twinners

We LOVE That Drew looks JUST like his brother! So sweet!!

A Bear Lake Bench for Dyl

What a wonderful place this will be to sit, reflect, and enjoy the beauty of nature. 




I imagine that Dylan will take a little time out of his busy schedule to enjoy it with us. Sure miss him.....

Happy Birthday!

Dylan,

   HAPPY HAPPY BIRTHDAY!  We have all thought about this day the last 3 months and wondered what it was going to be like....what we should do....and how we would celebrate your birthday without you here.  Your parents decided to give you the wonderful gift of doing your temple work.  I know you already know this. ..but all of our family was able to go and feel the sweet, sweet spirit there.  It was a very emotional experience for me, and gave me a whole new outlook on those we are doing work for.  I am so grateful for the external perspective and desire to be my very best I have gotten with you on the other side.  I have been able to feel your presence on a couple different occasions and I am so so thankful.  Those experiences are truly tender mercies. 

  I can't believe it was a year ago we gave you those comfy slippers for your birthday.  You were the king of "Comfy's"!!  Never did I imagine they would be your favorite things to wear, and eventually be the very shoes you'd be buried in.  It breaks my heart, but also makes me happy.  I am learning that much of this experience is bitter sweet.
  Today we will spend our time thinking about you and celebrating the life you lived.  We will bake cupcakes and take them to the neighbor kids, make fleece blankets for kids at Primary Childrends, eat your favorite pork from Cafe Rio, and go visit your resting place.  I know there will be lots of tears today, just because we miss you so so much.  I can't imagine what your mom must feel like on this day, but just like I promised....I will take good care of her. I know you are so proud of how strong your parents have been.  It's amazing the strength that comes out of people when trials like this are given to them.
  I'm not sure how birthdays are celebrated in Heaven, but I hope you know that today is YOUR special day!!! A day we will celebrate YOU every single year.  We love you SO much!  Life here is not the same without you.  We hope somehow you get the cupcake Livi is determined to send to heaven..... :)  HAPPY BIRTHDAY to the sweetest boy we know!

Love, Chelsea

Life Goes On-

Well, like it or not, life goes on. At least for those of us who are left behind. When you are in the midst of your trial and know what you are looking at, there are many times when you don't think that when the time comes you'll be able to live through it and regain somewhat of a "normal life" again. And then it comes. And then you are still living. And you can't believe it... And many times you feel guilty for feeling okay and occasionally even having fun! This whole process of losing Dylan has been such an interesting one. There are many days where I feel like a 70 year old having been through so much both emotionally and spiritually! Then there are days when I feel like a 17 year old and feel like there is no way I could have gone through something like this so young. Most of the time I try to not think of my situation and my loss because I realize there are so many others out there who have it so much worse. I have been reading a book called "The Happiness Project" (many of you are probably sick of me talking about it!) and it is pretty amazing! Something the book is constantly emphasizing is that happiness isn't something that just falls into your lap. It is something we have to seek out and work for! It has to be a constant effort- There are so many different elements that factor into true happiness. At one point in the book it sums it up by saying that we experience happiness when we are growing. Sometimes we can choose when we want to grow and sometimes things force us to. What we choose when we are forced to is up to us! (I don't know if that makes any sense-) But my whole point is that we sometimes don't choose to end up in difficult situations but we do get to choose what to do with them. I am hoping to become a better person because of all of this. I have seen what happens to others when they choose a different path. It doesn't lead to happiness... Dylan wouldn't want for us to be miserable. More than anything else on this earth, he cared about how we felt! (Especially me! :)) I have felt him often when I have been struggling and he continues to let me know that he doesn't want me to be sad and that he is so happy! I am so grateful for those experiences I have had where he has been a comfort to me. I miss him every single day more than words can express, but every day is one day closer to when we get to see him again. Something else that stood out to me in the book (which BTW I am only half way through!) is choosing to be happy with the present. It is true that often times I find myself looking to the future for things that are going to make me happy. Finding happiness in every day is something I am trying to make a greater effort at. Ryan and I are SO blessed with our other children, family, friends, jobs, house, etc... It is so easy to sink into the sorrow of the missing but our blessings far outweigh our losses.

When I reflect on the 4 months that Dylan was sick, I often think about all that many people did for us during that time. I know that there are many who we didn't formally thank and I don't even know where to start! It makes me feel terrible and it all feels like a blur! A traumatic and depressing one, but also an overwhelmed and loving one! Please know that we do love and appreciate everything that has been done for us and our true hope is that we will be able to repay everyone that gave so much to us. Thank you again for everything. It will never be forgotten!

And so we carry on... With school, with lessons, with work, with church, etc... Like it or not, life goes on. We were able to get away last weekend to Bear Lake, it was fantastic! The little ones picked leaves from the trees up there and on the way home we stopped and visited Dylan's grave and they scattered the leaves on it. He would have loved our cabin... We were missing him there! My sweet friend JeriAnn found the cutest vintage sign that said, "Welcome to Bear Lake" and her amazingly talented husband made a matching piece they fastened to the bottom that said, "The greatest place in the galaxy!" Quoted by Dylan. We hung it right on the wall as you walk in and it makes us feel like we have a little Dylan there.

Many have asked how the other kids are doing and the honest truth is that they are doing well. Dawson occasionally has a few breakdowns but we all do. As soon as Avery came home on the first day of Kindergarten, I got into her back pack to see what she had done that day. On one of the papers they could draw whatever they wanted. She had covered hers with hearts that had cracks in them. :( Livi often says, "when Dylan gets back..." Dax is 2 and obviously doesn't get it but when you ask where Dylan is he says, "in the sky" and points up. Drew is growing like a champ and has gotten very needy which he deserves. He is screaming for attention right now which is why I am going to bring this post to a close! Thank you again for all of the love, support and prayers we continue to receive. We know that it is because of all of those acts we have been able to move forward. We love you all! D4D Always!!!! :)

Child of God

  Tonight I was putting my two and half year old, Ella to bed.  We always sing a few songs.  She wanted to sing I am a Child of God, so we did.  At the end it says, "teach me all that I must do, to live with Him someday."  After she finished she looked at me and said, "live with who mom??"
  I told her it meant to live with Jesus.  She then replied,  "Oh ya, and Dylan lives with Jesus.  Jesus knows Dylan mom, and he loves him, and takes care of him."
   That obviously caught me way off guard.  Big words spoken out of a little mouth.  It brought me a few tears, and sweet peace.  I know Dylan is being taken care of, and the he is a very loved boy in Heaven.  We miss him so much....every single day.

