On February 14, 1998
(Valentine's Day!), a home pregnancy test confirmed that we
were expecting our third child!! What a fun and unexpected
surprise because we didn't think we would be able to have
any more children because of infertility problems.
At
21 weeks, we had an ultrasound, just for fun to see if we
were having a boy or girl. The excitement and anticipation
of seeing our child for the first time was abruptly
interrupted when the technician got a concerned look on her
face and said, "I'm afraid there is a problem........ you're
going to need to see a specialist today......there is too
much fluid in the baby's brain......this could mean other
problems......" The whole world came to an abrupt halt. What
had she just said? Was I dreaming? Did she say something was
wrong? What could be wrong? Could this really be happening
to us? Please tell me what's wrong!!!!
Reality hit when I felt my own tears. Little did I know,
they wouldn't stop for days. An incredible journey began in
that dark, little room. A journey that caught us all by
surprise and would take us places we never thought we would
go.
Later that day, a perinatologist confirmed that our baby
had hydrocephalus and spina bifida. He basically told us
that our child could end up being a vegetable in a
wheelchair. Retardation, no mobility, bowel & bladder
problems, learning disabilities, financial devastation,
marriage problems, too much for our other children to
handle..............he went on and on and on. I just wanted
to scream---"Stop! Be quiet! I can't listen right now. It's
too painful to let in. You can't throw all this at me at the
same time!" But he kept going and going. The world kept
caving in. He seemed to think it was his duty to warn us of
the worst possible scenario and convince us that we needed
to terminate the pregnancy. We kept insisting that we would
never abort, but that didn't seem to sink in for him. He
kept pressuring us. After a painful amniocentesis, my
husband and I literally had to pick ourselves up off the
ground and then walk out the door in what seemed like slow
motion. What do we do now? What are we supposed to feel now?
How do we just get in our car and drive home? The world is
going on like normal for all these other people bustling
about, but our world stopped a few hours ago. How do we
explain this to our kids, our family, friends....everyone we
know? We don't even understand what just happened!
During the next few days, several spina bifida websites
provided much information that was invaluable to us as we
learned about spina bifida and the realities we would be
facing. We read beautiful letters from parents, saw pictures
of darling children and all of a sudden, things didn't seem
so dark and scary. These kids were very normal looking and
the parents were so encouraging. There seemed to be such a
wide variety of outcomes for these kids----and a lot of it
was positive!! We didn't have to fill our minds with the
doctor's negative words. We could have hope!! We grabbed
that hope with every bit of strength left in us.
Three days after the diagnosis, I awoke sobbing from a
fitful sleep. But amazingly, these were not tears of fear
and sadness anymore. I sensed a new peace in my heart. God
had finally answered my prayers for acceptance of our
situation. I realized at that moment, that I would not
change our daughter for the world. I loved her deeply, just
the way she was. She and God had already changed us so
profoundly and she wasn't even born yet. I couldn't wait to
meet her and I knew, without a doubt, that He would give us
the strength to get through whatever was ahead. What a
wonderful feeling!! I got up at 6am and wrote my daughter
this poem:
http://www.geocities.com/cassies_site/Cassidy_Anne__Poem_pg2.htm
So now, years later, it's time for us to tell Cassie's
story and hopefully encourage other parents and families as
they face a tough diagnosis, but a wonderful future!!
The next three months of my pregnancy were not easy, but
it did give us time to prepare our hearts for what was
ahead. I had a lot of pain and contractions. I tried not to
be stressed about every little detail during the rest of the
pregnancy. I discovered that when everything was out of my
control, the only thing I could do was hand it over to God.
He would have to take care of her, because I didn't know
how. It was good to have time to do research, read books
about SB, write in my journal, etc...
Early in September of 1998, my doctors became concerned
about the fluid increasing in her head and at 33 weeks, they
decided to deliver her by C-section to prevent serious brain
damage. We had a couple days to prepare for her arrival.
Here we go!!
Cassidy Anne was born at 8:26am. She was 5 lbs, 10 oz.
(although she lost a whole pound of fluid in the first few
days) and she looked just like her brother and sister. It
was so wonderful to fall in love with her sweet little face!
She was no longer just the vague and scary concept of a
"serious birth defect". She was a precious, fragile little
being that needed our help desperately to survive and
thrive. Even though it was so hard to let her go after they
let me hold her for a minute, I almost felt relieved that
she was finally in a position to be helped by professionals.
They would take the best care of her. I needed them to help
her before I could ever care for her. Someday Cassie,
someday you'll be back in my arms and I'll never let you go!
She had surgery to close the lesion on her back and to
put in her VP shunt at 4pm that day. It lasted three hours
and went very well. Her lesion was at L3-L5 and they noticed
her legs were kicking a little. She had severe clubbed feet,
with the left foot being the worst. Her head was very
swollen with fluid, but the doctors assured us that it would
go down eventually and we would hope and pray for the best
---no brain damage!
