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.

Tuesday, October 21, 2014

Bits and pieces

Mommy's sweetest little binky bums

No need for me to tell you just how much we all miss you - I know you are watching over us and see all the sadness and heart break and then the comforting moments cherishing all the memories we got to make with you,  and just having your beautiful face all around us.

Your garden is blooming at such a speed and is looking absolutely beautiful, all the roses are in full bloom and it smells absolutely wonderful. Although we still have a lot of work to do, it is exactly what we wanted. With all the wind that we are having at the moment we are continuously hearing the wind chime in your garden, which sounds just like your favourite giraffe rattle you always played with - both comforting but also very heart breaking to hear. You know sweetpea, I have also attached your giraffe rattle ( the new one you got for your birthday) to my rear view mirror of my car, so that I can hear the chimes whenever I am driving. Daddy thought it may get too much for me, but it has really been a saving grace for me.

The last week has been incredibly difficult for me, many times now I find myself crying and wondering how you are. I know that you are with God and I know that you are whole and looking down on us, but somehow I just need to know, just need to see that you are okay.
My longing for you has been so incredibly intense that I just don't know what to do with myself but cry. I cry when I wake up, I cry when I lay in the bath, I cry on my way to work, at work, on my way home from work ...... I just cry. I feel like I am losing total grip on reality and the strength that I have been holding on to. The sadness has been completely overwhelming.

I know I should be celebrating your life, and I do ..... but I am totally heartbroken. Daddy and your sisters also miss you terribly, A lot of the time I see them just staring into nothingness and I know they are thinking of you.

As I sit here at work today - my tears are flowing even more, out of sadness but also out of comfort, that we were able to help someone in need. You see baby boo, before God came to take you, we had ordered more feeding tubes for you which we did not get to use. Daddy and I donated these tubes to an organization called Rare Diseases South Africa - and these tubes went to a beautiful little four year old boy by the name of Jaydon. There was no guarantee that Jaydon would get these tubes, and I know that there are so many children that need help, but deep within my heart I was hoping that precious little Jaydon would receive them and today we got confirmation that he did. This my sweet angel pie is one more step in keeping your beautiful legacy alive and it makes me proud that we can do this on your behalf.
Love you and miss you so so much
All my love and kisses
Mommy
xxx

Thursday, October 2, 2014

Heaven's special child


Heaven’s special child

A meeting was held far from earth
‘It’s time again for another birth’,
said the angels to the Lord above.
“This special child will need much love.
His progress may seem very slow,
Accomplishment he may not show;
And he’ll require extra care
From folks he meets down there.
He may not run or laugh or play;
His thoughts may seem quite far away.
In many ways he won’t adapt
And he’ll be known as “handicapped”.
So let’s be careful where he’s sent,
We want his life to be content.
Please, Lord, find the parents who
Will do a special job for You.
They will not realize right away
The leading role they’re asked to play.
Comes stronger faith and richer love
And soon they’ll know the privilege given
In caring for this gift from Heaven.
Their precious charge so meek and mild
Is Heaven’s very special child.”
 
Unknown

Wednesday, September 3, 2014

So hard and so lost

My precious baby boy


This week has been so hard and I have been so lost without you. When I get home most nights I walk into the lounge and just rest my hands on your ashes, as if I will get some comfort just being able to touch you, even though its through a beautiful box. My heart is so broken.


My tears just keep flowing and I don't know how to stop them, every second of your last moments keep playing through my mind over and over and over again


Since Saturday  I have been incredibly emotional. I normally don't and never used to shop at Woolies unless I was buying you clothes. Anyway daddy needed to get some stuff and after being there for about ten minutes I felt like I couldn't breath and needed to get out of there - I knew exactly why  L then on Sunday Aunty Ursula told me she had a dream about you. She dreamt she heard laughing in her lounge and when she got up to see what was happening, there you were laughing and playing with bubbles. This is such a beautiful dream and brought me to tears instantly. In my mind I can just picture you doing this because you always were such a happy boy and always content with anything.


