I wrote this poem several years ago, as I sat in Wolfson Children’s Hospital during one of Kate’s stays:
I am a member of a club here in town. Its privileges aren't that great, they don't serve you food and they keep it a little too cool in their rooms, but, as my Maw Maw says, "It beats the alternative!" I became a member after Kate was born and apparently, will be a member for the rest of her life. Memberships to this club aren't sought after and cannot be bought, only earned by your experiences. Through each of my experiences here, I have watched the other members come and go... carrying laundry, snacks, baby dolls and trucks... up and down elevators.... often wearing the same wrinkled clothes...always looking tired. The most common attribute they carry though is stress. It's painted on their faces and even when they smile, the worry is still visible. The levels of membership here vary and I am relieved to say that my level isn't nearly as advanced as other members I have seen. I THANK GOD EVERY DAY FOR THIS! I watch as the more "advanced" members rock their non-stop crying child to ease the pain, kiss their baby before he leaves for open-heart surgery, or walking their balding toddler down the hallway, making sure the JV pole stays within reach. I'm as sensitive as they come and it is always very hard to watch all of these other members worry so visibly, all the while carrying my own smaller level of stress. During our visits to "The Club," I lay awake at night and listen to the other members' babies’ cry and moan and whimper. I listen to mothers singing sweet lullabies. I listen to beeping.... lots and lots and lots of beeping! I listen as doctors and nurses explain and console other members. I learned that some members don't come to the club and stay with their child. They are invited, but for whatever reason, their child lays here 98% of the day and night alone. The nurses and doctors are far too busy to hold their hand or sing soothing songs all night. They must tend to everyone's needs. Ouch...this really hurts to watch and hear! I'm not sure this is something I'll ever get accustomed to watching, listening and feeling, but I can tell you that these experiences always make me... GRATEFUL. I tell myself often, "it could always be worse" and my Maw Maw is very right..."This beats the alternative." While my baby often gets sick and every now and then, really sick, she has so many days of being healthy and happy. I get the privilege of loving on her and playing with her every day. I get to hear her call me "Mama" and hold her sweet head against my chest and tell her that everything is going to be ok. I get to rock her every night and sing sweet lullabies, telling her that Mommy, Daddy, Bubba, Jackie, Jesus, G, Grandpa (the list could go on for days) all love her so much. I tell her that she is a strong little girl and that she can fight for her health, muscle strength and place in this world. I tell her that she can do anything she sets her mind to do. And day-by-day, I expect to see her do things that continue to make me laugh and love her even more. (Secretly, I even tell her that I fully expect her to challenge me during her teenage years.) Yes, I am a member of The Club here, but I wouldn't trade my daughter for anything else in this world. So, I proudly and often tiredly wear this badge of honor as her mother and will always be grateful for the precious gift God has entrusted in my care.
On May 11, 2009, Katherine Elizabeth arrived into our lives. We were ecstatic to see her dark head full of hair and her chubby cheeks for the first time. After a day full of joy as family members and friends stopped by to meet the newest Conte, we sent Kate off to the nursery for her daily checkup and we rested. We were awoken 2 hours later to learn that Kate was having some breathing, moving and blood sugar difficulties and would need to be transferred to the NICU at Wolfson Children's Hospital in Jacksonville, FL. Scared, heart-broken and unsure are only a few words to describe the next two weeks that followed. Over the next 12 days in the NICU, Kate made some progress and saw numerous specialists and therapists who really couldn't tell us exactly what was wrong. They used the term "hypotonic" a lot, which meant that she had very poor muscle tone and had difficulty moving her body parts. This affected her feeding so they taught us techniques that helped her feeding. We worked so hard at keeping her awake long enough to get what she needed. MRIs of the spine and head, EMG tests on her muscles, numerous questions about our family history, and blood draw after blood draw showed nothing that would give us a diagnosis. We took our baby girl home on Friday, May 29th and continued the routines we learned in the NICU.
At our follow-up appointment with her Neurologist 5 weeks later, we saw the concern in the doctor's eyes as he examined Kate and listened to what we were noticing. He ordered a DNA test for Myotonic Dystrophy and specifically told us not to go home and "Google" it. My husband, Dave, of course, did the opposite and by dinner that evening was showing me a website about a little boy who was affected and we knew then, in our heart, that was it. Six long weeks later, the doctor told us the news that Kate had Myotonic Dystrophy, that I was most likely the carrier and could be affected, and that we should consider not having any more children. Heartbreaking news to say the least! Over the next 3 days, we simply existed in our lives, completely depressed. We spent hours reading as much as we could about the disorder. As we sat eating dinner one evening, we finally realized that we just couldn't live like this anymore. We couldn't keep our heads buried in the sand. This thick cloud of depression needed to be replaced by some positivity. So, that night, we decided to fight back and provide the best care we could find for Kate. We decided that we needed to live everyday by our new family motto: Live One Day at a Time, Laugh Often and Love Generously.
Our Family Motto
Since that night in August of 2009, we have strived to live by our family motto and have watched Kate make great gains during her first 6 years of life. She has endured 4 days of therapy each week, countless doctor and specialist appointments, foot braces, a cast, two surgeries, eight hospitalizations, a pulmonology vest, oxygen at night, glasses and eye patching. We spent more time at her pediatrician's office during her first 5 years of life than we ever imagined we could because the slightest allergy or cold turned into terrible chest infections. She didn't have the muscle tone to cough properly and the slightest reflux was always a choking hazard requiring immediate attention. She spent the first 18 months of her life in a pack-n-play next to our bed for fear that we might need to rescue her during the night. As her muscle tone improved through therapy, she learned how to hold her head up, sit up, crawl, walk and even run in her very own way.
Kate, today, is a happy, curly-headed, little girl, who loves her family, dog, friends, Minnie Mouse, her baby dolls and having her fingernails painted. Her verbal communication has finally blossomed and she can talk your ear off. Her stuttering is still significant at times, but if you are patient to hear what she is trying to tell you, she can teach you how to sign almost anything. She begs to watch Signing Time DVDs daily. She loves to tickle and play wrestle and sincerely has a passion for music and dancing. She attends a ballet and tap dance class every Wednesday afternoon and begs for every day to be Wednesday. We have watched her perform at her dance recital in June for the past 3 years and cry happy tears as she persistently jumps and dances along with her classmates. She attends a public education school in Duval County in an inclusion classroom and LOVES her teachers and classmates. She receives her therapies through our local school system, having 5 appointments each week for Physical, Occupational and Speech Therapies as well as continues to see our private Physical Therapist to keep an eye on her development.
The Future for Kate
While we strive to live one day at a time, we are also keenly aware of what is coming down the road. The medical experts have told us that Kate will continue to make strides during her childhood years, but by her teenage years, the adulthood form of this disorder will begin to affect her. Her muscles will begin to deteriorate, making everyday tasks difficult and likely shortening her life expectancy. These are words no parent wants to hear and for us, we just simply are not ok with this prognosis! We have promised our little girl that we will do everything in our power to change this prognosis for her and for her MD friends who deserve to have a long and prosperous life! This is why we have started the Promise to Kate Foundation, promising to advance Myotonic Dystrophy research in hopes that there we will see treatments and ultimately a cure in her lifetime.
At the end of the day, we all need encouragement to keep fighting the good fight. We all come from different walks of life, yet we share a common bond that encourages us to ask questions, listen for guidance and support each other as we stroll through Holland.
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.