The first few days were tough. She was completely
sedated, lying on her stomach with her head to the side to
protect her shunt. She couldn't open her eyes. She couldn't
squeeze our fingers. A ventilator was helping her breathe
and she was hooked to a ton of tubes. But she was alive. She
was breathing. She would get through this. So would we,
somehow…...
Five days later, we were able to hold her finally!! The
world stood still as the warmth of this precious baby
flooded my soul. I love you Cassidy! I can't wait to tell
you that and look deep into your eyes to show you. But for
now, this will have to be enough. For now, this will do.
She spent the next four weeks in the hospital. She had
healed well from surgery, but was now dealing with
prematurity issues. She needed to grow and learn how to eat
on her own. It was a tough time that seems like a blur now.
Trying to be with her as much as possible, yet still
spending time each evening with our older children was a
real interesting feat. My mom came from California to live
with us for 5 weeks to enable us to keep up with it all. We
could not have done it without her!
We brought Cassie home on October 6, 1998!! What an
incredible feeling to finally be under the same roof as a
family! Cassie's big brother Josh (8 yrs old) and big sister
Jamie (4 1/2 yrs old) couldn't wait to start loving on her!
Her orthopedist started casting her feet weekly to start
straightening them out. She assured us that she could make
Cassie's feet look better, but could not repair the nerve
damage already done. Cassie doesn't have much feeling from
her knees down and she doesn't have the use of her hamstring
muscles. But she kicks her legs and her hips are in good
shape! Her doctors and therapists think that she may be able
to walk someday (with AFO's, crutches, walker, etc.)
although they've told us that some of these kids do opt for
wheelchairs, especially at school, because it takes so much
energy to walk.
Cassie had a shunt revision when she was two months old.
The shunt replacement went well and she was only in the
hospital 3 days.
She was a sweet, mellow and peaceful baby from the start.
She was always happy and smiling. She was so completely
bonded with us and her eyes sparkled with adoration when any
family member gives her attention. Before she was born, I
was afraid it would be hard for her to bond with us when we
couldn't be with her all the time at the hospital. But when
she was a year, I chuckled b/c she constantly was reaching
her arms out to me and calling me 'Mama' a hundred times a
day, and I can't believe I ever worried. God has been so
good!! She is a precious child and I wouldn't trade her for
the world! Of course, I would give anything to take away her
struggles and the pain that most don't have to bear. But I
know that she is strong. I know that she will thrive,
despite tough times. I know that God made her special for a
reason. She has changed the priorities and outlook of so
many of us around her. We are all so blessed to have her in
our lives!
Cassidy got her first little AFO’s (braces) when she was
one year old.
They helped her bear weight on her weak
ankles and lower legs.. She learned how to sit up at 9 mos.,
how to crawl at 15 mos. and how to pull to stand at 17 mos.
Cassie had foot surgery on her left club foot in June, 2000.
The doctor lengthened her tight heel cord, moved tendons
around and even cut out a piece of bone. Cassie healed well
and wore a cast for 7 weeks. She's happy to be able to stand
again, but it will take a couple months to work up her
strength to try taking some steps with her new walker and
new AFO's (braces). She had made some good progress before
the surgery and was able
to stand and bear weight for a few minutes and take a couple
steps with a borrowed walker.
Yes, there have been periods of time when the doctor
appointments and therapy appointments get a little
overwhelming and keep us very busy. But life does calm down
into a "new normal". We pray every day for the strength to
be the best parents we can be for her, for wisdom to know
how to balance encouraging her independence and yet being
there to protect her and catch her when she falls, for grace
to forgive others when they stare or say the " wrong thing",
for the patience to let Cassie achieve goals on her own time
schedule, and finally, for the creativity to achieve our
vision of making her life as normal, fun and fulfilling as
possible.
A few months after she turned 3 years old, Cassidy began
to walk!! She didn't like her walker, and would only use her
crutches to hold out to the side to help her balance! Her
Daddy (who was sidelined on the couch for a few weeks due to
a bad knee injury and surgery) would bribe her w/ M&M's to
walk back and forth across the room! Soon she got the hang
of it and began walking everywhere (she only needs braces &
her twister cables). During the same time period, she began
talking! We were amazed that this little girl who could only
say a handful of words and a handful of signs, all of a
sudden began talking in complete sentences!
We have tried to make Cassie's life as typical and fun as
possible. One of our children has commented...." Boy, I
wonder how many other kids with spina bifida love to go
camping and play in the ocean and ride motorboats,
four-wheelers, motorcycles, bikes, alpine slides, and sleds,
like Cassidy does!"
One event that stands out in my mind is an incredible
moment in time over Memorial Day Weekend, 2001……. We were
camping as a family and riding in our boat across a
beautiful mountain lake. Cassie was insisting on standing on
my legs with her head peeking over the windshield of the
boat. Her long, blonde hair was whipping in the wind and she
was saying "WEEEEEE" and had a huge smile on her face!! I
looked over at my husband and said......."Boy, I wish God
could have given us a snapshot of this, three years ago, as
we sat in that dark, scary ultrasound room and heard the
"grim prognosis" speech from our doctors. I wish I could
have known then…… what we know now. I wish I could have
had a glimpse of her perfect little sweet face and heard her
whisper 'Hold me Mommy' as she squeezes my neck tight. But
the process and the journey of grieving, crying, praying,
searching for answers and finally surrendering our little
girl and her future to God was necessary……but yes, oh so
hard. Stepping out across that scary, unknown territory was
crucial to strengthen us and help us truly appreciate all
the good that has come out of the tough times. The lessons
learned about ourselves, this life, our faith and others are
priceless! This journey has been an unexpected gift.
