Tech Museum and Ice Skating

Another day trip that we did was just in the area but we didn't have to come home, if you only knew how much of a "go" person I am, you'd know how much I love these day trips.

We got brave and went to the Tech Museum in San Jose.  The kids and Chad had fun but Lucy couldn't do a lot, and I was terrified of the germs.  Just a couple things that may come out of my mouth when put into this kind of environment might be, "Dallin, your mouth is too close to that", "Jocey, wash your hands again, you just touched the elevator button with your finger", "Chad, come over this way, that person coughed" (and I will make my family move away from anyone and everyone who seems like they are sniffling or coughing).  You see how fun it is to go where there are crowds indoors with me?  Super duper fun.  I try really hard to just relax and have fun but I simply can't!  We really have been fortunate to have Lucy with us still and she has been so strong and healthy, I just don't want her to get sick and it may sound crazy that I am so paranoid but it is my reality and I will do whatever it takes to keep my little family healthy.  D and J are old enough to realize how crazy I sound sometimes and now they tease me, it is pretty funny to see how they interpret my germaphobia.  Anyway, back to our day trip...

 Jocey was racing another kid on this wheelchair and she was way behind so Chad may have helped a tiny bit.

 Lu thought it was funny to watch D and J race in their wheelchairs

our family and a stranger

Dallin was in heaven here but it's been awhile and I can't remember what he was doing...I was too worried about germs probably:)

Next, was the most exciting event of the day, Ica Skating.

Lucy couldn't stop laughing, we talked ice skating up a lot and she couldn't wait to go "fast", although, she really wanted to skate "with her own toes":(.

  

 

Wait, where was Dallin?

Oh ya, his ankles hurt after skating for awhile so he finished off the day slowly skating along the wall. 

Life Changing

I never thought I would be someone who would ever say that a car could change my life and this is purely functional but... our new van has literally changed our everyday lives!  I don't just say that lightly, it has been amazing and we are so grateful!

Over the holiday break, we took 2 day trips as a family!  That may not seem like much to most of you but we haven't taken a day trip in years.  That means, we didn't have to be home every 3-3.5 hours to do another treatment.  We just rolled Lucy's cart into the van, (and it fits perfectly) plugged it in and we were on our way.  As I easily roll Lucy in and out of the van several times a day, I can't imagine having to carry her to and from the car like we did before.  I just love this van, it just makes my life so much easier...

Our first day trip was to Monterey, we wish Chad's cousin, Shauna, and her family still lived there but we love that place so we knew we would have fun whatever we did.  We jammed to Lucy's Princess and the Popstar Barbie soundtrack, she sang the entire way there.  We thought the kids would like the aquarium but when we pulled up there was a line clear down the side of the building and we (and when I say we, I mean I) are such germ freaks, there was no way we would be going in there.

We found another museum close by and had fun there instead, with much smaller crowds.

(kids are giving  a shout out to their school mascot, the Otter)

Chad's boss has him on a short leash :) so he didn't get many days off during the kids break but I was able to do a few fun things with them.  There are many really cool museum's in the area but the cooler a place is the more people there are so we stick to the less-popular-but-still-cool museums:)

There was a airplane simulator at this museum and Lucy absolutely loved it.  Jocey is a crazy pilot and we crashed every 10 seconds.

 Like, loved it so much she cried like this when our turn was over...

When Lucy cries, she chokes and so she gets pretty much everything she wants.  Don't worry, we turned right back and she got a few more turns on the simulator.

It might hurt...

Maybe this is a little too personal for my blog but I thought I'd post it anyway...

