Sunday, 19 July 2015

Incompatible with life?.........Happy Birthday.... 20 today!

Twenty years ago today we were waiting anxiously... wondering if we would ever get to meet our little Henibean....alive.... as we had been warned by doctors that trisomy 18 (Edwards Syndrome) was incompatible with life.

Today we  have been celebrating Heni's 20th birthday...

We never would have imagined  at the beginning of those 20 years that she would be here right now and that she would still be gracing our lives with her presence.
Today my post is a tribute and a birthday wish to our little Henibean....

I asked each family member what  it is about Heni that they love, and why...... this is what they said :-

Dad: Heni has an incredible ability to love..... not just any love but  pure unconditional love. She is as I would describe as being completely without guile. In the 20 year  that I have had the privilege of being her father I have never seen her react negatively to any human being. I think she must see people as God sees them. She looks past whether someone is smart or dumb, attractive or plain, fat or skinny, well dressed or poorly groomed.... she looks past all the external attributes that everyone else would focus on and pours out such a huge amount of love from the whole of her little body. Years ago I remember walking along a promenade in the south of France. As we were crossing the road a giant of a man  (one that looked like you would not want to meet in a dark alley) looked down at Heni  sitting in her wheelchair - He looked at her with that look that people often give. She  immediately reached out her hand and grabbed his little finger and held on real tight. At first he was surprised, not knowing what to do but then seemed to soften and transformed right there before our eyes. He felt something.... he felt Heni's love.... he ended up  walking down the pavement  with us and her for about five or ten minutes... walking hand in hand beside her whilst she held on to him tightly. He  was just one example out of hundreds, of someone who has "melted" from her pure love..... such is the effect that Heni  can have on people if they stop and are open to it. She truly knows how to love as the Saviour loves and that is her greatest gift.  She has the gift and ability to give love to everybody...  indiscriminately, non judgmentally and unconditionally. What a wonderful talent is that? 

 Daughter number two: I love that Heni is always  so smiley. She always has the most gorgeous smile on her face and looks like what I can only describe as an angel. Some of my most  precious  and memorable times with her have been when I have  spent time cuddling together on our old  trampoline.
Big brother:  One thing that I  love about Heni is  that it doesn't seem to matter what her day has been like... she could have had a bad day ....but as soon as she sees  you she instantly lights up, smiles and loves you unconditionally. She makes everyone feel loved.... including me. Recently I really enjoyed some time that we spent together as a family in the paddling pool in the garden. Heni got in to the water and realised that I was there and started splashing me...she was having a blast..... splashing water everywhere, smiling and hugging me and being cheeky. It's sometimes easy for other people to forget that she is so smart and so knowing and has such a fun loving special little personality.  

Sister in law Hannah: Heni has an ability to instantly make you feel loved. Her cheeky yet innocent nature is one of my favourite traits. She just has a wonderful sense of humour with an infectious laugh that brightens the most gloomy of days. The usual greeting from Heni is a slobbery kiss/ bite, a big grin or a good strong tug on your hair but she instinctively knows when it has been a hard day and will just wrap you in her arms, stroke your head and look you straight in the eye with a kind and reassuring smile. I trust Heni with all my secrets not because she can't tell anyone else but because she is the kindest, most forgiving and unjudgmental person I know. She is just the best.

 The hungry boy:- .... I like how cheeky Heni  can be and how she can make people laugh....  and  she can also be annoying! ( the answer that you expect from a 12 year old!!) 

 Honorary big sister Gemma: The first time I met Heni, she was a lot smaller but still had the most wonderful smile that we all know and love today. 
I love the way she helps you in small ways like holding her back up when yo are trying to get her changed or giving you her foot or hand as if to say; "Massage me please?"
Sometimes when she's been on the phone to either mum or dad-  she listens, smiles and then does not wind them up! I think it's incredibly cheeky... but still love it....I know it's true love because who else would I let pull my hair, pinch my arm and bite my face and still come back for more? No one! 
There was once a time when Heni could commando crawl and romp around on the floor a little more than she does today. I was laying on my back next to her and she managed to get my head so she could see me. She laughed, burped and had a little re-flux that came out... and was sick all over me - gross! I asked if she did that on purpose and she laughed and did her body-nod ..her way of saying yes! The cheek!  So Like I said true love- because even though she was sick on purpose- forgiveness is instant. You cant help but love her. 

