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.

Monday, May 26, 2014

My little lion's final roar



Oh baby boy, where does mommy even begin. My heart, our hearts are forever broken and it feels like life will never go on again !! I miss you so much and my arms feel so empty. I yearn every second of the day just to be able to see you, feel you and hear you. My heart aches just to have one more cuddle, to hear one last giggle, to be able to feel my skin against yours and to give you one more kiss, and just to feel your fighting spirit.

You grew your angel wings on Tuesday 13 May 2014

Your daddy and your sisters are missing you so much as well. Tia cries for you constantly and the rest of your sisters, well, they are quiet and I know they are dealing with losing you in you in their own way and the storm is yet to come.

I worry about daddy, because daddy being daddy, he feels he needs to be strong for everyone. I see his tears coming and he always pulls them back. I keep telling him that its your turn to look after us now, but as you know daddy, he insists.

The house is incredibly quiet, for a little boy who was supposed to know nothing and do nothing, you were very loud and boisterous. Always competing with the tv or the radio and between you and your sisters as to who could shout the loudest. The shouting with daddy and both of you competing with each other and the laughter that came afterwards .....

The worst part is when we go to bed at night, I realize now, the steady sound of your breathing always made sleeping easier for us - and now there is this deafening silence and sleep just never seems to come, no matter how tired we are. Even Whiskers (the cat) refuses to climb out your cot - and she always knew it was out of bounds for her.

I know your last days weren't the easiest for you baby boy and I can only hope that we kept you comfortable and loved you as much as you needed and even more and that you could feel that love.

I know everything happens for a reason . The hospital you were in when you grew your wings was one of the most beautiful we could have ever asked for. There was a magnificent rose garden just outside your window and I imagine that you walked through that garden because your little legs finally allowed you to - because you are whole now. No more T18 and no more pain.

My angel, our heavenly angel, the world's little lion, you gave us one final roar and although we have been the only ones to hear it, the world will never stop feeling its tremor for many many years to come. Your little light has and will always shine incredibly bright.

Love you and miss you incredibly my little pumpkin
 

3 comments:

  1. My sincere sympathy. I met you all in hospital, yes me with the little red head girl, and have always followed up on your precious little boy. Today I am totally heartbroken. I will always remember Lior and will miss reading up on him. It was like the highlight of my life when I saw a new post. Rest in peace my dear little fighter..... Love ... The De Oliveira Familia

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  2. I am truly thankful to have seen and heard Liors beautiful story through your blog. He will be remembered always as a handsome strong brave little boy. I am sorry and am thinking of you and your family. Thank you for sharing his wonderful life.

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  3. My heart goes out to your family with the loss of your beautiful Angel son. Thank you for sharing you families life stories with us, and may your son rest in peace. I have been reading this blog for a few years now, and I was extrememly saddened to read of his last roar. Once again, thank you for sharing your beautiful son with us.

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