Adjustments...

Life has seemed pretty weird lately. Not that anything major has happened or that things have gotten harder, just different. Sending Dawson back to school without Dylan was not so fun for me and I am sure he is feeling that void. Avery started Kindergarten yesterday so I am sure it's nice having her to walk with to the bus stop in the morning, but I know that is always in the back of Dawson's mind. He is doing very well though!

Time just keeps on ticking and the days keep getting further and further away since I last heard my sweet Dylan's voice. It is so hard. But we really are okay. I try not to think of how much time I haven't seen him but turning that into how much closer I am to seeing him again. I don't in any way mean for this to be a depressing post, because I'm not- I just miss him. I can't begin to describe the amazing blessings we have been given with our other children. I am grateful for every single one of them! (Even when they are naughty!) I can't imagine going through all of this if I didn't have their sweet faces to cheer me up every day. Even our 2 yr. old Dax has picked up on it. Last night I was caught off guard by a St. Jude's commercial and started crying and Dax looked up at me and said, "no cry, be happy!" I do my best and have way more good then bad days but when those bad days come, they come with a vengeance! This is not something I ever thought I would have to deal with but we are and doing it the best way we can! We are committed to this experience bringing our family closer together and also closer to our Savior.

I am so grateful for all of the wonderful people that exist in this world. We couldn't have gotten through this without all of the love and support we have received. Words aren't even enough. And I sound so cheesy saying that but it's so true. You know if you are one of those wonderful people and I continue to thank you from the bottom of my heart.

The movie "Ever After" was playing in our car a few weeks ago and there was a line in it that really stuck with me. The evil stepmother said, "no matter how bad you think things are, they can always get worse." I know there are many others out there who are suffering worse then we are. And my heart goes out to them. I feel so ignorant at times thinking back to before all of this happened, I didn't realize how many sick kids there are or how many people are dealing with all kinds of trials and tragedies. Often times it is only through our trials that we gain a deeper sympathy and develop a love for others we may not ever have known. I am thankful to have learned this even though it still is so so hard.

My husband is my very favorite human on this whole planet and there is no one else I would rather have by my side facing adversity. He is my best friend and I am not sure how I lucked out snagging him!!! He is such a rock and doesn't judge me on my worst days even though I am sure he would love to send me away at times! I have developed such a deeper love for him watching him as he handled many of the situations with Dylan. I love him so much...

Another example of the circle of life has occurred today! My little brother Trevor and his cute wife Tami just welcomed a new baby into this world... Little Trey! Congrats to them! I don't know how many of you know but Tami's brother Kasey was killed in a plane crash about a week and half after Dylan's passing. It was a pretty intense month for her. My heart continues to go out to their family. I hope that this new little blessing is able to bring a little healing to their hearts as my baby Drew was able to do for me.

This life was never meant to be easy. But we have to tolerate it and come out better people especially through these tough times! It's so easy to become relaxed and in ways ignorant when things are going well. That in itself is a test... What will YOU do when you don't have something devastating looking you in the face? It's easy to hit your knees when you want the help. But are you doing it when you aren't desperate for it? That's something I am trying to keep a constant eye on. Not getting comfortable. Trust me, I have gotten comfortable many times! I still have sooooooo much work to do. But I do need to acknowledge my sweet little Dylan and for the example he set for my family and for so many others. I know that he was willing to go through this for us. I am committed that his sacrifice won't be in vain.... I love you Dylan and I will forever be missing you! (Well, not forever- :)

The missing

 Just over a month out, and I think the missing is really starting to set in.  The reality of what happened is becoming more real...more permanent.  I am pretty sure I can speak for all of us, but the last week has been one of the hardest.  Time apart has grown longer and we continue doing things together, just missing one sweet member of our family.  We always talk about memories and funny stories.  Sometimes it makes us laugh, and sometimes it starts the tears.  Life is truly about spending time with those you love, and creating memories....because you just never know when someone you love won't be here.  We love you Dylan and would give a whole lot to have you yelling "Banana the POWER"!! again....even if it was the most obnoxious thing in the world :)     

Remembering Dylan

Life Since...

Well where do I even start? I feel terrible I haven't posted anything in a while, as you can imagine, things have been busy and different around here... Today is the "official" date of the one month mark since Dylan's passing. (We like to call it a "Graduation") It's gone by so fast. But often it feels like forever ago. I can't ever accurately explain the wide range of emotions that I continue to feel. But the majority of the time I do feel peace. I have had the opportunity to feel Dylan's presence often. Every time I do, I know he is so happy. I know he feels better. And I KNOW that he is in the presence of our loving Heavenly Father and our Savior. I know that he has already learned so much from his experience there so far. I know that I have learned more in the last 5 months than I have in all of my years previous. The last thing I said to Dylan before they closed the casket for good was, "my world will never be the same because of you". I meant that in so many ways. The way I view the world now is so different. The way I view life and death is so different. I'm not afraid anymore. I've learned that we can do hard things. I've learned that there is so much good in this world. I've learned that there are worse things than death. Like watching your child loose all abilities and watching them struggle. I am so grateful for all of the miracles that did indeed happen during our experience even though at the time I didn't recognize them. I came across this quote and it made sense to me. It said, "Does our daily focus on the ordinary events of life dampen our awareness of the providential and miraculous events occuring in and around us all the time?" It's true. One of the biggest miracles in Dylan's journey was the fact that when it was his time to go, it was quick. His type of tumor can often drag out for months, years even, with unthinkable symptoms that leave them completely aware of what's going on, yet trapped in their shell and in pain. He didn't have to face much of this. He maintained his ability to eat, breathe and speak up until the last few hours of his life. In many others, this isn't the case. Originally we were given 12-18 months so in ways we feel like we were shorted. We have come to the conclusion that we had a late diagnosis which in turn ended up being a blessing that he was able to live a normal life as long as possible. It seems so surreal that I am talking about a child we've lost. I never would have imagined we would be faced with this. You never think it will be you. You never can fully understand until it's you. It's hard. It's so sad. It hurts. On the other hand I can say, with full conviction, that I wouldn't have been able to learn all I have any other way. Dawson asked me a few weeks ago if I thought this was our big test and that if we weren't going to have any other major trials... I told him that I wish I could say yes. I know it's not the end of our struggles. I pray we don't have to do something like this again though. But it is the only way for us to truly grow. I wish I had days to describe to you all what we have been through and all of the amazing experiences we've had. I will in time. Dylan taught me so much more than I ever taught him. I want you to know that we are doing well. I can't imagine how much worse this could've been had we not had our faith and an amazing support system of family and friends. I can't thank you enough for all that has and continues to be done for us. We sincerely hope that we will be able to pay it forward. We have an insane amount of that to do! Thank you so much for all of your words of sympathy and encouragement whether it be a text, card or email, we do read them! It continues to be crazy around here so we don't often have time to respond. But we really love getting them and it does help us push forward! I have committed to Dylan's passing to not be in vain. I know this will forever change our family. I know that I will be able to say that Dylan is responsible for getting our family to heaven... He will forever be deeply missed but never forgotten. I know that we will see him again and that it will be a beautiful reunion. Until then... we will continue to "Do It 4 Dylan". :)

