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, July 22, 2014

Just about sums it up

Aah my big boy ....

The days goes by so quick yet seem so long at the same time. Time doesn't seem to be healing, maybe because I have tried to be strong and now it just doesn't feel like I can anymore.

I read something the other day which pretty much sums up how I feel .......

"I have arthritis of the heart and every inch of my soul aches.."

I don't think any other words can explain it better than that and if that doesn't explain it, then nothing ever will. My body physically aches, my heart physically feels like it has been broken into pieces or as if it is pulling so tight all the time. I am continuously tired and seem to cry a lot more.

I guess now and its probably only human, the questions now start and I seem to torment myself;

Was I a good enough mommy to you?
Did I give you everything you ever needed?
Did I cuddle you enough?
Did I love you enough, the way a special needs baby is supposed to be loved and for that matter the way any child is supposed to be loved by a parent?
Did I play with you enough?
Did I keep you comfortable enough?
Did I do enough to keep you pain free?
Did you know that I loved you so much, was I able to make you feel the love?
Did I tell you that I love you enough - even though I would say it out loud and whisper it to you several times a day?
Did I do what God expected me to do when he gave you to me?

And then the biggest question of all, WHY and HOW ... what actually happened that you were taken from us. Were you tired and just couldn't any more? Was your little body poisoned from your colon? Could I have saved you. If only I knew why. So many more questions and I cant seem to answer any of them or find any comfort in anything ..........

Never a second that goes past that I don't think about you.

Love you to the moon and back. Love you more than all the grains of sand in the desert. Love you more than anybody could ever imagine


Wednesday, July 9, 2014

Still true

If before you were born, I could have gone to heaven and saw all the beautiful souls I still would have chosen you

If God had told me, "This soul would one day need extra care and needs"
I still would have chosen you

If He would have told me, "This soul may make your heart bleed"
I still would have chosen you

If He had told me, "This soul would make you question the depth of your faith"
I still would have chosen you

If He had told me, "This soul would make tears flow from your eyes that could fill a river"
I still would have chosen you

If He had told me, "This soul may one day make you witness overbearing suffering"
I still would have chosen you

If He had told me, "All that you know to be normal would drastically change"
I still would have chosen you

Of course, even though I would have chosen you, I know it was God who chose me for you"

Wednesday, July 2, 2014

Trying to survive

Hello my precious.

These letters seem to be getting harder and harder to write....

People say time heals but it really doesn't. As time goes by it becomes harder and harder to know that you are no longer an earthly angel.

This is the last photo that I got to take of your beautiful face and gorgeous smile - even though you weren't feeling well - I do believe you were smiling at your angels because you weren't facing or looking at me - its as though you were in another world.

This photo captures every essence of your being.

I guess the hardest part is that we don't get to see new pictures of you. I go on to my phone and open up the folder and I still expect to see new photos, and then I realize I will never and this will be the most recent and last one I took.

It breaks my heart baby boy - Daddy and I feel like we are just trying to survive and not doing too well at it.

We don't really know how to cope, besides to slap a smile on our faces and pretend to everyone else that everything is ok - well at least that's the impression that everyone seems to get. But in fact we are dying inside and barely surviving.

I love you baby and miss you more than words can ever begin to explain.

I found this the other day and it is pretty much true:

"My Mom Is A Survivor
My Mom is a survivor, or so I've heard it said.
But I hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands on the beach that never wash away...
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others...a smile of disguise.
But through Heaven's door I see tears flowing from her eyes.
My mom tries to cope with death to keep my memory alive.

Forever and for always you loving mum