Each night when Cassie gets tucked in, we tell her that
if all the 6 year old girls in the whole world were lined
up, we would walk for miles until we found her, and say "We
want THAT little girl!". And then she proceeds to tell how
she would choose each of us!
I
have to admit that I have dealt with some difficult emotions
along the way. There is the reality of a "chronic grief"
that parents of children with special needs experience at
times while raising that child. Certain time periods or
events may trigger those feelings of loss and grief to come
to the surface all over again. It did hit me again hard when
Cassidy was about 2-3 years old. Her limitations became more
apparent when we were around her peers. I would see a child
her age (or even much younger) running and jumping and
talking in complete sentences. It hit me hard and I felt
like a dagger was piercing my heart. There are days when I
let myself get concerned about what the future holds and the
struggles that are ahead with her education, bowel/bladder
issues, mobility and so much more. I get worried about what
exactly I should say when she asks questions about why she's
different from her friends and her siblings. Sometimes these
thoughts and worries are just fleeting, other times the
sadness lasts for a few days. It really does help to have a
good cry, say some long, honest prayers and slowly, the
strength to go on returns. God has been so faithful to lead
us and hold us each step of the way.
Last summer was a bit rough on Cassidy. She had a minor
surgery on her toes and then in July had a major abdominal
surgery and was in the hospital for a week. It was a rough
process to go through. Quite a bit of pain, meds and a 6
week recovery period. But it has gotten her on the road to
continence!! Her rewards were new underwear (which she has
never been able to wear before) and sitting on the potty for
the first time in her life (but she's glad she only has to
do it once a day!). Believe it or not, she wasn't too
thrilled with either of those things at first! But someday
she'll appreciate it! She had the ACE procedure done (stoma
in her abdomen which allows us to do a nightly bowel program
by putting warm water through an IV bag in order to flush
out her system). She also had a mitrofanoff procedure done
which created a stoma in her belly button which we now
catheterize her through. These are pretty amazing procedures
and they enhance the lives of many children w/ SB.
Cassidy is developing some sweet little friendships with
other children w/ SB. It's been so special to watch....and
so helpful! She knows she's not alone in different
struggles. When she asks questions about why she is
different or can't do the things other kids do....it is
really neat that we can discuss the issues in the context of
knowing others with it. She can list off all of her friends
who wear braces, and glasses, and get cathed, and have
surgeries, and take yucky medicine, and can't jump,
etc....then we talk about all the things she CAN do ~ like
worship dance class, swinging, horse-back riding,
four-wheelers, camping, bike-riding, boating, and so much
more!
This is what we have learned the last six years: This
journey of life, that we all are traveling, is not easy
sometimes. As we grow up, we imagine a "perfect
life"......we don't imagine that anything really tough will
come our way. When you first get married…..financial
troubles, children born with birth defects, marriage
problems, health issues, or the death of a loved one aren't
a consideration as we dream of our future. Those things
happen to "other people", not us. Then when life throws us a
"curve ball", our world can seem to come crashing down
around us. And it really does........for a time. I believe
that God, in His infinite wisdom, gave us a wide range of
emotions to help us deal with this life we are given. He
never promised us it would be easy, but He promised to help
us through. It's okay to allow ourselves to feel the
incredible sadness, heart-wrenching grief, loss, confusion,
anger and fear that accompanies tough, gut-wrenching times
in our life. Slowly, but surely, we will work through those
feelings and get to the other side. It may be a long process
and there will be a load of tears along the way. We've been
there, we know. It's not fun, but it is necessary. There is
a sunrise after the storm!!! But you have to open your eyes
to see it! There is acceptance, peace, anticipation,
laughter and true joy on the other side of the fog and
confusion. Hopefully, we will all be better people because
of our struggles. I hope we will care more, love deeper and
laugh harder because we will appreciate the "good stuff" we
are given. Please know that whatever you are facing,
whatever "curve ball" life has thrown you, YOU WILL MAKE
IT!! You will survive, you will even thrive!
Well, to sum it up.…Cassidy Anne is the perfect addition
to our lives. Seven years ago, when we were told we'd never
have another child, I didn't feel that our family was
complete, and I didn’t understand why. But it became
complete, the day I wrote Cassidy her poem and welcomed her
into my heart, no matter what. And the adventure
continues........
Thank you for reading our story and sharing in the joy of
our gift, Cassidy Anne.
For recent pictures and updates on Cassidy, please visit:
http://www.caringbridge.org/co/cassidyanne
Feel free to e-mail Cassie’s mom at:
mom2jjc@comcast.net