We have Peace!

At church yesterday a friend gave me a card that had this quote,

"The Lord compersates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude." Elder Joseph B. Wirthlin, October 2008.

Her own sister passed away 2 months ago with cancer, and this quote was shared with her family during her sister's funeral, and she said that she loved it and found great comfort in knowing the Lord knows us and our sorrows. I too found comfort in those words, and I know that the Lord does know us and our sorrows.

My brother sent this quote, " From an Eternal Perspective, the only death that is premature is the death of one who is not prepared to meet God." Elder Ballard.

Dylan was prepared.

We grieve Dylan's passing, but are grateful to know where he is. Dawson (Dylan's older brother) said the morning of Dylan's passing, "Heavenly Father needed him." Yes I too believe that Heavenly Father needed him and that he has a very special mission to accomplish.

Words cannot express the love and appreciation we have to all of you who have sent cards, made phone calls, come by to visit, sent money, send gifts, prayed for our family, offered words of sorrow, came to the viewing and to the funeral, and who continue to be such a big source of strength to us. We love you all dearly and know that you will all be blessed for having helped. I am so impressed with Ryan and Mandy's strength through all of this. These last 4 months have been the most trying and the hardest thing I have ever been through. Watching your children watch their children go through trials has been extremely hard for me. As the grandma it has been very hard to see the decline of Dylan. We are grateful that he did not have to suffer any longer, and that he is now free to run and play and do all the things he has not been able to do for a long time. We have a very special Guardian Angel watching over us and that is very comforting!

Thanks again to all of you!

My Friend, My Mentor, My Son

I sit here alone in our quiet house, my kids off playing with cousins and my wife out doing some last minute preparations for this weekend and my thoughts are consumed by my son, Dylan. What a truly amazing kid he was. He was so thoughtful and kind to others. He always wanted to make sure everyone was included and not left out of anything or felt bad. He went out of his way to say 'hi' to people as they came into the room and truly loved everyone, in fact I can't remember him ever speaking ill of anyone (even the bullies at school that would tease and pick on him). This week has been the hardest, by far, of my life and I laugh when I look back and think of times when I 'thought' I was having it hard like going to school or struggling on my mission. Those challenges pale in comparison to what we have faced this week. Watching Dylan decline so rapidly over the last four months was the single most trying thing as a father I could have possibly witnessed. Knowing I could physically do nothing to take away his pain or suffering literally broke my heart and often my spirit. We fasted and prayed and gave him blessings to try and ease his pain and to ask for a miracle and yet that miracle never came (at least not in the form we wanted). I had to stand by and watch his 9 year old body deteriorate before my eyes and all the modern medicines and alternative treatments we tried couldn't stop that ugly tumor wrapped inside his brain stem. How I wished I could reach inside and rip that wicked growth out of him or transplant it into my own brain stem as I would have gladly and willingly gave my life for his. But that was not my course in life. Mine is to remain behind and shepherd my other children through this life. Dylan's was to come to Earth, gain a body and fulfill his earthly mission and return home to his Heavenly Father having done all that was asked of him albeit after a very short time. And while I will miss him terribly every day for the rest of my life and would literally do anything to have him back with me as a healthy boy, I can draw strength from the knowledge that there is a plan for all of us that is bigger than we can imagine. There is a work for us all to do and while we are bound with earthly perspective, we cannot fully comprehend what that work fully entails and often the way seems impassable and strewn with thick branches and thorns. I know that when we are able to look back on this earthy experience but do so with an eternal perspective, all things will become clear and the size and scope of our mission will be brought into focus and we will be amazed and what we accomplished and how many 'coincidences' shaped our paths and how often our father truly intervened when we felt lost or hopeless.

Many People have asked why God would let this happen. Why couldn't he, the omnipotent ruler of the Universe, reach down his hand and take it away? The very simple answer is: He could but he won't. And the reason being is, if he did he would forfeit the very plan that we chose to be apart of. If he intervened at every difficult or painful crossroad and spared us every moment of grief and pain in this life, then we would not learn to walk by faith. We would have no need of the atonement because all our painful decisions and paths would be protected and chosen by our Father in Heaven and our free agency would be rendered useless. We MUST pass through the trials of life to gain experience and wisdom and learn true Christlike love for our fellow man and render selfless service to those around us. This is our purpose on Earth; to love and serve one another and to bear each others' burdens and obey our God's commandments and prove ourselves herewith to see whichever way we should go. I am so proud and honored to be Dylan's dad and he has taught me more in the last four months about being good and faithfully enduring to the end than I have learned in the previous 36 years of my life. He is an amazing example of the pure love of Christ and the charity that is required of us. He gained so much pleasure in doing good for others and constantly worried about those that were going through their own trials (unfortunately too many of them were also affected by cancer). He loved life, he loved to laugh and make jokes and do stand up routines for people (he was pretty good at Brian Reagan). He genuinely cared for people and did more to affect people's lives in his 9 years on earth than I probably will be able to in the remainder of my time here. So many people have sent their concerns and condolences and a common theme in their messages is how much Dylan has changed their lives and how they want to do better because of him. You cannot imagine how proud this makes me as a father! My son having that much positive influence on the world is more gratifying that any other accomplishment I can think of. I can truly and honestly say that Dylan left this world better than he found it and not everyone can say that. His memory will live on in the works and lives of those left behind. My hope is for that memory to never fade, that we may always remember him and his life and his example and that in a year from now, when the pain subsides and the freshness of this experience is gone, that we all don't go back to 'the way things were'. I hope his example stands as a beacon for us all to strive to do better, to be better, to love better, to live better.

