Disneyland 1/2 Marathon

On Sunday September 4th I participated in the Disneyland 1/2 marathon. This was an exciting time for me, as I was at a point in my life that I could not sit around like a bump on a log I had to something to help my son.

My Niece and I woke to the alarm at 3:30am, we needed to be down at the start line at 4:15 am. We ate our prime gel, a little energy bar and off we went from Disney's Grand California to Disneyland Drive at the Disneyland Hotel. We came to a fenced off area with tents blocking what I could see was a stage and hear LOUD music and at 4:15am you could only imagine how fast that wakes you up. As i walked thought the gate to my surprise was almost 16,000 people!!! My heart jumped, my blood started pumping, and I could feel excitement from head to toe. Teams were doing warm ups, dancing and trying to keep warm with foil blankets.

Next thing I remember they are having us move to our corrals, you could imagine moving 16,000 people to one street over took a long time. Reminded me of herding cattle across a river. Once we got in our corral, people were all talking about all there previous runs, races, doing Disney's coast to coast and Goofy challenge. Intimidation was all around me and I really wasn't sure i could finish the race. When the 30 minute count down began, mickey came on stage, Drew Carey was introduced as he was running with us and the national anthem was sang. THEN Fireworks went in the air, the race was starting!

about 20-30 minutes after the race started my corral was called up to the start line, and we were off. I was scared all until I herd the announcer say GO "RUN for our SONS". IT WAS ON!

We ran through crowds of people, bands, cheerleaders, hula dancers, and families holding up signs that said "RUN MOMMY, I know it sucks but its for ME", I cried when i saw those simple things. We ran through California Adventure and Disneyland, and saw all the characters rooting for us. Then when we were running in the Angels Stadium I saw that we were at our half way marker. The buses were waiting for people who couldn't finish the race, I was still running and not even winded, just taking in the scenery.

My I-phone shut down at 11 miles as I was listening to Darius Weems song "Don't stop Believing". I herd Screams, people breathing hard, I thought to myself "Clear the mechanism" from that baseball movie, I cant remember the name. I was thinking about my son, The Bath boys and how they are trying to get a van, about a new friend I met on Facebook who's adopted son is 8 weeks old and has Duchenne. I thought to myself, if I have to keep running to END Duchenne, I will not stop. So much was on my mind that it made the race go quick.

I saw "Harbor"st., I knew this was IT, This was the street where you can see the monorail, where the old parking lot was before California Adventure was built, THIS is where I always felt my heart race as a child because I knew we WERE HERE! This time I felt more emotion then I have ever felt, MY tears rolled down my face like Niagara Falls! The sign said 12 Miles and I ran harder, I was almost there. An imagineer yelled and said "Don't stop, Don't forget WHY you are running, your almost there"! I came around the bend and I saw streamers, THOUSANDS of people, cameras, news anchors, Balloons and WATER! I ran through the finish line to a crowd that had completely stopped! WHAT? We run 13.1 miles to STOP?! Then it was line after line, get your metal, get a picture, get a bagel, banana, water, massage, stretch...I made it out and looked up and saw my Son, daughter and Grandmother. I looked at my grandma with tears and said "I did it", then I saw my husband and I felt relieved, my family was there just like I had dreamed. I held my son and cried. This was a great end to something I worked months on.

I saw all my fellow team mates as they kissed and hugged there family, this was exactly how I imagined it would feel, GREAT! I ran the race in 2hrs 38 min and plan to get a better time next race.

I cant wait for next year, more awareness, more research money, closer to a CURE.

Training for my son

The past few months my friends and family has helped me raise over $3000.00 for the Disneyland Half marathon. This race will be my first ever marathon and I am very excited. Knowing that I am not only running in the happiest place on earth, but running for my son.

Earlier this year I joined "Run for our Sons" Team through Parent Project Muscular Dystrophy. I had no idea what I was to expect or how I was going to run 13.1 miles let alone raise $1200.00 to be able to run through MY favorite place in the world! Our fundraising started with simple emails sent to everyone in my contact list, daily postings on Facebook and before I knew it, I raised $1200.00 without any problems. Then I raised my personal goal to $3000. I knew that this would be a little more difficult, but no more difficult than it is for those many boys, men and few girls with Duchenne to be able to simply walk. So I hit the rest of my goal head on, with one thing in mind, FUNDING A CURE.

I decided to have a little Bake sale, WELL this little bake sale turned out to be a large bake sale and we sold sweatshirts, books, and every baked item you could think of. We met our goal of $3000. just by having a little bake sale. I found out that all you need to do is send a little information to your local paper and they will put your event in the  local section. We had many Little league teams purchase dozens of cookies and cupcakes, it was a win win situation.

With all the fund raising set on the back burner I started to seriously train. Our whole family changed our eating habits, which is not to bad of an idea for anyone with Duchenne to avoid junk food. We started off with short walks, jogs, and I most recently ran 8.25 miles and felt GREAT. If my son had not had Duchenne I would have thought of every excuse on why I cant run, shouldn't run, or didn't have time to run.

I am still training, not as hard as I think I should be, but training none the less. I run with a double jogging stroller and every time I feel like giving up, I look down and see his little legs hanging over the seat with his body covered by the umbrella. What I see are two little legs with enlarged calves that I stretch everyday, Massage when he gets cramps and little legs that cant run like you or I. That's what keeps me going! I will keep running until I can see those little legs able to run and keep up with everyone else. The half marathon is about a month away and I know its going to be very emotional for me, I sometimes cry on runs. My reason for running is not selfish, its not to be healthier, to be thinner, not to have a sexy body or because its "My thing". My reason for running is my son, plain and simple and when people ask me how? why? I ask them "What would you do if your child was given a diagnosis with no cure"? Usually its no response.

