The last few months have been a roller coaster. Nicholas chose to go to Walt Disney World for his Make-A-Wish Trip, Duchenne was not invited on this trip and it was stress free! Nicholas had an episode on the airplane that looked like a full body muscle spasm/cramp and he seemed unaware of his surroundings when we landed. He is now being referred over for an EEG since this is not the first time this has happened. I am praying that we do not have more shoved onto our already full plate. Our summer has been non-stop and clinic has been every week along with our never ending therapy. We have been camping almost every weekend and recently this last weekend we had a nice long weekend at the lake with my side of the family.
This Sunday evening when we got home, we all crashed out from being so exhausted. I woke up in the middle of the night, sitting up as fast as I could, couldn't breathe and was crying. I got a cup of Almond Milk and sat down trying to re-visit what my Nightmare was about and WHY I was so disturbed. So Here is what I recalled...
I was on an Island where my husband met me on the beach where we were walking and holding hands. My family was dancing and laughing and soon all my friends joined them, but we (my husband and I) were on the shore line, which seemed to be perfect and we weren't getting wet. Soon I see my son in the water with water wings on, the cheap kind that can pop at any minute. He was floating under glass in the ocean. He was laughing and smiling and having a good time but I couldn't help him through the glass. No one could see that the glass was keeping him in the water and that the water wings were going to pop, just wasn't sure when they would pop. Everyone around me was him having a good time, but they didn't see the glass or the thinning water wings. I was desperately trying to get the glass up or break it before they popped or he drowned. I looked in the distance and I saw all of my Duchenne Family throwing fishing lines with large weights on them into the water. The weights were only breaking some of the glass where I saw some boys, but not mine being saved.
Later in the morning I realized that the Glass was Duchenne, the weights were drugs that were specific to deletions. This has been on my mind more than I knew it. I am so beyond scared that my son wont get a therapy in his time. He doesn't qualify for any drug trials due to either his age, behavior or that he has other genetic diagnosis. I know we are not alone, I know that other families are waiting like us, BUT it doesnt make the pain and fear go away any less or more. Its pain and fear non-the-less and no matter what anyone says of does, its there until I am told a CURE is found.
Newborn
Run for Our Son's Donation
Tuesday, July 16, 2013
Thursday, March 21, 2013
Duchenne, Behavior, Kinder and My son
Kingarten has opened a whole new avenue for Nicholas. His behaviors are deemed as unacceptable by his school and to be honest, I just think they dont know how to handle them.
Nicholas is a sweet, caring, gentle creature that has a smile on his face no matter what happened 5 minutes ago. He will always welcome others with a hug of which I encourage because we aren't sure how much longer he will be able to "hug", special thanks to our friend "Duchenne". Nicholas recently has been getting therapy from Lucille Packards children's Hospital at Stanford. We chose Pivotal Response Therapy with the help of his lead Psychologist. His PRT is working out GREAT. He is being very flexible, finding his own solutions and completing tasks on request. The school on the other hand initially deemed his recently new verbal requests and demands as another defiant behavior, we deemed that as a step forward, he wasn't screaming anymore! Im assuming this is because they are so use to flashing a picture of a stick man in front of a child then giving them a lollipop when they complete the deemed task. Needless to say he is moving mountains and I am proud regardless what the districts behavior specialist feels. His psychology team feels he is doing excellent and is very proud of his flexibility.
In the midst of his behavior at school, they had neglected his physical needs. He has been doing P.E. which includes a stretching band (a big no no for Duchenne) and he was jumping on the trampoline another No No. My husband and I had no idea he was doing these activities at school, assuming the adaptive PE was being followed through. Nicholas had been crying of leg pains at school and at home, we now know why. The OI re-addressed his do's and don'ts with the school so I didn't have to go through all the crying, frustration all over again. This is the exact reason WHY I am always so worried and at the school for hours.
School has been such an important part of Nicholas' day, he enjoys learning (in his own way), and he loves reading of which he has recieved 3 reading awards this year. Recently he recieved an award for math. We currently are searching new options for 1st grade and in discussions with his Psycology team to finalize our decision.
Duchenne OH Duchenne! the past few months Nicholas has requested to utilize his adaptive stroller daily and well, it is just too small. CCS has ordered him a new convaid and he was so excited to pick out the push chair, colors and accessories with his Physical Therapist. We also let him pick out his AFO's. I believe its important to allow them to be "THE" decision maker when it comes to choices. They dont get to choose this life, but allowing them to choose what it looks like.