I will never feel fully worthy of having Dylan as my son but I feel privileged to have been chosen. We will forever be linked by the earthly bond and the heart of a father has truly been turned to the children. He taught me more than I ever taught him and I will forever be grateful to him for that. He has set the standard now that I must live up to and strive to become more like him. He will forever be my inspiration and guidance through this world. He truly and simply is my friend, my mentor and I'm so proud to call him my son!

I cannot thank you all enough for the heartfelt wishes of hope and support and pray God will bless you all for your acts of kindness on our behalf and pour his love and spirit upon you all!

Ryan-the Dad

Perfect Love

Services

Viewing: Friday 6:00-9:00pm

                Saturday 10:00-11:30am

Funeral: Saturday 12:00pm

Stake Center: 2200 S 4300 W, West Haven

In lieu of flowers, please donate to Make a Wish

Free....

Early this morning, 1:20, our sweet Dylan went to heaven.  He is free from the tumor.  He is free from any pain or sadness.  It was not easy to let him go.  Our lives were blessed every single day because he was in them.  We will feel this void for the remainder of our lives here on the Earth.  I know, he will be here with us whenever possible.  I know that he will watch over his brothers, sisters, parents, and family.  I know it was hard for him to leave us.  His mission on the other side is only beginning.  We love him so much, and will anxiously look forward to the beautiful reunion I know awaits us.  Thank you, from our hearts and souls, for all your love, concern, & prayers.  

We will forever be Doin' it 4 Dylan!

Not great...

 

   The family photo, and this picture were taken at Bear Lake this last week.  We were all looking forward to getting away and going to our "happy place"...Dylan included.  It was a good week spent together...but not one of our typical weeks we are used to spending there.  Dylan is a fish, and would swim from sun up to sun down.  I think a small part of him refused to believe that he wouldn't be able to do the same thing he's done every summer.  He was pretty down and sad once we were there.  It was hard for him to watch all the other kids run and play and swim.  As you can imagine, it was heartbreaking for all of us.  SO many times I wished that Bear Lake could be like the Island on the show Lost.  That all of the sudden, just because we were in Bear Lake, he'd be free of the wheel chair... and all the other horrible effects of his tumor.   Through out the week his overall health was declining.  By Friday, Mandy and Ryan decided to take him in for another cat scan.  The results showed that the tumor has grown by 2cm.   This explained the decline, but is hard to hear.  The tumor is obviously very aggressive right now.  Today has been the worst so far.  He is pretty lethargic, been throwing up, not interested in eating, horrible headache, not really able to move at all, and very slurred speech.   All of these are symptoms of the tumor.  It is heartbreaking to see him like this.  It is so crazy that his mind can be just as normal as could be, but the tumor can be destroying him physically.  He is the same sweet boy as always.   I can't imagine how frustrating this must be for him.   Please continue to pray for him and his family.  Pray for his mom and dad.   I don't know if you all feel like this but our prayer lists are getting soooo long I can barely keep up.  Could you do us one more favor and pray for our newest little family member MASON.  He needs some extra help too..... pretty much we are a wreck  :)

 

I found this on pinterest the other day and decided it was fitting for us right now.

Families are forever

BBQ

I just got an email from Jennifer Woods, who has a son that is friends with Dylan.  She asked me to share about the Lacrosse Tournament and BBQ they are doing this weekend for him.  DAWSON will be playing in the tournament :)  Stop by and grab some yummy food!! :)

Chelsea

Grandchildren are the BEST!!!

We just got back from a week in Idaho with children and grandchildren to celebrate the 4th of July. It was WONDERFUL!!!

Ryan and Mandy and family went to Bear Lake to enjoy family for the 4th of July, so they were not with us.

Every prayer that was said and every blessing that was offered, included "Please bless Dylan's tumor to keep shrinking" - Tonight a granddaughter asked Heavenly Father to "Please bless Dylan's tumor to keep shrinking and bless that it might go away" - most prayers were offered by grandchildren, since they out number us adults, and oh how tender they were. Every time a prayer was offered, my heart filled with love and graditude for a wonderful family and knowledge of a Father in Heaven that Loves us dearly.

Everyone enjoy this summer!!! Isn't it nice to finally have it!!

I have to tell you how amazing Dawson (Dylan's older brother) is - I have watched him be so tender with Dylan, help him walk, push him in the wheel chair, and just be an amazing older brother. I know that Heavenly Father knew who to send first to help Dylan!!! I LOVE YOU DAWSON!!!! and Heavenly Father loves you too!!!!

Grandma Shaw

Drew's Blessing Day

Today was a special day for this sweet little baby.   For the last four months, everything we do is a little emotional.  Today was not much different.  Ryan gave a wonderful blessing & the spirit was very tender and strong.  I think a huge part of that is because of the love and support in the Shaws ward.  I don't know many of them, but I sat and looked around I could recognize face after face.....ALL from people coming over to bring in meals, sharing messages, or just stopping by to check in.  What a blessing each of those people have been.  I was emotional just seeing their faces. 

   Drew was sent to this Earth with the ability to give peace and healing.  He is a sign of hope, and love.  He is proof that our Heavenly Father knows much more than us what we need, and  exactly WHEN we will need it.  We all love this baby more than words. 

Dylan & Drew have a special little bond. :)

Dawson & Dax...two of the cutest boys EVER.

My sister is probably the strongest, most loving, caring, compassionate person I know.  I love her.  

The whole Shaw family together!  Beautiful.

COME!!! :)

(Cyndi & Becky-the creator of Anything for a Friend)

TOMORROW SATURDAY, the 11th, is our dear friend Cyndi's fundraiser event.  HERE  is the link with all the info.  We would LOVE to see as many of you there as possible!  What a wonderful thing to be able to lift someone up emotionally & financially during their fight with cancer.  Texas Roadhouse will be catering...YUM!... and rumor has it they have some pretty awesome items that will be up for auction!   

See you there!!

                  5pm to 9pm

              Weber State University

              Shepherd Union, Ballroom

             Ogden, UT 84408

Overwhelmed and Exhausted!