I don't think it is a surprise to anyone that SMA affects a lot more people in our little world than just Lucy, she may have the disease but our family's life is completely different than it was 4 years ago.  I don't know how else to put it than it is just hard, stressful, hard, draining and hard.  Also, it may or may not surprise you that the two people I lose sleep over and worry sick about are Dallin and Jocey.  As they get older, they notice (or they can articulate) that their lives are very different than they were when they were little and they carry heavy burdens.  Like today, they were asking me about flu symptoms so they could make sure to stay away from kids at school who are showing those symptoms so that they don't bring the virus home to Lucy.  They both made sure to have a small bottle of sanitizer to keep their little hands clean.  Sometimes Jocey will say that she wishes she was Lucy because Lucy gets so much attention or that "no one understands how I feel".  It breaks my heavy heart and sometimes I really don't know how to help these sweet kids deal with this very hard, real-life situation.  I worry that I won't be able to help them grow and develop in a way that they can have good lives and be successful and happy.

The other day we were driving around and D and J asked me if there was ever going to be a cure for SMA.  I told them (very simply) that there is actually a gene therapy clinical trial that will begin soon and if there is evidence of improvements in patients, they can/will give others access to the therapy.  I made sure to tell them that the disease has progressed so much in Lucy that I don't know what it would do for her - if we even got to try it;  prolong her life, stop the progression of the disease or cure her.  Jocey's eyes lit up and she said, "What if the cost of the cure was two children's legs? (I was confused but quickly caught on) I would cut my legs of so that Lucy could walk.  It might hurt but they could give me some medicine so I couldn't feel it.  I would do that for her."

I witness this love that Dallin and Jocey have for their little sister (and visa versa) everyday.  I know their life is hard but I also know that they would much rather deal with the hard things that come with SMA than not have Lucy in their life.  I realize in these moments that the things that they are learning from Lucy are unique and not taught in a book or classroom or by a professional and I have hope that they will turn out to be wonderful, caring people.

But I am a mother and I carry a mother's heart, so I will always worry:)

Thank You!

We can't quite think of words to adequately express our gratitude towards each and everyone of you so we made a video that shows what a difference this very special van makes in our everyday lives.  When we picked the van up, Lucy's vent was almost dead and we just plugged it right in, no adapters, no trouble.  It was awesome.  The kids keep asking to "go" just so they can sit in the new van (the DVD player may play a large part of that).  When Lucy is in her power chair, she can see outside and she tells me "look, look, Mom, look" because she wants me to see everything that she is looking at.

We thank you all, for making things easier for us and making a difference in Lucy's quality of life.

We just love you all...

THANK YOU!!!

Disclaimer:  My camera girl is only 7 years old (except for a few small segments) so the video is quite shaky, then I 2x the speed of the video and it may be a little nauseating, I apologize, I just didn't want our thank you to be too long:)

Elementary Fundraiser

I told you a little bit about the fundraiser that our kids' elementary school did for Lucy.  I thought that I would tell you just a little bit more how sweet and kind the children and their teachers are...

Mrs. Scott, the school counselor, asked if D and J would present some things about Lucy to the school counsel before the fundraiser started and it was really cute.  Below, they are practicing their parts for the next day.  Then they got to talk about Lucy to their entire school, I was sad that I couldn't go but Chad was there to watch.  

Jocey is always trying to do something to help Lucy (she is always asking me to help her do a lemon aide stand or open her nail salon so she can "earn money for Lucy").  D and J felt so proud and happy to be doing something for their sister.

The day that the fundraiser ended, the elementary had an assembly.  I think it is the 5th graders who are in charge of the tech stuff but they called us on Skype the day before to make sure everything was working okay.  Lucy and I were really excited to see all of the kids and tell them thank you.

It was crazy hair day and this is how D and J left for school that day.

 Lucy and I got the iPad ready to call the school and I was a little nervous, I really don't prefer public speaking and our faces were projected on a 25x30 foot screen (which, is kind of uncomfortable for me:)).  The kids who were in charge of our Skype call and all of the tech stuff were so adorable, I am impressed with how bright they are and how responsible and organized they were in getting it all set up.

We loved seeing all of the kids and their crazy hair but the kids computer crashed and we missed some of the call.  When we figured things out, Lucy and I could only see and hear some of the things that were going on. I could hear Mrs. Scott calling each class to come on stage and say how much their classed raised and then they would put their bag of money into a wheelbarrow.  It was all I could do to not cry, it was so sweet.

