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.

A Thanksgiving Trip

I don't know why we keep fooling ourselves into thinking that going somewhere with kids will be a vacation because it never is.  We will just call this "vacation" a trip.  Even though it was a trip and it was very tiring it was worth it all!

The kids were SO excited (to put it lightly) for this trip and they were counting down the days.  Lucy's Dr.'s gave us the OK and I gathered some extra machines from our medical supply company and we packed, what seems like our entire place, into an RV.

The morning we left, Lucy was ecstatic. Oh and we fit her potty
chair into the shower and it worked perfectly.

Because, right now, an RV is the only way we can travel comfortably and conveniently for 11+ hours.  We were able to do all of Lucy's treatments on time and without a lot of hassle.  It was an awesome way to travel (except not the gas mileage, it was an ugly 5-8 miles/gallon)!

We ended up sleeping at a rest stop and then finished our drive to St. George Thanksgiving morning.  We were thrilled to see our family.  

My sisters girls, are so sweet with Lucy and I just loved
watching them interact with her.

This little boy is Celeste's youngest, Ethan.  He was so adorable with Lucy.  He would lay by her and watch her shows, or he would bring toys to her that he had stuffed into his pocket and once when he was jumping around Lucy, his  mom told him to be careful and he exclaimed "I LOVE Lucy!" as if he was saying, I wouldn't dare hurt her!  It melted my heart to see our family interact with her.

Whenever Aunt Celeste is with Lucy, she helps Lucy dance.  Here they are
copying all of the moves of Angelina Ballerina, Lucy thinks it is tops.

Aunt Alisa, holding Princess Barbie Popstar.

Growing up, we would play a lot of sports together as a family and now that our numbers have multiplied, it is even more fun.

St. George is beautiful!

When Lucy was watching everyone bat, she yelled "Mom, how bout me?"  I didn't see why not so Lucy even got to play.  She was giggling the entire run around the bases and her cousins refused to get her out so we always made it home.

We also went to the St. George Temple for the Christmas lights.

Dallin and Jocey kept yelling, "This is the best vacation ever!"  They really love their cousins.

So, that was that, it was so nice to be with family and so wonderful to remember and celebrate all of the things that I am grateful for, which is many, many, many things.

SBIM 2012

We ran the SBIM on Saturday with GSF and it was really amazing.  I always have a hard time fundraising but all of you helped me raise $3,355 and that doesn't include all that Team Lucy raised!  The entire GSF team raised $135,000, which is beyond incredible.  I know where this money goes and I know that it is helping those who deal with SMA and it is helping researchers get closer to finding a cure.  I thank you all for your support, it means so much to me and to those who benefit from these funds. 

I am always blown away by the support of my friends and family and this year, many of them went so far to run the 1/2 marathon and full marathon.  They spent so much time training and then they took time away from their families to travel for the race.  It made my heart so happy to have so much support and it made it so much more fun too.

These are my friends,  I always ask my self how I got so lucky to have so many selfless, loving friends, and this is only a few of them... 

 Jennifer, Victoria, Me and Kate.  All SMA mom's and it is always so comforting to be in another SMA mom's presence.  There were 9 SMA families at the race and so I got to meet several other families.

This is Jocey telling Victoria about her nail salon, probably.

Lucy didn't sleep at night and we were her night nurses so we didn't get much sleep either.  During the race, I was hoping that Chad and the kids would be at mile 8 but they just missed me.  They met me at the end, though, and it was fun to have them there.

 Team Lucy, except for cousin Matt.  He ran the full marathon and we didn't even get to see him or his wife Elyse, which made me so sad!

Fact: My friend, Cassie (in the white shorts), is 6 months pregnant and she rocked the half-marathon and probably could've ran the full.  She is a superstar.

 My family.  Cousin Amie flew from Boise and drove down to SB with me and the kids (total trooper).  She got to meet Lucy for the first time and we just loved the time we got to spend with her.  Crystal came with her family from St. George, Angela and Thomas came from AZ and hadn't trained very much (Angela has IT issues) and they all did awesome!  Mel had to put up with Chad in the car, they drove down together after work.  

Jocey talking to Gwendolyn, I think G had enough of Jocey and she would just closer her eyes (how she says "No")  when Jocey would come and drill her with questions- she can be a little much sometimes.  We love Gwendolyn and we were so thrilled to see her "run" with Bill and Victoria.  It was heart-warming! 

