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, April 30, 2012

Always a smile

Well hello my gorgeous, precious little TWO year old miracle !!!!!

Mommy will tell you all about your birthday a bit later. Today I want the world to see your smile and just how contageous it is. Quite the opposite to what the doctors said two years back .... wouldnt you say?

And these are only some of the pics that we managed to capture. There are so many more that the camera missed. I SOOOOOOO love just seeing your smile.

Monday, April 23, 2012

How quickly time goes by

Good morning my precious angel !!

Today there are so many emotions running through my heart. Almost two years ago we were basically told you will never be, and if you are, you will be severely deformed and not compatible with life.

My heart is ecstatic because "YOU ARE" and YES you have what some people would call deformaties ....... but you are perfect in our eyes. From not living longer than an hour to being two years old in a few days time keeps me in complete and utter awe. My heart is so full of love and light because we have had almost two years more than what we were told.

I am also heartsore today cause  I just wish I could freeze time. Not in a negative way that I dont want you to grow and flourish, but in the way that I will never have to let you go. In a way that when I wake up every morning I know I will be able to see your smile and know you will always be there for the rest of MY life, in a way that I will never out live my son, in a way that you will be able to see me grow old and me see you grow old, in a way that my son will have to bury me and not the other way around :-(

My heart is also celebrating because in a few days time you will be TWO years old - who would have ever thought. From what we were told, we didnt, but we have always believed and had faith and from what we know now, we still believe and have faith!!

Every day you teach us something new and no matter how hard it gets you always try, you always have a smile. You are so persistent even if you dont get it right. When you want to touch my face, there are times that it takes about twenty tries before you get it right, but you never give up. You aim as if you are about to throw and arrow and your arm will move back and forth ...... back and forth and then ...... yes you eventually get it right and the satisfaction on your face is priceless and the melting feeling in my heart is just as priceless. There are times when you get so frustrated but still you never give up. Thank you for teaching us to never give up my darling baby. Thank you for teaching us to believe and have faith. Thank you for teaching us to live, love and appreciate every moment.

Thank you for choosing me and daddy to take care of you. Thank you for allowing us to love you and most of all THANK YOU for loving us and trusting us no matter what.

Love you angel boy

Tuesday, April 17, 2012

Awesome holiday

Hello my gorgeous little angel pie. 

So we are back from our little trip and all went well - thank goodness.

The morning we left we were pretty much all alone, daddy and the girls had already left the day before. We made our way to the airport and I guess mommy was just so nervous about how you would react with the fllight I didnt even think about taking your birth certificate with for proof of identification ..... what a dilemma ..... now I am stressing cause I have to go home and get it and so worried we will miss the flight and if that had to happen, we would miss the entire holiday :-(    .... not sure why but for some reason I mumbled that I only had your medical certificates with me to say it was safe to travel with you, and thank heavens I did, cause the lady behind the counter then quickly asked if I had a medical aid card with your name on it, which I did, so they allowed us to go through ...... at least that was one disaster avoided :-)

So we made our way to departure. Lets just say that getting on a flight with a special needs baby, two really big bags, a pram and hand luggage all on your own is not quite the easiest of things and the worst is,  the people that are supposed to help you just sort of watch you struggle along and dont really do anything. Thank goodness for strangers that are prepared to help !!

Anyway while we were sitting waiting for the plane to take off, I was just a complete bundle of nerves just hoping and praying that we didnt have any difficulties. In the mean time you were as happy as ever, looking at everything and everyone that walked past. I am proud to say that you were absolutely perfect on the flight, no problems whatsoever. In fact I think it probably felt like one big pram ride for you. There was so much turbulence that the plane was a little shaky for most of the flight, but it didnt seem to bother you. You sat quitely on my lap and never moaned once, even the lady behind me commented when we got off the plane that she never even knew there was a baby on board : ).  So we arrived in Durban and still had a two hour drive to get to daddy and the girls.

By the time we got going, you were completely exhausted and
after a feed passed out, but not for long. All of a sudden we seemed to hit a patch where it was extremely hot and humid and you were NOT happy with that because your body cannot regulate temperature you get hot very quickly, so we had a bit of a crying spell for a while but then as if God heard your cries, it cooled down just as suddenly and you settled. You even had some serious conversations with mommy. All I can say is I have never been so relieved to get to a destination before as what I was that day. Knowing that you were safe and sound and that we could get on with our holiday was just such a relief.
Although we didnt get down to the beach all that often with you, we did once or twice. It was just far too windy most of the time, and as is, you battle to open your eyes outside and with the wind it just litterally makes it impossible for you to open your eyes. We tried taking all the precaution that we could and glad to say that we had some good times. I think some of the people probably thought we were crazy having you dressed the way we did, but we were NOT taking any chances of you getting sunburn (even though we had a factor 50 lotion on you), or getting any earache from the wind. The fact that we were so far from your doctor just scared the living day lights out of me.
Needless to say you didnt really like the sand when we put your feet down for the first time, the first thing you did was lift them up as fast as you could, but after a while you were quite happy to sit in the sand and play ...... yes play !!!!

All in all we had an awesome time and everything seemed to agree with you. clearly the air agreed with mommy cause one night I fell asleep and was pretty much completely out of it. Daddy says they were all sitting out side have a good "kuier" and one of uncle Kev's huskey ..... Rain .... came to them and was making noises trying to get their attention, and after a while daddy realised and told everyone to keep quiet, only to hear that you had been crying and mommy didnt hear a thing ........ (felt so bad), but anyway because I wasnt waking up, Rain's instinct was to go and call daddy so he could come and get you ....... I am still amazed.
Thank you Rain, if it were not for you, my angel boy could have possibly stopped breathing from all the crying and I wouldnt have know any different :-(

This trip has really done us all good, we are all so much more relaxed, especially you. I know I have said before that you have come out of your shell, but now you have Really come out of your shell. 
I cant say it really bothered me, but the one thing I have always wanted was for you to make continous eye contact with me, and you dont normally do that, but since we have been away that has changed too, although at times you still look up, you definately make more eye contact with us and keep it for a while. You have also learnt to pull mom's hair and look at me while you are doing it with a little grin on your face ........ oh the pleasures that most people take for granted ...... I long every day for you to do that and yes my baby angel ...... you can pull as hard as you want to and laugh while you are doing it .... its all more than okay with me !!!

Another thing that is a memory I will forever cherish extremely close to my heart ..... whilst sitting on daddy's lap I was cooing you and encouranging you to come to me and all of a sudden you threw you arm up over my shoulder and pushed your body toward me !!!!!!!!! YOU wanted ME !!! It was the most gratifying and emotional moment of my life .... thank you my precious, nothing can beat that feeling, it was just the best ever !!!

Okay so you have been healthy and I pray every day that it will stay that way, but now unfortunately it has been your sister's turn to go to hospital. While she was playing a hockey match the other day, she doubled over in pain and we landed up taking her to the emergency room. The doctors couldnt find anything wrong, but after mommy insisting that she be admitted and the problem found, the following morning they ran tests and did a sonar and finally discovered that it was her appendix which they have now taken out. Like grampa says, we should be well equiped to be nurses by now ..... and I would most definately agree. At least she is home now and things are back to normal again .... sigh .... all just so tiring, but good to be home and have the family back together.

Love you all so so much