Sunday, May 29, 2011
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
Sunday, May 22, 2011
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
Wednesday, May 18, 2011
Tuesday, May 17, 2011
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... :)
Sunday, May 15, 2011
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!
Monday, May 9, 2011
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.
Sunday, May 8, 2011
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 firstname.lastname@example.org.
Saturday, May 7, 2011
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.
Monday, May 2, 2011
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. :)
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! :) *****