Sunday, November 29, 2009
Tonight was a night that we will never forget. Kayla was invited to go backstage and meet her all-time favorite American Idol, David Archuleta, tonight. This wonderful woman, Monica, heard that Kayla loves David Archuleta and she wrote to me and offered to try and have Kayla meet him at his concert in Santa Rosa, California. The show was really great and Kayla had a blast. After the show, we went backstage and David came over to meet us. Kayla was a little shy but after we left the concert, she kept giggling and saying and signing "David". This was a once in a lifetime experience for her.
Monica, thank you so much for reaching out to me and setting up this meeting. Kayla has been through so much in her short little life and this will be an experience that will be with her forever.
David, you are such an inspiration! You have the voice and spirit of an angel. You have no idea how much this meant to our family but especially to Kayla. She wakes up every morning and signs and says your name until I turn on my iPod and play your music. She's your #1 fan! THANK YOU, THANK YOU, THANK YOU from the bottom of my heart!
Thursday, November 26, 2009
Well, I've been working a lot lately as running a non-profit means doing fund raising campaigns during the holidays. Well, I got so busy yesterday stuffing and fluffing envelopes that I forgot to pick up our free range turkey that I ordered 2 weeks ago and the grocery store is closed today. My entire family arrived yesterday for Thanksgiving at my house and we don't have a turkey. When I realized my mistake this morning, I started to get frustrated so of course what did I do but go to Facebook. The first post I saw was my new friend Jeni Stepanek (@jenistepanek) who posted a poem written by her late son Mattie. It put my frustration into perspective and helped me to stop and remember all the things I'm thankful for today.
Here is Mattie's poem:
"If you have enough breath to complain about anything, you have more than enough reason to give thanks about something." - Mattie (page 88 MESSENGER book - www.mattieonline.com).
Here is a blurb from Mattie's website:
"Mattie also feels very blessed just to be alive at age 13. Children born with his disease do not usually live very long. Mattie knows that each day is a gift, and he makes the most of it. He says he gets his strength from God and his mom, and also from the people that become part of his circle of life. "People tell me I inspire them. And that inspires me. It's a beautiful circle, and we all go around together, with and for each other. What a gift," says Mattie."
Mattie died just before his 14th birthday. Well, if that doesn't stop to make us all remember our blessings in life, I don't know what will.
I am so thankful that I've had another year with our sweet baby Kayla. Here is a photo of her from our first Thanksgiving in 2005. She had been home from the hospital for only 2 weeks at the age of 4 months old. This was our first trip with Kayla to the first floor of our house. Kayla was still on a ventilator and being fed by a feeding tube at this point. The other photo is Kayla with my brother Chris and sister-in-law Dawn who came to visit Kayla for the first time on November 24, 2005.
Today I am thankful for all of the incredible people that have crossed my path throughout my life and especially for all of the people that have been there for us since Kayla's traumatic birth in 2005. I feel so blessed to have so many incredible people supporting me and enriching my life. I feel blessed to have the best family ever. We have been through so much together, including the suicide of my brother Steve in 1986, the tragic death of my adopted brother, Jim Kim, who was run over by a car while walking down a country road. Jim died less than 9 months after my brother Steve died. Having a strong supportive family has made these experiences bearable.
I am thankful for having a sister-in-law, Dawn, who is not only a great addition to the family but also a good friend. I am thankful for my 7 nieces and nephews, Danny, Katie, Brennan, Logan, Andie Lee, Noelle and Maya. They enrich my life and make me appreciate the small things.
I am thankful for all of the friends I have made throughout my life while living in Tokyo, Japan, Englewood, New Jersey, San Diego, California, Silver Spring, Maryland, Washington D.C., Richmond, Kentucky, Auburn, Alabama (WAR EAGLE), Atlanta, Georgia, Glendale, Arizona and San Jose, Campbell, Santa Cruz and now finally in Rocklin, California. I am thankful for sites like Facebook that have brought so many of you back into my life.
