Thursday, June 17, 2010

Learning so much.

Judges 6:22-23

"When Gideon realized that it was the Lord’s messenger, he said, 'Oh no! Master, Lord! I have seen the Lord’s messenger face to face!' The Lord said to him, 'You are safe! Do not be afraid! You are not going to die!'"

(This piece of scripture can speak for itself... My words can't compare.)

How can one day feel like ten years? I started this day feeling transfered pain from my little one because I was so fixated on his own agony. It progressed to me imagining my hands were resuscitators as I placed them above his weak heart and we were wheeled into Intensive Care. Then, I handed my baby over to strangers in the operating room. Wait. I shouldn't say that. The fabulous Dr. Downing was our surgeon and I taught his son Austin when he was in seventh grade! That was a comfort. Still. I left him there.

The surgery went well and Gideon now has a port that was inserted for chemotherapy purposes. Don't feel bad if you don't know what that is. I had no clue until I got here and learned about it with my kids using "Porter" the doll. Basically, instead of poking Gideon a trillion times to give blood and to give him his chemo through an IV, this is under his skin and attached to a vein already. It makes drawing blood painless! No more pokes! (Well, for the IV type of chemo and blood draw, that is) Gideon has HAD it with being used as a pin cushion. Instead of wanting the nurses to fall madly in love with him, he gives them the stare down if they come in. He actually used these words, "I don't want another shot! I AM TIRED OF IT!" And I can't blame him! So, the port will alleviate that drama.

Sometimes ending one drama adds another, though. This boy comes out of surgery or any other sleep-induced procedure RAGING. He fights like a three hundred pound man. He hits. He kicks. He flails. He rips off cords, and even the PIN inside of his port! Apparently this is a side-effect for many people, and a nurse says it is usually the most docile who respond this way. All I can say is that I have never sang "Somewhere Over the Rainbow" so many times to calm this child down.

With this procedure, I can safely say that Gideon's honeymoon with the hospital is over. We have resorted to toys and mommy dancing and movies and food to keep that boy entertained.

The steroid he is on is making Gideon morph into someone unlike himself. Again, this almost always happens to all others. Still, I miss that sweet and gentle one. I can still feel him when we cuddle, though. And for the first time since the day began, Gideon SMILED. His first smile was directed at non-other than Derek Wheaton - my early elementary principal and a child whisperer. Derek's calm demeanor and personality radar got to my little guy. I am thankful for that! I just need to remember that while Gideon's meds will be determining his mood, I can choose my own mood each day. I will always choose to turn towards the sun, even if I have to scale a mountain to find it beyond the clouds of this disease. I guess what I'm saying without getting metaphorical is that I have OPTIONS whereas Gideon does not. The drugs are causing his moods.

We had other developments: Tom and I sat in the Chemo Clinic with our nurse, Michelle. She will be our nurse for the entirety of this disease. We LOVE her. She is fantastic! We hope and pray that Gideon's treatment will last the planned 3 year structure. We will need your help for a long time! Thank you for the support we have already been given. I feel your love and prayers. I have said that before, but I need to say it again! It is looking like we will be leaving the hospital this weekend if there are no other complications. We will administer a lot of the chemo at home, and we will also come back to the hospital when Gideon needs blood transfusions and in-house chemo needs (through the spine or through a shot in the muscle).

How do I feel about leaving so soon? Stressed out and afraid! What if I do something wrong? What if Gideon is exposed to a virus that makes him incredibly ill? What if I miss a warning sign? Really, I don't see HOW anyone can have a child with cancer and not be a believer. I can't do this without Him.

So, instead of focusing on the scary stuff, I will look towards the FUN! Brody and Gideon share a room. That can't happen anymore because of the whole germ factor. I thought this may be the case, but Michelle reiterated it. SO. Here it is: WE ARE REDECORATING! I am so excited. It will make this splitting of two best friends and brothers easier and exciting for them. Brody's room will be sports themed and Gideon's will make him feel like he is a pilot for sure. These rooms will be their safe spots to be their own selves. Gideon won't be a chemo patient, he'll be the boy who loves planes. Brody won't be the kid whose brother is sick, but the lover of sports that he is. I want them to feel like they are on a vacation in their own space. I know we should save for other purposes right now, but I know I can do this on a creative budget. If anyone is selling boy furniture, let me know, okay? One of the rooms has my flowery girl furniture from my growing up years. I won't have time to garage sale, but if you are selling something, please let me know. I just want to bring home new happiness, and not just new struggles.


  1. Amanda, we have a big area rug, an entire bedding set, and a whole mess of room decorations and stuff (all sports-themed, and brand new) that we were planning to use for Ben's room. We haven't been able to bring ourselves to get rid of it yet, but we think it would be perfect if you would like it for Brody's room. It's all yours if you want it. Let me know, and we'll figure out the best way to get it to you.

    (We also have a bunch of surf-themed stuff, too, if you want it...)

    We love you guys, and we are praying for you!

