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, 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