When they were done, Mrs. Scott announced that they had a visitor and Lucy's face (and part of mine) popped up on the screen.  Little hands were waving hello to Lucy and she responded with, "Where's Dallin and Joce, where's Dallin and Joce?"  I knew she wouldn't let it go, so I interpreted, "Lucy wants to say hi to Dallin and Jocey." The kids zoomed the camera to the crowd where Dallin and Jocey stood up to wave to Lucy, it was very cute.  I then told the kids that Lucy had something to say to them and she said something like, "Thank you for helping me get my van".  Then I told them thank you, and how much it meant to us that they would want to help us out.  I wasn't sure if they could hear us because on our end, the call was a little off and on, so I kept it short.

Later that day, after Lucy was at school, I dropped Dallin's basketball shorts at the office.  I saw the principal so I introduced myself and told him thank you.  There were several other teachers/staff in the office.  When they heard me introducing myself, they were so gracious and kept telling me how much it meant to all of them that they could help Lucy.  They then asked me if I could see what was going on during the assembly, I told them it was off and on so they explained to me what was happening...  They said that when Mrs. Scott called each class to come and put their money into the wheelbarrow, that not only the kid who was responsible to report their classes amount came up to the front but many other kids in the classes were coming to the front and they emptied the money that was in their pockets into the wheelbarrow.  They said that many of the teachers were crying because it was so sweet and these children are just so giving and kind.

The principal then walked me to the room where the wheelbarrow full of dollars and change was and I was blown away...

My friend, Kim, captured this picture of the bags of money from the kids at school while at the bank.

A fifth grader, knocked on our door that night and he said that he just wanted to congratulate us on getting a van for Lucy.  I invited him in to meet Lucy and he was so, so sincere and sweet to Lucy.  He said, "She is the cutest thing!"  I ran into my friend, Paula, the other day and she gave me a big hug and said that her kids were so excited to help Lucy and that Emma, Jocey's friend, had lost a tooth and she donated the money that the tooth fairy had given her to Lucy's van.  Jocey told me the other day that she had donated some of her money, I asked her when she did it and she said she slipped her money into her backpack and took it to school a couple of weeks ago.  She was so proud.

It has been the hardest to accept money from these beautiful and sweet children.  They have so much love and it is pure and without pretense.  We have learned so much about receiving and our hearts are still bursting from the kindness and love that our community has shown us.

Post on the van coming....

Pictures

I have lots to wonderful things to post but for now I wanted to share pictures of my three littles that my sweet friend, Cassandra Allred, took.  This is the same friend who ran the 1/2 marathon 6 months pregnant.  She is so talented and we really love how she captured our children.  Don't mind me, I wasn't planning on being in the pictures but it just worked out that way:)

Click Here to watch the slideshow

It only works on a computer, not phones or tablets:)

Fundraiser and Stories of Sweet Kindness

So, I could start this story way back when we got Lucy's handicap stroller but I won't.  I will just start by saying that it has always been difficult to get out of the house.  I have gotten more efficient and confident going out but it still hard work.  Depending on Lucy's needs or what needs to go to the car, I have created "ways" of going about this process.  Sometimes, I carry a machine on each shoulder, Lucy in my arms and 2 bags on each hand.  Sometimes, I take a few trips between the car and the house to get everything out that I need or when D and J are with me, I have them carry all of the bags and machines and I carry Lucy (don't be impressed, they lament every time and tell me that they are my slaves:)).  We didn't have a ramp until Lucy got her power chair and since her stroller doesn't fold, I have always just lifted it into the back of our van (even with the ramp, why lift the ramp and unfold it when I can just lift the stroller?)  With the power chair, we have motorcycle ramp that folds into four pieces and I lift that up and fold it out so we can put Lucy's power chair in and out of the van (it is funny because every single time someone sees me when I am loading and unloading they ALWAYS ask if I need help- I must look so helpless!).  We have figured out a temporary solution for Lucy's car seat situation but she is outgrowing it quickly and we need something else.

