Sunday, April 3, 2011

Life...

Today I find myself frequently fighting back tears. It probably has a lot to do with lack of sleep and just being a female with a newborn too! I am sitting in the same chair looking out the same window I was when Ryan and Dylan walked through the doors crying hysterically about his diagnosis. I find myself reliving that moment a lot today. It seems like we have known forever. Yet it has only been 3 1/2 weeks. So much has happened in that short amount of time and I have changed so much too. I think we all have. I can't describe all that has happened. I can't describe the feeling of peace and love that dwells in our home. Of course we still have bickering children and Ryan and I occasionally lose our cool but it's different. I love to be home. I always have but now I relish it! Even though the constant pressure to keep up with the laundry, feed the hungry mouths and chase after all the crazy little ones often overwhelms me, there is still no other place I would rather be. This experience has already taught me so much. I have realized that I have so much more to learn and to be. I never did feel like I was anywhere near the kind of person I should be but this has put it all into perspective. I need to be a more nurturing mother. I need to do more for others. Especially for strangers or people I hardly know. I can't tell you how many people have reached out to us that hardly know us or don't at all! It touches me deeply and I often find my self wondering "would I have done the same for them"? We have had so many friends and family rally around us and I can't imagine going through this without their support. I know that there are so many others out there that are in worse situations than us and that they have no one. I don't know what we have done to deserve such an outpouring of love. I do know that I am extremely grateful for it. Just as I am for the gospel in our lives. People often ask how we are getting through this. I know it isn't just with our positive attitudes, I know that we are truly being carried... I know that our home is full of angels and I feel them every day. At times I find myself thinking and worrying about the future. But I know that's natural, I just have to keep reminding myself and others not to waste today worrying about tomorrow! :) We are so lucky to be blessed with each and every day. You never know what tomorrow is going to bring. That has never been more evident in my life. The other day Dylan asked me why he had a brain tumor and I explained the reason for trials. He seemed to grasp the concept some what. And then he asked me, "was your biggest trial when you were 8 and had to get your appendix out?" And I said, "no, my biggest trial has been watching you go through this." Our trials aren't necessarily something that happen directly to us but sometimes happen to people we love. How I wish it could be me. Then I think about what would happen to my other children if it were me. But then I know that too has happened to others- So then I have to remind myself that no matter how bad you think you have it, someone else has it worse. I am so blessed to have all I have been given! I almost feel spoiled in a way. I feel so honored to think that Dylan was such a valiant spirit in heaven and that Heavenly Father felt I was worthy enough to be his mother.

It's pretty challenging having 5 kids at home! Especially when they are all pretty needy- We have Dylan, then Avery who is 5, Livi-3, Dax-almost 2 and Drew who is just a month old. I am doing my best to try to give them all the individual love and attention they all deserve. Thank goodness for my and Ryan's family and friends who have continued to help us out. I can't ever begin to thank them enough and feel like I will eternally owe them!

Our cute, sweet Dawson turned 11 on Thursday. I can't believe he is that old! It freaks me out! Where did the time go? We decided to let him and Dylan invite a few friends to a birthday party celebrating Dawson's birthday and a half-birthday for Dylan since his is in October and I am unsure how he will feel then. I realized he hadn't had a legitimate birthday party since he was 5. Yes, it is under these circumstances that you quickly realize how much more you could and should have done for your kids! It ended up being a lot of fun and it was a good day. :)

Dylan continues to worry what other kids including his friends think of him and that is very sad for me to see. I can't imagine going from completely normal one day to struggling so much the next! He doesn't want to be treated differently. I think the more normalcy we maintain, the more normal he feels. So I still have to get after him when he occasionally throws his fits. And lucky for me, the girls continue to annoy him so they continue to fight which is definitely normal to him! Dax continues to be the lovable Tazmanian Devil while Drew continues to be the little angel baby! We have found an at home tutor that will be coming over twice weekly to help Dylan with his work and keep him a little busy. A little structure never hurt anyone! We also talked about having him go to school for an hour a few times a week. He is still nervous about that because of his vision and hearing problems. I would like to see him do this. I know his friends miss him him so much!

We are still exploring alternative treatment options for Dylan and considering a small variety of options. We are doing our best to provide every single opportunity to him to fight as hard as he can! We have to know that we have done all we could. That is our job as his parents. You always hear that you are your child's only advocate and that has never been more real to me then now. Unfortunately they have been treating Dylan's condition the same way for 30 years and it is up to us to find other alternatives. We continue to pray for the guidance to help us find something that can help him. We have had many suggestions from others and a few have given us some hope! In order for a miracle to happen, you have to believe and have faith that it can. I pray every day for that faith.

