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. Her head started getting noticeably bigger and my mother's intuition told me that something was not right (the bones/sutures in her head had protruded when the fluid went down after her birth and I began to notice that the bones weren't showing as much all of a sudden. Her head was actually looking good, but then I realized that it had happened too fast. The doctor had told us it would take months to fill in). The shunt replacement went well and she was only in the hospital 3 days.
During that week of trying to figure out if something was "really wrong" with her shunt, I realized that this would be a struggle I hadn't anticipated. Going back and forth in my mind......do I call the doctor or not......is something wrong......is this just a typical childhood illness or new behavior.......or could this mean something is up with her shunt, or could it be tethered cord or a bladder infection or........???? 
When you have a child that has various medical issues, it opens up a whole new world of responsibility for me, her mother. Trusting my instincts, calling the doctor to ask questions, checking on her more often at night, not wanting to be paranoid or over-protective but needing to be "in tune" to her is such an interesting dilemma. I was told that a simple cold or ear infection could turn into a shunt infection. A bladder infection could do the same. How do I not worry 24 hours a day? I'm hoping that it will get easier in time as I get to know "her normal" and learn to trust my instincts.
She has been an amazingly healthy child. Only a couple colds and not even 1 ear infection! (Her brother and sister had plenty of those!!) She did start having UTI's (bladder infections) at 9 mos. old. Soon after, we started catheterizing her 4x a day. I was so scared to have to cath her, because I had seen several nurses struggle to do it. 
But it really isn't that hard at all and it's just become a part of our day. Cassidy had 15+ UTI's in one year, but they have finally started to slow down in frequency. I've been trying some new vitamins and alternative treatments to see if that makes a difference. She doesn't have reflux to her kidneys at this time, but that could be a problem in the future. Click on this link or the picture of Cassidy in her high chair to see another poem I wrote on her birthday.
Cassie is 17 mos. old now! In a way, it seems like just yesterday when we met her and started this journey. But it also seems like it has been years!! She was a sweet, mellow and peaceful baby from the start. She is always happy and smiling. She is so completely bonded with us and her eyes sparkle 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. I look at her now---reaching her arms out to me and calling me 'Mama' a hundred times a day, and can't believe I ever worried. God has been so good!! She is the most precious child and again, I wouldn't trade her for the world. Of course, I would rather that she didn't have to struggle through her life and endure pain that most of us don't have to bear. But I know that she is strong. I know that she will thrive. 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 life!
She wears little AFO's to help her ankles bear weight and we go to PT once a week. She has a swivel standing frame to help her get used to standing on her own. She learned how to sit up at 9 mos., how to crawl at 14 mos. and this week she started trying to pull herself up to standing by the couch! We definitely don't take all the little accomplishments for granted with Cassie. From the first time she squeezed our finger, to her first amazing smile (that was my sign that she was going to be just fine!), to her first real bath without casts!! Each new thing she does is such a big deal!
There are weeks when the doctor appointments get a little overwhelming and keep us very busy. But life has calmed down a lot, and we're getting used to our "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.
Well, to make a long story short, Cassidy Anne is the perfect addition to our lives. Three years ago, when we were told we'd never have another child, I didn't feel that our family was complete yet. But it became complete, the day I wrote Cassidy her poem and welcomed her into my heart, no matter what.
This is what we have learned the last two years:
This journey of life, that we all are travelling, 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. 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! Thank you for reading our story and
sharing in the joy of our gift, Cassidy Anne.
Click Here to See A Writing Dedicated to Mothers of Special Needs Children
Click Here for a Poem Dedicated to Fathers of Special Needs Children
Click Here To E-Mail Cassie and Her Family
mom2jjc@msn.com
| Previous Page
|
Home
|
Back to Poem
|
|
|
|
