T's & Bracelets!

NOW AVAILABLE FOR PURCHASE ON THE BLOG!  LOOK ON THE RIGHT SIDEBAR.

Dylan is so happy and shocked that so many people want to wear his shirts & bracelets already!  If you don't have them...order quick!

*****We were able to get the first 500 shirts donated, which meant we could sell them for only $5.00!  After we sell the 500 shirts, the price will go up to $10.00 to cover costs and still help raise funds for the Shaws.  Again, THANK YOU for all the kindness and support you have shown! *****

ps We would LOVE to show Dylan pictures of you and your families wearing the shirts!  Please email me pictures to: dylandshaw@gmail.com.  This will be so much fun for him to see :)

Chelsea

DANCING 4 DYLAN!!!

(click on flyer to make larger)

Most of you know that Mandy owns Infinity Dance.  You probably all know how amazingly talented she is at what she does...but you might not know how many people she has influenced in the Dance World....Did you know there's such thing as the Dance World?!  Well...there is :)  Her passion & love for dancing has impacted SO many lives.

Because of this, there was a huge desire from Studios & Drill Teams across the State wanting to help.  Two wonderful women are making it happen.  The show that evening will be absolutely phenomenal! 

   Here's where you all come in!  We would LOVE you to come!  Besides the amazing show, there will be a silent auction, kids corner, & yummy treats!!  THIS is how you can help & show your support to the Shaw Family!  Come spend the evening with us at this unforgettable event!  The Doin' it for Dylan shirts & bracelets will also be for sale at the show.  Read the flyer above for all the details!  

We can't wait! SEE YOU THERE!!

****If you are planning on donating items for Dancing 4 Dylan, we are trying to have all donations in our hands & ready to go by this Friday, the 15th.  THANK YOU!!!!****

The Latest

Well, today I had to shave Dylan's head. They told us in the beginning he might lose his hair in the back and it has been shedding over the last few days in patches. I now wish I would have paid a little better attention in Cosmetology school when they were teaching us men's cuts, especially a fade! Let's just say we may need a barber to do a little blending. :) It makes him feel a little insecure. He thinks he looks "stupid" with it. I personally think he is the cutest thing no matter how things change on him. He still is a bit bothered by the fact that he can't get his smile up on his right side and now his right eye is cross-eyed. The human body amazes me. It can go through so much and make it through and yet it is so vulnerable at the same time. Every little physical change that occurs makes me wonder how I would feel if it were me. The thing that is so hard for him is how fast it has all happened. It takes him a minute to get use to the changes, at times they are hard for him to accept but all in all he stays tough. What a cool little man I have.

We decided to switch his radiation to the morning and I think it is working better for him. That way he doesn't dread it all day, he gets home early enough to take his nap and is refreshed when friends get home from school. For a while he kind of avoided them. I think it was due to a few things... I think at first he felt weird. Also, after radiation he is always so tired and pretty cranky. He was getting home around 4:30 or 5:00 p.m. when every one was outside playing and I think it bothered him. This last week since we changed his time he wanted to play with his friends twice this week! I was thrilled! I also got him to go to an hour of school with me on Tues. That made me happy too. We have also arranged for a tudor to come to the house a few days a week to work on school work with him. I want things to be as normal and structured as possible for him. One thing that remains the same is the bickering between the children. That helps to make ME feel normal! Haha.

Well my husband got a new calling in church. One that I know will truly bless our family. I feel so strongly that we are constantly being watched over. I am so grateful for the strength I continue to receive from my Heavenly Father. Sometimes my mind starts to wander and worry about the future but I am able to quickly retrieve those undesirable thoughts and focus on the now. Dylan has been shown so much love by so many people, it has touched me to the core. I can't believe the lengths people have gone to in order to make him feel special. He told me that sometimes people treat him like he is the President! Lol. Thank you from the bottom of my heart to everyone that has supported him. From the texts to the comments left on this blog, the treats, the random visits, the cards, the packages, the prizes, the letters... the list goes on and on! I feel the same as Heavenly Father does in Matthew 25, vs 40 when he says, "in as much as ye have done it unto one of the least of these my brethren, ye have done it unto me."

Thank you again for all of the love that has been shown to all of us.

We are still pursuing additional treatment options. We will constantly be searching for anything that will help! You can't put a price on a life. Especially one of your own children. He has been so easy to love and take care of. He has taught me so much in such a short period of time. I am so grateful for every minute of every day I get to spend with my family. If there is anything I can pass on to others, it is to not take those minutes and days for granted. You think it will never be you but you never know. I never thought it would be us. But as crazy as it sounds I don't think I would change it. It has made me appreciate the simple things in life. :)

Thursday's Hero!