I have to admit I have been procrastinating my updating because there is so much to be said and I honestly can't find a spare second to myself to do it! Just when I think I get a minute there is another item to fetch, food to make or diapers to change! But I love it. My house is full of life!

I need to backtrack a little to about a week and a half ago. First I have to say how amazed I continue to be by the love and compassion complete strangers have shown us! I was contacted a little over a month ago by a man named Dustin Pike (he is a fabulous artist, look up his work!) about his interest in collecting handmade cards from around the world for Dylan. He has a blog and has many followers and he put out a challenge for them to contribute to Dylan's card drive. He offered them an incentive and took the time to compensate each person that mailed him a personal card to Dylan. Well, right before we left to Florida (which I'll get to in a second) he and another woman, Shirley (who headed up her own drive too) arranged to hand deliver the cards to Dylan. In all there were close to 400 of the cutest cards I have ever seen! He received heartfelt support from people in places like Poland, the U.K., Australia, the Netherlands, France, Sri Lanka, Greece... it was crazy!!! And so many of them had visited this blog and knew his story and shared their genuine love and concern for Dylan and our family. It was truly amazing and it meant so much to all of us! I will post pictures soon of many of them as well as our Make a Wish Trip. Thank you SO much to all of you that contributed to that and especially to Dustin and Shirley. We will always remember how special that was! :)

We just returned Tuesday night from our Make A Wish trip Disneyworld. All I can say is WOW. Through this traumatic experience we have discovered another kind of world/community we never really knew existed. We were given the opportunity by Make A Wish to take our whole family to Florida. We had heard all about how amazing this Give Kids the World Village in Orlando was. It is a resort that was built specifically for children with life threatening illnesses. I don't even know how to describe this place without using my hands and being dramatic... It is unbelievable and undescribable. It is on about 70 acres of land and consists of about 200 villas (which are full 365 days a year), a train station, theater, Gingerbread House (where we ate breakfast and dinner), IceCream Palace (endless ice cream!), 2 pools, lakes, Castle of Miracles, Candyland playground... It is insane! They have approximately 1500 volunteers per week come through. The food is donated by delicious restaurants, the volunteers obviously work for free, I have never seen anything like it in my life. They had parties every night, our kids were in heaven! Disneyworld, Sea World and Universal Studios all donate the passes that are given to every family. I have gone back and forth between feeling so guilty that there are children in other parts of the world that aren't blessed with amazing experiences like this during their battle with their sicknesses, to feeling so grateful that Dylan is given this unforgettable experience. He deserves it, he is one in a million! It was incredible to say the least, we made wonderful memories we will never forget and I was so happy to have my family all together to share this special time. We would never would have been able to do this if my awesome mom and Ryan's fantastic parents hadn't have joined us for the party! It was quite an adventure with 6 kids on planes and in parks! Many thanks to them for their willingness to be there for us! Also a special thanks goes out to our wish grantors Dana and Jon, Make A Wish, Give Kids the World Village, all of the donors and volunteers that made our trip possible! We never would have been able to have done this in a million years! We are still recuperating!

I know many of you are wondering how Dylan is doing. Yesterday was his follow up MRI to see how the radiation has affected the tumor. It shows that is has shrunk close to a centimeter which is good news for now. They say it does look more dense though which could not be a great thing but his symptoms have been pretty stable for a while so they think we don't need to be as concerned yet unless his symptoms progress. He has been really tired and been napping a lot since we have gotten home but I am still exhausted so I can only imagine what his little body is experiencing. It was a little depressing on our vacation to see him unable to do some of the things he loves like swimming on his own. We're going to do our best to come up with some options to help him do as much as he can this summer. We are just so thankful for every minute we have! Sometimes I don't want to go to bed at night because it means another day has passed. We continue to do our best in the optimism department and are still praying for a miracle!!! A lady I met at GKTW reminded me that God is still in the miracle business! :) I know it is possible. When we took Dyl to Primary's yesterday, it broke my heart to see all of the sick kids everywhere! You don't realize it until you have one. At least I didn't... Maybe it was ignorance. All I know is that there are so many out there and you never think it will be yours! As much as it stinks and there is so much about it I despise, I never would have discovered this beautiful side of the world I hadn't realized existed. So many people are so willing to share all they can with us and we are forever changed.

One majorly important lesson I have learned is how special each of my children are in their own individual way. They each play such an important role in this situation and I can't imagine going through this without any of them. They make everyday do-able. They are there to buzz around making us laugh and filling our home with love. Often distractions too, such as fighting and throwing fits, but that helps us to fill normal! I have THE BEST husband on the planet. I do. He is my perfect match and balances me out. I cannot imagine going through this with anyone else. He is my rock. And of course their is Dylan. To whom this entire blog is dedicated to... My friend today made a very good point. Her dad is sick with cancer too. She said, "he has to go through this because there are many who couldn't". That's exactly how I feel about Dylan. Do I think some people should "have to get cancer"? No. But the only way we can learn and grow is through trials. I know this isn't our last. Hopefully it's our worst. You just never know... But I believe now more than ever that this life is but an instant compared to the eternities. I am beyond grateful for that knowledge and for that comfort it continues to bring me. :) Keep praying for us, we feel every single one of them! We love and appreciate everyone who has even thought about us in any way. We do live in a wonderful world...

MAKE A WISH!

DYLAN RAISES HIS STAR





  Today we had the chance to go with the Shaws to the Make a Wish Center in Salt Lake.  It was a tender experience, that also was a reminder of many other children who are and have gone through their own struggles.  It was a very emotional mix of happy, sad, excited, and  overwhelmed.  The wish granters were so sweet with our family, especially Dylan.  THANK YOU!!  I am SO thankful they get to go away together as a family & have fun.  They deserve every second of this time together.  I'm sure they will have words of their own to share about Make a Wish  & lots of fun pictures of their trip to DISNEYWORLD!  FINALLY Dylan is feeling better and will hopefully be able to really enjoy the trip :)   Thank you for your love and prayers!!  xo

Chelsea

7 years ago

Dylan 2004 :)

This photo was taken exactly seven years ago at my wedding.  Because it is our Anniversary I was looking through all our wedding pictures with my girls.  When I came across this photo I started to cry.  I just wanted to reach inside and love and squeeze him.  I wished I could go back and pay the camera man extra to follow him around a little bit more.  Time flies.  I feel the exact same way right now when I see pictures of my own kids from years back.  We all "lose" our babies.  No matter what, they grow.  It makes me really think about time.  Some days I wish every second of my day away...how guilty it makes me feel, when I realize how quickly time is gone, and how things can change.  

