First...let me start with this picture. It seriously makes me tear up every time I see it! If you look closely, each of them are missing a hand. Stephen calls it his "lucky fin" (like in Finding Nemo!). He has a very special nurse there, who also has a lucky fin. He's right handed, she's left handed and they are a perfect pair. :)
I just read the most touching letter from Brent, Stephen's Dad. So many of you donated to the Hope for Stephen fund with the Nest Necklace fundraiser, and I thought you should read this. They truly are a remarkable family...I am so blessed to be a part of them.
Stephen has had quite a few scares while they've been up there at St. Jude's. He started having seizures and even had to be resuscitated. He's had another surgery to put a shunt in his head to drain his "brain juice" as he calls it. There was almost a severe infection from bacteria collecting in the lining of the shunt, but Brent was very prompted by God to know what to do in the situation, and because he followed God's guidance, a horrible catastrophe was avoided and Stephen's life was spared. We have witnessed MIRACLES in this journey and our testimonies of a loving Father in Heaven are continually strengthened. God is GOOD. :)
Anyhewww, here's Brent's entry. He is talking about some of YOU and your kindness. I hope you understand how touched and appreciative and humbled they are. :)
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Today Target hosted it's annual winter carnival out in a big tent for St. Jude patients. Stephen and I got done with his radiation treatment about mid-day and walked out to see what it was all about.
They had promised food, live entertainment, crafts and a toy gift to every patient and sibling that came. We ended up waiting in the wind for an hour just to get in because there was not enough room in the tent for everyone. I was glad that I had heated up a bean burrito in the hospital for Stephen.
Standing in line we saw all kinds of kids coming out with big boxes. There were Lego play sets, games, tricycles, and a variety of really nice expensive toys. By the time we finally got in, it had been an hour and we only had two minutes to find a toy and get to his next appointment. No time to do crafts or eat delicious treats. There were only a few "bottom of the barrel" toy choices left so they gave him a $10 gift card instead. We were thrilled and grateful. Truly touched.
When we were in line earlier I happened to see a mother and her son off in the distance. She was trying to push her son up a hill in a wheelchair while desperately trying to hold onto a large toy. She was really struggling. Instantly, a tall man in a hat came out of the crowd to her aid. He pushed the wheelchair up to the top of the hill.
I couldn't help myself. I just started crying. I'm sure someone took notice while I tried to hide my face. They probably thought I had just received some bad news that morning. I've seen more than one parent walking in tears down the busy hallways at St. Jude. The truth is, I was immensely touched. The helping man had reminded me of all the incredible experiences my family and I have had at the hands of others since Stephen was diagnosed.
Hardly a day goes by that Stephen does not receive a care package. Not a single day has passed without a few cards or letters. We are the recipients of mail coming from family, friends, friends of friends, and even people we don't know at all. There are posts with uplifting and caring words written on this website's guestbook every day. There have been families and individuals who have given us money, hotel stays, airline tickets, gift cards. St. Jude bills our insurance, but is not charging us a dime. They, their private donors and corporate partners provide housing and some money for groceries each week we're here. Stephen's elementary school put on a craft fair, bake sale and choir concert in his behalf. Other children have sent self made cards, books, videos and artwork. We've had people do shopping and run errands for us when we could not. They've brought dinners, performed MAJOR yard work, cleaned, transported our kids and cared for them in our absence. Countless prayers have gone up to God for us in multiple languages, in many countries across the world and through many different faiths and denominations. Our wonderful neighbors named the huge tree in their yard that is decorated with lights after Stephen. There are even families that have given up their entire Christmas budgets to us. One of those amazing families has never even met us before and had only heard about Stephen from a family member they work with. I imagine they will have the sweetest Christmas ever this year!
I want you to know that I could continue writing this list all night...
To be honest, I have struggled with all this giving on our behalf. Do we deserve it? I don't know. Do we deserve it more than others. Absolutely not. We have received so much and are more grateful to YOU than words can express. (Those pesky tears have come back again.)
What has this done? For one, it has opened my cynical eyes to a whole new world - a world I didn't believe existed to the extent it actually does. There are good, honest, caring people in the world. There really, really are. You all are a witness to that. I hope I can say that I'm one of them and that I'm teaching it to my children.
A care package we received yesterday had a bunch of candy canes in it (among other gifts). The family who sent it said we should give them to everyone helping Stephen at St. Jude. So that's exactly what we did today. Stephen carried that bag of candy canes with him everywhere he went. He offered it to every nurse and doctor he saw and told them "Merry Christmas." He was adored, praised, and admired for it. More importantly, he felt WONDERFUL.
This afternoon, the long awaited day for Christmas shopping finally came. Stephen bought very thoughtful gifts for his siblings, mother (and even me). They are wrapped and placed under our small apartment tree. As many of you know, we had "the BEST day ever" last Saturday. But as Stephen went to bed tonight he exclaimed to me that today had been "the GREATEST day ever." I don't know if he really understood the great wisdom and truth in the words he spoke, but they rang out to me very clearly.
I hope many of you have had "the GREATEST year ever" because of your loving service to our family. Each of you have been inspirational and even critical to our survival mentally, emotionally, physically, and spiritually.
Before I close this post there is one last feeling I need to express. I know some who read this blog are not "religious" and I fully respect those beliefs, but I would not be true to my own if I did not say how grateful I am to God.
In a very short time we have gone from roses to thorns. Life as we knew it has turned upside down and seemingly buried us alive. Strangely enough, I have never felt closer to my Savior in all my life. I know this is not a punishment. A blessing? In some very strange way, yes. Through all of the sleepless nights, the hours and days of worry, the unexpected ups and downs of Stephen's health, even his horrible pain - I have know that the Lord is near.
Just this week when all the doctors were thinking and planning for the worst, I only felt peace and knew exactly what to do as if it were the only option in front of me. It felt different, like knowledge that did not belong to me. It was not instinct that came from "within" me. I have indeed been "touched" by God Himself and I know it. It has happened time and time again through this whole ordeal. In that, each of your prayers are being answered, and I hope that you in turn can feel His touch because of it.
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I love you all and hope you are having a WONDERFUL Christmas Season!
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