Every morning at about 5 they come in to draw labs (take blood to see what her counts are) usually Faye is asleep, and doesn't wake up when they do it. But the other morning they went to draw labs, and she sort of pulled her arm away saying "I don't want to be hooked up" not realizing they were just doing labs. When that was explained to her she fell back to sleep.
Every morning we are also given a printout that looks like this:
Nick explained to Faye the other day that the last highlighted number is her ANC (immune system). He explained to her that when that number starts getting bigger she gets to go home for a bit. So now everyday when the nurse brings us our printout Faye grabs it and scans the paper looking for her ANC.
When Faye gets cold her skin looks a little modeled (purply and veiny). When the doctors come in to check on her just like they do everyday they ask if she always looks a little modeled. Because thats something they also look for when she has a fever. Well today she was looking at her skin and asked me "Mom do I look a little Modeled?"
Today she got a visit from Ronald McDonald (Faye just like anyone else who visits would not say anything to him) But he gave her a Happy Meal toy and she thought that was pretty exciting, but other than that wanted nothing to do with him.
So yep we are doing good, everything is going good, and as long as we can keep Faye fever free we will hang out as long as her little body needs us to.
One of the readers of this blog posted on the previous posts comments this story. I was very touched by it, and wanted to post it for the rest of you to read. They said they saw it on another blog, and changed it a little to fit for Fayes situation.
Faye Meldrum "A Very Brave Soul"
Not too long ago in Heaven, there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day, however, the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen? Why is there suffering in the world?"
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see unlocks the love in people's hearts."
The little soul was confused. "What do you mean?" she asked.
God replied, "Have you noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this −it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer−to unlock this love−to create this miracle−for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain herself. With its wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"
God smiled and said, "You are a brave soul, I know, and thus I will grant your request. But even though you are very brave, you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however, they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. These people are your parents" God and the brave little soul shared a smile and then embraced.
In parting God said, "Do not forget, little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through her love and suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys−some regained lost faith−many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened and God was pleased.
The world has been forever changed because Faye is a part of it.
10 comments:
Well that makes me cry....a good cry though. Just aren't enough words to describe what a special little family you all are. Even sweet Mitchell, Jen keeps telling me how delightful he is and what a little angel he is. You have the most special kids Stace, and how could they not be, look at their parents.
Sweet Faye, thank-you for your gift to all of us, you have unlocked my heart for sure and the love for you all just pours out.
Once again, all my love and prayers...
Teri
Well now I am just going to go hold your baby and cry, and then laugh cause man that Mitchell is a funny kid.
I feel so honored to be here with you guys this week, you can feel the spirit that is carrying you all. It's amazing to be a part of even for one week......
I third that, I couldnt hold back the tears! Its so true, like my granfather told me one day "pain purifies the soul" and now I know why! Good to know she is in the right track and getting so much love from people! YOu are an amazing family! I always wish I could do more for you!
I am so glad to get an update on Faye! I think about you guys so much...you look forward to those lab results every morning and hope hope hope for some sign of an immune system. We used to celebrate so much when the bands would go up! I think it's amazing you've got Faye reading her own ANC.
Oh Yay!! So glad you liked it!! When I read it I thought of Faye and your family. It just really put things into perspective for me when I want to ask "why" would Heavenly father let this happen to a child.. It made me realize Faye has a far greater pupose than we can ever imagine!! She is one lucky kid!! Wish I knew ya'll!!!:)
I have a friend who has a daughter with a birth defect. She was born without half of her jaw, one ear, and her tongue was tied. She didn't even know she was different until she was four when someone pointed out she had only one ear. At this time her mom, my wonderful friend, explained that in heaven she was willing to accept this challenge and she chose her mom to help her. She told her how grateful she was to be her mom. Her daughter will be a freshman at BYU after completing many difficult surgeries to help extend her jaw with rib and hip bones. She is beautiful and one of the most amazing young women I know. While the story posted is just that, a story, I believe there is more truth to it than we will ever know. Thank you Faye for helping us feel more love in our lives. You are a beautiful sweet girl. And, you are kicking cancer's bum! Thank you for sharing Faye's love with all of us!
Good post, Stace! Love seeing Faye scanning her chart and hearing her ask you if she looks modeled. She's definitely becoming an expert! I read that story on your comments and it made me cry, just like everyone else. Whatever truth is contained in that story, it's absolutely true that Faye was/is one of the extra special children of God and he's giving her an extra special path in this life. I couldn't love her any more and I'm SO SO excited to see you guys in 2 1/2 days!!
What a beautiful story that fits such a beautiful little girl and her parents so well! You all are in my thoughts and prayers constantly! Thank you for your amazing example!
Katelyn
that's such a beautiful story. It was so good seeing Stacey the other day at church and at the salon. Nixon is just getting cuter everyday! Your family really does impress me with how strong and brave you are. We love you guys. If you need anything please let us know!
What a wonerful and beautiful story. I only know Miss Faye through this blog but I can tell she is one brave soul with a purpose in this world. I know your family and Faye have taught me some great life lessons and have really been a source of faith in a troubled time. I really believe that I can almost feel your daughters spirit and courage as I read her blog. What an amazing little girl to fight this fight here on Earth. I know our Heavenly Father is right there with your family and I am almost jealous that the veil and spirit are so strong for you all. I can imagine in my mind our Savior or Father in Heaven holding sweet Faye on nights when she is asleep or struggling with her sickness. What a blessing she is to all those she has touched that she does not even know.
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