So two days of build up and Monday all I did was cry. If I had to try and tell you how I drove to work I wouldn't be able to. Why cant I dream about you, why cant I feel you - I am so lost and heartbroken and everyone else seems to be able to and I cant. I need the comfort to know you are ok.


I love you so so much my baby angel and maybe one day I will learn to live with this but for now, it just hurts too much.


Fly high sweet angel and soar the skies.



Thursday, August 14, 2014

3 Months gone

My precious little Angel

Yesterday was three months since you left us to go be with Jesus and out of all the days since, it has been the most difficult.

I miss you terribly and just wish I could feel your presence like daddy does L

Love you binky bums

Tuesday, July 22, 2014

Just about sums it up

Aah my big boy ....

The days goes by so quick yet seem so long at the same time. Time doesn't seem to be healing, maybe because I have tried to be strong and now it just doesn't feel like I can anymore.

I read something the other day which pretty much sums up how I feel .......

"I have arthritis of the heart and every inch of my soul aches.."

I don't think any other words can explain it better than that and if that doesn't explain it, then nothing ever will. My body physically aches, my heart physically feels like it has been broken into pieces or as if it is pulling so tight all the time. I am continuously tired and seem to cry a lot more.

I guess now and its probably only human, the questions now start and I seem to torment myself;

Was I a good enough mommy to you?
Did I give you everything you ever needed?
Did I cuddle you enough?
Did I love you enough, the way a special needs baby is supposed to be loved and for that matter the way any child is supposed to be loved by a parent?
Did I play with you enough?
Did I keep you comfortable enough?
Did I do enough to keep you pain free?
Did you know that I loved you so much, was I able to make you feel the love?
Did I tell you that I love you enough - even though I would say it out loud and whisper it to you several times a day?
Did I do what God expected me to do when he gave you to me?

And then the biggest question of all, WHY and HOW ... what actually happened that you were taken from us. Were you tired and just couldn't any more? Was your little body poisoned from your colon? Could I have saved you. If only I knew why. So many more questions and I cant seem to answer any of them or find any comfort in anything ..........

Never a second that goes past that I don't think about you.

Love you to the moon and back. Love you more than all the grains of sand in the desert. Love you more than anybody could ever imagine

xxx

Wednesday, July 9, 2014

Still true

If before you were born, I could have gone to heaven and saw all the beautiful souls I still would have chosen you

If God had told me, "This soul would one day need extra care and needs"
I still would have chosen you

If He would have told me, "This soul may make your heart bleed"
I still would have chosen you

If He had told me, "This soul would make you question the depth of your faith"
I still would have chosen you

If He had told me, "This soul would make tears flow from your eyes that could fill a river"
I still would have chosen you

If He had told me, "This soul may one day make you witness overbearing suffering"
I still would have chosen you

If He had told me, "All that you know to be normal would drastically change"
I still would have chosen you

Of course, even though I would have chosen you, I know it was God who chose me for you"

Wednesday, July 2, 2014

Trying to survive

Hello my precious.

These letters seem to be getting harder and harder to write....

People say time heals but it really doesn't. As time goes by it becomes harder and harder to know that you are no longer an earthly angel.

This is the last photo that I got to take of your beautiful face and gorgeous smile - even though you weren't feeling well - I do believe you were smiling at your angels because you weren't facing or looking at me - its as though you were in another world.

This photo captures every essence of your being.

I guess the hardest part is that we don't get to see new pictures of you. I go on to my phone and open up the folder and I still expect to see new photos, and then I realize I will never and this will be the most recent and last one I took.

It breaks my heart baby boy - Daddy and I feel like we are just trying to survive and not doing too well at it.


 
We don't really know how to cope, besides to slap a smile on our faces and pretend to everyone else that everything is ok - well at least that's the impression that everyone seems to get. But in fact we are dying inside and barely surviving.

I love you baby and miss you more than words can ever begin to explain.

I found this the other day and it is pretty much true:

"My Mom Is A Survivor
My Mom is a survivor, or so I've heard it said.
But I hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands on the beach that never wash away...
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others...a smile of disguise.
But through Heaven's door I see tears flowing from her eyes.
My mom tries to cope with death to keep my memory alive.

Author......unknown
 
Forever and for always you loving mum