For me, the race was great.  Every mile marker, I just kept thinking, I am so glad I am not running the full marathon today- I recognized every part of the course and that memory of last year is just a little too fresh still.  I wasn't too worried about finishing the race so I pushed myself a bit- I got a little worn out about mile 9 but there were so many spectators yelling "NEVER GIVE UP!" and I thought of Bill and Victoria pushing Gwendolyn in her first 1/2 marathon.  I also thought of Lucy and all of our special friends with SMA and how grateful I am that I can run and breath and push myself and that I can do something for them that they can't do for themselves.  What an amazing blessing.  I was running out of gas the last mile and one of the Never Give Up runners I talked to at the beginning of the race had caught up to me, nudged my shoulder and said, "come on!" and he helped me push myself to the finish line (time: 1:39).  It was such a great weekend and I am so grateful to be surrounded by incredible, supportive and optimistic people.  The Strong family is an inspiration and I am so happy to be a part of something bigger than me to help these children (and adults) that I love so much!

You can read my cousin Amie's account of our experience here.  I always love reading her blog.

Bad Day

Taking care of Lucy is scary, we are fortunate that scary events (or events that we aren't used to managing) don't happen as often as they could.  Well, the other day, two scary events happened and I am amazed how Lucy handles them...

1.  Lucy needed to go potty so I sat her on her toilet.  When she was done she hollered, "Mom, I am done!!"  I was wiping her bum (this may be TMI) and noticed I needed to wipe further back on her bum so I lifted her legs a little (you know, how you do when changing a diaper?)  Well, that extra weight on top tipped her toilet seat over and the head support fell back, dropping Lucy's head back and her body off of her toilet.  My initial reaction was to lift her legs up because I was already holding onto her legs.  Well, Lucy was now hanging upside down.  I kept apologizing to her because her mask was falling out of her nose and when she doesn't have a good seal on her mask, it makes it very difficult to get the air she needs.  She had spit coming out of her mouth and I knew she needed suctioned.  I was trying to just lay her down but I had poo wipes in one hand and her back was arched so I was trying to figure out how to lay her down without hurting her (and I was worried I was hurting her already).  I finally set her down on her side/back, cleaned her up and then suctioned her.  Then I put my face right in front of hers and said, "Lucy are you alright?" She had a blank stare the entire time... and she started to laugh.  She thought the whole ordeal was hilarious.  I was just glad she was okay.

If that wasn't enough for one day...

2.  Whenever we go somewhere, I take Lucy's machines, bags and my purse to the car and then I make another trip with Lucy.  My hands are always full but I have done this same trip a million times and I always do the same thing, put Lucy in her seat, throw my keys to my seat, buckle her up, shut the door, walk to my door, open it and then go.  Well, I shut Lucy's door, walked to my door and it wouldn't open!  I kept thinking, "No, this can't be happening" as I checked each door.  I don't know how it happened because I can't lock the doors with the keys unless all doors are closed and the keys were in the car when I shut Lucy's door- I don't remember doing this but I think I locked the door manually when I shut the other front door, before closing Lucy's door.  I started to freak out and checked inside to see if Chad left his spare at home.  I called him, it would take about 25 minutes for him to get home, called locksmith- they said it would take 25 minutes.  I was supposed to pick up the kids from school, called a 3 friends and no one answered.  My friend, Kati, called back and said she could pick up D and J.  Then she gave me the best advice (I wasn't thinking clearly) she said to call 911, they will be there in two minutes.  I called 911 and I got "we are experiencing a high volume of callers..."  I just wanted to scream!  They finally got on the line and transferred me twice and the firemen were then on their way.  The entire time (which was about 15 minutes), I was peeking through the window at Lucy, asking her if she was okay.  I told her to "not choke" and I was ready to break a window if she did.  She was calm and I could see her eyebrows go up and down when I asked her if she was okay.  When the fireman came, it took them 2 minutes to unlock the door.  I opened Lucy's door, suctioned her (she had a bunch of spit coming out of her mouth-she does pretty good at pushing it out but she was still recovering from pneumonia, which made me really nervous).  The first thing she said to me was "I am so sorry that you got locked out of the car!"  Thank heavens for the MP firemen, who have come to our rescue several times and for my dear friends who do and care so much for us.

I just felt horrible but Lucy's calmness and forgiving heart made me feel so much better.

Halloween

Halloween is just a busy day!  We had plans to carve cool pumpkins but it turns out that most everyone carves their pumpkins before Halloween and I searched several stores looking for pumpkin carving kits but they were all sold out.  Lucy wanted "just one big triangle" on her pumpkin.  I won't tell you what Chad had to say about that... Lucy wasn't feeling well enough to go trick-or-treating but she did go to Aunt Melanie's trunk-or-treat for a few minutes so she got to dress up in her costume.  Dallin and Jocey went out with friends.  I ended up going with Jocey and her friend because her family is new to the area.