Here’s our Christmas picture…
Although this has been the most difficult year of our lives, it has also been one of the best as we have learned so much about the character of God and the way He works through people to show love. We have been on the receiving end of that love more than we could have even imagined this year. Thank you, all who have prayed and continue to pray, and to those who continue to spread the word…it has humbled our hearts, and for that we are grateful. Countries around the globe keep popping up on Noah’s blog counter. We sat tonight as a family reading love letters and looking at pictures from the Seoul, Korea class that has been praying for Noah so faithfully. We were in tears because of the purity of heart expressed in their letters. Thank you, Ms. Kimie’s class, for the beautiful art and loving and encouraging words. That is just one glimpse of the outpouring of love you have all shown us. Thank you for being an integral part of our lives. And, although we know this is EXTREMELY emotional and often times draining, thank you ALL for choosing to walk this road with us. We know we are not alone…We know we are loved…we are humbled because of it and we pray that somehow, some day, we are able to repay and bless all of you for how you have supported us in countless ways on this daily journey.
Today we learned that from Noah’s allergy blood panel he is allergic to a plethora of things. I’ll be able to give specifics tomorrow as I don’t know them now, but the doc was quite surprised. Some she mentioned were egg, soy, peanut, but I’ll give more info when I learn them all. Imagine, they weren’t even going to do allergy testing because babies don’t develop them until they are a little older…
Anyway, Wednesday at 10:30am Noah will have a benign biopsy from his rectum to see what his nerves are doing down there since his bowels have slowed a bit and if it can shed light to the picture. They said they can do it bedside, so that is good. Yesterday in the meeting the neurologist was pushing the brain biopsy, saying he’d do it at this point for his child, but in the same breath said Noah was going to die anyway. I said, “You want the brain biopsy for curiosity sake because we don’t want an autopsy, so it’s as close as you’ll get to one…” The last I looked, only God numbers our days…one thing is for sure, if I were a doctor, I wouldn’t “give” people X number of days to live…it’s a bit out of the job qualifications. We are grateful for every day we have had with Noah and we look forward to every new day with him. When he dies, he dies, just like you and me. We aren’t in charge of it, therefore we have to live life to the full, for God’s glory, with His will in mind. If I get to the end of my life and look back and see I’ve lived it all for myself, I will have failed my mission, my purpose. Everything happens for a reason. Will I have been true?



13 Responses

  1. Merry Christmas…the prayers continue to be lifted. I am so thankful God chose you to walk down this road becuase I have and continue to learn so much from you. I pray that when I am called upon to walk down a difficult road I can remember you.
    Your friend in Ohio

  2. Your Faith is amazing. Your courage to walk and trust in the Lord is uplifting. I have been quietly checking in daily and praying for you all. Noah Steven has touched so many lives including my own.
    Merry Christmas from Rhode Island
    God Bless,

  3. You guys are truly blessed. You had faith before but now faced with the challenges you have, you seem to have even more. I am always surprised to hear how frank the Doctors are about Noah’s condition. I would have hoped by now that your compation and faith would have rubbed off on them. I have to believe that they are doing the best they can and that they aren’t giving up. I will pray for that!!

  4. Jason and Adrienne-
    I love the Christmas picture and how I wish things would turn around for all of you! I am still praying for a miracle and have not given up hope for you! I just want to wish you a Merry Christmas and I am sending my gifts to Emily and Noah with Kaija when she comes out again! Always thinking of you!

  5. Merry Christmas to you and your family. We are continuing to pray for little Noah. Like Gail, I pray that when I in the valley I can keep trusting in the Lord and have a faith like you. Thank you for sharing all the ups and downs. I know you are touching more people than you can imagine.

    Wendy in IA

  6. Shame on the doctor that is concentrating on the end of Noah’s life instead of all the life that Noah still has left to live. All of us will pass on eventually, of course. But must this doctor dwell on that fact?

    Let’s all pray that the faith of the Graves family will begin to open this doctor’s heart to the possibility of miracles from above. Noah has proven time and again what a strong little boy he is.

    Your family has touched us all this year. The faith and the love and the hope you put out there every day is doing God’s mission. Just by having the courage to share your story with us each day, you are “repaying” all of us.

    God bless you and Merry Christmas from the Vasami Family in Delaware.

  7. Thank you for the beautiful Graves family picture. I pray God’s love and grace this Christmas season for you all. I continue to check the blog daily and am believing for that Christmas miracle God has!
    Blessings from Missouri – Angie

  8. How appropriate for a Christmas picture. I imagine that is the beautiful picture Gods sees looking down at you every day. Smiling faces filled with so much love, faith and hope. Well done faithfull servants! Keep it up… you can’t help but eventually rub off on those doctors! May your Christmas miracle come very soon!
    Praying with you all!!!

  9. I google searched that Pompe disease mentioned in an earlier blog, there are some striking similarities to Noah’s condition, is this something he’s been test for and it’s been ruled out?

  10. I am sharing some of your comments from your blogs to our Young Marrieds Sunday School class this Sunday at Grace Chapel in Englewood. We have many young parnets in the class that have allready been impacted by your family and have shared the web site with others, just wanted to let you know how God is continuing to use your situation.

    Shawn Palmer (NWC class of 1999)

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