The last couple of weeks have been
a whirlwind. There were so many things going on that I have been so neglectful of updating the site. Again, my apologies to
Daniel’s fans.
We
had the MDA Ride for a Cure on June, 7th. It was so much fun but also so much work.
I stayed up two nights in a row making big picture posters with Daniel on them. I wanted them to
be fun and creative but got in way over my head and it was much more work than I had anticipated. I loved
being able to create something kind of artsy! It was so much fun for me. The rally day
started early as I did not know where we were going to set up our tent at the event. My mom and I went
down to the site at 10am and met this really groovy guy named Frog….yep……you heard right Frog.
Frog is THE man! He knows everyone and all of the answers…and if he does not know the answer
he will find someone who does. He was great! He introduced us to Wayne from Harley Davidson
who set us up in a great space. He also let us bring in our van so we could block the “Wendover Wind”
and have our electricity in case of an emergency. We were set up at the very front of the venue and
were there to greet the riders as they came through the front gate. We ended up meeting tons of great people including riders
Greg and Lynette from the Utah Patriot Guard. They were great! Greg’s wife, Sharon,
was such a great shoulder for me! It was such an emotional day. We met other SMA and
MD families that traveled to Wendover from Salt Lake. The riders stopped at the rest area outside of town
and rode in with several children strapped to tumbleform chairs. One young man we met was Chaz who is 19
years old and has SMA. Chaz and his mom are so inspirational! Again…..a very
emotional day! Right before the auction and before Night Ranger went on to perform Daniel and the other
children were asked to come onstage. A disk jockey from 103.5 (who hosted the ride) named Sue Kelley seemed
particularly moved by Daniel’s story. She was so wonderful to us and Daniel was his regular “flirty”
self. They all made us feel so loved and we could tell that EVERY rider, volunteer, vendor and participant
loved our children truly wanted to do what they could to help find a cure for their terrible diseases. The
event raised over $225,000. This is now the third largest Harley Ride for MDA in the whole country.
There are so many people
to thank for their help that day! I really hope I don’t forget anyone. Huge thanks
to all that came out to help us pass out patches, picture pins and SMA bracelets…..James, Kim, and kids…..Shaun
(our new friend and big Daniel fan) ….April and Moses (April works with Justin at the clinic). James,
as always, was so helpful…..he got the Wendover Ambulance to loan us the tent, came and set up the tent, passed out
information and told tons of people about SMA and then came back to help me tear down the tent. James you
are amazing! What would we do without you! Huge thanks to Joe Timmons and Wayne from
Harley-Davidson for the space and the t-shirt for Daniel. You guys are so amazing! Thank
you to Sue Kelley for doing this event every year. It is so amazing that you know each child and their
history. Thank you for taking the time to get to know Daniel…..He loved flirting with you!
Thank you to Mr. Hanson and all of his staff, especially Debbie. Mr. Hanson…you rock!
Thank you bands Night Ranger and the opening band….sorry to have forgotten the name but thanks for the rock
n roll. Thank you to Chris Melville, West Wendover City Manager, who made the beautiful banner for us to
display. This was such a special event and we will make sure that we are a part of it every year….No
matter where we live.
Speaking of where we live…..I guess it is okay to say because Justin has officially given notice….we
are moving. We have less than three months left in West Wendover. Just interview and
got a really great job in Vermont. He will be working for a PA owned company that contracts to the local
hospitals. Justin is so excited because he will be working in the Emergency Room in Springfield, Vermont.
Justin took a trip there in May and reports that it is a very beautiful area of Vermont. We are
so excited. We are going to actually live where we use to spend money to vacation. Even
though this is a small, rural hospital there are tons of stores with in 10 to 20 miles (along with local stores in Springfield)
and tons of services for Daniel. There is a great Katie Becket program in Vermont and it is our understanding
that Vermont takes very good care of their children. We have heard wonderful things about a small town
near Springfield (only 7 miles) named Chester. We have been told that the schools are great and it is a
nice community to live in. It is our understanding that they even mainstream handicapped children.
Daniel would love that! So wish us luck and please pray for our move. This will
be the hardest one yet as we have to send our belongings and then drive with our van across country!
I started working a few weeks ago.
I just work four hours per day but it has been so good for my spirits. It allows me to talk to families
and actually use some of my social work skills. I love it and look forward to Daniel’s nap time each
day so I can get started. I feel like I have actually gained some of my “edge” back.
My girlfriends from the court system will understand that comment!
Daniel continues to do very well. He has grown so much
and is so talkative and playful. Daniel’s personality is really coming out and he is so cute when
he smiles and laughs. Granny was here for two months but just left yesterday. He has
been a bit cranky so I know he misses her. Daniel continues to add words to his alphabet and can definitely
express himself when he wants something. Daniel’s new floatie for the “pool” (his portable
hot tub) allows him to swim independently. He gets so tickled at himself. This is honestly
the first thing he can do on his own so he is so happy every night when we put him in.
We are going back to the DR on
July 23rd. We wanted to try to do one more treatment before he turns two because it will be
different for us to fly with him after his birthday. We will have to purchase his two seats to be strapped
into because we will not be able to hold in during take off and landing after he turns two. Right now it
is perfect because we can hold him the entire trip and he just sleeps on his pillow on the pull down trays. We
are excited to see Dr. Rader and his staff and very excited to see all of the friends we have made along the way.
Wanted to put a special “thanks” into the blog and will follow up with pictures on the special
thanks page. Winna Downs and her husband, , invited Daniel down to their feed store, Critter Grub, to touch
and play with the new baby chicks. Winna put a blanket on the floor and I got down there with Daniel.
As soon as he saw the little yellow chick his eyes got so wide with excitement. I held it so he
could pet it. He was so gentle with it. He loved it so much! Afterwards,
I spotted a saddle in the store and asked if I could put Daniel on it. Daniel and I play “horsey”
everyday. I put him on my knee and bounce him up and down. On the saddle we did the
same and he was belly laughing so hard! I am convinced that once we make this next move, I am going to
find a child’s saddle for his room. He will love it! Daniel
had so much fun on his outing. It was extra special because Daddy met us there over his lunchtime and because
Grannie Annie was there. Winna gave Daniel a really cool Critter Grub shirt that he can wear for years
to come. Thank you so much Winna for making such a beautiful day for Daniel!
Well, so sorry for
the long, long update. I PROMISE it will not be so long before I do it again. Special
prayers go out this week for Uncle Larry who has been ill over the last few months! We think about you
and pray for you everyday! We all love you! Also, prayers out to the MD’s at Saint
Luke’s Hospital who are taking care of my cousin Julie. We hope that they figure out what is wrong
with her so that she can go home soon. I love you Julie and you are in our thoughts and prayers!
Last but certainly not least, continue to send prayers for Trooper Pearl. He is doing amazing in
his recovery from his auto accident. He came over with his family for a visit. It was
so nice to see him out and about and we hope they visit again soon. Wendover residents…keep your
eye out for the yard sale signs…..there is going to be a benefit sale for his family this next weekend.
Having an ill loved one is so costly and we want to get the word out that there is going to be a sale for them!
Kisses to everyone!
Connie