Yesterday, we got to go down to a spring football practice at BYU.  They gave us a tour of the facilities and we got to watch about 30 minutes of their actual practice (I know it's early in spring but they look good and have some talented athletes) and I'm predicting a great year for the Cougars.

Dylan was getting a little tired because he hadn't had a nap for the day but he was so excited to be there, he Loves BYU football.  At the end of practice, the whole team huddles and midfield and they brought the kids out (there were two brothers from Maryland with us as well) to meet the team.  The whole team was cheering and yelling for the boys (it was awesome) and they gave each of the boys a gift bag with hats, t-shirts, wristbands and a flag that was signed by all the players.  They then had each of the boys sign the big white flag that flies at every practice and is the one the players carry out in front of them at every game.  Then each of the players gave the boys hi five's or handshakes and then coach Mendenhall came over and spoke to Dylan for a minute one on one and talked to him about being strong and how he has a boy Dylan's age and then he took off his hat and said 'I usually only do this on game day but I'm going to give you this hat, it's only been worn once if you promise to wear it every Saturday'  Dylan of course did and then, in return, gave coach one of his 'doin if for Dylan' bracelets and coach said he would wear that bracelet as long as Dylan wore his hat.  It was awesome of coach Mendenhall to take that extra time to spend with Dylan it is something that we will all remember!  This is probably the coolest and kindest program in sports (that I've heard of anyway).  To make those boys feel like they were a part of the team for even just an hour was something that they'll be talking about for years to come.  So, from all of us to the BYU football team:  Thank you for such a memorable afternoon with your program, we will forever be BYU football fans!

RYAN, the Dad

HELLO FROM DYLAN!! :)

Shirts & bracelets will be available to purchase on the blog really soon!  If you are wanting either RIGHT NOW  email me chelsea.uniformity@gmail.com  & I will get you what you need! THANK YOU!!! :)

Life...

Today I find myself frequently fighting back tears. It probably has a lot to do with lack of sleep and just being a female with a newborn too! I am sitting in the same chair looking out the same window I was when Ryan and Dylan walked through the doors crying hysterically about his diagnosis. I find myself reliving that moment a lot today. It seems like we have known forever. Yet it has only been 3 1/2 weeks. So much has happened in that short amount of time and I have changed so much too. I think we all have. I can't describe all that has happened. I can't describe the feeling of peace and love that dwells in our home. Of course we still have bickering children and Ryan and I occasionally lose our cool but it's different. I love to be home. I always have but now I relish it! Even though the constant pressure to keep up with the laundry, feed the hungry mouths and chase after all the crazy little ones often overwhelms me, there is still no other place I would rather be. This experience has already taught me so much. I have realized that I have so much more to learn and to be. I never did feel like I was anywhere near the kind of person I should be but this has put it all into perspective. I need to be a more nurturing mother. I need to do more for others. Especially for strangers or people I hardly know. I can't tell you how many people have reached out to us that hardly know us or don't at all! It touches me deeply and I often find my self wondering "would I have done the same for them"? We have had so many friends and family rally around us and I can't imagine going through this without their support. I know that there are so many others out there that are in worse situations than us and that they have no one. I don't know what we have done to deserve such an outpouring of love. I do know that I am extremely grateful for it. Just as I am for the gospel in our lives. People often ask how we are getting through this. I know it isn't just with our positive attitudes, I know that we are truly being carried... I know that our home is full of angels and I feel them every day. At times I find myself thinking and worrying about the future. But I know that's natural, I just have to keep reminding myself and others not to waste today worrying about tomorrow! :) We are so lucky to be blessed with each and every day. You never know what tomorrow is going to bring. That has never been more evident in my life. The other day Dylan asked me why he had a brain tumor and I explained the reason for trials. He seemed to grasp the concept some what. And then he asked me, "was your biggest trial when you were 8 and had to get your appendix out?" And I said, "no, my biggest trial has been watching you go through this." Our trials aren't necessarily something that happen directly to us but sometimes happen to people we love. How I wish it could be me. Then I think about what would happen to my other children if it were me. But then I know that too has happened to others- So then I have to remind myself that no matter how bad you think you have it, someone else has it worse. I am so blessed to have all I have been given! I almost feel spoiled in a way. I feel so honored to think that Dylan was such a valiant spirit in heaven and that Heavenly Father felt I was worthy enough to be his mother.

