Letters to Lior

Trsiomy 18


There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. Trisomy 18 occurs in 1 in 3,000 live births.It is three times more common in girls than boys. Unfortunately, most babies with Trisomy 18 die before birth, so the actual incidence of the disorder may be higher.Infants who survive, experience serious defects and commonly live for short periods of time. Trisomy 18 affects individuals of all ethnic backgrounds. Trisomy 18 severely affects all organ systems of the body.The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.

Thursday, October 19, 2017

Our final goodbye

My beautiful baby boy

So much that we have been through in the last few years, some not so great, but some wonderful too.
I haven't been here in a while, grampa was really very ill and had to have two brain surgeries so that's pretty much where our focus has been for the last few months, but fortunately he has made it through and well on his way to recovery (a long road ahead but recovering).

Daddy and I went away for a few days (first time ever that we have been alone) and we decided that it would be the right time to release your ashes. We did this on 3 October in Amanzimtoti. My heart broke when I opened the little box just to find a small zippy bag with white powder. Im not sure what I was expecting  - obviously a lot more :(

Anyway daddy and I climbed the rocks and got in as far as we could and released your ashes into the sea. It has taken us a little longer than three years to set you free, but it is done now.

So for now, we will cherish all the memories, joy and unconditional love you brought into our lives ....... until we meet again.

Love you my with all my heart angel boy

Tuesday, August 15, 2017

Did I ?

Aaah my precious - so much in my thoughts and my heart today .... just like very other day.

Today my mind leads to something I sent in 2012 ........ My promise to you, daddy and your sisters and I cant help wonder ....

I promise to be the best I can be and to give all I can give  - did I give my all - did I give you everything of my being
I promise to be strong for you when times are tough - was I strong when times were tough, was I brave when I needed to be, was I strong enough to comfort you
I promise to give in and allow you to comfort me when I need it - did I give in and take the comfort when I needed it most
I promise to listen to your inner most feelings however you express them - did I listen to you ..... really listen to you .... could I have listened more and picked up more .... could I have known ....
I promise to be brave for for you and for me - was I brave enough for the both of us, in fact for all of us
I promise to keep God in our lives - did I keep him in our lives enough
I promise to try and keep the humour when times are tough - did I try smile and stay positive  in tough times, did I try and make it easier for you and for all of us
I promise to cry with you when you need me to - did I cry enough ..... what is enough
I promise to take every opprotunity in guiding you on the right path wherever I can through loving discipline -a miracle angel who changed my life in every way - you my loving child, disciplined mommy ...
I promise to support you in every way possible - did I do enough, was I enough ... could never have been enough
I promise to love you unconditionally - was my love unconditional, could I have loved more, could I have shown you my love any more, ....
I promise to always keep you in my heart - was and forever will be in my heart for all eternity
I promise to lead by example - was I and am I the right  example to you and your sisters
I promise to allow you to make your own mistakes and learn from them - have your sisters learnt, have I taught them what I needed to, have I guided them in the way  a mother should, the best way I can
I promise to comfort you when you need comforting - did I comfort you enough when you were happy and when you were sick, did I comfort and love you enough the day you took your last breath in my arms and your heart stopped beating
I promise to get right back up when I fall down - I'm too scared to fall down because in know if I do, I will never get back up -  ....... a promise I cant keep
I promise to pick you up an carry you when you fall down - have I picked your sisters up when they needed me to
I promise to let your light shine through - did I let your light shine enough for the world to see
I promise to advocate for you in everything that you are and in everything that you do - did I advocate your life, your love, and your being as I should have
I PROMISE TO BE EVERYTHING I CAN BE FOR YOU AND FOR ME - was I everything for both you and me , but most importantly was I enough for you. Was I what God intended me to be when he gave me your precious soul ...

So many questions, so many unanswered.
Love you and miss you my binky bums.

All my love for all eternity - Mommy

Friday, May 19, 2017

Last Kiss

My Angel boy


My heart aches terribly today, I miss you so so much. Today its three years since I last gave you a kiss. My heart shattered into zillions of pieces, saying goodbye to you and kissing your cold lips as my tears streamed down on to your face,  has destroyed me in a way nothing else could.

