Sunday, March 13, 2011

The Last Few Days

Well the last few days have been very eventful. Friday was my birthday... It ended up being the most memorable birthday of my life. My wonderful sister and friends took charge and granted my wish of wanting a fun party for kids. We had Rainbow the clown making balloons for the kids, pinatas, cake, prizes and the whole shabang! Nothing brought me more joy than seeing smiles on my children's faces. Dylan had a blast roaming from room to room entertaining everyone with his favorite songs. He sat on my lap and sang me "Happy Birthday" in his opera voice, it was hilarious. I will never forget that night. Thank you so much to all of you unexpected friends and family who showed up to spend that special time with us.

I can't believe how quickly his symptoms have progressed. To think that one week ago we had no idea what was going on just blows my mind. He continues struggling with headaches, double vision and balance. Yesterday he started experiencing ringing of the ears. Sometimes so intense he will cry for an hour. It is a terrible feeling to feel so helpless. I wish I could take it all for him. Yesterday morning he was feeling very down. I'm sure the steroids make your body feel out of control. As I laid down next to him cuddling and consoling him, his head was so close to mine and I wanted so badly to reach inside of his head and rip the tumor right out of it! It is indescribable watching your baby have to go through all of this agony. But overall he stays strong. I don't think I could handle it as well as him. He is certainly an amazing little boy.

Friday morning Ryan took him to school for a few hours. He was so excited to see his friends and they were all so kind to them. I think he is a little apprehensive about school at this point because he too doesn't quite understand exactly what is going on and is worried about kids asking questions. The doctors said to let him go when he wants to and don't make him if he doesn't. But he did make his AR goal for the quarter and was bummed that he would be in radiation at the time of the reward which was going to a movie. So yesterday we and some friends went to see "Mars Needs Moms". Don't go if you are feeling emotional... :) He really enjoyed it and was happy to get out. Last night we had the amazing opportunity to attend ward temple night. They had arranged for it to be in behalf of Dylan. We met in the Preisthood room and had the most beautiful prayer to begin a fasting session for him. The amount of support there was unreal. I have never in my entire life had such a spiritual experience. The temple has such of way of helping your heart and spirit when you need it the most. I am so grateful to everyone who participated in this. I have definitely been impacted immensely from it. I ended up with the most peaceful feeling that everything will be okay. Not necessarily that Dylan will be completely better but that we will survive this journey.

My perspective on life has done a complete 180. Friends and family who have gone through similar experiences have told us to look for the little miracles and blessings along the way... There have already been so many! One of those miracles is that for the first time in my life I walked through Target and wanted nothing. For those of you who know me, that is major! The only thing in this world that I desire is to have my family forever. Take all the floof and fluff away, it doesn't matter. I am more determined then ever to make myself into the person I was meant to be. I am more determined to help my husband and children become who they are supposed to be. I know that Heavenly Father is watching out over us. Sending us angels in the form of friends and family who are carrying us through this. Thank you again to everyone who has and continued to help push us along. You will never know how much it means to us.

19 comments:

  1. This comment has been removed by the author.

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  2. Mandy, your faith and courage strengthens me and my family. Thank you for sharing this sacred time in your lives with us on this blog. The Colvin Family is sending many thought and prayers your way.

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  3. Mand- I think everyone there will remember the experience forever. Today in Sacrament I couldn't even sing the songs because all of the words felt like they applied to our situation perfectly. I am guessing that is how it is always, we just don't notice. I am so thankful for Dylan...for being willing to help teach us lessons we could only learn this way. What a gift he is actually giving us. love you so much!

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  4. Mandy - You are amazing! I can hear your voice as I read this and laughed through my tears at your target part!! Dylan is so blessed to have such a wonderful mom! There were quite a few families and some of my young women in our ward fasting for Dylan and your family today who just love you so much! Dylan really has touched a lot of peoples lives and he is not even aware of it. He is truly a special boy! Love ya!

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  5. We are praying for Dylan and know you will get through this. On the days where Dylan is bad, just know that he is wrapped in the arms of our Savior and will be carried through the hard stuff. We can just tell from Dylan's picture that he is a special little guy and we are lucky to get to know him through your blog.

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  6. He is so so special. And so are you. There is a special spirit in your home. I'm proud of you and hope that you continue to be sustained - but also that you can still let down when it's all too much. I love you all so much. You have always been a huge part of my life. Know that my thoughts are constantly with you.

