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

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.”