A long story short, we have always needed a converted wheelchair van.  These vans are really expensive and perfect for us but we have just done with what we have.  As Lucy has gotten bigger, taking her in and out has gotten more difficult and now that I have back pain every day, the idea of a converted van has become more of a necessity than a convenience.  For the last year, I have done a lot of homework on these vans (can we convert the van we have, which van would be best for Lucy and our family, what vans have the least amount of problems, which ones last the longest,  which van would Lucy's power chair fit in, is there something we can have in the van that will run power to Lucy's machines, etc, etc).  I have tried to figure out how we are going to get one without a huge financial burden and I have been applying for several grants that help families with these types of purchases.

Well, two of my friends learned that I have been in this process and they (without my knowledge) created a fundraising page to help Lucy get a van.  Never in a million years could I or would I ask or expect this kind of generosity from others but they started to share the fundraising page and almost immediately, families, friends and strangers started pouring out their support for Lucy and our family.

I can't tell you how humbled and loved our family feels.  We are just blown away that so many care and love for us so much that they would help us get a van.  When Dallin and Jocey's school found out about the fundraiser they called me and asked if they could help too.  They said that they really wanted to help and they were so excited to be able to help someone in the community...how could I tell them no?  Also, the Stanford singles ward in our stake is doing a silent auction to help raise money for the van.

All of this makes my heart swell and puts a lump in my throat and when parents and children and friends tell me personal stories of how everyone is so willing and happy to help, I have to try my hardest to not just burst into tears.

Moms in the pick-up line will stop and roll down their windows to tell me that their children have been so excited to help Lucy.  Kids have made posters to hang up all over the school to advertise the fundraiser. Dallin and Jocey have come home with dollars in their hands that kids have given to them (we were actually kind of embarrassed that they did this and told them to take the money to the office).  One child told me that she wanted to give all of the money she had saved to Lucy.  Some third grade girls and their little sisters, did a bake sale and donated all of the money they earned to the school fundraiser. (The elementary is calling me and Lucy on Skype this Friday while they are in assembly and we can't wait to tell them Thank You) The singles ward members are donating their time, talents and items.  Family members have given us their Christmas money that they usually donate to great causes.  My friend, Kim, who has access to all donors names has told me that many of the people who have donated are strangers to her and me.  Every day I hear another story and it is just so sweet.

(Do you see the cute ramp at the back of the van? So cute.)

It is really hard for Chad and I to accept this kind of help but hearing how much this means to others has really softened our hearts and we are so, so grateful for this kindness and outpouring of love.
I don't know how we will ever repay the kindness and generosity that has been shown to us, we really don't feel like we are worthy or deserving of such service but we are humbled and grateful.  These are the only words that I can even think of saying and they are just a simple, sincere, heart-felt, teary-eyed Thank You!  Thank you to all of you who have donated or will donate or haven't donated but have shown love towards us.  It has touched us greatly.

We can't tell you all how much this van will change our every day lives and we really can't wait to get it.  We won't forget to show you the van we get because it is going to be a pretty big deal (we are still shopping around and price comparing).

http://fundly.com/get-lucy-a-van-for-christmas

NBC tonight

All pictures taken from Victoria Strong's instagram

So, you all know about our friends, the Strong's.  Well, they have been selected as 1 of 25 charities that NBC will be spotlighting tonight at the American Giving Awards.  They will get to walk the red carpet with the stars but really, the Strong's are the real stars.  The Strong's dedicate so much of their time and effort to change the future of SMA and to help those with SMA have a better, fuller life.  

I can't think of any family who I'd rather have represent our SMA community to the world and I am so excited for millions to see the Strong's and what incredible people they are and I am thrilled that millions will know what about this horrible rare disease.

Sneak Peak of Gwendolyn's dress she will be wearing to the Awards.