I found myself asking the question again yesterday "How can one's heart be so full of joy, happiness and love AND feel like it has been shattered into a million pieces at the same time". I guess I was having one of those moments where my mind was wondering to where it shouldnt be going.
Today I found myself in complete and utter awe ...... tomorrow Lior will be 5 months old ............ how quickly time goes by. We will celebrate his "birthday". I have been looking at photos of our little miracle since birth and although he is still so little (the size of a new born baby and weighing just over 4kg) he has grown soooooo much. Doctors said he would never do things and would be severly deformed and have severe mental retardation and that it would be best for us to abort. NEVER did we ever consider this, we needed to give our little boy a chance at life and he has grabbed it with both hands and holds on tight.
I look at the milestones he should be reaching, yes he has not reached all of them but he has reached most of them for his age - he has learnt to role onto his back and to his side again, he lays on his tummy and lifts his head and shoulders (doesnt like this position at all) although he does not smile as much as "a normal" baby would he still smiles (something the doctors said he would not do). He holds his hands together and manages to get his two fingers linked. When he is on his little play gym, it takes a while but he does eventually try and reach for the toys, although he cant grab them he still tries. On Saturday he also figured out how to suck his thumb, so yes he has not reached all the milestones that a 5 month old baby would normally but he has far exceeded everyones expectations. ALthough he is susceptible to infections and sickness he still fights and stays strong and continues to be a happy baby, dont get me wrong, he still has his litle tantrums when he wants to - and the difference for us ..... although it scares us at times we cherish every moment, every tantrum every little sound that he manages to get out, even the frustration on his face when he can't get the sounds out (due to the cleft palet).
I got an e-mail from Jay yesterday and after a lilttle discussion her advice to me was .................. "live for each day you have him enjoy the love and joy he brings you and love him like there is no tomorrow, because in the end that will help you. The love and joy you shared........" Very hard words to read but ever so true !! Just looking at his pictures and remembering our moments the day before gets me through the next day when I am at work.
Jay's little girl passed on in November last year - little Jess also had Edward Syndrome. She was 18 months old. I dont know Jay well, but I look up to her, she is kind and generous and is more than willing to share her feelings and advice with me. This means so much to me, she has been through what we are going through at the moment, she knows every incling of feeling that passes through us as we experience every day. Together we want to let the world know !! Support groups/information in South Africa is very limited and doctors etc are not very forthcoming with the information. I must say though we have been very lucky with our doctors, they have supported us through all our decisions and not treated us any differently, this has made the world of difference to us and we want to acknowledge and give thanks to them.
Not many people know about Edward Syndrome/Trisomy 18, we also thought it to be very uncommon/rare, but research has shown that this syndrome is the most common after down syndrome, the only difference is, T18 is not compatible with life, 85% of babies are born to heaven or the mother miscarries in early stages, 10% of children born with the syndrome do not live past their 1st birthday, that is why it is so important for us to drown ourselves in little Lior's spirit and bask in his light that shines continously.
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