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.

Friday, April 8, 2011

And reality sets in ........ in a big way

  Although it is always at the back of our minds, as hard as we try and keep it at bay - today, this moment, reality has set in .....  in a big way. 

I have been reading a blog which Little Nolan's  mommy has written (Nolan was also a full T18 baby) - "Life after loss" - I am sitting here and cannot contain myself, the tears are flowing  and I seem unable to stop them.  Little Nolan passed on not so long ago and his mother is doing so well but desperately missing her little boy and trying to go through the grieving process

I know that someday I will be feeling and going through the same motions - and I am only hoping that it wont be any time soon. I am sitting here and my chest is closing in, as if my heart is already broken and in need of mending. I feel like I can't breath and like everything is spinning out of control.

I keep thinking will our little angel go peacefully, will we be with him when his time comes, will I be able to hold him and make him feel safe and loved, will we be able to whisper our goodbyes and be able to be strong for each other, will I be able to comfort the girls when they will need me most. Will I have made an impact on Lior's life and been the mommy that he wanted and needed and that God intended him to have .......... I know that God has sent him to us for a reason, I know he is "on loan" and  I know it selfish but I am so desperate to hold on tight, I dont want Lior to be "on loan" - I want him to be mine to always be here - forever - I fear I am not strong enough.

I know he is still with us and I know it seems strange to some  - "mourning a child that is still here" - but I am not mourning Lior, I am mourning what is to come, I am mourning the future, a future that I dont want. 

Although we have learnt to "live in the now", live for every second of every day, we are still human and cannot keep these feelings at bay. Dont get me wrong, I love and cherish my little angel, but now I ask WHY .... why has God put us through this - Why does he feel I am strong enough to do this  !! What is his plan for me.
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4 comments:

  1. Taryn van RensburgApril 9, 2011 at 8:59 PM

    There is no question in my mind that "living for today" is the right thing.... but I so understand what you feel. The prognosis is what it is, right? And while we want to hope... sometimes the reality just is what it is.
    My feeling is that when you have those moments of despair, and sorry, and and and... well, feel that emotion. It's real... and so long as you don't live in tomorrow, and only visit on occasion, I think it's a healthy way of dealing with this mountain you're climbing.
    I always say that, well, I love MIkayla so much, and I simply cannot imagine my life without her. But from time to time, I feel like I have to... perhaps to prepare myself? And that feels awful, like I am somehow giving up on her.... but you're right... we're human!
    One thing I can say with absolute certainty: you are the most wonderful, amazing, perfect mother for little Lior. You have given him SO much. You should be proud of yourself.
    I think, when you reach the gates of Heaven, God will say "Welcome, my good and faithful servant". And the blessing and hope we have is that no matter what trials and tribulations we have to bear here on this earth... one day, we'll all be whole, and perfect in Heaven... and together... and I like to think our special little babies will be waiting with arms outstretched, and with a smile on their faces... and one day, my Mikayla will throw her arms around my neck, and say "I love you, Mommy!"
    You're a wonderful mother. Lior is a lucky little chap. And tomorrow... well, tomorrow is another day. You have enough to worry about for today, right :)
    Sending you hugs xxx

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  2. LiorApril 11, 2011 at 2:41 PM

    thanks so much for the kind words and motivation, lifted me up - hit a bit of a downer and felt really negative, but all good now after a fabulous weekend with my family.

    Sending you hugs too, goodness knows we need them :)

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  3. KulaniApril 28, 2011 at 10:23 AM

    Cherish each and every moment with him,do not think of what is to come cause it will steal your joy and peace.God blessed you with this handsome lil man for a reason and as loaned as he is,he is still your pride and joy.I gave birth to a sleeping child and at times I wish I had the opportunity to say bye-bye but you have the opportunity to feed him,bath him,change diapers etc,you are highly favoured by God.my blog is http://vutshamo.blogspot.com....It takes a courages woman to pen down all the journey of life.

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  4. LiorApril 28, 2011 at 1:19 PM

    I am so sorry for your loss, I cant even begin to imagine. Thank you for your encouraging words, it means a great deal. I will definately be reading your blog

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