Wednesday, October 18, 2017

To get an update on Kate and our families' journey, go to We have made a Promise to Kate to provide research, care and support and it is through our Foundation, Promise to Kate, that this promise has become a reality. Still striving to live one day at a time, love generously and laugh often!

Friday, April 1, 2011

Kate Walking and Dancing

For over a year after our daughter was born, we watched her very, very slowly develop...then, a month after her first birthday, our little girl decided she just wasn't ok with laying around anymore. She became a fighter and has worked so very hard with her therapists and us to sit up, crawl, stand, squat, kneel, communicate, dance and finally walk. She still has a long way to go to become independent, but we are rejoicing in every moment that leads us there. Enjoy!

Wednesday, March 30, 2011

Promise to Kate Team

Thank you, thank you, thank you to all of our amazing family and friends who came out sporting their black and hot pink shirts and raised money for team Promise to Kate for the MDA Muscle Walk this past Saturday. Promise to Kate raised over $4,000 and won two trophies for most walkers and most team money raised. Using her walker, Kate led the team along our short stroll through the mall. She even showed off some of her independent steps as a warm-up for her team! A special thank you to all of our supporters!

PS- I think Kate really enjoyed the walk. She took 39 independent steps in a row on Tuesday at her PT session. She was trying to get the cuddly bear that mommy was holding with Ms Penny following behind her to brace for falls....only she didn't fall, she regained her balance all by herself each time she wobbled and made it across the house and down the hallway! A HUGE accomplishment for her and she hasn't been able to replicate it for daddy, but I know it is only a matter of time. I think it is fair to say that she LOVES her Physical Therapist, Penny...she will do anything for her!

Monday, January 17, 2011

The Club

I am a member of a club here in town. It's priveleges aren't that great, they don't serve you food and they keep it a little too cool in their rooms, but, as my MawMaw says, "It beats the alternative!"

I became a member after Kate was born and apparantely, 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, babydolls 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 sugery, or walking their balding toddler down the hallway, making sure the iv 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 MawMaw 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 privelege 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.

Wednesday, December 8, 2010

The Blog Running Inside My Head

It's quarter to four, my house is quiet....just the sounds of a snoring dog and the rhythmic breathing pattern from my two sleeping children (yes, Charlie is actually taking a nap!), so I decided this would be an opportune time for me to blog. I could update you on everything that has happened since Kate's party in May (the last time I blogged), but have decided to share with you my feelings about our life.

Like any mother, wife, employee and woman, I am constantly making decisions that affect not only myself, but those I love. Decisions about working, decisions about schools, decisions about spending, decisions about caretaking, and last but certainly not least, decisions on dinner every night. I have always been a rather laid-back, easy-going person, so decision making is tough for me. Sometimes I love the decisions I make and other times I hate them. Such is life!

I made a decision about a week after Kate was diagnosed with Congenital Myotonic Muscular Dystrophy. I decided that I would not let this diagnosis "beat up" my family. I decided that we would take on a family motto of live one day at a time, to laugh often and to love generously. Now, I don't wake up ready to live, laugh and love every morning, but I make a conscious decision every day to strive to live, laugh and love. In order to accomplish this, I have had to let go of many things I once deemed important. I've turned down numerous offers to "get away," decided that wearing the same old clothes day after day is not so bad, lost touch with some circles of friends, turned my dining room into a dining room/playroom/therapy room, live in a messy house and love my dog (through my children's eyes...unconditionally), even though he sheds more than any other dog I know.

Sure, it would be nice to go to work somedays, make some money, have nice clothes, take "girl" vacations, buy a bigger house (that comes with a Roomba vacuum), but in the end I have decided to BE HAPPY IN THE NOW. It's not easy to live one day at a time, laugh often and love generously, but I know that this is the decision I must make on a daily basis to ensure that my family comes out victorious. I also don't want to find myself years down the road, looking back at these days, realizing that the busy, fast-paced days of life kept me from truly enjoying the moments.