  2. Amanda, I am absolutely loving your blog. It makes for some hard reading at times (the kind that prompts thoughts of "Are we actually going through this?"), and yet grace is so apparent in what you write that tears are mingled with smiles. I will pray for you as you make the transition from hospital to home. I understand how overwhelming the responsibility must feel at this point, but one of my favorite Christian authors, Elisabeth Elliot, abided by a simple, stress-reducing maxim: Just do the next thing. Life is manageable and joyful when approached from that perspective, I've found. Anyway, sending you all hugs and kisses and prayers as I write this. Love, Cathy

  3. You are such a beautiful writer....I look forward to reading your blog every day and then praying for your needs. We have a beautiful maple bed you could have. It's a single and natural in coloring, we just don't have the mattresses anymore. I know going home is a little scary but it will bring you one step closer to normalcy and Gideon will LOVE being home. Prayers, prayers, prayers....xoxo

  4. This is the first time I've had access to the internet in a couple of weeks so now I'm all caught up.
    I love you all so very much. I'm visiting the doctor today to find out how soon this bug I have will be gone and when I can come visit Goblin.

    Let the boys know that Auntie Annie got them both something special in Tennessee and I CAN'T WAIT to deliver them! All I need to know is... Brody Bear or Brody Wolf, Gideon Bear or Gideon Wolf??

    I think of all of you every second. Whenever you are in need of anything, let me know. Be it a ride, some company, an errand, a phone call, a hug, whatever, please just let me know. Anything. I love you all with every little bit of me and I can't wait to see you.
    Manda, whenever you have two seconds, give me a call.

  5. Sweetheart, if you need any help transporting things (like the stuff Matt offered above), let me know... my trusty truck and I are ready, willing and able to do the driving-from wherever it is, straight to you!!!

    Know that we will be with you every step of this journey, regardless of the valleys and mountains. You have ALWAYS been the sunshine in this family, so now it's our turn to shine for YOU! Don't hesitate to lean on us, although I know you have a veritable ARMY of people over there.

    Keeping up all the hopes, wishes, and (yes) prayers, every chance we get!!


    ~~Aunt Nancy~~ (& Uncle Mark, Jessa & Steven)
    PS - I check this blog several times a day, just to see if there are updates from you or others. I am so very THANKFUL you're taking the time to let us all have updates this way!

  6. Amanda, I am a friend of Deb Milka's, she told me about your blog. So my family has been following along and praying with you and for you. We have a dresser that we are trying to get rid of. You are welcome to it. If you would like to see a picture of it, I can send you one. We can even deliver it.

    Mary Galer

  7. Oh, I almost forgot... reading this post, I was so reminded of Steven and his constant ear, nose & throat surgeries. He came out fighting like a wildcat every time. When he had his tonsils removed, we actually had to restrain him physically from putting his hand in his mouth because he kept yelling "There's a golf ball in my throat!"

    Hang in there, kiddo. In a small way, I know that horrible feeling of handing your precious baby off to others, trusting them to do whatever is necessary to help. This WILL be okay. Gideon WILL come through this. You and your beautiful family WILL prevail. And Gideon's "Army" will stand strong, marching along with you!!


    ~~Aunt Nancy~~

  8. Hi Amanda -

    You do not know me but I have played soccer with Ann Thornton (Annie Ponicki as I have always known her) for years. I have been following your blog ever since Ann posted it on Facebook. I feel inexplicably drawn to it. I think because I have 2 boys myself 3 and 5 years. Both love soccer and airplanes (daddy is a pilot!).

    I know there is very little that I can offer but please let me know. Would Gideon like to see a corporate jet - up close and personal? My husband and I have both worked in aviation for years and still have many contacts. We live in GR now (and my husband flies from here) but we still have contacts in Kalamazoo too.

    I will of course be donating to Ann's race. I ran a 1/2 marathon in Detroit for Team in Training a few years ago myself. It's a great organization!

    Stay strong and know that we are thinking of you along with the many others.

    Kelley Swanson

  9. Funny thing about contacts... One of them can get you her phone number. :) Kelley Swanson is a good friend of mine and our boys play together. If I can help in any way, please let me know. :) I think it will be a great idea to remodel their rooms an HOW EXCITING!! What a great way to make it fun for them. You are so creative Amanda. I would love to be a kid in your midst! Your passion and enthuisiasm is amazing. I will keep looking for things here that may be helpful with your decorating. Lots of love, Kelly Henry xoxo

  10. P.S. I forgot to tell you that when Seth was born, he had to have surgery at four weeks old. Dr. Downing did his surgery too. He is an amazing doctor. I still know what you mean about having to hand your baby over. It's not easy, no matter how old he is. We take him back to U of M at the end of the month for another procedure and we will have to do it all over again. In any case, you are not alone, Sweetie. We are all here for you. When you have to hand him over for procedures or even the hardest part of all...bringing him back home. That is when you will need us the most and we will be here. Ready and willing!!

  11. How can I help? I want to do something. Anything. Suggestions? Jenelle