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.

Friday, May 19, 2017

Last Kiss

My Angel boy


My heart aches terribly today, I miss you so so much. Today its three years since I last gave you a kiss. My heart shattered into zillions of pieces, saying goodbye to you and kissing your cold lips as my tears streamed down on to your face,  has destroyed me in a way nothing else could.

I just wanted to take you out your precious little coffin and hold you once more, but I couldn't. Instead Daddy and I placed your favourite toys and our letters beside you and hoped that this would be enough and a few hours later I watched all the balloons - one for every day of your life - float away and drift high into the sky - our final goodbye.

What I would give just to hold you one more time.

Love you big boy

Lots of Love
Mommy



Monday, May 15, 2017

3 years and two days

My precious angel

I woke up on Saturday morning knowing that its three years since I last held you and felt your touch, three years since your heart was beating next to mine and then beat no more. It was a hard day but somehow we have learnt to get through the difficult days. Time does not heal, we have just learned to deal with it with out showing it.

A few weeks ago daddy and I decided to go to the movies and watch "The shack". Now if anyone has seen this movie or read this book and lost a child, they will know exactly what emotions ran through me. Now I have never been able to physically feel your presence like daddy does but somehow you knew you needed me to know that you were with us. Through the adverts .....nothing, the beginning of the movie ...... nothing, but when my emotions were unbelievably strong, there it was, the only way you could get my attention.

Now because of your feeding tube and the valve in your tummy not closing, after most of your feeds you would bring up and its a smell that is very distinctive and one that I could easily associate with you, if you wanted me to .... and that is exactly what you did.

So to carry on, from the time I started crying watching this movie, I could smell it, right up to the end of the movie and then, when the credits started rolling, ..... nothing. As suddenly as it came, it was gone.

I always ask you to somehow let me know when you are near and I guess you knew I would need that comfort whilst watching this movie - so so so close to home.

Thank you my angel boy. Love you to the moon and back

Till we meet again

Tuesday, May 2, 2017

7 years old :)

My precious little angel

So you are 7 years old now :) and we wish so much that we could have spent your birthday (and every other day) with you.

As your sister says, you should have been starting school this year (even if it was a special school) and we sincerely believe that everything that you should have been doing on this earth, you are now doing up in heaven. I like to picture you running freely and laughing, because boy did you love laughing and shouting and make noise like normal little boys do. Shout shout shout big boy, make a noise big boy, play and be merry my angel and know that we love and miss you more each day.

HAPPY 7th BIRTHDAY my binky bums.

All my love and kisses - till we meet again

Love mommy <3

Wednesday, February 1, 2017

Another step forward and giving

My precious precious angel boy

Another Christmas and new year with out you here by our side - never gets any easier. In fact this one was just a little harder but at the same time a very "heart warming" one too.

Daddy and I plucked up the courage to go and visit a home for abandoned children - well abandoned babies really - and once we were there we knew straight away that The Door of Hope was where your things needed to be. We walked in and saw straight away that the children are well cared for and the material things are looked after especially with so many babies. We left and my heart felt ..... well I guess I can say my heart felt sure that this was the right place.

That evening daddy and I had a difficult task ahead of us. We unpacked all of your "Crates" and had to go through each and every little thing and decide what is was that we want to keep and what we would like to bless other children with - I still wanted to keep everything !! -  it was incredibly heart wrenching, but we made it, we sorted through everything and kept what our hearts could not part with and set the other stuff aside.

On Sunday morning we delivered everything to the home - your cot, pram, jumpers, walking rings clothes and lots of toys. Daddy and I know that these babies will be so blessed to be able to use these - it warms our hearts so much to know that we could bless others the way that we were and are blessed to have you and the way that others were always helping and blessing us - its our turn now - as heart sore as it is.

I still have your chest drawers next our bed, with all your clothes and blankets that we used on a daily basis - I wasn't able to go through those, that will take a little more time, but I have plans for those and once I am there, I will tell you all about it.

Love you and Miss you terribly my little monkey, binky bums.

Lots of love
Mommy

Monday, October 31, 2016

On my mind so much

Mommy's little "binky bums"

You have been on my mind so much lately - you always are - but more so than normal. Mommy is missing and longing for you so much my angel - I just don't know if it will ever get easier. I have been spending a lot of time in your garden and it really is looking gorgeous - and the only thing it can be is yours' and uncle Kev's help - cause you no mommy is normally a plant killer :) but your garden is oh so gorgeous, just as you are.

Love you and miss you terribly my precious little binky bums.









 

Tuesday, August 23, 2016

Tough times

Hello my little angel.

Its been a little while since I have been here. Times have been a little tough lately, emotionally. Saturday is was a year since uncle Kev left us and I am sure the two of you were looking down on us and all our misery - we cant help it, we miss you both so much.

The funny thing, is I think you and uncle Kev have been playing silly buggers with me and daddy. its happened to me twice but I never really thought about until last week Friday when daddy had my car and phoned me to ask me if just out of the blue when the radio was on, had it every just changed to the CD player. Now bearing in mind the CD that is in at the moment is one that was played at your service when we said our last goodbyes and the song that starts playing is track 11 which the first few words are "I hold you in my arms" - so most people find this kind of freaky but daddy and I have decided that you and uncle Kev are just letting us know that you are still around :) it makes my heart so happy and yet so sad that I cant see you "being around".

I finally dreamt of you the other night, not that I can actually remember my dream, all I remember is that you were no different to when you were with us, still the same size, the same smile, the same gorgeous little munchkin. Your sister said she also dreamt of you but also cant remember her dream. So come back to us in our dreams binky bums we want to see you some more !!

Never a moment goes by that you are not in my mind.

Lots of LOVE Mommy

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 -