Thursday, June 9, 2011

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...

5 comments:

  1. I love you. You are simply amazing.

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  2. I am amazed at the strength you have during this time... I love you all so much!

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  3. So happy to hear the trip went well!... Give kids the world is sure a little piece of heaven on earth. Always in our prayers!

    The Huish family
    Www.teamsadie.com

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  4. You are an amazingly strong person Mandy... I admire you so much...I love hearing about all the amazing things people do for dylan and your family.. its so nice to know that there is still so many good people in this world... everytime I read this blog and see how strong you are it makes me wanna be a better person!!!! i pray for your family daily and i KNOW miracles DO happen!!!

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  5. I wish you didn't have to go through this, but it's exactly as you said. The Lord allowed this trial to happen to a family that could handle it. You're amazing. You're inspiring. I continue to pray for strength and comfort to come to your family.

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