I'll leave you with this one side note...I received a note from one of my former students today. It said, "Dear Mrs. Conte, You have been my best teacher I have ever met. When I first met you I was really happy. You have taught me alot and I hope you do the same to other people. Love your best student." Well, little friend, you made my heart smile today. Thank you for reminding me to live, laugh and love.

Thursday, April 22, 2010

Happy Birthday Grandpa & Kate and Thank YOU!

What a celebration Saturday night! About 200 friends and family members joined us for an evening of food, laughter, tears and even a little education, as we celebrated the 70th birthday of my father, Lansing J Roy, and the 1st birthday of our baby girl, Katherine Elizabeth. It was a very emotional night for us and we felt so much love and support. From the 30 or so children dancing and eating cake to the lifetime friends of our families, we enjoyed seeing so many friendly faces. In lieu of gifts, we asked guests to make a charitable contribution to the Myotonic Dystrophy Foundation, with 100% of this being earmarked for research. We were completely blown away when our final tally was done....we raised over $13,000 for research! THANK YOU FROM THE BOTTOM OF OUR HEARTS! We are hopeful that by the time our Katiebug reaches her 18th birthday, that great research advancements will prevail and that she will have every chance at a promising, strong future!
Our Myotonic Dystrophy specialist, Dr. Tetsuo Ashizawa, of the University of Florida (Shands) in Gainesville, attended and served as our guest speaker, educating our guests about Myotonic Dystrophy and research progress. We were thrilled that he, his wife and precious daughter were able to join us for the party. A special thank you to Theo Kouremetis, our friend and chef, who whipped up a fabulous spread of appetizers and gourmet dinner. Delicious! Special thanks also goes to Haley Alvarado for photographing the event and Jeff Green for recording the program. We would also like to thank our friends and family members who helped up set up, cover the children's room, borrow decorations, create a well-wishes book, run for ice, serve drinks and clean up! We couldn't have done it without you.

For those of you that know me, I am teacher by trade, and many of my teacher friends were in attendance. If you are interested in reading a blog from the "teacher" perspective of the event, check out dayle timmons' blog. She was and still is my teaching mentor and truly has a way with words!

Many of you had other obligations and missed the party. We will be posting a recording of the program on this site as soon as it becomes available. If you are interested in reading the poem "Holland" (that I tearfully read during the program) we will have a link on here as well.

We aren't able to announce the details about our future annual fundraising event just yet, but stay tuned....

Thursday, March 25, 2010

One Day at a Time

We are constantly reminding ourselves to live one day at a time. Sometimes this is easier said than done.

In February, we finally got to see Dr. Ashizawa, a neurologist who specializes in Myotonic Dystrophy, new to the University of Florida in Gainesville. We found him because he serves on the MDF board of scientific advisors. So, Dave, my sister Jenny, Kate and I headed to his clinic on a Friday afternoon, while Charlie played at Glamma & Jack's house. While I won't get into all of the specifics of the appointment, I can say that we left with a real sense of having just talked to an EXPERT...the first doctor that knew EVERYTHING about this disease. The appointment was filled with honest information, some of which was hard for us to hear, but we left with great hope for our family's future. We could tell this man was dedicated to helping the Myotonic Dystrophy community and to finding a cure.

About a week later, my dad's DNA test results came back with a positive diagnosis for the disease. While we were glad to find the source of the gene, it was still difficult to come to the realization that my dad had it and that I had it too. We are ever so grateful that my dad's symptoms are minimal and that is a big thing since he turns 70 in April.

Soon after this, we decided that we would unite as a family and fight back against this disease! So, we have decided to throw a BIG BIRTHDAY BASH to celebrate "Grandpa's 70th Birthday and Kate's 1st Birthday" and put a fundraising purpose behind it...Research dollars for the Myotonic Dystrophy Foundation! We are so excited about this kick-off to our fundraising adventures and can't wait to celebrate with all of our family and friends on April 17th. If you would like to make a donation to our cause, we would appreciate it!

So, here we are....trying to live one day at a time, but still planning for the future!