I am also thankful that I have found a career that is more fulfilling than anything that I could have ever dreamed up. On this journey, I have met some of the most brave and inspiring people in the world. One recent addition to this list of inspiring people is Rick Guidotti of Positive Exposure. See for yourself: www.positiveexposure.org
I have made new friends and lost too many friends to this disorder already and watched so many families have their hearts broken but they still get up every day and face their own challenges and struggles with bravery and courage. Here are a few of my new friends: www.positiveexposure.org/myotonic.html I get calls all the time now from families who's kids are diagnosed at birth and are many times still in the ICU. Being able to help them at a time like that is something that is so healing and helpful to me too. I have friends who are fighthing for their lives. Ed and Alice, our hearts are with you at this difficult time. Thank you for blessing all of our lives.
I am thankful for my own good health so far so that I can be there to take care of Kayla.
I am thankful for all of you who follow our journey and whether we talk everyday or once a year, I know you are there for us.
Feeling blessed on this Thanksgiving Day!
Thursday, November 19, 2009
What the telethon means to me?
Lisa's Interview and Kayla's Story
Jeff's Interview and Kayla's Story
I have been promising to post the videos from our telethon appearances at the Las Vegas Muscular Dystrophy Association (MDA) National Telethon this summer and I finally received files that I can post. For those of you who didn't already know, Jeff, Kayla and I were asked to be one of the 4 families telling our story on the National telethon this year. Over the last 3 years we have been on our local broadcast of the telethon in Sacramento but this year we were able to tell our story nationally. It was such an incredible experience for all of us. We were able to meet all kinds of interesting people including Wynonna Judd, Jann Carl from Entertainment Tonight and our host, Nancy O'Dell from Access Hollywood. We also met Maureen McGovern, Ace Young, Bo Bice, The Fab Four, Brandon Barash from General Hospital, Five For Fighting, Richard Bowser (who was flirting with Kayla), Billy Gillman and many more. They were some of the most down to earth people I've ever met.
Monday, November 16, 2009
Source article: http://www.news10.net/news/local/story.aspx?storyid=70437
LINCOLN, CA -- A program that helps children with disabilities through horse-riding needs some help of its own. "Ride to Walk" in Lincoln has experienced large budget cuts over the past year, which has greatly reduced the number of children it can help.
The parents of the kids enrolled in the program say it's improving their lives exponentially. Lisa Vittek has a 4-year-old daughter with severe muscular dystrophy and says the therapy makes her daughter more limber.
"They told us that she wouldn't walk and every day she defies the odds," said Vittek, "We like to prove the doctors wrong and she's really good at that." Rachelle Bedford has a 10-year-old daughter who can't talk or walk. "Most professionals think she won't change," said Bedford, " But she's changing all the time." Executive Director Dr. Kris Corn founded the program over 2 decades ago. "Horses have an incredible ability to produce the movement that you and I produce when we walk," said Corn. She says riding leads to improvement in flexibility, balance, and muscle "The more we can actually get function from them, the less they will be dependant on the government when they get older," said Corn. Dependance on the government hasn't been working for "Ride to Walk". The program saw its state funding dwindle to almost nothing over the past year, forcing families to pay more to ride and many out of the program altogether. "Families who are struggling with kids who have needs need programs like this to help them and to help the whole family," said Vittek. Dr. Corn is now looking for donations and sponsorships for the kids and the horses. "A child should not be left in a wheelchair most of their days," said Corn. By: Anne Makovec, firstname.lastname@example.org
Rachelle Bedford has a 10-year-old daughter who can't talk or walk.
"Most professionals think she won't change," said Bedford, " But she's changing all the time."
Executive Director Dr. Kris Corn founded the program over 2 decades ago.
"Horses have an incredible ability to produce the movement that you and I produce when we walk," said Corn.
She says riding leads to improvement in flexibility, balance, and muscle
"The more we can actually get function from them, the less they will be dependant on the government when they get older," said Corn.
Dependance on the government hasn't been working for "Ride to Walk". The program saw its state funding dwindle to almost nothing over the past year, forcing families to pay more to ride and many out of the program altogether.
"Families who are struggling with kids who have needs need programs like this to help them and to help the whole family," said Vittek.
Dr. Corn is now looking for donations and sponsorships for the kids and the horses.
"A child should not be left in a wheelchair most of their days," said Corn.
By: Anne Makovec, email@example.com