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, 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 -

Monday, May 9, 2016

Mothers day

Hello my precious

In general conversation the other day with a friend we were talking about someone she knows and without realizing, she asked me how someone can feel so sad and so happy at the same time, it doesn't make sense.
The only way I can describe it was to say that its very easy to feel that way - take me for instance - I am very happy because I am ever so privileged to I have six beautiful children - three amazing and beautiful daughters, One little boy who was and always will be the biggest and most precious blessing of my life, two beautiful step daughters and a really special, generous, kind hearted and loving man who is always by my side -  BUT -  I am incredibly sad and heartbroken at the same time because I don't have my little blessing by my side. I don't have you to cuddle and kiss anymore and that is exactly how it feels every day, happy yet sad,  but especially yesterday on Mothers Day.

My heart will always have a full yet empty feeling - I have so much to be thankful for but yet my heart feels like there is so little to be thankful for.

Love you and miss you always my angel.

Lots of love

Thursday, April 14, 2016

Its your birthday month

My precious angel
15 more days and it  is  your birthday - 6 years old yet forever 4 years and 14 days.
Oh how I miss you. I miss your smile, touch, smell, cry, your laugh, your deep breathing whilst sleeping, feeding times, bath time, your shouting and your intense concentration when you wanted something or watched cricket on TV. I miss you banging your head against mine and the way you used to swing your legs up and down when you would lay in bed with me and daddy when you didnt want to sleep, and the way you always used to put your lips together and make a "mmmmm" sound as if you wanted to say mama. I miss hearing your giraffe rattle that you loved so much and seeing your chair rocking to and fro every time I come home from work. I miss the way you always used to look into a specific corner of the room and smile or laugh, as if someone else was there with us.

The days seem to be a little longer, I so want your birthday to come so that we can celebrate you, yet at the same time I don't want it to - because it is too heart breaking knowing you are not with us.  I think about it every day and then the sadness and hopelessness kicks in and its migraine after migraine. I see how daddy is emotionally taking strain the closer it gets - and my heart breaks for him and your sisters because I am helpless in making it better for them.

The other day I saw a post asking if you could describe your trisomy journey in one word what would it be. I thought about it for a while and there really isn't only one  word that can be thought of. Yes there are many "one words" I can say but just one does not describe the life we had with you. It was miraculously amazing, majestic compassionate, perfection, honoured, pure and unconditional love, indescribable, terrifying, scared, helpless, hopeful, tired, exhausting, inspirational, pure joy, pure sadness, exquisite, empowering, challenging, blessed, rewarding and so so so much more - yes there are some "not so great" words, but that was part of our journey. Let me just say though, the good far out weighed the "not so good" and yes if anything,  life was put into perspective and having had you in our live is the most rewarding thing anybody could ever have asked for  - and now you are an angel in heaven looking down on us.

Love you my sweet angel boy

Wednesday, February 3, 2016

Taking a step forward

Hello my precious

I miss you so so much my angel - sometimes I feel like my heart is just being ripped right out of my chest.

Its been 20 months since the worst day of my life and still it feels like yesterday. Daddy and I decided that we needed to try and take a step forward and so we decided that it was time to dismantle your cot. It was horrible and painful - it felt like we were saying goodbye all over again.

I walk into my bedroom now and it feels so bare and so empty without your cot there. I don't think I will ever get used to it. Seems so much harder to sleep at night now, knowing I cant just reach over and touch it.

The hardest part is I don't actually know how to deal with what I am feeling, its like the anger has set in and I just want smash everything in front of me - its as though I am a ticking time bomb.

Why - why - why

There is a huge gaping hole in my heart and in my life which will never be filled again.

Miss you and love you so much binky bumbs -