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.

Wednesday, August 26, 2015

Another goodbye

Hello my precious sweetpea

Its been a while since mommy has been here - its just been too hard for me but today I needed to come here.  Yet again tragedy has struck our family and our hearts are broken. On Thursday your uncle Kevin went to heaven - as was with you it was totally unexpected - we are all so devastated.

Although we know you were there to welcome Kev with open arms and that the two of you will look after each other and no doubt get up to mischief - we are not quite sure how to cope, especially daddy. Within a space of a little more than a year he has lost two people that have meant more than the world to him. Kev is daddy's brother, best friend and the only person that he really opened up to when it came to talking about his feelings and emotions. Today Daddy, Ouma, and your aunt and uncles had to say their final goodbyes.  They had a small ceremony and celebrated his life with wreaths of flowers in the ocean. I am sure you are both looking down on them and saying well done because that is exactly what Kev would have wanted. As with you, uncle Kevin was cremated and everyone has decided that when they get home, his ashes need to be placed next to yours.

This is so hard, we aren't even anywhere near coming close to terms with having lost you, and now this. We need help big boy, we need help to get through this - I just don't see how we are going to manage - especially daddy.

We love and miss you so so much

All my love

Tuesday, May 19, 2015

Emotional few weeks

Hello my precious little binky bums

Its been a while since I last wrote - It just seems to get more difficult as time goes by and the last three weeks have been especially difficult. There have just been so many special dates to get through - first was your birthday on 29 April - your first birthday up in heaven and our first without you. Daddy and I took the day off work and just spent time together and in the evening, when it was nice and dark, as a family we released some lovely lanterns in your memory. Something simple but something special for our little light.

Then on 3 May was your sister Toni's birthday and I found myself a little more emotional and a little more difficult to get through the day, as has been every day, but with the build up of all the anniversaries it just became harder.

Sunday 10 May was mother's day and my first without you as well - a heartbreaking day to say the least. The fact that I couldn't have all my babies with me is something my heart will never be able to understand. And then the worst of all came on 13 May, my birthday, a day that my heart will no longer know "how" to feel -  the day that marks 1 year since you gained your wings - the day you stopped breathing but your heart was still beating - the day mommy and daddy whispered to you that if God has you in his arms and you are happy then its time to go and that we would understand - the day, that the second after we said those words, you took comfort in them and your heart stopped beating and you went back home. I know I said mommy and daddy will be okay, but sometimes I just don't think I will be, but I am told that one day I will okay - I just don't know. But the one thing I do know is  that my heart will  most definitely NEVER recover.

And then there's today - your oldest sister's birthday, but also the day that daddy and I had a private moment with you and saw and kissed you for the very last time - the day that we had to say our final goodbyes. The day that we mourned yet celebrated your life with everyone that your little light touched - the day that so many wanted to be there but couldn't be amongst the many that were.

We miss you so much my baby, so much that our hearts ache every second of every day. I wish I could just have one more moment with you - just to know that you are happy and whole.

Love you more than all the grains of sand in the desert - to the moon  and back plus infinity <3

Thursday, March 19, 2015


Lent this from another mommy's blog

When you live in a world where someone has told you your child is dying, you start preparing for someday. Someday, you'll have to decide that even though a surgery is needed, it is just too dangerous to go through with. Someday you'll have to decide when to stop trying to fix problems and to just provide as much comfort as you can. Someday you'll have to decide when treatments aren't working anymore anyway, so it is time to go ahead and stop them. Someday you'll have to decide when to sign papers that give medical staff permission to let your child stop breathing and their heart stop beating. Someday you'll have to make funeral plans for your baby. Someday you'll have to say goodbye.

Someday is never actually supposed to happen. - Carolyn Marie

But someday happened to us and we had t o say goodbye. We are heartbroken and the pain is indescribable  and the hurt and longing is ubearable

Friday, February 13, 2015

9 months and forever gone

My sweet precious little angel

Today marks 9 months that you grew your angel wings and I am trying my utmost to be strong and failing miserably.

I miss you so so much, Daddy and your sisters miss you so so much

I now realize that the loving and longing will NEVER go away.

Love you sweet pea !!

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 .