I just wanted to take you out your precious little coffin and hold you once more, but I couldn't. Instead Daddy and I placed your favourite toys and our letters beside you and hoped that this would be enough and a few hours later I watched all the balloons - one for every day of your life - float away and drift high into the sky - our final goodbye.

What I would give just to hold you one more time.

Love you big boy

Lots of Love
Mommy



Monday, May 15, 2017

3 years and two days

My precious angel

I woke up on Saturday morning knowing that its three years since I last held you and felt your touch, three years since your heart was beating next to mine and then beat no more. It was a hard day but somehow we have learnt to get through the difficult days. Time does not heal, we have just learned to deal with it with out showing it.

A few weeks ago daddy and I decided to go to the movies and watch "The shack". Now if anyone has seen this movie or read this book and lost a child, they will know exactly what emotions ran through me. Now I have never been able to physically feel your presence like daddy does but somehow you knew you needed me to know that you were with us. Through the adverts .....nothing, the beginning of the movie ...... nothing, but when my emotions were unbelievably strong, there it was, the only way you could get my attention.

Now because of your feeding tube and the valve in your tummy not closing, after most of your feeds you would bring up and its a smell that is very distinctive and one that I could easily associate with you, if you wanted me to .... and that is exactly what you did.

So to carry on, from the time I started crying watching this movie, I could smell it, right up to the end of the movie and then, when the credits started rolling, ..... nothing. As suddenly as it came, it was gone.

I always ask you to somehow let me know when you are near and I guess you knew I would need that comfort whilst watching this movie - so so so close to home.

Thank you my angel boy. Love you to the moon and back

Till we meet again

Tuesday, May 2, 2017

7 years old :)

My precious little angel

So you are 7 years old now :) and we wish so much that we could have spent your birthday (and every other day) with you.

As your sister says, you should have been starting school this year (even if it was a special school) and we sincerely believe that everything that you should have been doing on this earth, you are now doing up in heaven. I like to picture you running freely and laughing, because boy did you love laughing and shouting and make noise like normal little boys do. Shout shout shout big boy, make a noise big boy, play and be merry my angel and know that we love and miss you more each day.

HAPPY 7th BIRTHDAY my binky bums.

All my love and kisses - till we meet again

Love mommy <3

Wednesday, February 1, 2017

Another step forward and giving

My precious precious angel boy

Another Christmas and new year with out you here by our side - never gets any easier. In fact this one was just a little harder but at the same time a very "heart warming" one too.

Daddy and I plucked up the courage to go and visit a home for abandoned children - well abandoned babies really - and once we were there we knew straight away that The Door of Hope was where your things needed to be. We walked in and saw straight away that the children are well cared for and the material things are looked after especially with so many babies. We left and my heart felt ..... well I guess I can say my heart felt sure that this was the right place.

That evening daddy and I had a difficult task ahead of us. We unpacked all of your "Crates" and had to go through each and every little thing and decide what is was that we want to keep and what we would like to bless other children with - I still wanted to keep everything !! -  it was incredibly heart wrenching, but we made it, we sorted through everything and kept what our hearts could not part with and set the other stuff aside.

On Sunday morning we delivered everything to the home - your cot, pram, jumpers, walking rings clothes and lots of toys. Daddy and I know that these babies will be so blessed to be able to use these - it warms our hearts so much to know that we could bless others the way that we were and are blessed to have you and the way that others were always helping and blessing us - its our turn now - as heart sore as it is.

I still have your chest drawers next our bed, with all your clothes and blankets that we used on a daily basis - I wasn't able to go through those, that will take a little more time, but I have plans for those and once I am there, I will tell you all about it.

Love you and Miss you terribly my little monkey, binky bums.

Lots of love
Mommy

Monday, October 31, 2016

On my mind so much

Mommy's little "binky bums"

You have been on my mind so much lately - you always are - but more so than normal. Mommy is missing and longing for you so much my angel - I just don't know if it will ever get easier. I have been spending a lot of time in your garden and it really is looking gorgeous - and the only thing it can be is yours' and uncle Kev's help - cause you no mommy is normally a plant killer :) but your garden is oh so gorgeous, just as you are.

Love you and miss you terribly my precious little binky bums.