Sunday, April 17, 2011

GRATITUDE...

As soon as I turned on my computer to update the blog, the first thing that came to mind was the word "gratitude". That continues to be an every day emotion. Of course along with many others but this one certainly stands superior. I am so grateful for every second of every day I get to spend with my family- I am grateful for my amazingly amazing husband who loves me even when I don't get ready for 5 days in a row! I am so grateful for my 5 and 3 year old princesses that color me 1,000 pictures a day even though when we go to print something we are out of paper! I am so grateful for my angel baby that found me even though I originally cried for days when I found out I was pregnant! I am so grateful for my full of it 2 year old who fills our home with insane energy even though at times I feel like I will never be able to keep up with him! I am so grateful for my studly 11 year old that continues to be my assistant around the house even though he would rather eat rocks. I am so grateful for Dylan's sense of humor and his ability to make me laugh with all of his hilarious comments even though he is fighting for his life. And I am so grateful to have such a WONDERFUL support system. It continues to blow my mind! Every time I feel the sadness creeping in, there is always someone or something that buoys me up... Whether it's a text from a friend, a visit from a neighbor, my mother in law showing up for back up, or one of my sisters calling to tell me how one of their friends gave them something to give to us. No matter the magnitude of the thought, it just continues to overwhelm me. I know I probably sound like a broken record but I just feel like I will never be able to thank everyone enough. I often feel guilty! I feel like there are probably a lot more people that need it more then we do. We really do appreciate every thing that has been done to support us in every way.

I don't feel right talking about gratitude without mentioning all of the support I continue to receive from my Heavenly Father. My eyes are filling up with tears as I think of all of the support I know I have and continue to get from him. I can't explain the battle that I have within myself as we go through this trying period. Just when I think I am coping well and am use to this situation, something sneaks up on me and I have a meltdown! They don't last long but when they strike, they strike HARD! I try to keep them to the times when I am by myself. I know that my Savior knows just how I feel and then I don't feel alone. I know that HE understands how I feel. When I choose to listen to that still small voice, I know that everything will be okay. I know that it will be hard. I know that. It already is! But I know that I have been blessed with the strength to do this. I know my husband has too. I know that we will be blessed because of our faith. I know that what we want may not be what we get. But I know that we are and will continue to do all we can to get what we want. I feel such a strength in me that I never knew I had. It's crazy to me that in addition to that strength, I also feel so weak. Weak because I know that I still have a long way to go!


I have so many thoughts circling my mind constantly that I am sure makes my posts seem all over the place! And now I am jumping to Dylan and what this week has been like... I am so happy to see him have more energy! He has continued to want to see his friends and get outside a bit! His balance seems to be improving. His right side of his face is still paralyzed and he has lost all of his hearing in that ear but I would take that over the ringing and sounds he was having in the beginning! He still has double vision in his right eye and that is why he wears his patch. The doctor thinks his speech is improving but it didn't seem to really be that affected to me originally. They told us before we began radiation that by about week 5 the improvement with the symptoms will be about as good as it will get. For the sake of his self-esteem I wish he could get his normal smile back. I just have to keep reminding him that at least he has a mouth he can eat with! :)

My friend went to school the other day to eat lunch with her daughter and said the cafeteria was FULL of students wearing "Doin' it 4 Dylan" shirts. He couldn't believe it and was thrilled that so many people are thinking about him. She told Dylan how lots of the girls came up to her and showed her how they had "bedazzled" their shirts! He was so impressed by that! I went to one of our dance competitions this weekend (just on Friday) and saw people wearing them there. The Director of the competition also asked us to bring shirts and bracelets there to sale and I can't believe the support we received there too! The dance community is amazing! We can't wait to see everyone at "Dancing 4 Dylan".

Again, I can't thank everyone for all the support we continue to receive. When everything hit we were flooded with support. I figured that's how it always is in the beginning and that it usually fades after the initial shock. But is hasn't. We will be eternally grateful to every single individual who has shown love to us through prayer, thought and acts of kindness. We love all of you more than you will ever know.

11 comments:

  1. I love reading your posts. You are so amazing to me :) I look forward to updates on the blog, thank you for sharing your most intimate thoughts with us strangers. You really will never know how much it helps me on 'those days' I hope to see you soon at the race or dance night. Good job, you are awesome!!
    Mindi

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  2. love this post, and LOVE you!!!

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  3. Mand-
    You and your family are so inspirational. I love your posts and your testimony. It really is a testimony builder for me as well. Don't ever forget that this is all a part of our Heavenly Father's plan. I have been blessed and privileged to know you and your family and there isn't a day that goes by that I don't think of you guys. Love you all. I too am "Doin it 4 Dylan" :)
    Natalie Porter

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  4. I cannot tell you how excited I was to see the shirts and bracelets at the competition on saturday! I was overly excited to buy them! hahaha My daughter will not take off her bracelet...she says that it has more than one color so she can wear it with everything! haha I love you Mand and you are so inspired. I love reading your posts and feeling the spirit as I do! Hope to see you soon!
    Angie

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  5. i heard about your sweet dylan by mutual friends. i think about him everyday and i have never met him! rest assured he is getting plenty of positive thoughts and prayers from the east coast! i am trying to keep his name on the prayer roll at the Washington DC temple. :)

    continued blessings to your family,

    deb wells

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  6. Mandy I have your family in my prayers. You are doing a great job of being a example of the pure love of Christ with your words of gratitude and love.
    Love ya tons
    Aunt Connie

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  7. I just wanted to tell you that your family is in my thoughts and prayers. Jeff Shaw told me about Dylan and the website and I am so grateful to have "found you". I know the Lord has many blessings still in store for all of you. May you have faith and hope on this difficult journey.

    Regards, Jodi Brown
    http://www.lifeconstructionzone.com/p/about-my-brain-tumor.html

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  8. Mandi,

    I ran into Kassie and Robin at UDF. It was great to see them, sorry I missed you though. They filled me in on Dylon, so sorry to hear, but wow am so amazed by your inspirational faith! We will be at Dancing for Dylan for sure and I want you to know you will all be in my prayers! Love ya girl!

    Rachel Morreale

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  9. Mandy I just found out about Dylan and found this blog! I just want you to know you are amazing to me and I am so proud of you and your courage and testimony! Know I will be thinking of you and your family! You are such a great example!

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  10. Hugs to you and your family.
    Prayers keep pouring out.

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  11. Hey Mandy! I found this blog through http://www.toeternityandbeyond.com/, and was shocked to realize that I knew you from Lakeridge in Orem. What are the chances of knowing two people with children with DIPG? Very slim, I hope. Know that I will pray for you and your family and will keep track of you through your blog.

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