Thursday, April 7, 2011
TEACHER for a DAY
Last week I was asked by Ashley's Child Development teacher at Highland High
if I would come in and
talk to a couple of her classes about my two children. In her class they have been
learning a little about birth defects and so she wanted me to talk more about
Hydrocephalus and Down Syndrome and then answer any questions the kids might have.
The first class I "taught" was very quiet. This was the class that Ashley was in so I don't know if this affected them not asking any questions or not. I started out by showing a tape measure and saying that most newborns are born with a head circumference of about 38 centimeters and Ashley's was 46 at birth. They had to
use forceps to get her out even with a c-section. I then passed around pictures
of her the day after she was born before they life-flighted her up to Primary
I asked them if they knew what HYDROCEPHALUS was and someone said "water on the
brain". I said "it's really cerebral spinal fluid that is blocked for some
reason and so it fills up the ventricles in the brain". There is no cure yet
but how they treat it is they insert a SHUNT that will drain the fluid.
In Ashley's case, when she was 24 hours old, I told them they drained off 11
ounces of fluid from her head,so I held up a can of Coke. She weighed 9 lbs.
at birth but they figured a pound of that was her head. I then showed them a picture of a shunt appliance and a shunt system and passed that around.
I then proceeded to tell them that about two years later I decided I wanted to
have one more child. I had felt that since Ashley's birth was so traumatic
and it was such a shock having a child with a birth defect that this would
be a good time to have one more "normal baby". I told them that God apparently
has a great sense of humor because we found out that this baby
would have Down Syndrome, so much for "normal". We then found other things
wrong through ultrasound and then at 20 weeks we were told to abort him.
He had a growth on his neck that was bigger than his head and the doctor only
gave him a 10% chance of making it to birth. We were told that in the state of
Utah we had until 22 weeks to abort. I asked if there were any risks involved
with carrying him for me and he said no---it was awful having to go home and
us feeling so alone.
I told the class that I would never tell any woman what to do with her body, but the sad thing is that over 90% of babies that are "found out" to have Down
Syndrome nationally are terminated. In other words, an early test that is not
conclusive and can be a false positive, is causing women for whatever reasons
to abort babies for fear that they MIGHT have Down Syndrome. Now, I know how
felt when we found out about Nathan. I was pretty overwhelmed, all I could
picture was a grown man with it and not a cute baby and I honestly thought,
"no one will ever think MY BABY is cute". What I told the class though is that there are a lot of couples that are waiting to adopt special need babies and
that someday we may not see kids with Down Syndrome anymore not because there
is a cure(there isn't) but because they have all been aborted.
So then I held up a picture of Nathan when he was just a few months old on
oxygen and said "So this is what they told us to abort" and they all went "Ohhh,
How cute!" I then showed a picture of him now, a compilation of some of the
photos from when he was the captain of the football team and passed them
around. Like I said, Ashley's class didn't ask any questions but the other
one did, and some very profound ones at that.
How long does someone live with Hydrocephalus or Down Syndrome?
H-It depends on if they have other disabilities, if none, then can live a normal
DS-Some until 50's or their 60's depending on health problems, they tend to
develop diabetes, heart disease,and Alzheimer's early in their 30's to 40's so
this can affect their health and lifespan. I have often "joked" (what else can you do) that the 3 of us, me,Joe and Nathan will all end up in a rest home
together with Alzheimer's but it won't be very fun because we won't remember
that the other 2 are there!
How do you afford the surgeries or treatments for your kids? (Ashley has had 13
surgeries so far)
When Ashley was 3 months old, I lost my job as a nurse and I carried the insurance.
This was very hard for us but then we got her on medicaid when we had Nathan we put him on too. I told them that a lot of parents go into debt or even lose their
homes due to the high cost of paying for their disabled children and the costs
that come with it.
We make too much money now for medicaid and are still trying to pay off a surgery
she had almost 2 years ago.
I also told them that not only is it hard financially on couples but on their
marriages. 80% of couples of disabled children will divorce because of the stress,
either because of finances or emotions.
What are the chances that someone with Down Syndrome will have a child with
This was a great question! I really didn't know the incidence of DS females having
children with DS, I do know that a few moms I know have 2 children with DS
but the mom doesn't have it herself. I told them that some parents opt to
have their daughters sterilized because they don't want them to get pregnant
because they feel that they would not be able to take care of a baby if they
should. I explained to them that there is a high incidence of abuse of
special needs people and so this is a concern also.
In males, they have low testosterone, and so there has never been a documented
case of a male ever fathering a child. I told them that Nathan loves children
and talks a lot about being a father someday. I said I truly believe that
he will someday be a father(without getting into the spiritual aspect of things).
What will you do with your son if he outlives you?
I said that our kids have offered to take care of him and even Ashley if
necessary but that we will try to get him in a group home if we can, especially
if that's what he wants. Depending on what happens with her, they may end up
living together also.
What can we do to help these kids?
Another great question! I talked to them about becoming a paraeducator in
Special Ed like my
daughter Alisa was at Hillside Middle school where a lot of them had gone.
Or going into Elementary Education/Special Ed. like my daughter-in-law Annie
did. I said the biggest thing they could do was BE THEIR FRIEND.
Ignorance is the worst thing. Don't be afraid of the unknown. High school
is tough for everyone. WE all need a friend. When we had Ashley, people we
thought were our friends disappeared. People sent me flowers like my baby
had died and hardly anyone said congratulations. The nurse that was assigned
to me wouldn't take care of me because she was pregnant and she couldn't look
at pictures of Ashley. But there were a few that rose above it all. That
called or came by. They said congrats and they called her by her name.
I told these kids that when things happen in life to them or their friends
that sometimes they may not always know what to say or do, but the important
thing to do is SOMETHING. Remember their friends, because everyone NEEDS A FRIEND.
I ended it telling them that 2 weeks after we had Ashley, Joe's nephew, who was
only 18 at the time and his girlfriend who was 17, had a baby. A healthy baby boy.
I remember thinking, I am really glad that out of the 2 couples, I'm glad that
it was Joe and me that had the baby with some problems. As hard as it was at
first, we were at a better place in our marriage and in our life to handle
it, and I am grateful for what that has taught me about appreciating the
little things in life and what matters most.