It seems like this session of conference has been directed at us. I am so grateful for the inspiration our Prophet and Apostles receive. I am also grateful for the peace and serenity I continue to receive. I am grateful to know with all of my heart, that no matter the outcome of our situation, I will have my family forever... and THAT is how I get through my days. :)

"God didn't promise days without pain, laughter without sorrow, nor sun without rain, But he did promise strength for the day, comfort for the tears and light for the way."

13 comments:

  1. You are so amazing and inspring. I can totally realte with every feeling that you have. I too find myself worry about the future, crying uncontrollably and then the next second realizing that there are so many others who have been given even more to handle. It doesn't take the pain away thinking about that but it makes you realize how blessed we are. I love your family motto and am trying to make it my daily motto...I find it a lot easier to say then to actually do...but I am trying. :) THank you so much for Dakota's sweet basket. You should have seen how much he just loved the balloon on it. WHat an example you are to me to think of Dakota when your plate is so full. We just LOVE your family so much and think of you daily!!! We still believe in miracles and are praying that God will send them your way!! If you ever need to talk please know I am here!
    tessie11@msn.com

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  2. P.s. we are here at Primary CHildrens with Dakota...he has a respitory virus. Not sure if you will be here tomorrow for radiation but we would love to come say hi if you are. Shoot me an email if you are and are up to it!

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  3. I am so grateful for you. You are so good at everything you do, and have done it all with a smile on your face. I love you so much, and love every minute I get to spend at your home...feeling the peace and angels. I know they are there too. :)

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  4. Wow Mandy. I can't even imagine what your sweet family is going through. Even though I haven't seen you in years, I think of you often and pray for your family. Thanks for sharing your beautiful perspective of this trial in your life. It strengthens my faith.

    -Chelsee (Van Dusen) Rowberry

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  5. I read this blog religiously. It is part of my daily routine. Without fail I cry EVERYTIME! I am in awe at the strength of your whole entire family. I look at my son as I rock him to sleep at night, I look in his little eyes and I know that I would do ANYTHING to keep him safe and healthy. Yet I don't know that I could press forward with the strength that you all have. I admire you all but mostly I admire you Mandy and your husband. As a little girl in your dance class I wanted to be just like you Mandy, I needed to be as cool as you ;). To this day I still feel that way. I could only hope that if I were ever in this situation I would have "Mandy Strength". God Bless every single one of you. You are all in my prayers. Miracles happen, they really do. Your miracle will happen. Dylan, keep your chin up little man. What an amazing person you are. I am so way "Team Dylan". Who needs Edward when you have Dylan Shaw!
    With much love, Jandi Sorenson

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  6. Love you Mandy - isn't it amazing how much strength and serenity you are given even in the midst of a storm? Heavenly Father is so mindful of these special kiddos and has a plan for them - of that I am sure even though sometimes it's hard to imagine that His plan involves pain and having to watch our babies suffer. Hang in there, we are praying for you! Love, Carol

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  7. You are awesome! Love your face :-) Turn slowly...he he he!

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  8. love you Miss Mand and your beautiful family!!

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  9. Mandy you are amazing! I love reading your blog! You really are an inspiration to me! Hang in there Dylan!! He is so lucky to have you as his mom!!

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  10. Oh man I can't read this blog ever without tears streaming down my face.....Mandi I think you are truly amazing, you inspire me to be a better person! I continue to pray for you and your cute family!! He is one lucky little boy to have such a loving family!!!

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  11. you are so strong! i love reading your blog, it gives us all a better perspective on life and strength to go on. thank you :)
    mindi dixon

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  12. Mandy there truly aren't words, as I know that you are aware. I just want you to know to you are constantly in my prayers and thoughts and I am thinking of you and your family always!!! There isn't much that I do without you coming to mind.
    I really am proud of you...you are so strong! I see a ton your inner strength shinning through your words and pictures. Keep shining your wonderful energy. We love you all!!!!!!!

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  13. Mandy, in the recent change in our ward boundaries I have been moved out of your ward. That has made me so sad. When I found out they were going to make a change to the boundaries, I just keep thinking to myself, "I don't want to move out of the Shaw's ward." I think that is because I seen such a change in everyone at church. It seemed to change overnight, it was an amazing feeling and I wanted to be able to still be a part of it. Dylan has touched so many lives, what a great gift he has given to us all. We continue to pray for Dylan and your family. Kristy Colvin

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