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.

Tuesday, June 14, 2016

Two years come and gone

My precious little binky bums

Two years has come and gone - in fact its been two years and a month since you gained your angel wings.

Its taken me so long to get here,  not because I didn't have time but because I have found it incredibly difficult to come here in the last two months.

On 13 May it was two years since we had to say goodbye and I cant understand why but this year I found it incredibly difficult to accept - I guess I felt incredibly inflicted - everyone wanted me to celebrate my 40th but I just couldn't - I just couldn't find the strength to do anything other than cry and think about you. Think about what you look like, just to see your smile again and hear you laugh. I guess I will never heal and as each day goes by I will just learn to live this way - okay on the outside but crying on the inside.

We also had another milestone to pass this year may angel - your sister Tannyth had her 21st birthday - I was incredibly proud of her - she specifically stated that she did not want a party, she just wanted something sentimental and time with her family.  I know it was also hard on her as this was also the day that we had to say our final goodbyes to you at a very special service, but she did have a very special day - mommy and daddy bought her a very special and sentimental ring - which she loves and hasn't taken off since. We sent her flowers, chocolates and balloons and then spent the evening with us - I know she missed having you with us.

So many things have happened that we wish we could share with you - like now Tia also just celebrated her 19th birthday and is going through a milestone of her own - jip you guessed it - she is preparing to get her license, although she is full of nonsense she is incredibly excited - she feels like she is finally growing up :)

Toni is Toni, still happy to just plod along and go with the flow  and missing you so much along the way.

And Daddy - well what can I say - so many little things that remind him of you, he is still taking strain and sometimes shows his tears but hides them as quickly as they come. He misses you and uncle Kev so much - we all do.

I Love you and miss you so much my beautiful baby boy -