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, May 28, 2014

Reaching far and wide

Hello my sweet baby boy - I know you are no longer here with us, but I still find it healing to write to you - I miss you so !!

We had your Celebration of Life Service on 19 May, and only once we had finalized all the arrangements did mommy realize it was your sister's birthday L
Tannyth was more than happy with it, she said that it made her day even more special.

Standing up in the chapel was the hardest thing that I have ever had to do, I was and am completely heartbroken, but I was so proud to talk about my little boy and how your little light shined for everyone.

We could not have imagined a more beautiful service. It was just the way we wanted it. Daddy and I decide that we needed to give you a really beautiful final salute and by doing this we would release a balloon for every day of your little life - 1475 balloons. There were 4 white balloons which daddy and I released and the rest were blue. It was the most beautiful and magical sight ever for an incredibly magical little boy. Even the gentleman who drove you away, drove so slowly because he was in awe and didn't want to go ahead of the balloons.

There was no way of knowing how many people would attend your Celebration of Life. There were close to 160 people and I got so many apologies for not being able to make the service. I was in awe big boy, I know that there are so many more people that would have liked to attend had they been close by. I finally realized that we will never be able to fathom how far and wide your little light has reached and words cannot begin to express how proud I am of our beautiful little Trisomy 18 angel.

We continuously have a candle burning in the lounge for you, and it is comforting for us so we will keep burning one for as long as we need to.

We got such a wonderful surprise from uncle Steve the other day, he sent us a message to say that he bought a star in the Northern Hemisphere and named it after you with this message on the certificate

"Hold tight the days you loved, laughed and played
Include the morning giggles and snuggles
Years back and forward Lior's love remains

Like wings of a Dove showing strength and solace
The Barrington Light shines for always - Love you'

It was the most beautiful gesture ever and now we know that your light will shine down on us for eternity.

We have received so much love and support and compassion from so many people that it is actually hard to believe. But for us this just shows the impact that you have had on so many. You have changed so many people's lives big boy, more than anyone would ever know - and I am so proud say that I am a mommy of a Trisomy 18 boy.

Miss you with all my heart my sweet angel


Monday, May 26, 2014

My little lion's final roar

Oh baby boy, where does mommy even begin. My heart, our hearts are forever broken and it feels like life will never go on again !! I miss you so much and my arms feel so empty. I yearn every second of the day just to be able to see you, feel you and hear you. My heart aches just to have one more cuddle, to hear one last giggle, to be able to feel my skin against yours and to give you one more kiss, and just to feel your fighting spirit.

You grew your angel wings on Tuesday 13 May 2014

Your daddy and your sisters are missing you so much as well. Tia cries for you constantly and the rest of your sisters, well, they are quiet and I know they are dealing with losing you in you in their own way and the storm is yet to come.

I worry about daddy, because daddy being daddy, he feels he needs to be strong for everyone. I see his tears coming and he always pulls them back. I keep telling him that its your turn to look after us now, but as you know daddy, he insists.

The house is incredibly quiet, for a little boy who was supposed to know nothing and do nothing, you were very loud and boisterous. Always competing with the tv or the radio and between you and your sisters as to who could shout the loudest. The shouting with daddy and both of you competing with each other and the laughter that came afterwards .....

The worst part is when we go to bed at night, I realize now, the steady sound of your breathing always made sleeping easier for us - and now there is this deafening silence and sleep just never seems to come, no matter how tired we are. Even Whiskers (the cat) refuses to climb out your cot - and she always knew it was out of bounds for her.

I know your last days weren't the easiest for you baby boy and I can only hope that we kept you comfortable and loved you as much as you needed and even more and that you could feel that love.

I know everything happens for a reason . The hospital you were in when you grew your wings was one of the most beautiful we could have ever asked for. There was a magnificent rose garden just outside your window and I imagine that you walked through that garden because your little legs finally allowed you to - because you are whole now. No more T18 and no more pain.

My angel, our heavenly angel, the world's little lion, you gave us one final roar and although we have been the only ones to hear it, the world will never stop feeling its tremor for many many years to come. Your little light has and will always shine incredibly bright.

Love you and miss you incredibly my little pumpkin