This morning I had a mixed blessing thanks to PRT and Duchenne. He got dressed and was ready to go, I saw he had a really difficult time getting up from the floor. As he was getting up he said "A little help please!" I ran to assist him before he fell. We then decided to do a little stretching to get us moving, he felt really tight and was uncomfortable. He then told me it was time to go, so we were out the door. I opened the doors to the van and Bella hopped right in, buckled up and as I walked to Nicholas's side I herd him ask for help again. This time he was waiting patiently (thank you PRT), but needed help just to crawl into the van (F&*^ you Duchenne). This time he didnt want a little push with assistance, he wanted to be picked up and placed into his seat (again F%^& you Duchenne). He looked at me with his big beautiful smile, big bright brown eyes and said "Mommy, Thank you so much! I love you to the moon"! I kissed him on his head and then bucked him in. We were late for school and I didnt have time to think about what had just happened, afterall its just our life. I then started recalling the day before at his school. 2 women standing in the same place everyday at his school waiting for their children to get out were staring at us through the fence as I was pushing him in his chair. I had that feeling when someone is watching you and it feels like they are shooting you with Superman rays. I kept walking and unfortunately we had to walk right past them to get into our car. The younger woman(maybe in her 20's) says to the older woman " Look, he isnt a baby! I told you!" Those words ran through my brain over and over again until we got to the school this morning. When we got to the school, I got Bella out and Nicholas said "Mommy Im going to make good choices and wait until you get sister and my stroller out because I need help. My legs hurt very bad today". I was so happy he used his words and waited like a champ! BUT on the inside I was fighting back the Niagra Falls of tears.
I know I am rambling so I will rap it up. I am very proud of the mountains Nicholas is moving with his behavior. I have such mixed feelings that now my beautiful 6 year old boy can tell me his pain, his feelings and yet he still has a smile. One step forward in behavior, 2 steps back Duchenne.
And last, Nicholas and I have completed another race together. The race picture below is from LPCH summer scamper. I had the pleasure of having a special friend run with Nicholas and I at She.is.Beautiful in Santa Cruz this last weekend. The view of the Monterey Bay was crystal clear and our path was healing. He told me that he loves racing and this race was the best DAY EVER!
Nicholas is a sweet, caring, gentle creature that has a smile on his face no matter what happened 5 minutes ago. He will always welcome others with a hug of which I encourage because we aren't sure how much longer he will be able to "hug", special thanks to our friend "Duchenne". Nicholas recently has been getting therapy from Lucille Packards children's Hospital at Stanford. We chose Pivotal Response Therapy with the help of his lead Psychologist. His PRT is working out GREAT. He is being very flexible, finding his own solutions and completing tasks on request. The school on the other hand initially deemed his recently new verbal requests and demands as another defiant behavior, we deemed that as a step forward, he wasn't screaming anymore! Im assuming this is because they are so use to flashing a picture of a stick man in front of a child then giving them a lollipop when they complete the deemed task. Needless to say he is moving mountains and I am proud regardless what the districts behavior specialist feels. His psychology team feels he is doing excellent and is very proud of his flexibility.
In the midst of his behavior at school, they had neglected his physical needs. He has been doing P.E. which includes a stretching band (a big no no for Duchenne) and he was jumping on the trampoline another No No. My husband and I had no idea he was doing these activities at school, assuming the adaptive PE was being followed through. Nicholas had been crying of leg pains at school and at home, we now know why. The OI re-addressed his do's and don'ts with the school so I didn't have to go through all the crying, frustration all over again. This is the exact reason WHY I am always so worried and at the school for hours.
School has been such an important part of Nicholas' day, he enjoys learning (in his own way), and he loves reading of which he has recieved 3 reading awards this year. Recently he recieved an award for math. We currently are searching new options for 1st grade and in discussions with his Psycology team to finalize our decision.
Duchenne OH Duchenne! the past few months Nicholas has requested to utilize his adaptive stroller daily and well, it is just too small. CCS has ordered him a new convaid and he was so excited to pick out the push chair, colors and accessories with his Physical Therapist. We also let him pick out his AFO's. I believe its important to allow them to be "THE" decision maker when it comes to choices. They dont get to choose this life, but allowing them to choose what it looks like.
