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.

Wednesday, October 23, 2013

Not a natural chain of life

Good morning my precious.

Mommy has a very grateful but heavy heart today, and I know that no matter how "on guard" I am or try to be, thoughts creep in and last night was one of those moments.

I was watching a movie called The Christmas Shoes and it was about two families who, through sad circumstances cross each others paths. One where the father spends all his time working and pretty much none of his time with his family and the second family who spend all their time together and the mother has a heart condition which cannot be fixed. The family prepare themselves for the inevitable and "mom" says goodbye to her family, a very heartbroken husband and her very young son.

At this moment these thoughts started creeping into my head and as strange as it sounds, my first thought was that this is how it is supposed to be. Parents are supposed to gain their wings before their children and not the other way around. Not me having to let you go, but you having to let me and daddy go and living your life to the fullest. Growing up and going to nursery and primary school and then onto high school. Experiencing falling in love for the first time and treating your girlfriend like a queen, just like daddy does me, and finding that special lady that you want to spend your life with and me crying tears of love and happiness the moment your bride walks down the isle and I know its that time when I need to let go and allow another woman to love and cherish you. Getting to see you experience the joy of parenthood and me experiencing being a grandmother to my only son's children.

It saddens me to know that this will never be, for our lives will take the course of an unnatural chain of life. You will never grow to have a physical verbal conversation with me, - yes you converse with me and yes its awesome. I wish I could understand what you say and what goes through your mind. You are at the age where we should be running around after you playing hide and go seek, teaching you to kick a ball and making sentences and painting and drawing, all the things a 3 year old would do.

Yes as much as you are a blessing to us and as healthy as a trisomy child can be - my mind still has some of those thoughts and not that I alway show it, but there are those moments when my heart cries out, in actual fact it sobs, BUT I know that you are our special blessing from God, and as hard as it is, it is most rewarding and if we had to make a decision, like the one we made on Old Years Eve in 2009, where daddy and I decided that how you would come into this would be up to you and God alone - we would most DEFINATELY make the same decision again.

Somehow I think you knew I was feeling this way because early hours of this morning you woke up and wanted to know nothing but being in my arms and cuddling in bed with me, no crying or moaning, just snuggling into my neck and sleeping peacefully and soundly.

Love you more than words could say my angel !!

Monday, October 14, 2013

A few long and not so happy months

Helloooooo my gorgeous little prince. Yes yes I know I havent been here in a while and partly feeling really guilty and completely frustrated. Frustrated because something seems to have changed on this site and I battle to upload photos and to actually write to you because things just seem to become "Sticky" and I cant save or change anything

Anyway before I get entirely frustrated again, let me carry on while I can. the last few months have not been the easiest. Something happened to your sleeping pattern and up till about 6 days ago, we had kind of been lacking sleep for a while and we just couldnt seem to figure out why. During the day you were fine but at night you were cranky. We increased your feeds thinking you were hungry, but that just made it worse. We decreased your feeds thinking maybe you were getting too much and were uncomfortable. We thought maybe you were teething, constipated, or even just being a kid .... nothing seemed to work .... I think this is the first time that I have been entirely frustrated because we just couldnt figure it out. Daddy and I then decided it was time to take you to your doctor, maybe he could figure it out because heck knows we were completely out of ideas and enough was enough.

I have spent many a morning driving to work and finding myself crying and not knowing why. Now in hindsight I guess it was frustration and exhaustion. Yay something, we found something, not sure why we didnt register but yeah, I guess thats what exhaustion does to you. So your doc was happy with everything except for the fact that when he pressed lightly on your tummy you kind of flinched and drew your legs up. So straight away he diagnoses and acid build up. Well yeah it figures cause the one night or should I say early hours of the morning I connected your tubes and you pushed up all this acid. But it didnt concern me becasue it was only one night and it has happened many times and its never irritated you so we sort of ruled that out.

Daddy and I were so relieved it was nothing serious and that we could go home and give you some meds for a few weeks to resolve it and whaaaalaaa. BUT that wasnt to be, you stayed niggly and daddy and kept on saying to ourselves, give it time, the meds need a few days to work. Four days later was enough and we were back at the doctor. So by now your chest was a little iffy, but pretty much normally what it is, so nothing to worry about but your doc wasnt taking any chances. We got you straight onto antibiotics and for the next two days you were back to my happy little pumpkin. It didnt last very long but those two days were pure bliss. By Thursday night you were snottly and phlegmy and it was too late to get you to the doctor. I toddled off to the pharmacy as we always have a back script of meds for you ..... well normally we do ..... that wasnt to be either. At this point I just wanted to sit down in a pit and hope that it would swallow me there and then. Fortunately we have a wonderful pharmacist who actually gave me all your nebs meds without a script - Thank you Heavenly Father for your angels - Mommy pumped you with the nebs and you most definately werent happy but you had a relatively good night, and when I say a relatively good night, you still woke up and were still niggly but no where near what it had been.

Friday to Sunday you were fabulous and back to yourself again, and then Monday rolled on - NOT SO GREAT - so off to the doc again and this time treating you at home was just not going to happen. By this time I just could not control any tears flowing down my face and quite frankly I just didnt care who saw me or what people thought - I think sometimes being tired has its benefits - A whole lot of tests were run, bloods, xrays, mucous, urine, stools and and and although it sounds a heck of a lot to parents with "normal" children - yeah you guessed it - its NOT normal but its OUR normal. FINALLY a diagnosis - bacterial pnuemonia and oesophogitis - an infection in your oesophogus and let me tell you this was not pleasant - this infection made your breath smell like your insides were rotting - but thanks to another angel of yours - yep your doctor - it was nothing that two different antibiotics 4 times a day couldnt fix !!

So we are back home and so far so good - lets keep it that way my sweet little boy - dont think I could manage another crappy week for a while. Love you to the moon and back.