The Blaines

The Blaines
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Buggin' For a Cure

Buggin' For a Cure
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Sunday, March 3, 2013


(I let Richard title this one, because I couldn't think of a title)
Last post I said we'd have more decisions to make.  I never imagined that we'd be making those choices so soon.  Now I'm really having to live up to what I wrote.  After Ellie was diagnosed my Dad asked us if we had looked into St. Jude's.  I didn't want to deal with it so I told my Dad to talk to Richard.  Besides the UVA doctors had said we should go to DC...why go against them?  Richard and Dad talked...I have to admit I was kinda mad, or I guess you could say frustrated, we had a plan when we left UVA and now these two were trying to disrupt "the plan".  If you know me, I LOVE plans and I don't like changing them!  Richard took it upon himself to get in touch with St. Jude's about a clinical study he saw on their website for children with Ellie's type of tumor.  They responded to him and told him what information they needed for review...again I was frustrated with him...what was he thinking...does he know where St. Jude's is?  Doesn't he realize we are having a baby in 3 weeks, doesn't he know all our family is here, all our support would be here?  I couldn't imagine how this was going to work.  We were still waiting on DC to contact us about "the plan".  I thought for sure God would work this one out, He's gonna see why DC is the better option for our family, He's gonna close that St. Jude's door, because that's just crazy...even if it's free medical care.

Apparently God didn't get my memo and I wasn't getting His.  Richard told me Friday night that while at work St. Jude's had called him and said they would love to have Ellie there...WHAT?!?!  That is not part of "the plan" (you would think by now I would have learned that it is never my plan).  I cried and cried and cried...kinda like my son!  I had just blogged about Love for my husband, and how close we as close as were are I told him part of me wanted to be mad at him for evening starting this St. Jude's thing without asking me.  Now we have options, how the heck do you make this choice?  How do you split your family 14 hours a part, with a new baby?  How do you not choose the free option that so many people would kill for?  Is free worth being that far apart?  Too many new choices to make...I just continued to cry.  Richard tried his best to comfort me and begged me to try to sleep.  Yeah right, I got the computer out and started reading about St. Jude's, I think desperately trying to find something wrong with them, a reason why this wasn't going to work.  As I read all about helping pay for travel, and lodging and medical bills, the only thing that stood out to me was "one parent".  But there are two of us...we are a family.  When Ellie was in the hospital for a week, we were both there every night.  We were each other's support in the world could be do this solo?  Or maybe I kept thinking, how can I do this solo? 
There wasn't much sleep that night, and I woke up in a horrible mood.  Our mission for the day was to finish the bedroom move, Ellie into Noah's room.  I was grumpy, snapping at kids, crying, snapping at Richard, I was letting this take over me.  I wouldn't stop cleaning or organizing to go read my Bible for a few minutes...which Richard tried to make me do.  I turned on the radio to try to drown out the noise in my head.  This was the first song I heard.

Jesus...He was the one person I was not trusting in or turning to in this moment.  As I finally decided a break was in order I opened my Bible to any page. The page I flipped to had a devotional title "Accepting God's Will".  I read with tears...still not quite understanding what God's will was and what I was supposed to do.  The verse with the devotional was Hebrews 12:20-21
"May the God of peace, who through the blood of the eternal covenant brought back from the dead our Lord Jesus, that great Shepherd of the sheep, equip you with everything good for doing his will, and may he work in us what is pleasing to him, through Jesus Christ, to whom be the glory for ever and ever. Amen."
Again my bad thinking train was derailed by some visitors...thank goodness.  As we finally told some people about St. Jude's I started to feel more at peace.  Not that I knew what choice to make but those words "equip you with everything good for doing His will"  kept on ringing.  
We started to write our list of questions last night for St. Jude's...I began to feel that horrible sick to my stomach feeling again (could just be indigestion).  I went to bed, again my mind racing and trying to figure this all out.  Thankfully when I woke up this morning I had a new outlook on this whole situation.  I feel more at peace today.  I think my adamant protest against St. Jude's was all out of fear, selfish fear.  Fear of how my family is going to function, fear of being separated, fear of having to be in a new city, fear of the unknown.  I was thinking of my family....but a lot of myself.  God continues to show me every day how strong he has made me, why am I doubting now what I'm capable of.  Planner Carly has a "tentative plan" in her head now.  Of course that could all change once we talk to St. Jude's tomorrow, but it at least makes me feel better. 
As Preacher came and hugged me and congratulated me on the financial blessing God had given us, I had to smile...he's right.  Never once had I looked at this situation that way, I saw it as a burden.  God wouldn't have placed this situation in front of us, if he wasn't going to help us through it.  I still don't know all the answers, have not a clue how this will all work out, but I do know that I will be well equipped for doing God's will.

Prayers, Praise, and Pink
~ Carly


MotheringBoys said...

I pray your family's time at St. Jude's proves to be healing. Both in body and soul!

CarolineR said...

We lived there for 7 years. St.Jude is wonderful. I have some friends who volunteer there and many friends who would be willing to help you with anything you need.

Anonymous said...

God bless you and your family. This has touched our hearts, not just because you and patti were friends, but your transparency and witness to your faith is beautiful. We also have been where you are. Jessicas little girl has Neurofibromitosis, which is a tumor disorder, along with many other health conditions. Being very familiar with Children's National in DC, St Jude's would be a blessing
for you all I am sure. Children's is not somewhere I would want to spend lengthy amounts of time. We took Aniah (jessi daughter) to Children's of Philidelphia for a serious abdominal surgery only because we didn't want National to be involved. Sorry for being so long but felt it may ease your mind. Know that you are all in our prayers exspecially sweet little Ellie. We serve an awesome God and He will carry you through. Love and prayers Linda

Annette Dusenbury said...

My college friend Sarah spent most of last year at St. Jude with her son...while her older son and husband were home in SC. If you ever had any questions I'm sure she would be more than happy to talk with you about her experience, and how she handled being apart from her family/support system.

Aunt Joey said...

Dear Carly,
As I sit and read your beautiful blogs I am in awe of your ability to write of your love, experiences and feelings. You touch our hearts and souls with words that question and inspire our Faith but validate our LOVE. As always, Aunt Joey

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