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.

Thursday, June 28, 2012

To know the value of time

Today it is a great privilege and a wondrous miracle that I get to say GOOD MORNING MY PRECIOUS PRECIOUS LITTLE ANGEL !!!

I say this because once again on Friday we were reminded of the value of time, the value of a minute if not seconds and the wonderful miraculous work of our Heavenly Father.

I was at work and daddy was fetching your sisters from school. Daddy phoned me to ask me to phone home and see if everything was okay. He had been trying to phone but couldn’t get through and he knew something wasn’t right. I phoned home and everyone was hysterical. You had a severe and violent seizure and you stopped breathing. Even if oxygen was applied it would not have helped ….. your airways were closed. Your Ouma and Oupa did really well …. they rushed you to your paediatrician, had they taken you to the ER you wouldn’t be here with us today. By the time they got you to the doctor you were completely limp, non responsive and had been without oxygen for 3 -4 minutes.

 Somehow adrenaline kicked in, for a few seconds at least and I managed to stay calm but then my heart dropped straight to the floor and I fell to pieces.

I had to get to you  …..  as fast as humanly possible. Every thought possible was going through my mind. My worst fears were right in front of my face. The thought of not being able to say goodbye, that I couldn’t hold you and  cuddle you and whisper in your ear how much I love you and that as hard as it will be, if it is your time to be embraced by God’s warm and loving arms, we will accept this and one day we will be okay. That I wouldn’t be there when you needed me the most and that you would think that I had abandoned you in your time of need. That mommy wasn’t there to keep you warm and reassure you and comfort you. That I wouldn’t be able to kiss your sweet little lips or smell your hair or feel your little hand grasp my finger or feel you nuzzle into my neck one last time.

Many people cant understand why you were “resuscitated” and I feel the need to let them know. Daddy and I have prayed and asked for guidance and we have agreed (not without discussing with you of course) that should your heart STOP beating we will not try to bring you back – then it is yours and God’s will. But should you stop breathing and your heart IS STILL beating …. we will assist you to open your airways and help you breath as far as we can.
                                                                                                                                       
Friday was the closest it has ever been, but your heart was still beating. When we took you for a check up on Saturday, your doctor told us your heart beat was very faint and slow, but nevertheless you still had a heart beat and he honoured our wishes by assisting you to breath.

We don’t know how you bounce back so quickly and come back to us even stronger every time but we are eternally grateful.  Even your doctor told you to at least TRY and act sick with your check up J

People keep asking us how we do it, how do we cope and the answer is YOU JUST DO !!! Besides the love that we have for you, there is no other explanation for it …………… and as I always say we are grateful for the time that we have with you and are able to love you.

Love you precious pumpkin

4 comments:

  1. oh come on Mom, you know how hard it is to read when all the words are a big blur (because of tears that is!). I am so thankful for the quick response of Ouma and Oupa as well as Lior's doctor. I don't even want to feel for a second the emotion you had getting the news of what had happen. So scary! Thank the Lord he is doing good now and I had to giggle at the doctor joking about him trying to act somewhat sick! hehe He is a fighter Mommy and as long as you keep showering him with your love he will fight to keep that precious heart beating for you. I was heartbroken reading how you would have felt not getting to hold him, cuddle him, say I love you or worse, goodbye. I have never missed a letter you have wrote to him. They are all a lesson in that we should never take for granted the smallest things our kids do. True blessings they are. PS....No more scares Lior!! We want happy letters sweetheart. XOXOXO

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  2. I'm so sorry that happened. That is so very scary. Zane used to have seizures until he was four months old. They were extremely difficult to watch. The seizures, coupled with his central apnea, were a frightning combination. We often thought we'd wake up one morning and find him gone.
    But Zane is a fighter, too. He "outgrew" his seizures and his apnea. I pray for the same for Lior.

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  3. Kimmy, you are such a strong mommy, and so very blessed with a wonderful family - and a very strong awesome little boy! You are an Inspiration - everytime I read one of your blogs it brings tears to my eyes (good tears)
    Thank you for reminding us what we take for granted - we never should!!
    Lots of love & kisses
    Mich xxx

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  4. You are a stong mother indeed. I can only aspire to be half as strong of a mother that you are. I am so happy that your little man continues to be a big special part of everyones life

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