My
name is Melissa and I have a son named Jason who just happens to have Down syndrome.
He is ten years old and the oldest of my four children. I will not attempt to
share all I have learned or experienced as the mother of a child with “special
needs.” I hope, however to give you a glimpse of what treasures I have found on
this journey of mine.
As I stated before, Jason is my
first born. I was 27 years old when I gave birth to him. It was a difficult
pregnancy and birth. During the pregnancy I gained 60 pounds, had a fibroid
tumor (a benign tumor of the uterus),and towards the end of my pregnancy broke
out with the pruritic urticarial papules and plaques of pregnancy (PUPPP)
which is basically a rash on the abdomen and other parts of the body. At the
time we lived in a trailer and it was during the hottest part of the summer. I
also had polyhydramnios which is a condition when pregnant women have an excess
of amniotic fluid. Needless to say it could have been worse and none of these
conditions are life threatening but do not make for much fun! I was monitored
by a specialist for the majority of my pregnancy and was told that my son may
have a chromosome disorder. We never received an official diagnosis until after
his birth because I declined the amniocentesis and my alpha-fetoprotein test to
determine abnormalities in my unborn child came back a false negative. It did
not matter to me if my son had Down syndrome. He was my child and I his mother.
Nothing was going to change that.
So, after being a week overdue and 16 hours of labor,
Jason went into distress and an emergency c-section was performed. I was able
to see him for about 20 minutes until he was taken to a children’s hospital
where he would spend the next 9 days, of which the first 5 days I spent apart
from him in the hospital I gave birth in with my own complications. It was a
hard experience for my first time being a mother, but God prepares us and
provides the help we need when we truly need it. It was not hard because my son
was diagnosed with Down syndrome, but because he was my baby and I wanted
everything to be alright.
And it was….Jason
does not have major health issues….at birth it was initially respiratory issues
from a complicated labor and the time in the hospital was due mostly to an
extremely high bilirubin level and monitoring for a transient leukemia. For the
most part he has struggled with chronic sinus infections and Celiac disease (an
allergy to wheat and gluten).Of course we have spent our time with specialists
throughout the years as most parents of children with special needs or health
issues do. We are currently trying to rule out seizures.
So far, this is pretty boring and probably nothing new,
but I wanted to give the background of our story to make the point that
sometimes what might seem like a hard or difficult situation really turns out
to be a blessing and doable. The things that we think are so hard to go through
are hard, but when faced are bearable, because a mother’s love gives her the
strength to meet the task ahead. Our love for our children outweighs the feelings
of inadequacy, fear and doubt we may have.
Now, I will fast forward ten years (someday maybe I will
write again about my day to day life with little Jason which is eventful to say
the least). Jason is a lot of hard work and a lot of fun. He basically has two
modes. The first is what I call the “Dennis the Menace” mode and the other is “My
Sweetheart” mode. If there was a third one it would be “The Sick” mode for when
he is ill…no fun…high fevers…puking. What have I learned? He is my son first
and always has been; he just happens to have Down syndrome. Why? I do not know, but I am thankful. However,
having Down syndrome is part of who he is and part of what makes him so
beautiful! I have thought at times what life would be like with just my girls (ages
8, 6, and 3). It would probably be a lot easier but I would not be the same
person and neither would they.
I really think we get the better end of the deal with
having Jason in our life. It is he who teaches us about what really matters and
about unconditional love. His laughter is contagious. When he smiles…my heart
melts. As I sat earlier to start writing this I was having a bad day, I was sad
and he must have known it. He brought a chair and placed it right next to mine.
He plopped down in the chair and put his arm around me and just looked at me
with a smile. He was happy to let me continue writing; it was like he just
wanted me to know he was there and that he loved me. How often do we do that as
adults? Usually someone has to beg for our time because we are too busy.
Anyhow, there is so much I wanted to write and did not. I wish that each person
who reads this could meet Jason. Below is a poem that I wrote on his behalf.
My Name is Jason
My
face is a little different
And
so is my speech
I
do things a little different
Though,
I am a lot like you
Some
things are the same
I
need to be taught and loved
And
given a chance to make gains
It
may take me a little longer
To
do what I want to do
But
with patience and work
I
will improve
My
mom says my job is
Helping
her to appreciate all
Of
the little miracles that most
People
don’t see…
Like
appreciation for the little
Blessings
that God bestows,
Being
able to say more words,
Being
able to communicate a need,
Understanding
what you say to me
Mom
says God made me special
I
have Down syndrome you see
And
though sometimes it’s hard for Mommy
And
sometimes even hard for me
I
make this world a better place
Just
by being me.
I
love people unconditionally
They
do not have to be pretty or smart
I
see as God sees for He looks upon the heart.
My
face lights up with the simplest of joys
I
find happiness in being with my friends
And
not just with my toys
I
want to do the things you do
Play
football and have fun
So
please help me to feel a part of
And
loved…
Written
By: Melissa, for my son, Jason
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