It's pretty challenging having 5 kids at home! Especially when they are all pretty needy- We have Dylan, then Avery who is 5, Livi-3, Dax-almost 2 and Drew who is just a month old. I am doing my best to try to give them all the individual love and attention they all deserve. Thank goodness for my and Ryan's family and friends who have continued to help us out. I can't ever begin to thank them enough and feel like I will eternally owe them!

Our cute, sweet Dawson turned 11 on Thursday. I can't believe he is that old! It freaks me out! Where did the time go? We decided to let him and Dylan invite a few friends to a birthday party celebrating Dawson's birthday and a half-birthday for Dylan since his is in October and I am unsure how he will feel then. I realized he hadn't had a legitimate birthday party since he was 5. Yes, it is under these circumstances that you quickly realize how much more you could and should have done for your kids! It ended up being a lot of fun and it was a good day. :)

Dylan continues to worry what other kids including his friends think of him and that is very sad for me to see. I can't imagine going from completely normal one day to struggling so much the next! He doesn't want to be treated differently. I think the more normalcy we maintain, the more normal he feels. So I still have to get after him when he occasionally throws his fits. And lucky for me, the girls continue to annoy him so they continue to fight which is definitely normal to him! Dax continues to be the lovable Tazmanian Devil while Drew continues to be the little angel baby! We have found an at home tutor that will be coming over twice weekly to help Dylan with his work and keep him a little busy. A little structure never hurt anyone! We also talked about having him go to school for an hour a few times a week. He is still nervous about that because of his vision and hearing problems. I would like to see him do this. I know his friends miss him him so much!

We are still exploring alternative treatment options for Dylan and considering a small variety of options. We are doing our best to provide every single opportunity to him to fight as hard as he can! We have to know that we have done all we could. That is our job as his parents. You always hear that you are your child's only advocate and that has never been more real to me then now. Unfortunately they have been treating Dylan's condition the same way for 30 years and it is up to us to find other alternatives. We continue to pray for the guidance to help us find something that can help him. We have had many suggestions from others and a few have given us some hope! In order for a miracle to happen, you have to believe and have faith that it can. I pray every day for that faith.

It seems like this session of conference has been directed at us. I am so grateful for the inspiration our Prophet and Apostles receive. I am also grateful for the peace and serenity I continue to receive. I am grateful to know with all of my heart, that no matter the outcome of our situation, I will have my family forever... and THAT is how I get through my days. :)

"God didn't promise days without pain, laughter without sorrow, nor sun without rain, But he did promise strength for the day, comfort for the tears and light for the way."

Everyone's fighting a battle

  The day after we found out about Dylan's tumor we had Disney on Ice tickets.  I reaaallly didn't feel like going.  The idea of having to smile, have fun,  AND put make up on, was pretty much overwhelming.  But, after I realized my kids had watched me cry for 24 hours straight, I decided it was a good idea to get out.  I started putting my make up on in the car just as we were approaching the exit to give myself a better chance of tears not ruining it.  Once we got in I was fine, and so happy to see my kids smiling and happy!  During intermission I went to get the girls a treat.  While I was standing in line I was wondering how the world could actually go on after we had just found out about Dylan's tumor.  It was hard for me to keep it together standing in line, by myself,  watching all the people carelessly buying $50.00 cotton candy :)  How lucky they all seemed to be living in happy land.

  A couple days later Mandy called me after she had gone to Costco.  She told me how weird it felt to be doing something that was so normal before....but how not normal it felt.  She was feeling the same as me....how are all these people who I shop with often at Costco, going on with their lives?  How is the world still living??  

  Yesterday I ran into Dylan's cancer buddy Cyndi at Walmart.  We were both in the toy section and were lucky enough to see each other.  She looked so cute!!  She had a great wig on, covering her bald head, and a darling pair of glasses.  I told her....no one would EVER know what you are going through right now.  Then, the reminder came to me...we NEVER know what people are going through.  We can assume that everyone around us are living perfect lives, void of any heartache.  We can convince ourselves we have it worse than most everyone.  We might also start to envy and feel jealous of others "carefree lives".  

   BUT the real truth is,  like I said to Cyndi,  we never know.  I will never understand what people are going through just by looking at them.  None of their trials will be shown to me just in passing.  I have so much sympathy for those who are suffering.   It is so important for me to be kind and patient, even to strangers.  We are all fighting our own battles...