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, January 20, 2015

Quiet and Empty Christmas

My precious baby angel.

It has taken me sometime to be able to sit down and write this, with the festive season and so many families celebrating I have found it difficult to be without you and as the time goes on it just seems to get harder.

Christmas day was a very quiet and empty day for us, it was the first one that we have not had with you ....... well without your physical little body. We know in spirit you are always with us, but it still doesn't make it any easier. It was so hard knowing that there wasn't a little present under the tree for you to rip open, even though you never really new, but just the joy of you holding onto the paper and thrashing it about, was a sight for sore eyes, and now ..... now I don't get to see that any more.
I don't get to dress you up as a little Santa and take photos. I don't get to kiss and cuddle you and see you face with all the excitement that goes on around you. I miss you trying to stick your fingers in my mouth and trying to pull my hair. I miss you sisters playing with you and swinging you back and me telling them enough now, but knowing that you loved every minute of it because you would throw yourself back just to go some more or swing your arms back in the air to say again ..... again.
I miss "fighting" with you because you kept pushing your food up and sprouting it out your feeding tube just to have the food all over me. I miss you throwing yourself back in the bath just to have your head in the water.  I miss trying to keep you still after your bath so I can dry you and dress you. I miss EVERYTHING, EVERTHING, the great and the not so great.  I miss having you close to me or just knowing that you are close by.

Daddy was so brave my big boy, he promised you that he would face his fears, I mean every day you fought for your life and every day you were happy and smiley and brought so much joy to everyone who met you. You see, daddy is petrified of heights and he decided that he would fulfill his promise to you in December and decided to "jump" the Oribi Gorge. Aah my boy, it was very hard for daddy but he did it - it is the highest jump/swing in the world and your daddy did it. I am so so proud of him, although the whole way, from the beginning right to the end I was crying, I guess out of fear, memories,  sentimental value, and being proud ....... Its strange how things work out, because the day daddy jumped, happened to be the 29th, and you were born on 29 April, this was not planned .... oh how I wish you could have been there to see it.

A little while ago daddy and I decided that after the jump we would spread you ashes, but when it came to it, I just couldn't do it. Daddy was very understanding and told me when I am ready is when we do it. I thought I was but I guess I have been hiding it very well from everyone, I am just no where near ready and somehow don't think I every will be. Everyone says happy new year, I hope its a great one - how can it be a great one - I don't have you with me

I know some people think I go on and on and probably say just get over it ..... but please tell me, how do you ever get over losing your child. I just don't understand it, my heart is so sad yet so angry, I have been a good mom to you and your sisters, I have been good "mom" to my step daughters, where did I go wrong, why did I have to lose my baby boy .....


Tuesday, January 13, 2015

8 months gone

My precious baby angel.

Today marks 8 months that you are no longer with us. Everyone keeps telling me time heals ...... it doesn't. My heart aches for you every second of every single day .