Right now I find myself being very selfish with my time.  I have a hard time committing to anything, besides being with my family.  Time is so precious.  I am trying to pay close attention to the happy things each day.  I am taking time to really see my kids.  I want to spend more time loving and  laughing with them.  Nothing makes me happier right now than being at Mandy's house with all of our kids playing and spending time together.  Dylan, however, does not appreciate me and Mandy together very often.  I'm pretty sure we are TOO much for him to handle :)  Every once in a while we'll get a laugh out of him. It's kind of  too bad though, because I love him.  WAY too much to stay away!!   I am so thankful that through this trial, I have been able to remind myself just how lucky I am....and we all are...for every single day!

 PS  maybe it was the pink that made him want to rip off the tie??  sorry Dyl...ha ha

“Time is too slow for those who wait, too swift for those who fear, too long for those who grieve, too short for those who rejoice, but for those who love, time is eternity.”

More Photos

Some Fun Photos the last few weeks

Holy Moly

Holy Moly is all I can come up with right now. I am exhausted! In good ways and in bad! This continues to be such a ride... I am hoping for some consistency with my emotions but am probably not going to get that any time soon.

We found out a few weeks ago that Dylan's Make a Wish trip has been granted! His wish grantors, Dana and Jon, went through a great deal to put on the cutest assembly ever at Dylan's school featuring lots of our cute friends and neighbors as pirates!!! At first he was a little concerned at the attention he was receiving but after some convincing by Daniel Coates (Denver Broncos player :) ) Dylan went up on the stage to officially become the newest pirate and receive the news about Disney World! We leave in 2 weeks from today and our whole family gets to go! All of the kids can't wait! It will definitely be a much needed change of scene for all of us. While I am so overly grateful to Make a Wish for providing our family with this amazing trip, it is hard to believe that we are a Make a Wish family... I have seen these families for as long as I can remember but now we are one of them. Everything is so different to me now. My perspective has completely changed. I am so grateful that there are organizations like this out there to provide our family with the opportunity to make these important memories that will last us for forever.

Dyl continues to improve, still tired and the steroids aren't super fun. But I am happy with his speech and walking abilities for now. He is one of my very favorite people to be around, I think my sarcasm has worn off on him! He continues to be my little parasite and can't stand it if I am not around. He has his Primary's appointment tomorrow so we'll see how his counts are and find out when his next MRI is. At this point I am just living day by day.

Maybe one day I'll get a nap or a full night's rest. I am sure that is pretty unrealistic to think it's even a possibility with our circumstances! Life continues to be crazy around the Shaw house and every body continues to fight for attention! We are trying our best to divvy it out evenly but some certainly demand more then others... I often find myself dreaming of our life before all of this and I want to go back. But then I don't. It's a constant battle within myself because I have learned so much through it all that I know I wouldn't have otherwise. I am so grateful for my family, friends and the gospel. They all continue to help me plug away. It frequently feels like Groundhog Day! I am ready for better weather and the outdoors! Bring on Summer! Hopefully we will be able to have some great times with good health!

I know this isn't the most amazing post, I am really tired but feel like I need to thank every one for the continued love and support. We even got letters from Jimmer Fredette's mother, Kay. She is one sweet woman! It is crazy to know how many people are concerned about our little family. Thank you so much for it all. We truly feel loved... :)

Fun Movie Day!

In June, Walker Cinemas is doing a fun kid Movie Date with Dylan.  Click on the flyer to see the details!  A great excuse to go to see Cars 2! :)  Although I know it is hard for Mandy,  Ryan, AND Dylan to accept people wanting to help, serve, and pull people together...I keep telling Mandy...if you don't allow people to serve you..you are actually taking blessings away from them.  It is just as important for us to accept service from those who want to do something, as it is for us to serve others.

  PLUS who doesn't need all the love and support in the world when they have a sick child?  

Thank you for continually reaching out to my sister and her family! 

Chelsea

When it rains it pours!

Usually that phrase is used when bad things pile up on you but in our case it is just the opposite. The last week has been so filled with love and support for our family that we feel overwhelmed by it all. The number of people that have donated their time and sacrificed on our behalf is growing beyond anything we could have imagined. From our dear friends who spear headed Dancing 4 Dylan (Michelle, Nikki, Chelsea) to those who put together the 5k on Saturday (Dakota, Kyle, Darcee, Shauna) and to countless others that donated their time at both events, all we can say is Thank You from the bottom of our hearts!! We know you all gave up many hours with your own families to help out ours and we will be forever grateful to you and will strive to pay it forward and in return when and if the occasion ever calls for it. The shear number of people that came out to support us last week was amazing, from friends, family, co-workers, past bosses and tons of people we didn't even know personally, it was truly a sight to see that many people rallied around us.

Dylan is doing ok, last week we were very worried the doctors would order a shunt be put in his head to drain the fluid in his ventricles but luckily they were swollen but not enough to merit the shunt. He struggles to walk and his speech was getting slurred so they put him back on a higher dose of steroids to counter act the swelling. They did a CAT scan on Wednesday and found the tumor had actually shrunk a little but the swelling around the area and in his brain is still pushing on the nerves in his brain stem and that's why the symptoms aren't diminishing like we would hope. The doctors said it can take up to 4 weeks post radiation to have the swelling completely subside and the tumor to shrink the most it will so we're still hoping and praying that it will happen and he'll be able to have a fun summer! On Thursday he also got to meet his favorite basketball player, Jimmer Fredette on the studio 5 morning show. A big thank you to Brooke Walker for making that happen for him. Jimmer was awesome with him and signed a few items and talked to him for a couple minutes and Dylan was so nervous to meet him he barely talked but went on and on afterwards about it. While I can't believe my 9 year old has a 'bucket' list, he has been able to do some pretty amazing things and meet some incredible people and his influence is being felt by so many people. I can't tell you how many people last week came up to me and thanked ME for allowing THEM to be there and donate or participate. I've never been very good and accepting help, I'm a man and I don't ask for directions let alone ask someone to help me with something I am fully capable of doing myself. And while it is difficult for me to accept the help, I realize that the people giving it gain just as much or more than I do from receiving it. I feel the same when I donate my time to others and so we must allow others those same blessings of service towards us. We can never say it enough or show all of you how thankful we are and there have been so many help out that we can't keep track and personally visit each of you so I apologize it has to be in mass form but to all of you who have helped or donated to us; THANK YOU AGAIN AND AGAIN!!! The only way we can really show our appreciation is to pay it forward when it's our turn to help out and trust us, we will. We will continue to fight for a voice for the some 200 kids a year who are diagnosed with DIPG and we will make a difference in the fight against cancer in Dylan's honor so know that all your help is going towards this worthy cause.

