I have thought about starting a blog for a couple years, but
I never felt like I would have anything to say.
I am a typical mom to a wonderful 2.5 year old daughter Ellee, married
to an amazing man Mike; we live in a typical place, and do typical things. I am not a journaler, nor do I love to write,
so starting a blog never really made much sense. Now things have changed, I want to remember
and share my experiences.
In March we were thrilled to discover that we were
pregnant. We told all our family and
close friends. I did all the things I was supposed to do,
with prenatal vitamins, eating right, exercising. We made plans for how our life would unfold with
another precious child in the mix.
At twelve weeks, I went in for the widely offered genetic
screening, so we could check those ‘unlikely’ worries off the list of possibilities. When the nurse practitioner came in to
discuss the results it was evident very quickly that something was wrong. Our precious child had a nuchal fold
measurement well beyond ‘normal range’.
We were being transferred to a perinatal specialist for ‘further testing’. I managed to ask if this was only a concern
for Down syndrome or if there were other possible problems. She responded simply with “there are other
concerns as well”.
We spent the next four days researching on the
internet. Looking for stories where this
‘screen’ resulted in a healthy baby.
Surely the test was wrong. Surely the ultrasound tech made a mistake. Surely
everything is fine. At the same time,
trying to ignore the pit in our stomachs, ignore the deep fear, and ignore that
there are some very horrible possibilities.
We talked to close friends and families, asked for prayers from them
all, and tried to remain calm until we knew something for sure.
On the fourth day, I got a call scheduling the parinatal
appointment. I was told we would see a
genetics counselor then have a possible CVS.
WHAT?! I was convinced this was
okay, that the test was wrong. Why were
we meeting a genetics counselor?! Again,
we tried to ignore the concerns and remain calm until we knew something for
sure.
On the seventh day, with great dread, we made the 1 hour
drive to the appointment. We met a
wonderful lady, our genetic counselor.
She was compassionate, informed, professional, intelligent, she listened
to our concerns, was quick with facts delivered in a simple way, realized my
husband and I were both biologists and understood genetics and quickly adjusted
to talk on our level. She told us our
options and the possibilities. 50%
chance of chromosomal disorder most likely (T13, T18, T21, or 45X); 25% chance
of a genetic problem associated with a single gene which the 200 most common could
be tested through a microarray. This would most-likely be a heart problem; 10%
chance the nuchal fold measurement would continue to grow and the excess fluid
would kill the baby sometime during gestation, 15% chance we would not find
anything wrong genetically and we would have to wait until birth for a
diagnosis or confirmation of a healthy child.
We both knew that we needed to have a diagnosis, so we could
prepare for what we were facing. We
agreed to the CVS despite the small risk of miscarriage. For me the procedure was more emotionally draining
than physically painful. I didn’t feel
much and it was over quickly. I had a
little cramping but it didn’t feel much different than the pit of fear that was
already there.
We went home to wait.
Again, we tried to ignore the concerns and remain calm until we knew
something for sure. I must admit, that at
this point I lost the battle and fear definitely took over. I made the mistake of Googling T13 and T18
just before bed. I couldn’t sleep and
when I did I had terrible nightmares. I have always been a firm believer in
God, and at this point I had my first ever crisis of faith. I know God does not make mistakes but maybe
he did this time. I had to consider if I
would terminate the pregnancy if the diagnosis was a condition not conducive to
life. Would it be best if a miscarriage happened?
What can I handle? What can Mike and I handle
together? How will this affect Ellee? I’m
only 30, Mike and I are healthy, how can this be happening?
On day 9, Mother’s Day, Mike and I really discussed our
feelings. We both didn’t know what to do
or think. We both agreed we were ready
for the news, we could accept it if the pregnancy ended naturally, we hoped it
would be nothing, and agreed that we could handle Down syndrome.