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  7. Mandy your testimony is amazing. What a blessing you must be to your family in all of this. I hope that you continue to feel lifted up by all the prayers and thoughts sent your way. You are amazing.

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  8. HEY DYLAN,
    this is Libbi, Tasha's sister. hope you know who i am! I just wanted to let you know that we really DO LOVE YOU!!! GET WELL SOON! I love you Dylan! :) :) :)
    love,
    Libbi :)

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  9. Mandy u are such an amazing insipiration to us all. I admire u so much for your courage and strength! You truly are such a wonderful person. Reading your posts makes me want to be a better person you are such a great example to everyone around you and you have a way of always putting a smile on everyones face. I'm so sorry you and your darling family are having to go through this horrible situation. I'm so sad I'm out of town and was not there for the ward temple night and fast I heard it was an amazing experience! Love ya! Steph Barney and family

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  10. Mand...I can't ever stop thinking about you and your family! You are an inspiration to me as a mom. You have always been one of the very best people that I have ever had in my life and am so grateful for the times that I had with you and Dylan. I love you and am proud that you are such a strong person of both faith and love. If you ever need anything don't hesitate!

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  11. Mandy - Your strength and faith is so inspiring. You are such a strong, beautiful woman - I am so touched by your words and your courage to share this experience with all of us. We are keeping you close in our hearts and you continue to be in our constant prayers. Please let us know if there is anything we can do. I hope you continue to find the strength & comfort you need at this difficult time. We love you all so much!
    Jess & Greg

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  12. Wow, thank you for sharing your son with us! What a beautiful testimony you have! Though your determination and focus are greater at this time, you have definately developed your faith long before this point! What a blessing to have such faith to carry you through! Love, the Blanchards

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  13. Your story brings us tears. We are thinking of you all and praying for you and your son daily. Lots of love, Scott & Lindasue Monson

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  14. Mandy,
    You're words are meaningful and perfect!! I love the part about laying next to Dylan and feeling his head next to yours. It paints a picture of every mother's desire. My husband told me that the poem "Footprints in the Sand" really buoyed him up and he could recite it in his head. The Lord really is carrying you and your family when you can do no more. Prayers for your family!! We will do anything we can to help~whenever.

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  15. Shaw family,
    You are in the thoughts and prayers of many! Your story has touched many people.

    I've been thinking about this for several days, and at the risk of looking like a crazy person, I just wanted to share this information with you. I just wanted to give you a little hope and maybe an option for your son. I know that you don't know me, but I wanted to share this with you.

    There is a neurosurgeon at the Barrow Neurological Institute in Phoenix, Dr. Robert F. Spetzler, who is one of two specialists in the world who specializes in brain stem surgery and tumors and operates on otherwise unoperable tumors like the type that your son has. He takes patients from all over the world. Here is a link to his page and also a link to a blog of a family who worked with him.

    http://www.bnaneuro.net/Pages/Docs/DrSpetzler.html

    http://williamsfamilyworld.blogspot.com/2008/06/dr-spetzleryeah.html

    Wishing your family the best!

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  16. you are amazing mandy...please know that i am praying for you and that i too believe in miracles....and i am BEGGING for one. love you all...

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  17. Mandy -

    I have been so touched by your testimony and those of your family members. I have been feeling absolutely devastated by your news and walking around with a heavy heart. Interestingly enough the lesson I had to teach on Sunday was on the scripture "Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light. ---Matthew 11:28-30

    As i taught the lesson i couldn't help but think of you guys. I should be consoling YOU but I find my own strength renewed every time I read this blog. Your faith and testimonies strengthen ME!

    My thoughts and prayers are always with you.

    Jami (Smith) Hodges

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  18. Shaw family,
    I just wanted you to know that I am thinking of all of you and praying for Dylan. I was so saddened by the news of Dylan's ordeal. Dylan is such a beautiful person with an amazing personality. You will ALL be in my prayers. If I can do anything at all for Dylan or for your family, please, don't hesitate to call me. Love, Mrs. Burke (Angie)

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  19. Mandy,

    Your testimony is amazing! Thanks for sharing this experience with us! Please call me if you need anything!! Even if you need me to come watch your kids for anything! I would love to! I love you and your family!
    Love always

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