It is hard to believe that it has been eleven years since our lives were changed forever - for the better, although we did not know that at the time. We went to our ultrasound so excited to find out the gender of our two miracle babies. “One of each….” Yes please! But there were problems - we knew before she told us. The ultrasound tech was too quiet, too serious, too focused and spent way longer on our daughter than our son. A specialist was sent in to break the news that there were signs that indicated there was a "genetic problem" with our child. She had extra fluid in the ventricles of her brain and a severe heart defect (unbalanced AV Canal defect). We were told, “We are so sorry. We suspect your child has Down syndrome.”
Our world shook. It
all seemed so surreal. We heard the
doctor talking but could not process what he was saying. “We need to schedule an amniocentesis to find
out for sure, before it is too late…” he stopped talking long enough for us to
catch up and ask "too late for what?" Patiently,
he explained “by law we only have a few weeks to terminate the pregnancy before
you are too far along.”
Those words must have turned on our “flight or fight”
response because we both immediately knew that this child was worth fighting
for! Even if it hadn’t taken seven years
of infertility and heartache to finally have a chance of becoming parents, our
response would have been the same: our child - any child - deserves a chance to
become all that they can be.
Having made our decision, we moved forward. We declined the amniocentesis and set up an
appointment instead to meet with a pediatric cardiologist to help our daughter
have the best chance at life possible. There were definitely tear-filled days
and sleepless nights, lots of prayer and research but we felt that God was
aware of us and that He had a plan for us and our sweet daughter.
Delivery day finally arrived (I was 38 weeks and had
been on bed rest for six weeks)! We were
excited and scared and overwhelmed. We
had been told that there was a chance our daughter would not survive birth
because of her severe heart defect and that if she did, she would be
immediately be rushed into heart surgery.
Much to the surprise of the many doctors and specialists present for her
birth, she was born “pink” instead of “blue” and was even stable on room
air! She wanted to prove to us right
away that she would always surpass expectations!
Holding her was a little bit of heaven. Everyone in the room was teary-eyed. She was a beautiful baby with gorgeous
almond-shaped eyes that brought a feeling of love to the room in an
instant. We knew she was a gift from
God. We felt an overwhelming desire to
love and help our precious daughter.
What we couldn’t know at that moment was how much she would love and
help us. Her love has helped us to see
the world through new “almond-shaped” eyes.
We find beauty and love in simple things and are reminded to slow down
and make every moment really matter.
If only we could have known then what we know now, that our
greatest “trial” would actually be our greatest blessing, we would have spent a
lot less energy crying and worrying and instead celebrated the chance to have her in our lives!
Being a parent to a child with Down syndrome is not easy
(due to a seemingly endless list of doctor and therapy appointments and the
extra patience and support needed for everyday tasks) but neither is being a
parent to any other child!
Our daughter has had to work a lot harder to learn how to
do things our other children took for granted such as: eating, talking, crawling,
walking, riding a bike, reading and writing. But being able to celebrate with
her when she learned how to do these things has been the sweetest reward
ever. We have learned that there is not
much that she can’t do if she is given a little extra time and support.
Because of her, we have had the opportunity to meet some
amazing individuals with Down syndrome, as well as their families. We were welcomed into a wonderful “family” of
support and acceptance. While all
individuals with Down syndrome are different, those of us who love them share a
special bond- our loved ones come with a little something extra - a bonus
chromosome. We hope that everyone in our society will come to recognize how
much individuals with Down syndrome have to offer. Those who have come to know Big Sister have realized that she is capable of much more than they realized.
We are so grateful for our journey through Down syndrome. We
are better people for having been involved in the Down syndrome community. We feel strongly that we are meant to adopt a
child with Down syndrome and know this would give us Double the Joy.