So with all that is said and done, My next Stop is DISNEYLAND! Hope to see you there!

Butterfly Garden

Most recently Nicholas learned about Butterflies at school. He brings his school projects home to share with his sister, and teaches her all he can. Nicholas really loved learning about the caterpillars and how they turn into Butterflies. We decided to get a Butterfly house, I was worried about keeping bugs captive. But I ordered them online anyways, hoping they would survive. I felt very guilty about ordering a creature and it being sent via mail.

The Caterpillars arrived safe and sound via the post office, and we ripped the box open! Nicholas and Bella gathered around the little container and they both said "OH, WOW", from that moment I knew i made a good choice to allow bugs in my home.  Everyday we check on them and see how fat they are getting, they are all now at the top of the cup hanging ready to turn into beautiful painted lady's.

I started looking online at how i was going to release these little guys and give them the opportunity to survive. So...We started a butterfly garden. We planted parsley, ecineacia, Butterfly bush, marigolds, chives and mellons. It came together very nice and I suprised myself with making a "kid/butterfly" garden. This has made me feel so proud that my kids helped me plant and water the plants daily. Not to mention they see that our plants have attracted tons of new butterflies! Nicholas is learning the names of them while Bella is picking the flowers with the catapillars on them.

When I was doing my "Butterfly homework" I came across a wonderfull meaning of the butterfly. It made me think of Duchenne, my kids, my family.

If a child whispers a wish to a butterfly it will take that wish to the great spirit and it WILL come true. Because wishes only come true if the one who is told only shares it with the great spirit, sice butterflies cant make noise, your secret is safe.

So we will all be making our wish when we set our Butterflies free in the Garden. Can you guess what my wish will be?

Heavy Heart

Most recently Nicholas was playing with another child at a function. This child is very kind and open to other adults, yet as I listened closer I could hear the "Normal" society's opinion of Duchenne come out of this young child's mouth and it made my heart very heavy. I could tell it wasn't purposely directed at my son, but ignorance that is taught and passed down from his parents without even realising it.

The day started out very normal for us, chasing the kids around trying to get them ready for our day. Nicholas screaming that he wanted to do something other than getting dressed, and Bella continuously saying she has to sit on the toilet. We finally got to our destination 20 minutes late and feeling full of anxiety,s then being told that we were late didn't make me feel any better. But all was well and the kids settled in as always.

Nicholas of course started playing with cars and wanted to play with the other children. He typically will play side by side and not with other children, but this day was different. Nicholas was trying very hard to interact, which is a huge step for him. I did my best to step back and let him play, but I listened closely just in case I had to intervene due to screaming or throwing toys. The first hour went very well and everyone seemed happy.

I herd a door slam! The first thing I thought was my son got mad, angry, sad and slammed the door on his sister. Nicholas came running straight to me, crying saying "not nice, he pushed me out of the room, he doesn't like me"! So I decided to go around the corner and as I did I herd this "I don't like him, he is slow and he isn't cool, he is following me, tell him to go away", the parent just told the child to go play in the other room away from my son. So in my mind, the parent condoned the behavior of slamming the door in my sons face. Condoned that the child didn't like my child because he was slow and not "cool".  I keep thinking to myself, maybe I'm being over-protective, over-looking the situation.

As the month has gone by I have realised that we avoid birthday parties, farmers markets (jump houses) all because the other kids cant understand why my son takes his time climbing onto things, slow to catch a ball, cant get up or run as quickly as them. I have seen him pushed to the ground, yelled at and now rejected. This is so hurtful especially coming from his peers. I believe it could all be avoided if parents took the time to talk with their children, teach their children, not just send them to play in another room or avoid playing with a child who has a disability. They learn how to socialize as adults from playing as a child.

My heart is heavy because my son did not understand why, he wants to be a normal child, he doesn't want to be slow or hard to understand. He just wants to be Nicholas...

Daily life

Today I was thinking about all the simple things that I take for granted.

When I talk I use my arms to express emotion.

When I have a question in a room, I raise my hand.

When I need to use the restroom, I don't think twice, I go.

When I'm Hungry, I go get food out of the kitchen.

When I drop something, I pick it up.

The list can go on and on. Most of us don't think twice about these actions. These are common everyday actions, that we do daily without help.

Then I think of all the boys with Duchenne. All of the above, is hard for them to do. Some of these items such as going to the restroom, they think 100 times over and over again on just how to ask the aide at school for help. When they drop an item, they have to WAIT for someone to get it. These are all common things that you and I do daily, yet most of us don't think twice or seem to care.

I have herd everything from boys with Duchenne not wanting to go back to school because its just not accessible enough and it takes too much energy for them to get around. To schools not understanding the needs, which goes back to my belief that if you don't live it you don't know it. Most boys with Duchenne cant go to private schools because they don't offer all the services that are in a public IEP, which I read this morning and made me so upset. These boys are being pushed from society simply because society doesn't understand the simple measures it should take. The common, healthy person is lazy, and only thinks for themselves. Not that I am saying all people are, but if we think hard on this, you realize that all public areas are made for the walking, non-wheelchair, self sufficient person. Why cant we just make ALL areas, computers, ATMS, schools, stores,  ect.... accessible?! Society pleases only those who are "normal".  Just my thought for today, take or leave it....