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!

Saturday, February 6, 2010

How about those Contes?

Back to blogging again...finally! Dave and I had a date night tonight and went to see the movie "Extraordinary Measures." This movie was about a family with two children with Pompe's Disease, a serious muscular dystrophy, that in recent time has had a major scientific breakthrough in the treatment of the disease. We cried through the whole thing, but left with a sense of HOPE and renewed effort to not let Kate's diagnosis beat us!

Having said that, we also felt it was time to post our Christmas/New Year family letter. It's a little quirky, but hey, so are we and you truly captures us in real life. So, if you are up for the read, continue on and enjoy! (Just keep in mind Dave's saracastic sense of humor as you read.)

Hello to all of our friends and family. With the holidays and everything else we realized we have not updated our blog recently. We know you all are dying to know more about us. Heck, we can’t get enough of ourselves so we figured you all must be dying! In theory this can be counted as a sort of belated Christmas letter but only posted on a blog and not mailed to you. We learned over the holidays from some very good friends (or maybe not….hmmmm….may need to reevaluate that) , that Christmas letters about your family are very narcissistic and that no one really cares. Soooo, we stopped writing ours at that point and are just now picking up the pen again. We will only post on the blog so as to not assume that you want to read about us, but if by some chance you are at that point in life where you are sitting on the couch looking for something to do and your options are to stick a fork repeatedly into your eye or read this….well, we are now giving you the option.

As a family, we have grown larger and closer this past year. We were blessed to welcome our little Katherine (Kate, Katie, etc…) Elizabeth on May 11th, making us a family of 5 (counting our dog Jack of course.) Kate helped us make the gender number even while throwing off the balance for the grandparents (4 boys & 5 girls for the Roys and 2 boys & 3 girls for the Contes.) And speaking of the Roys and Contes…we have spent LOTS of time with them this year and have LOVED it! We spent a week in June with the Roys at the beach and a week in July with the Contes in the mountains this summer. We took a multitude of pictures and shared them on our family this blog site.

Dave is currently the Chief Technology Officer at the Schultz Center for Teaching and Leadership. When he isn’t working or fishing, he can be found wrestling and playing all kinds of things with Charlie, who simply adores his daddy. (In fact, when Charlie’s teachers ask him what he is thankful for at school before they pray, he ALWAYS says “my daddy.”)

Elizabeth (or Bissy for all you Keystone folks) is busy being a stay at home mother and loves her time at home with Charlie and Kate. As you many of you know the Doctors appointments and therapy sessions for Kate take quite a bit of time, patience and juggling. The hope is that with time the medical demands for time will decrease. In her spare time (yeah-right!), she has been teaching some online courses.

Charlie turned 2 in February and started preschool in September, attending 2 mornings a week. This has definitely been a year of “adjustment” for Charlie, learning how to be without mommy and share mommy time with his baby sister. He just adores Kate though and is such a good helper. He often asks to hold her and loves to sing and talk to her. He is ALL BOY and full of boundless energy, so he really looks forward to daddy coming home after work to PLAY, PLAY, PLAY! Charlie has excelled in riding his tricycle throughout the house at full speed narrowly missing walls, dog and toes. Now, there are times he miscalculates his speed and distance which can lead to disastrous results. In typical Charlie fashion he gets a bit of a stunned look with the occasional whimper. At first you think it’s because he is scared and possibly injured but no, generally it’s because he is in shock that he didn’t make the turn (or that his last minute braking is ineffective when combining wood floors and plastic wheels). In Charlie’s head he lives and dies by the “if at first you don’t succeed, try and try again until you do.” We just fear the tricycle wipe outs are only going to lead to more dangerous adventures as he gets older.

Now, Charlie really is a neat kid (seriously, just ask his parents but whatever you do don’t ask Uncle Dana. He is glad he’s not his ;-)! What we as parents are trying to figure out is where on earth did he get his sarcasm, shit-eating grin and well, most proudly, his foul language. We are stunned and really investigating this matter. Must be school…right? OK, it’s his mother! We are really trying to nip the foul language part. Dad just has to stop hurting himself with tools and watching FSU football in Charlie’s presence. We are looking forward to a wonderful life with Charlie as our son and can only sit back and join the wild ride that we are sure he is going to take us on.

Katherine has just turned 8 months old and is such a sweet, gentle baby girl. Many of you know that she had problems at birth and was diagnosed in August with Congenital Myotonic Muscular Dystrophy, a genetic condition with no known cure. Her muscle tone is low, causing developmental delays in her movement and feeding progress. She sees a physical therapist, speech therapist and many medical specialists who are keeping a close eye on her progress. She just loves to watch Charlie as he bounces around the family room. She does on occasion give us her own special smile when she wants.

Upon learning of Kate’s condition, we were shocked, stunned and in partial denial but rebounded after about a week and decided that this wasn’t helping Katherine. We decided to attend the Myotonic Dystrophy Family Conference in California in October, where we met other families, learned what to expect in the coming years and learned a great deal about the exciting research being done at present time.

Katherine has really started to show herself lately. Aside from her obvious current physical limitations she truly is the kindest, gentlest soul. We really have fallen in love with her and know that she totally follows in her father’s footsteps. His ability to be gentle and kind shines though in Katherine. We are hoping that it will eventually soften her mother up a little. All joking aside, we know that once Kate works through her early struggles in life she will go on to lead a very influential and caring life that will make this a better world.

The rest of the Conte family is plugging along. Jack continues to run scared from Charlie wishing he could just be left alone. Elizabeth and I are just enjoying our time with our family and making plans for our family’s future. We are hoping to start an annual fundraiser to support the Myotonic Dystrophy Foundation by year’s end. We would ultimately like to do two different annual events but will start with just one. We are knocking around a couple of ideas right now that are different than the typical golf tournament. In Jacksonville that effort has played itself out. We are always open to ideas so if you have any, please shoot them our way. We will also be looking for any volunteers that may be needed for the events so when the time comes and if you are interested please let us know. We are thinking for the announcement of our event we will do something small like a fireworks display downtown with rotating spot lights and maybe a small musical act like Garth Brooks. Stay tuned!

Lastly we want to thank all of our family and friends who have been by our side the past 8 months or so. We are truly the luckiest family in the world and without people like you in our lives we would be lost. Your support has been AWESOME!!!!


David, Elizabeth, Charlie, Katherine and of course Jack