This morning I had a mixed blessing thanks to PRT and Duchenne. He got dressed and was ready to go, I saw he had a really difficult time getting up from the floor. As he was getting up he said "A little help please!" I ran to assist him before he fell. We then decided to do a little stretching to get us moving, he felt really tight and was uncomfortable. He then told me it was time to go, so we were out the door. I opened the doors to the van and Bella hopped right in, buckled up and as I walked to Nicholas's side I herd him ask for help again. This time he was waiting patiently (thank you PRT), but needed help just to crawl into the van (F&*^ you Duchenne). This time he didnt want a little push with assistance, he wanted to be picked up and placed into his seat (again F%^& you Duchenne). He looked at me with his big beautiful smile, big bright brown eyes and said "Mommy, Thank you so much! I love you to the moon"! I kissed him on his head and then bucked him in. We were late for school and I didnt have time to think about what had just happened, afterall its just our life. I then started recalling the day before at his school. 2 women standing in the same place everyday at his school waiting for their children to get out were staring at us through the fence as I was pushing him in his chair. I had that feeling when someone is watching you and it feels like they are shooting you with Superman rays. I kept walking and unfortunately we had to walk right past them to get into our car. The younger woman(maybe in her 20's) says to the older woman " Look, he isnt a baby! I told you!" Those words ran through my brain over and over again until we got to the school this morning. When we got to the school, I got Bella out and Nicholas said "Mommy Im going to make good choices and wait until you get sister and my stroller out because I need help. My legs hurt very bad today". I was so happy he used his words and waited like a champ! BUT on the inside I was fighting back the Niagra Falls of tears.
I know I am rambling so I will rap it up. I am very proud of the mountains Nicholas is moving with his behavior. I have such mixed feelings that now my beautiful 6 year old boy can tell me his pain, his feelings and yet he still has a smile. One step forward in behavior, 2 steps back Duchenne.
And last, Nicholas and I have completed another race together. The race picture below is from LPCH summer scamper. I had the pleasure of having a special friend run with Nicholas and I at She.is.Beautiful in Santa Cruz this last weekend. The view of the Monterey Bay was crystal clear and our path was healing. He told me that he loves racing and this race was the best DAY EVER!
Thursday, November 1, 2012
Kindergarten 2012
Well its now November 1st and we have completed our annual IEP. Nicholas started Kindergarten this year and it was so bittersweet for me. He is academically growing and so interested in learning. He has won super reader awards for 2 months in a row now and he just keeps going. The year started off a little bumpy as the school did not fully understand when I said he does not transition well, yet seeks for structure. It has taken 3 months for the "school" to adjust to him.
His behavior issues that were being reported were valid, yet not addressed by the school and I was growing more concerned. I had this feeling since Nicholas was very young that his over stimulation and need for structure was so much more than just being a very clean and "exact" child. I addressed my concerns with his Neurologist and psychologist once more due to his disruption at school increasing and he didn't seem like the happy kid we knew so well over the summer break. I had waited for an appropriate referral for an assessment from the Autism clinic at Stanford, then our Doctors called them and got us right in. He showed he was a very high functioning child yet on the spectrum of Autism. This was not really a surprise to me, but yet another knife in my heart. We now are dealing with Duchenne, B-Thalassemia, Gilbert's syndrome, OCD, Autism Spectrum and ADHD, Not to mention his Asthma and odd outbreaks of random rashes. Surprisingly we are hanging in there!
He started another medication in hopes to allow him to have quality of life, Tenex. Its other name is guacafine and we were told it was a 50/50 chance it may or may not work. His psychologist was in hopes that it would at least allow him to sleep as he has been waking up frequently at night or not going to sleep at all. Which can put a real damper on daily life. So far so good! Transitions have been smoother and he is sleeping better, a few night terrors though.
We are now starting PRT at Stanford with a very down to earth understanding Doctor who "gets him"! Although these issues are so hard to deal with, I feel blessed. I feel blessed that he is oblivious to other children who make fun of him, because he really doesn't care. I feel blessed to know so many doctors/scientist on a personal level who specialize in his disorders. These are things that many don't see or have. I am hopeful that one day I can just simply focus on my child for who he is and not always his medical health. One day at a time and one step after another.
