• Tomorrow is filled with Hope

    Date: 2013.11.25 | Category: Benjamin | Tags:

    This whole trip is about hope.  Hope for Ben to be pinker (his sats are in the 65-70 range).  Hope for a longer life, a healthier life.   Hope when we had none.  Hope is a beautiful thing.

    We had a horrible flight from Chicago to Boston.  A flight that was bad enough that I started writing a long text to Cassie telling all the kids how much I loved them.  I was determined to send it before I died.  There were no announcements from the cockpit.  We were in the very back row and the stewardesses were saying things like, “Why are we going back up?  Why is this taking so long?  Why are we still over the water?  This is the worst flight I have ever been on.”   You know the usual nice comforting words you are wanting to hear when you frightened.  And to top everything off in a plane that was eerily quiet, there were the lovely sounds of vomiting all over the place.  It was quite the ride.

    I have never been so happy to hear the words, “Welcome to Boston.”  Ben on the other hand walked out of the plane like he was going to a _______. I could not for the life of me remember what this saying is so I asked Dan to look it up while I continued to type.  What is the phrase he gives me to use?  “He came off the plane slower than a one-legged dog on tranquilizers.”  I need a book on phrases, that’s all I’m saying.  And yes, I have chosen to be married to this man for 29 years.  We celebrated our anniversary by flying to Boston.  We truly know how to have a good time.

    Ben drug his feet and slowly went down the aisle.  The stewardesses asked if he was okay. They had seen him enter the plane, skipping down the aisle, telling everyone down all 37 rows, “Hello”, especially the girl in row 21 who was wearing a Superman t-shirt.  I told them he didn’t want to be in Boston because he was having heart surgery.  They said they’d pray for him and he got a little boost in his step.


    He did pretty well the first night.  He was doing great at pre-op until anesthesia came in with their scrubs on.  Then it was all bets off.  He just kept saying, “Hey, let’s go get on that plane.  That would be fun.  Let’s go home.  I miss the kids.”  and mommy’s heart broke.

    I am thankful for the chance for Ben to get healthier.  I feel blessed that there is hope and that God has provided so wonderfully for him.  It is still hard though.  But to ease my mama heart, we have had numerous “God winks” through the whole trip.

    We checked into the hotel and they handed Ben a book called “Where’s Hope?” and a little bear named Hope.  He was thrilled and since this whole trip is about Hope, I thought that was very fitting.

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    Remember the little girl Paige we saw on our last trip?  Well, we even rode the elevator with her.  What are the odds of that?

    We have had people, who I barely know, tell us that they are praying for Ben.  I am always humbled and blown away by this fact.  The number of people who care about our children just amazes me. Miss Deb, the children’s homeschool advisor and family friend for over 10 years now, celebrates her birthday tomorrow.  What does her Facebook post ask for?  It asked that if you were going to wish her a happy birthday she would be thankful but she asked everyone to say a prayer for little Ben too. Friends that we just met on our last trip to Boston, friends we have never met except through Facebook, and friends that we have had for a long time, have shared Ben’s story and asked for prayers.  These are the kind of friends that we have.  The kind of people who care and pray and comfort us when our hearts are fretful.

    I’m not worried because I believe Ben is in the best hands and I believe that God has more in store for my little guy, but I am also at peace knowing no matter what happens Ben will be healed.  I will see him again.  God is good and I trust His plan.  I know this plan is perfect.  There is great peace in giving up control (which I only delusionally thought I had) and trusting in God’s plan no matter what it may be.  The peace you get when you finally just follow God’s lead is amazing.

    But it doesn’t mean your heart doesn’t hurt.   It hurts when he begs to go home.  It hurt when I was scrubbing his little chest with the pre-surgery scrub knowing that this would be the last time I would see it without a big scar.  It hurts knowing what he will be going through.  There will be pain.  There will be fear.   There will be anger.  Those all hurt a mama’s heart because we always want to make things better and we know a kiss and a band-aid isn’t going to fix this one.

    We have been told that they are taking the more conservative route.  They will be doing the arterial switch with pulmonary artery banding.  They are going to leave the VSD alone because they are worried about it causing heart failure.  We have to be at the hospital at 7.  They said it will take 1 to 1 and 1/2 hours to get him ready and 5 hours for the surgery and then they will close him and take him to the PICU.  They are planning on keeping him completely sedated for 3-4 days.  They have told us to plan on 10 days if everything goes perfectly.

    Thank you again for all the prayers and well wishes.  Thank you for being part of our families story.  It truly is humbling and overwhelming and so comforting during this time.