On day 10, I waited at home all day because I didn’t want to
miss the call or have to discuss the results in the grocery store. It was the longest day of my life. Mike was at work and Ellee and I waited. At nap time my mom called and we talked and
she tried to keep me distracted until the call came. Mike felt the need to come home and arrived
seconds before the call completed. We
had a diagnosis, T21 Down syndrome. It
is a girl, our second daughter and a sister for Ellee!
Mike and I both felt an overwhelming sense of relief. We knew we could do this, we knew what we
were facing, we had a plan. We were
still scared but we could mentally rearrange our life plan and realize it
wouldn’t be all that different. I know
there will be many emotional ups and downs throughout the pregnancy and
learning to manage our daughter’s needs but for that moment and ever since I
have been mostly relieved.
Over the last few days we have been taking time to relax and
calmly educate ourselves about the special needs of our baby. We are not out of the woods yet. There is a chance of miscarriage throughout
the pregnancy. She may have heart,
kidney, or intestinal problems. But no
matter what, she is ours, we love her, we want her, and she will be a blessing
to our family and friends. We have told
our family (directly or through our parents) and close friends the diagnosis,
all of their reactions have fully justified our love for each and every one of
them. They are supportive, see the
blessing as it will be, see that Mike, Ellee and I have the strengths between
us to meet this challenge, with love, patience, empathy, and strength, and most
importantly with God’s ever present support.
The best moment so far was when we named our newest
member. I made a list of ten names, Mike
liked one the most, and Ellee approved.
Our special, precious, baby girl is Katherine, Katie for short. I never understood the saying that names have
power, but now I see. Katie is not a
baby with Down syndrome, with her naming she has become an individual, she is
mine. She will be mine if she lives to
100 or if she doesn’t even survive to birth.
She is mine and my families and she is God’s. He knew who she was and her name before I
did. He is in control and he knows what
he is doing.
It is now day 12 since we first had an indication of a
problem and it has been a whirlwind of emotion.
In looking back I can see God’s hand in every step. He knows me, Mike, Ellee, Katie and our
family and friends.
1.
He knows we needed to know. Mike and I are planners and we can do
anything if we know what we are facing.
We were very close to not getting an ultrasound picture of the nuchal
fold, he prompted the ultrasound tech to try one more time, and now we know.
2.
He knows our family and friends would be
understanding, strong, and supportive.
3.
He sent us to the correct genetic counselor who
could reach us on our level and help us make informed decisions.
4.
He stood by my side during my crisis of faith
and now I can see I was wrong, he didn’t make a mistake.
5.
He allowed us to have nightmares so that the
diagnosis would bring relief.
6.
He had the diagnosis come through during nap
time so we could process without Ellee looking on.
7.
He sent Mike home to me so he arrived before the
call was over.
8.
He led us to pick a name so we could bond with
our precious Katie.
9.
He has given us Ellee who will be an amazing big
sister. She is the most empathetic child
I have ever met. She is gentle, happy, and
caring. She can do this too.
10.
At my age, 30, it is only a 1 in 952 chance of
having a baby with Down syndrome. He
gave us this child at an age when the odds do not make me feel I tempted fate
by waiting too long.
11.
He has blessed us with a church family that has
become an extended family. They are
prayer warriors and servants. They have
watched Ellee for our appointments and have already offered to continue as well
as do anything else we need.
12.
He has blessed us with family and friends that
will do everything they can for us including crying with us, praying for us,
calling and checking on us, doing research to educate themselves and help us.
13.
Mike has a flexible job, with an understanding
boss and coworkers.
14.
I am a stay at home mom and I can dedicate my
life to raising our daughters.
15.
There are amazing resources online both factual
and personal. There is an overwhelming
sense of families being blessed in ways they never imagined. Mothers that are ahead of me on this journey
have written thoughts about what they wished they had known at the time of
diagnosis. All of them wished that they
had been joyful, because the future is bright and happy.
16.
We already have several offers from friends of
friends with children with Down syndrome who have offered to meet with us and share
their experiences.
17.
He knows we can handle this challenge and he has
given us everything we need and will be with us every step. Katie is worth it. Although it will be hard, we will be blessed
every step of the way.