His behavior issues that were being reported were valid, yet not addressed by the school and I was growing more concerned. I had this feeling since Nicholas was very young that his over stimulation and need for structure was so much more than just being a very clean and "exact" child. I addressed my concerns with his Neurologist and psychologist once more due to his disruption at school increasing and he didn't seem like the happy kid we knew so well over the summer break. I had waited for an appropriate referral for an assessment from the Autism clinic at Stanford, then our Doctors called them and got us right in. He showed he was a very high functioning child yet on the spectrum of Autism. This was not really a surprise to me, but yet another knife in my heart. We now are dealing with Duchenne, B-Thalassemia, Gilbert's syndrome, OCD, Autism Spectrum and ADHD, Not to mention his Asthma and odd outbreaks of random rashes. Surprisingly we are hanging in there!
He started another medication in hopes to allow him to have quality of life, Tenex. Its other name is guacafine and we were told it was a 50/50 chance it may or may not work. His psychologist was in hopes that it would at least allow him to sleep as he has been waking up frequently at night or not going to sleep at all. Which can put a real damper on daily life. So far so good! Transitions have been smoother and he is sleeping better, a few night terrors though.
Monday, July 30, 2012
CIRM Stem Cell Research Updates: Patient advocates speak in support of disease team...
Duchenne Advocates Voices herd!
Monday, June 4, 2012
Begining of Summer 2012
It's June and Summer has begun! Nicholas official last day of Pre-School was last Thursday and It was a little sad for me. He will be in summer school starting this week, but its only an hour of "play" a day. He will officially start Kindergarten in August! YIKES how time fly's!
We kicked our summer off with a mini camping trip to Lake Nacimento. We met my dear Friend Sparra and her little family of 3 on Saturday and my Aunt & Uncle brought the boat down. The weather started off very windy but by the end of the weekend it was in the 100's without a breeze in sight.
My children were so excited to be on my uncles boat. They both look forward to every trip to the lake and this year my uncle let them drive. Nicholas loved spending time with my Aunt and Uncle on the boat he had a smile from ear to ear.
These little trips to the lake are very meaningful to our family as we never know when it will be our last trip as a family. I always find myself inspecting all the dock's as we speed past them or checking out the pontoon boats to see if there is a safe ramp or easy access. Even a few steps or stairs could mean we would have to miss a trip to avoid having to carry our 47lb child up and down or holding him to avoid a huge tumble (Nicholas had an accident the day before leaving on our trip just by simply rolling off the couch onto his face. He doesn't have the speed to place his hands in front of his face to break falls).
Summer time brings a lot of excitement to my whole family because of the lake, beach and water sports. I hope that we can have many more trips before Duchenne grabs a hold of him. Memories are so important and maybe just as important as Independence.
We kicked our summer off with a mini camping trip to Lake Nacimento. We met my dear Friend Sparra and her little family of 3 on Saturday and my Aunt & Uncle brought the boat down. The weather started off very windy but by the end of the weekend it was in the 100's without a breeze in sight.
My children were so excited to be on my uncles boat. They both look forward to every trip to the lake and this year my uncle let them drive. Nicholas loved spending time with my Aunt and Uncle on the boat he had a smile from ear to ear.
These little trips to the lake are very meaningful to our family as we never know when it will be our last trip as a family. I always find myself inspecting all the dock's as we speed past them or checking out the pontoon boats to see if there is a safe ramp or easy access. Even a few steps or stairs could mean we would have to miss a trip to avoid having to carry our 47lb child up and down or holding him to avoid a huge tumble (Nicholas had an accident the day before leaving on our trip just by simply rolling off the couch onto his face. He doesn't have the speed to place his hands in front of his face to break falls).
Summer time brings a lot of excitement to my whole family because of the lake, beach and water sports. I hope that we can have many more trips before Duchenne grabs a hold of him. Memories are so important and maybe just as important as Independence.
Tuesday, February 14, 2012
One of those Days
It's been a while since my last log and a lot has happened since then...Where oh where to start?
