On November 18 2009 at 4:02 am William Alan Bartosch was joyfully welcomed into our family. He weighed in at 7 lbs 9 oz and 20 in long. We were stunned to discover that he was born with Trisomy 21, or Down syndrome. We love him unconditionally from the top of his toe-head to the tips of his toes. We know that this diagnosis will not define him. He is a happy, healthy little boy that just happens to have an extra chromosome.
Follow us on this unexpected and exciting journey as we learn how to live life Will's Way.
This post is from one of the many blogs that I have read. Much like keeping a blog, reading blogs is theraputic to me. This post is so remarkable that I had to repost it. This woman had a prenatal diagnosis of Down syndrome and she is responding to a forum of other mothers with the same prenatal diagnosis that are looking for answers. And once again I am reminded that everything is a matter of perspective.
"I have lurked here for years, and although my story may not be welcomed with
open arms, I feel compelled to share it none-the-less. Like many of you, I
received a pre-natal diagnosis that our precious baby had Down syndrome and a
heart defect. It was completely unexpected and devastating, obviously. Like many
of you, my first concern was for my daughter. What would having a sibling with
special needs mean for her future? I didn’t want to burden her with a brother
who would never be anything but a drain on our family. We didn’t have the
resources of money, time, family support, etc. to be good parents to my daughter
and a child with Down syndrome. I didn’t want to bring a child into the world
only to suffer. These feelings were substantiated by the medical
professionals involved in my care. They universally agreed that terminating was
the right decision. So we made the choice, and I had the procedure. My grief
About one year after the termination, I was again
pregnant. I thought that perhaps we could finally move past the pain of losing
our baby. The pregnancy was smooth, an amnio proved that the baby was healthy
and that there were no chromosomal abnormalities. Everything seemed great. But
at 22 weeks I went into labor, and the drs. were only able to stop it for a few
weeks. My precious son was born at 25 weeks due to incompetent cervix, and both
my OB and the perinatologist agreed that it was a direct result of the
termination procedure. There was no other explanation. After months in the NICU,
too many complications to recount, various surgeries and painful procedures, my
son finally came home. And I was reminded everyday of the fact that my baby’s
health issues and delays, his numerous special needs, were a direct result of
trying to prevent having a baby with special needs. The irony continues to
But what I have learned in the 5 years since he was born
amazes me more. I have learned that I do have the strength to raise this
child. That yes, the drs. appts. and therapies which at the beginning seemed
all encompassing, fade into the past as he grows older. I have seen my daughter
grow beautifully into a compassionate and loving person. The experience of
having a brother with special needs has exposed her to something that I always
said I would teach my children. That different isn’t bad…that what makes a
person beautiful isn’t what you can see with your eyes. In the NICU, and since
then at the children’s hospital, in specialists’ offices, at the early
intervention center, in school…I have seen that children with Down syndrome, and
other special needs are not burdens to their parents. These families have
challenges, sure, but they also have joy. Their lives are more “normal” than
not. I have seen the pride on parents faces (and felt it myself) when a goal
that comes easily to others is finally mastered. I have heard stories and
witnessed myself marriages and families strengthened and enriched. I have seen
that kids with Down syndrome, one of whom is now my son’s best friend, are
absolutely not suffering. My son’s friend runs and laughs and plays, tells
jokes, and is reading. He loves freely and fully. He had the same heart defect
as the baby I terminated…and after surgery he was out of the hospital in a week
and has never had any other complications.
I am not sharing my thoughts
to cause pain to any members of this board. But I have nowhere to go with the
guilt and pain I feel for the decision I made. I do not just regret being put in
the situation; I deeply, and painfully, regret the choice that I made. And I
think that even though the majority of people who post here seem not to struggle
with that feeling, I know that I can’t be alone. I wish that I would have
actually talked to parents of children with Down syndrome. Because one thing I
know for sure—as capable and helpful as my son’s drs. and therapists are, not
one of them can really know what it is like to be his parent, and to see the
love that he brings to our family. My son’s needs in fact are greater and more
complicated than most of the children with Down syndrome that I have
encountered, but his life still has value. I never would have imagined myself in
this position…and I didn’t think that I, or my marriage, or my daughter, could
come out stronger for it. But we have. And now after the time I have spent with
these children and their families, I don’t at all consider them fanatics. But
advocates for the kids who have brought so much love to their lives. And I can
also say unequivocally that these children and adults with Down syndrome “have a
life”. As far as what NICU nurses and neonatologists would advise, after
practically living in the NICU for over 3 months, I have no doubt what they
would, and do say…Down syndrome is nothing compared to what so many families
experience. These children can and do have a great quality of life and
contribute to their families and communities, and are not considered a burden
even by their adult siblings after the parents are gone.
I am not
posting this to cause pain to anyone on this board. But I also cannot just sit
back and not express my views on this subject. I do not judge anyone here,
including myself…I know that we all made the best possible choices with the
information we had. But I have lived both sides of this issue. I have terminated
for T21 and now am raising a child with special needs. I wish I had known then
what I know now."
As many of you may also know I support an organization called IDSC for Life. The organization is prolife from the standpoint that they feel all women have the right to recieve up to date, factual information regarding the diagnosis before making a decision, and that they should not be pressured by professionals that don't have a clue what it is like to love someone with Ds. Their mission is very important to me. They are amazing advocates for all individuals with Ds and do a great job of spreading the word that 'All Life is Precious'. Visit their website at www.idscforlife.org .
We have had several weekends of fun, but we are ready to get settled into our new fall schedule. We like seeing new things and going new places and having Will hasn't really changed that. We hope by exposing him to different situations and environments it will challenge him to be easy going and tolerant, since he can sometimes get upset when things aren't like he is used to. He usually tolerates the challenge and has fun doing so!
Will went apple picking with his friends.
This is a huge accomplishment for this kid. Not only is he eating something he normally would not, but he is holding it himself while doing so! Peer pressue is great!
Will watched the Buckeyes game with his friends Mason and Harper. We are sad we don't get to see our Colorado friends more often...so is Harper:(
Will played on the giant turtle and the hill slide at the OSU arboretum in Wooster on Labor Day. He had lots of fun with daddy and aunt Amelia.
Then for the first time ever, Will stayed overnight with Gaga and Papa so that mommy and daddy could have a night away. Will was sick and grumpy but he survived...and so did Gaga and Papa!