We have a bunch of pictures from last week that we'll post soon to chronicle this crazy journey we're on. We love you all and hope and pray for nothing short of miracles in your lives for creating miracles in ours.

Ryan-the dad

The 5K Race was wonderful!!!

Thanks so much to all of you that came and supported Dylan in the 5K race yesterday - it was amazing!!! You will all be blessed for all of your love and support!!!

There were several things left over - 2 children's t-shirts and a 3 children's jackets and a small garbage can with a lid. We left them at our son Jeff's home in Pleasant View. If you have lost anything please contact jeffshaunashaw@msn.com.

Warrior Run, a great success!

Another heartwarming event was held for Dylan. What a wonderful feeling to participate in such a great race. So many wonderful people helped, ran, walked, and supported our special Shaw family. I continue to be amazed at the goodness of people, and still have a hard time putting into words how grateful I am for all of you.

~Grammy Mitzi

THANK YOU!!!!!

I am so apprehensive to even post anything right now because I am SO overwhelmed with emotion. To all of you who donated, danced, helped or just came to support us at "Dancing 4 Dylan"... THANK YOU. THANK YOU. THANK YOU. What an amazing event. It was unlike anything I have ever experienced before. I am staring blankly at my screen because I don't even know how to begin to thank everyone. I (meaning my entire family, I just happen to be typing! :)) will be eternally grateful to everyone. I mean everyone. The turnout was 100 times what I expected and I am so completely overwhelmed. That is literally the only word I can come up with!!! This night will be burned into my brain forever! It was my 8th favorite event of my life! (Obviously my children and my marriage coming in as the top 7!) If there is anything to be learned from this experience it is, no matter how dark a situation may seem, there is always a light to be found. I don't know if this makes any sense because I am pretty sure I just made that up... But I am thankful for this trial. Not thankful for the fact that my child has to suffer and has to go through this because I wouldn't wish it on a soul- But it is SO amazing to see the goodness that is out there! I (once again, meaning WE) have never, in all of our lives combined, felt such an outpouring of love. Thank you for sharing this journey with us. We know how hard it is to make yourself vulnerable when you get close to our situation because there is much sadness involved. But there is SO much goodness and love too! Thank you again to all of you who have chosen to be a part of this experience with us. We are all eternally connected. I hope that someday soon we will be able to pay forward the love, kindness and support that has been shown to us. :)

DANCING 4 DYLAN!!!

TODAY IS THE DAY!!!!

   We have been hard at work for weeks getting this thing ready to go.  It will surely be an unforgettable night.  Please come!!  We are so excited!!!  Thank you to EVERYONE who has made this night possible and contributed in any way.  The list is FAR too long to even attempt to write everyone.  WE LOVE YOU.

Here are just a few big ticket silent auction items......

  Treadmill. Home Theater System. 4 night stay in St. George. Guitar. JIMMER signed Jersey....

and SOOOO many more!!  

*****SO even if you aren't a lover of dancing....it will be worth coming!  :)  *****

Doin' it!

It has been SO fun receiving pictures of many of you!  I will be posting a few at a time so you can see.  I sometimes imagine what it would be like if ALL of us could gather in one place wearing these shirts.  I  am sure it would be powerful and emotional.  This is a way we can almost accomplish that... I am making a book for Dylan with ALL the photos of you guys wearing his shirt.  KEEP SENDING ME PICTURES :)  send them to dylandshaw@gmail.com.  THANK YOU!!!  

"Me & baby Graham are DOIN' IT 4 Dylan!! We love you!!"

Dylan's aunt McKell!  Baby Graham will be born TOMORROW! We can't wait to meet him!  

and of course..we will get him a shirt of his own.  :)

"We are FIGHTING with you and your family every step of the way!!!

xoxo Meghan & Brandon Andersen

"Mountain Crest Drill Team is Doin It For YOU Dylan!!!  You are in all of our prayers!!!!"

MC Caprielles

  I can't wait to show you more, and to see more of you who haven't sent pictures.  We will never forget all of you who have joined our ARMY.  It is a powerful one.  Full of hope, peace, tears, & LOVE!  We love each of you.  THANK YOU from the bottom of our hearts.

Chelsea

*******PS  DANCING 4 DYLAN!!  MONDAY!!! 5:00PM DOORS OPEN! NORTHRIDGE HIGH SCHOOL(Layton)  You will be SHOCKED to see the AMAZING donations we have for the silent auction, and the performers are the most talented around! This will be one of the most amazing evenings of our lives.  We hope you are there to experience it with us!******

BITTERSWEET

Today was Dylan's last day of his radiation treatment! It is definitely bittersweet. This is the last conventional treatment option they offer him. They want him to come back in a month for an MRI to see what the treatment has done to the tumor. In addition to his radiation he has to go to Primary Children's once a week for blood work and vitals. So far all of his counts have been great! Last week the person that went to draw his blood reached for a needle and went to put a line in his arm and Ryan asked what he was doing and he told them he would probably need it for a blood transfusion. Apparently that is very common at this point. However, they pricked his finger and everything looked great! I am impressed with how well his little body has tolerated his treatments. He continues to be extremely tired at times and gets massive heartburn but other then that and losing parts of his hair, he has done well! I am a little concerned with his balance and speech the last few days though. He seems to have gone a backwards in that department. We were told it is normal to have good days and bad days but I am not going to lie, it isn't very encouraging when you don't see things continually progressing as you would like them to. BLAH. I really hate this.