We went to Cincinnati Children's Hospital and met with the Infamous Dr. Brenda Wong, who is not only super duper intelligent but her bedside manner is wonderful! I knew from the moment we entered the front door of CCH that we made the right decision to fly across the US! Nicholas had several test including a DEXA scan and bone density test. Which showed he was at 3 1/2 years, one year behind. Dr. Wong was very impressed with Nicholas walk test and feels he has a mild phenotype of Duchenne of which looked to be Becker's, yet his deletions proved otherwise. She still advised us that it cannot predict his progression, but to continue with our supplements and she added a few more to our list. We also chose to start him on Deflazacort of which he is tolerating very well, a little pricey but worth his sanity Vs. prednisone.
Nicholas Behavior was noted to be typical of a Duchenne boy and he did show anxiety, over-stimulation, and lots of sensory overload (lots of need for pressure IE: hugs, tip toe walk). Serial casting was talked about and we are in the process of getting that pre-authorized at Stanford LPCH.
We then met with Dr. John Day who so happen to take over the open position of MDA Neurologist at Stanford. I am very happy with Stanford's choice to bring him here, he is very supportive and educated in Duchenne. We are feeling very blessed to have him right here and only an hour away! He will now manage all of Nicholas care.
Christmas seemed to be right around the corner and we were excited that PPMD would have a F.A.C.E.S group for NorCal. This was a big step for CA! We have been so limited in care, support, and now we were getting a whole new package! So exciting!
Nicholas had an appointment with Dr. Nancy Yaun in Pulmonology(whom is another great MDA Dr.), we received a call asking to re-schedule his appointment so we could meet with Dr. Bu and Dr. Yaun. I had then asked what the results were for Nicholas' sleep study, they "forgot" to call me and THANK GOD I remembered to ask! His results showed Moderate Sleep Apnea and wanted to remove his tonsils and a few other test while he was under IV. Needless to say his surgery went well, he was not happy after. But is healing well and just had his follow up sleep study so we hope it's now clear of Apnea...
Unfortunatly right before Christmas both Nicholas and Bella got a very bad virus with vomiting. Everyone seemed to be doing better, then on christmas morning Nicholas had his very first Seizure! It was so very scarey! He woke up and asked to take a bath before we left to go see family. He vomited and while in the bath he seemed very spaced out, he acted as if he was going to pass out. He got out of the tub, walked into the living room, picked up a lego and his eyes rolled back! his hand went into a fist and then started shaking. after a minute he dropped to the floor and passed out! We jumped in the car to the ER at Stanford as I don't trust our local hospital with my dog. I called every doctor he had at stanford and as soon as we walked in they took us straight back into a room, passed all the people waiting in the ER waiting room and an ER Doctor was waiting for us. Nicholas was very dehydrated and took a whole bag of saline. He was starting to "wake up" from the seizure when we go into the room. He looked at the nurse and said" OH NO it's christmas at the hospital!" The nurses eyes got teary and told him that she was sorry but they had a present for him! She came back with Lightning McQueen and Matter cars. We finally got to go home after blood work and fluid. Nicholas slept for 2 days straight. The one thing that made me sad was that we spent Christmas alone, no one came by, no christmas Dinner and I was a wreck while my son slept off the affects of his seizure and virus.
Yesterday and today I have been on the phone, exchanging emails just to get Nicholas evaluated for Serial casting and the behavioral team to monitor his prozac. It seems to not be clear to anyone what the protocol for a Duchenne boy is, but it is clear what he needs. So far there are no protocols at the local service providers we go to, so we have had to go back up to Stanford and request referrals again. It's been a little stressful and overwhelming to explain to each person on the phone "why" he needs what he needs and "What" his diagnosis is. I find it so upsetting that these "professionals" don't know what Duchenne is and constantly repeat back to me "So he has MS?", it's a little frustrating...
To top the day, I found out a little girl that goes to Nicholas' school had passed away this past weekend. My instant reaction was to cry, even though I did not know the child my heart was broke. To think that your child could be gone in an instant is not a thought I want to think, but it's our reality. The fact that Nicholas has Duchenne already steals time from us. His life weighs on my mind everyday, every hour of every minute. I do realize Children with Duchenne are living to be young men, but they also don't have other genetic disorders that doctors have NO idea how they will affect one another like Nicholas. It weighs heavy on my heart. Some days I don't want to go to bed, it means one more day gone. Other days its a great memory made that I will never forget.
