On Vollen's
first birthday I reflected over that past year and wrote about all my feelings
about him.
Earth Day! There couldn’t be a more
PERFECT holiday to mark the birth of a new life, new growth, change, and
opportunity for such a unique soul. I am so thankful that the universe chose
that day to bring my baby boy into my life.
I remember the specific second my
life changed after my doctor told me that they believe my baby had Down
syndrome. I thought to myself MY LIFE JUST CHANGED, forever. Surreal doesn’t
even come close to describing how it all felt. It truly felt like a dream, a
foggy, dream that I would wake up from the next day. I think I was in shock. My
brand new ‘baby’ balloon deflated knowing all of the work and challenges that
lie ahead. But also at the same time I couldn’t have loved Vollen any more than
at that exact moment. My heart felt sorry for my little baby, like there was no
one else to love him (even though that couldn’t be farther from reality), but
me and I just wanted to pour my love onto him and never let him go. I felt like
no one would love him like I would.
One thing I felt that was strange
is I NEVER cried that entire night until the very last visitor left and it was
just Vernon and I starring at each other thinking about what lie ahead. It was
at that moment that Vernon was my rock. I have talked about this before, but he
was so optimistic saying that there are worse things that he could have and
that we would have to deal with and that we would get through anything, etc…
That made me feel so much better about everything. It made me feel like, yeah,
we can do this, we can do this together and be there for each other and raise
this little boy, this child we created to the best of our ability and how lucky
he is to have us and all of the people that love him so much.
My little guy is as unique as his
own name, which at first I was honestly disappointed we used that name for him,
because that first night when there were so many unknowns as to if he would
even make it, we didn’t know if he had any heart problems and everything going
on with his oxygen levels and so forth, we discussed that if he didn’t make it
and we had another baby boy that we would name him after his brother so we
could use the name, but by the grace of God we didn’t not have to deal with any
of that and I couldn’t be more proud that Vollen has the name he does. He has
shown me that his name couldn’t have been a more exact fit for such a special
soul.
The visions of my all star, sports
star, captain, homecoming king, ‘Utero Vollen’ were disappearing. Over this
last year he has shown me he IS going to be my all-star, sports star,
captain, leader and even a strong possibility of being homecoming king (like
his father) with his heart clenching smile and squinty, crescent shaped eye
charm, with such a warm and snuggly personality that is definitely a
possibility. He will win over the hearts of everyone he meets. My vision for
him is changing the way young people (his peers) perceive people with
disabilities, showing them that they really are MORE ALIKE THAN DIFFERENT, that
they can be friends and see that he can do everything they can do and is fun to
hang out with and is funny and a jokester just like everyone else. I
underestimated the potential of my little guy and he will do everything in his
power to prove to me that he is capable of anything he puts his mind to.
He has blown everything I had thought
and expected from him out of the water. He has amazed not only me, but made
every one of his therapists drop their jaws in amazement. He has broken the
Down syndrome mold, that is for sure.
Sometimes I feel guilty that he is
doing so well. I know I shouldn’t have those thoughts because that is just who
he is and how he was designed and the genetics that he was given. I should be
thankful and I should celebrate his accomplishments and not feel guilty. It is
hard though when he is doing so many more advanced things than the typical baby
with Down syndrome. He is so close to a typical child, that it’s hard for me to
see him as anything but a typical child. I treat him that way, I look at him
that way. I hardly ever look at him and think oh yeah, he does have Down
syndrome. I am bursting with pride that I have to suppress, I feel sometimes
like I don’t fit with either group, the typical children or the Down syndrome
group and I am afraid that is maybe how he will feel when he grows up.
My son
has taught me so much in his few short years of life so far. I didn't know so
many things about myself. It definitely made me grow as a person. I am able to
go up to strangers and talk with them and introduce myself and invite them into
our Down syndrome group. I became the Parent Outreach Chair on the board of
directors for the Down Syndrome Alliance of the Midlands as well as the head of
the mom's group and lead meetings every month.
I NEVER knew
ANYONE with Down syndrome before my son was born. I was scared to death of
talking with older people with Down syndrome. I didn't know what to say to them
or how to treat them. I have learned to be more accepting to others and see
them for the PEOPLE they are, not just a person with special needs. Do I still
get uncomfortable? YES! But, it gets easier and easier the more I interact with
them and get to know them. I knew it would be a lot of work and it is, but it's
my son. I would do anything for him.
There was a
lot of therapies when he was younger and visits to specialist to make sure
everything was still good. We got through it and we don't really have any more
appointments than a typical child has. It does take him longer to do things
that typical 4 year olds can do, but it will come eventually. In some things he
is really not that far behind and in others he is pretty far behind. Each
person is unique and will do things at their own pace. It has helped me to just
take it slower and know that things will come and trust that he will 'get it'
eventually.
He is
so very smart in so many ways. He knows exactly what we tell him, even if he
has limited language right now. He can figure things out, is very clever and
even can be ornery. His siblings and him fight just like typical brothers and
sisters. He gets the same consequences as my other kids and I have the same
expectations for him as I do for my other kids. I don't "baby" him at
all. I know I said it before, but I just see him as my kid. I don't see Down
syndrome and 98% of the time I forget, it's just not important. He does
everything we do as a family and we treat him no different. It's hard to
explain everything unless you know someone personally with Down syndrome and
see for yourself that they are just like everyone else. I hope I was able to
give you an idea about what it is like to have a child with Down syndrome. I
would love to answer ANY questions anyone has. I am very open and I will be
very honest with you. Don't hesitate to ask me anything. Please feel free to
e-mail me if you would like: casieschlueter@yahoo.com
Casie
and this unspeakable gift of motherhood...
it's an honor. a dream. and not documenting it...capturing every
moment...bottling it up to save forever...would be irresponsible. ~ Kelle
Hampton
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