We are continuing to treat him with homeopathic supplements and have consulted with a variety of doctors. We have him on some alternative treatments as well. I like to think that part of the reason his labs have come back good are because of what we are doing outside of protocol. We are still considering a few alternative clinics and trials although DIPG's don't hold much promise. I can't even explain the frustration I feel towards the lack of research and options that are provided with this disease. It is frustrating to realize that I didn't even know that a gold ribbon represents pediatric cancer awareness. Did you know that? We all know what the pink ribbon stands for. Unfortunately every day many children are newly diagnosed with cancer. Ours unfortunately having a terrible prognosis. It makes me sick to read about others who have done this before Dylan and recently I have been having a really hard time processing it. Maybe it's this crappy weather! It doesn't do much for the spirit. I hard a hard time on Easter. Maybe it will be the holidays. Maybe it's postpartum! I don't know. It all stinks. I feel like I have done pretty good job staying optimistic and positive but today I feel like pouting a little! And I'm not even the one who is sick! Hopefully this is just a small wave that will soon pass and I can get back to looking at things from my usual positive perspective.

On a lighter note, we got the cutest visit last week from sweet Dakota Friedli. He and his family stopped by on the way home from the hospital. He is the cutest 3 year old you will ever meet. Last November he was in a freak accident where he was trapped under a fence for somewhere around 26 minutes without oxygen. This has left him unable to do almost anything. Except look at you with his beautiful blue eyes and occasionally smile the cutest smile you have ever seen. You can feel his little spirit radiating inside his precious little body and we have all fallen completely in love with him. It is interesting to think that while both of our situations are totally different, both of our families lives were changed in an instant forever. Anyway, he and his most amazing mom and dad brought Dylan an autographed football from the Denver Broncos. It had everyone's signatures on it! That meant the world to Dylan! I continue to be overwhelmed by the kindness and compassion that is shown to Dylan and our family. Speaking of kindness and compassion, we again need to thank everyone that organized the Todd Morrison Alumni Tournament and everyone that supported it! We were shocked at the amount that was raised for both us and the Friedli family. We come from such an amazing community.

We will continue to strive to take things one day at a time. Often it feels like a day lasts forever and time slows down. A friend of mine pointed that out to me and believes that it is a gift from our Heavenly Father. I agree. I cherish every day I am able to spend with my family. Even those days I feel like locking myself in the closet and screaming at the top of my lungs! I still believe I signed up for this. I don't think at the time I understood how hard it would be. But whatever it takes for us to be an eternal family is something I will agree to endure to attain that. Thank you again for the love and prayers that are abundant. They continue to keep us afloat during the most trying time of our life.

Dylan Shaw Warrior Run 5K & Kids K

I just wanted to let everyone know about the 5K & Kids K for Dylan. This will be a great chance to get some exercise with your friends and family while showing support for Dylan. We need help getting the word out, so pass the info onto your friends/family. You can preregister at https://dylanshawwarriorrun.webconnex.com/reg2011 It is on Saturday, May 7th. The 5K starts at 9am and the Kids K starts at 10am. It starts at Barker Park: 520 W. Elberta Drive

Pleasant View, UT.

There are t-shirt for the 5K and the first 100 Kids K runners. After that, the Kids will get a "Doin it for Dylan" wristband. If you know anyone/business that would like to donate to help cover the expenses of the race, let me know (darcee.felt@gmail.com)

So many of us want to help, but aren't sure what to do. Coming and running with Dylan is one small thing you can do that will have a big impact on you and him. I love the experience of running races, but especially for such a great cause and a great kid! I think it would be awesome to have a ton of kids there to run the Kids K alongside Dylan and his family. It's an experience that you, your kids, and Dylan won't forget.

Friday night

  Hello everyone!  Unfortunately we are NOT the only ones in a horrible situation right now, fighting for a life.  I am writing to tell you about Bob Eggett.   In 2004 he was diagnosed with a Brain Tumor. After an extensive surgery, and radiation he was miraculously cancer free!  Unfortunately, this last September he was informed the tumor had returned and just last week the doctors gave him only 6 months to live.  He is a father of SIX young children.
  You may have heard of this wonderful "Anything for a friend" website.  There was a story done about Becky Anderson, the founder, on KSL.  It is an amazing organization, and this Friday the 29th they are doing a dinner benefit for Bob, his wife, & children.  Bring your whole family :)  Here are all the details..

Event Date: April 29th, 2011

Event Time: 5-9pm

Location: Weber State University

                  Shepherd Union, Ballroom

                   Ogden, UT, 84408

Activities:

• Dinner $5 per plate--With Texas Roadhouse
• Silent Auction
• Live Auction
• Photos with a Pro-- 'Shear Luck Enterprises'
• Kid's Corner
• Entertainment--Vocalocity--'Acappella That Rocks'

  These events are not just for his family and friends, but all of us who are wanting to help.  Every little bit will help this sweet family.  Hopefull we will see many of you there!!! THANK YOU!!!  

  

Driving with Dylan

Have to tell you about Tom (Grandpa Shaw) driving Dylan to radiation the other day.
As they were driving down the freeway there were several signs saying, "Jim Bridger discovered the Great Salt Lake". After seeing several of the signs, Dylan said to Grandpa, "How hard would it be to discover the Great Salt Lake? It is kinda big, not too hard to discover!"

Grandpa said he had to laugh a bit and tried to tell Dylan that back in those days, there were no roads, or people here like there is now, and it wasn't as easy to find.

What a mind Dylan has!!! Always thinking!!! Always keeping us all on our toes! He is always reminding us to do things that maybe we have forgotten. LOVE THAT KID!!!!!

Grandma Shaw

Ready for Summer!

Today Dylan came and hung out with me for just a little bit.  I love every minute I get to spend with him!  It was just the two of us and our conversation was wonderful.  We spent lots of time talking about what we were excited for, and we both agreed that Bear Lake was on the top of the list.  He told me they are planning on basically living there for the summer...sounds good to me!  This is something that has been a part of our family's lives forever.  We spend many of the summer weeks at the lake.  Life there is simple.  We eat, play, laugh, swim, Mandy pays me to do back handsprings on the beach,  watch movies, sometimes go for beautiful runs, and always Grandma Janace brings crafts for the kids.  We have SO many happy memories there, and I love that our kids are growing up there too.  Making "Bear Lake" memories is what matters.  Spending time with family & friends.  I can't even put into words how grateful I am for all of ours...and for now...we are looking forward to making many more this summer!

   

can you even take how cute he is in this picture?!!!