We went to Cincinnati Children's Hospital and met with the Infamous Dr. Brenda Wong, who is not only super duper intelligent but her bedside manner is wonderful! I knew from the moment we entered the front door of CCH that we made the right decision to fly across the US! Nicholas had several test including a DEXA scan and bone density test. Which showed he was at 3 1/2 years, one year behind. Dr. Wong was very impressed with Nicholas walk test and feels he has a mild phenotype of Duchenne of which looked to be Becker's, yet his deletions proved otherwise. She still advised us that it cannot predict his progression, but to continue with our supplements and she added a few more to our list. We also chose to start him on Deflazacort of which he is tolerating very well, a little pricey but worth his sanity Vs. prednisone.
Nicholas Behavior was noted to be typical of a Duchenne boy and he did show anxiety, over-stimulation, and lots of sensory overload (lots of need for pressure IE: hugs, tip toe walk). Serial casting was talked about and we are in the process of getting that pre-authorized at Stanford LPCH.
We then met with Dr. John Day who so happen to take over the open position of MDA Neurologist at Stanford. I am very happy with Stanford's choice to bring him here, he is very supportive and educated in Duchenne. We are feeling very blessed to have him right here and only an hour away! He will now manage all of Nicholas care.
Christmas seemed to be right around the corner and we were excited that PPMD would have a F.A.C.E.S group for NorCal. This was a big step for CA! We have been so limited in care, support, and now we were getting a whole new package! So exciting!
Nicholas had an appointment with Dr. Nancy Yaun in Pulmonology(whom is another great MDA Dr.), we received a call asking to re-schedule his appointment so we could meet with Dr. Bu and Dr. Yaun. I had then asked what the results were for Nicholas' sleep study, they "forgot" to call me and THANK GOD I remembered to ask! His results showed Moderate Sleep Apnea and wanted to remove his tonsils and a few other test while he was under IV. Needless to say his surgery went well, he was not happy after. But is healing well and just had his follow up sleep study so we hope it's now clear of Apnea...
Unfortunatly right before Christmas both Nicholas and Bella got a very bad virus with vomiting. Everyone seemed to be doing better, then on christmas morning Nicholas had his very first Seizure! It was so very scarey! He woke up and asked to take a bath before we left to go see family. He vomited and while in the bath he seemed very spaced out, he acted as if he was going to pass out. He got out of the tub, walked into the living room, picked up a lego and his eyes rolled back! his hand went into a fist and then started shaking. after a minute he dropped to the floor and passed out! We jumped in the car to the ER at Stanford as I don't trust our local hospital with my dog. I called every doctor he had at stanford and as soon as we walked in they took us straight back into a room, passed all the people waiting in the ER waiting room and an ER Doctor was waiting for us. Nicholas was very dehydrated and took a whole bag of saline. He was starting to "wake up" from the seizure when we go into the room. He looked at the nurse and said" OH NO it's christmas at the hospital!" The nurses eyes got teary and told him that she was sorry but they had a present for him! She came back with Lightning McQueen and Matter cars. We finally got to go home after blood work and fluid. Nicholas slept for 2 days straight. The one thing that made me sad was that we spent Christmas alone, no one came by, no christmas Dinner and I was a wreck while my son slept off the affects of his seizure and virus.
Yesterday and today I have been on the phone, exchanging emails just to get Nicholas evaluated for Serial casting and the behavioral team to monitor his prozac. It seems to not be clear to anyone what the protocol for a Duchenne boy is, but it is clear what he needs. So far there are no protocols at the local service providers we go to, so we have had to go back up to Stanford and request referrals again. It's been a little stressful and overwhelming to explain to each person on the phone "why" he needs what he needs and "What" his diagnosis is. I find it so upsetting that these "professionals" don't know what Duchenne is and constantly repeat back to me "So he has MS?", it's a little frustrating...
To top the day, I found out a little girl that goes to Nicholas' school had passed away this past weekend. My instant reaction was to cry, even though I did not know the child my heart was broke. To think that your child could be gone in an instant is not a thought I want to think, but it's our reality. The fact that Nicholas has Duchenne already steals time from us. His life weighs on my mind everyday, every hour of every minute. I do realize Children with Duchenne are living to be young men, but they also don't have other genetic disorders that doctors have NO idea how they will affect one another like Nicholas. It weighs heavy on my heart. Some days I don't want to go to bed, it means one more day gone. Other days its a great memory made that I will never forget.
Friday, September 9, 2011
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.
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.
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