Letters to Lior: February 2014

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, February 11, 2014

A letter to my Mommy and Daddy

Dear Mommy

I know I cant write to you, but this is exactly how I feel:

Special poem for parents with a child who has special needs:
Dear Mommy, don't you cry now
and Daddy, don't you weep.
I want to whisper in your ear
before I go to sleep.

I know that when I came here
I seemed perfect in every way
and you were so proud Daddy ...
when you held me on that day.

And Mommy when you kissed me
and wrapped me up so tight,
I felt as if I belonged here,
and everything was right

When things got really scary
and I began to slip away
I saw your face, dear Mommy
as you knelt by me to pray.

And Daddy, I always notice
when you wipe away a tear,
or watch the other little boys
as they run and laugh and cheer.

I may not be able to tell you
how much I love you so,
or even show you how I feel
and what I really know.

But when you hold me Mommy
at night when all is still
I hear your dear heart beating
and I know that all is well.
And Daddy when you take me
to the park, to run and play
I know that you still love me
though the word's I cannot say.

So Daddy don't you cry now
and Mommy don't you weep,
I want to tell you something
before I go to sleep.

I may be sort of different,
and you may not understand
I know that I am not that child
that you and Daddy planned

But I love you both so very much
and I know you love me too
and one day when this life is done
You will feel my love for you.

I know the future is unknown
and you will always have to be,
the ones who love and listen
and take good care of me.

The road we walk is rough sometimes
and you cry a lot of tears,
but one day we will turn and laugh
as we look back over the years,

So Mommy don't you cry now
and Daddy please don't weep
I want to say, I love you
before I go to sleep.

~ By Sally Meyer

I love you all so much !!!!!!!!!!!!!!!!!!!