Wednesday, October 13, 2010

It's Down Syndrome Awareness Month!

Little did I know...
Little did I know what the Lord had planned,
something he knew before the world began.
He set me up all along,
to be a very special kind of mom.
I used to wonder what all the disability was for,
I even wanted to learn more.
So I set out to help a man,
he had cebrebral palsy and couldn't stand.
He taught me that he was a person with dignity and brains,
he could even drive me in his car down the lane.
Then after him I became an OT,
I wanted to help people like him you see.
I studied and studied and learned all the right things,
but words weren't enough to make my heart sing.
So then down the road I was working with others,
living my dream and helping the mothers.
But that wasn't enough the Lord said to my soul,
he allowed me to conceive, He had another goal.
Then one day I found out at work,
your child will be like these, and I will be your providential stork.
At first I was afraid and cried for many days,
but the Lord brought peace to my heart saying "for my ways are higher than your ways."
Then my baby was here, he came after a very hard and long night,
he was an angel, the most beautiful thing in sight.
Now fast forward a few years later, I am no longer the teacher,
he is teaching me and making me a believer.
My love for him will never change,
he is my son, through storm, sun, or rain.
Little did I know, but I'm so glad now that I do,
that everything the good Lord put in my past was pointing me to you!
For my beautiful son Carsten, I love you more than anything!

Tuesday, October 12, 2010

Down Syndrome Awareness Month!

Creed of Babies with Down Syndrome

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

-author unknown

Monday, October 4, 2010

October is Down Syndrome Awareness Month!

Fun Facts about Down Syndrome:

*Down Syndrome or otherwise known as Trisomy 21 occurs in approximately 1 out of 800 births a year.

*There are three types of Down Syndrome: Trisomy 21, mosaic, and translocation

*Trisomy 21 is when there are three copies of the 21 chromosome in every cell which occurs during initial cell division resulting in every cell having 47 chromosomes instead of 46

*Mosaic Down Syndrome occurs when there are three copies of the 21st chromosome at some point in cell division resulting in some cells with 46 chromosomes and some with 47

*Translocation Down Syndrome occurs when extra genetic material from the 21st chromosome is attached to another chromosome, typically the 14th.  This is sometimes caused from a parent carrier and other times spontaneous

*Carsten has 14/21 Translocation Down Syndrome

* Trisomy 21 is the most common

*Translocation Down Syndrome accounts for about 3% and mosaic 1-2% of children with Down Syndrome

*Many people with Down Syndrome can lead independent lives

*Some people with Down Syndrome get married and go to college

*People with Down Syndrome have hopes and goals and dreams just like any other person

*Many times people with Down Syndrome have higher receptive skills than expressive (meaning they can understand more than they can express)

*A typical stereotype of children with Down Sydrome is that they are so "loving", they are indeed "loving" and "special" however have different personalities just like anyone else does including temper tantrums, disobedience, and the ability to make their parents crazy just like as any other child :)

*Some things to avoid saying to a parent of a child with Down Syndrome (from my experience): "he is so lucky to have been given parents like you" (just the usual you are so lucky or blessed to have him will work:)  "God gives "special" children to "special" parents" (we are no more special than anyone else even though yes God has ordained Carsten to be in our family just like any other child is ordained to be in theirs) "well that's just the way the chromosomes fell", "they are kind of like dogs, you can yell or hit them and they'll still love you back" (yes, this was actually said to me!:) "is he mild or severe?"  (this question is okay however we don't really "label" anymore and the abilities of a person with Down Syndrome can not really be detected until later in life. "how cute his little tongue is sticking out" (LOL, okay, children with Down Syndrome have tongue protrusion because their mouths are weaker than ours so the muscles don't hold the tongue in as well, typically it gets better with age and increased muscle tone.  I write these from a heart of laughter not of bitterness just so you know:)

*"Rosa's Law" was just passed by Congress to officially change the wording of Mental Retardation from federal laws to a person with an intellectual disability!  So from now on please no "R" word, it hurts, this comes from a person that used to use the word probably everyday growing up.

Okay I have two hungry mouths to feed, more to come later.....


Friday, October 1, 2010

"It's Down Syndrome"

"It's Down Syndrome"  I heard those chilling three words almost four years ago on a phone at work and my world forever changed.
Grieving, loss, numbness, hurt, pain, questioning, tears, many many tears.
Then the words began to evolve and one day became, "a boy with Down Syndrome" something I could personalize, there was a ray of hope.
More learning, waiting, and wondering mixed in with a dash of hope.
Suddenly he was here, it was no longer a "boy with Down Syndrome", it was now "my son with Down Syndrome."
Hospital, sickness, waiting, hoping, praying, then finally "we're going to fix his heart this week"
Tears of sadness turned to tears of happiness, more hope, expectancy, but still unknown.  
The day finally arrived, time to go home!  Therapy, appointments, feeding tubes, vomiting, lots and lots of vomiting.
 But also in increasing measure there was laughter, joy, hope, happiness, smiles, giggles, fun, relationship, rejoicing over milestones, a normal family.    
As months went on, I realized that the words I heard in my office at work so long ago had become void.    Now, forever, the words have permanently become Carsten, just Carsten, my gift, my beautiful son.

It's Down Syndrome awareness month!  I will be blogging some as I can about Carsten and Down Syndrome so please check back in later this month!