016 at 02:45

      I hope and pray that I will be always able to see them x

      Delete
  11. caryjo24 February 2016 at 14:32

    The photos, etc., made me smile. She looks a lot like one of my granddaughters. Life continues in many ways and many places. Thank you MUCH!!

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    1. jadebie25 February 2016 at 02:39

      Im glad that they put a smile on your face. I always feel like smiling when Heni does her smiles too!

      Delete
  12. Jolene Philo24 February 2016 at 16:48

    What a full life you have shared with Heni. Thank you for adding this post to the DifferentDream.com link share. These pictures will make so many people smile.

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    1. jadebie25 February 2016 at 02:41

      Thank you for hosting Jolene. It enables Henibean to reach further and I hope in some small way these posts can be of benefit to some people.

      Delete
  13. Anonymous25 February 2016 at 03:54

    What a precious girl you have there! And what a blessing it looks like the last 21 years have been, despite the difficulties. Thank you for sharing your story at Testimony Tuesday.

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    1. Jade from Henibean28 February 2016 at 09:55

      Thanks Hazel. It's always great to come visit Testimony Tuesday!

      Delete
  14. Michelle25 February 2016 at 19:23

    Tears here! As a mother of a special needs child this whole post hits home! My 24 year old daughter, in the next room is a "never expected" child grown into a lovely young woman too. How they change us. This is one post I won't be forgetting anytime soon. You are a wonderful mother who has been given a gift. Thank you for bringing this to Party at My Place today and sharing it with others.

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    1. Jade from Henibean28 February 2016 at 09:59

      Thanks for stopping by Michelle. I hope and pray that you and your daughter will be blessed and strengthened x

      Delete
  15. a joyful noise26 February 2016 at 18:43

    Your review of all the things you never expected Heni to do, BUT she did them, with your help and encouragement. I loved the photos. Happy Birthday Heni. Thank you for sharing with us here at Tell me a True Story.

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    1. Jade from Henibean28 February 2016 at 10:02

      I hope she will be able to do many more things too X
      Thanks for dropping in.

      Delete
  16. JenniferSaake.blogspot.com19 April 2016 at 14:34

    Thank you for sharing Heni's (and your) beautiful story. I came here via the http://purposefulfaith.com/ link up and am so glad I did! I am a pregnancy/infant loss support ministry director, and sadly, every T18 baby I have been involved with has died before or shortly after birth. (I knew of one family who kept their miracle until age 4.) Before Heni, I thought this condition was 100% fatal within a short time. Your family is a blessing. Thank you!

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  17. Jade from Henibean20 April 2016 at 09:23

    Jennifer. You are so very welcome. I hope that others can find strength, courage and hope through Henis story. And if you ever meet any more t18 families please tell them that there is a whole community of us out here. Thank you so much for your kind words. Hope to see you again. X

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