Mum: Heni is a truly amazing person. As everyone has already said she has the most wonderful ability to make you feel like you are the most special person who has ever existed. Heni loves being with and interacting  with people and would rather have a person in front of her than a toy.... any day (who wouldn't?).  You can have the worst of days and as soon as she  smiles at you or hugs you ...everything can just melt away (even if she has been the cause of the frustration!  

 Today, on Heni's birthday, we went to church as usual ... while we were there we listened to a beautiful musical item  called "I stand all amazed":-

I stand all amazed
That the love Jesus offers me
Confused at the grace
That so fully He proffers me
I tremble to know that
for me He was crucified
That for me, a sinner,
He suffered, He bled and died

Oh, it is wonderful that
He should care for me
enough to die for me
Oh, it is wonderful
Wonderful to me

I marvel that He would
descend from His throne divine
To rescue a soul
so rebellious and proud as mine
That he should extend
His great love unto such as I
Sufficient to own,
to redeem and to justify

Oh, it is wonderful
that He should care for me
enough to die for me
Oh, it is wonderful
Wonderful to me

I think of his hands,
pierced and bleeding
to pay the debt
Such mercy, such love
and devotion can I forget?
No, no, I will praise
and adore at the mercy seat
Until at the glorified
throne I kneel at His feet

Oh, it is wonderful
that he should care for me
enough to die for me
Oh, it is wonderful
Wonderful to me

 As I sit  quietly in church on a Sunday one of the things I love to do is to massage Heni's hands and think of  Christ .... "I think of his hands pierced and bleeding to pay the debt" and massage the  tiny indentation that she has on one  of her hands.... I have no idea why it is there.... other than to be a constant reminder to me to try to become more like my Saviour every day and remind me of  the love Jesus offers me.... through her. Heni is a constant reminder for me to try to love as He would love.

I often get the impression that she has a very old/wise spirit in such a frail little body. She knows more than she can say, understands more than people think and has the patience and endurance of a saint. She is patient with my faults, gracious when I make mistakes and she loves me no matter what. When I am with  Heni, being wrapped in her arms,   It is the closest feeling that I can have on this earth to being wrapped about in the arms of my Saviour. She teaches me so much and I am forever grateful for the  precious gift she is to me and my family... how  very blessed we are to have her in our lives. 

We love you Heni. Happy 20th birthday!


If you would like to read:- Heni's story part 1 click here
                                        Heni's story part 2 click here
                                        Heni's story part 3 click here


  1. Happy 20th, Heni! Spread the love.

  2. Happy birthday, dear Heni! Thanks for inviting readers to the party via the Tuesday special needs link up!

  3. Happy birthday

  4. My sister also has trisomy 18 and will be 21 this year in December. I often think about my sister when we sing I Stand All Amazed at church. Happy birthday to your amazing gal!

  5. Happy Birthday Heni! You are truly a beautiful and perfect soul!

    My daughter, Katy, would be 23 this year but her Trisomy 18 was truly incompatible with life. Your beautiful life brings me comfort as I see what my beautiful daughter's life might have been like if just a couple of things would have been in her favor. I can now have a smile to associate with what my Katy through Heni. Thank you so much for sharing Heni's spirit with us. She is proof that there are angels among us!

  6. Happy belated Birthday Heni! May your spirit continue to enrich those lucky enough to encounter you! #purelove

  7. Happy birthday heni x

  8. Hi Henibean's family. We wanted to let you know that there are many more birthday messages on the Trisomy 18 Foundation's Facebook page where we shared your sweet girl's wonderful birthday milestone. She is touching a lot of hearts -- the post has reached over 63,000 people so far and still going. Come read all the beautiful sentiments at

  9. Happy 20th Birthday Sweet Girl! Love your story, Love to you! From a very proud Nana to Baby Lukas who passed in 2011 just before we got to meet in in the 41st week of pregnancy! You are amazing! <3

  10. Jade you have done/are doing a fantastic job!! That is one happy, beautiful Henibean! x

  11. What a beautiful tribute to your daughter! God bless you!


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