Saturday, October 4, 2014

24 hours of vacation and 4 years later. Celebrating and remembering.

I'm laying here in a a super comfy hotel bed in a Residence Inn at Polaris in Columbus, Ohio.  Dan is downstairs swimming with the girls.  We left our home fairly early this morning to begin twenty-four hours of the first trip together as a family since Danica's wish trip in April, 2011.  I know, it sounds crazy, but it's true.  Dan and I have gone many times for my surgery trips in Maryland.  We have gone together with Danica for numerous Cincinnati trips.  I've done surgery trips alone and with my Janet, and I took my Tucson retreat with Amy in February, but we have not been away together, all four of us, for three and a half years.  Every bit of our resources has always gone to medical travel. This summer when I felt well and Dan had a little vacation time saved for the first time in five years we just couldn't afford to go anywhere.  Heading into me leaving again in two weeks for another surgery, my eighteenth surgery, I wanted to plan this getaway.

We had Marriott points to pay for one night.  This hotel is brand new, suite style with even a kitchen, and so beautifully appointed I would swear it is from the Autograph collection.  My sister-in-law works for Marriott, and it has been a blessing in many ways because we have had to use hotels for Danica and I's medical trips.  Hotels we could not afford are reasonable because of our friends and family rate.  I am really particular about my space for many reasons especially because of my sensitivity to smells and the comfort of the mattresses.  We've stayed at Marriotts all along the point levels, and I know which ones to ask not put bath products in or request chemical sensitivity rooms when available.  I know which floors to ask for and how far from the elevator I want my room.  The Marriott in Greenbelt, Maryland knows and remembers me I've stayed for so many surgeries and trips.  I love that Melba answers room service and anticipates I will order the veggie burger, no onions and everything on the side with sweet potato fries. The staff don't let me lift a thing, they call me cabs when I'm there alone, and there is a full service Starbucks so I can treat myself to a white mocha before some of the longest days of my life. I am grateful in the midst of hard travels we have had very comfortable accommodations.

Columbus is home to two of the best shopping areas in Ohio.  Shopping is something we just don't do.  I joke if we can't buy it at Target we don't have it.  We shop clearance online for clothes because the smell of stores and the people shopping make me very sick, standing on cement floors hurt me and pushing hangers to look at things makes my right shoulder pop out.  My girls are both at the age where going to the mall would make them very happy.  I know this is a first world problem, but it is an example of how our lives are so different because of my chronic illness.  Easton is good for me because you can leave most stores to enter fresh air.  There is good handicap parking and Dan can move the car around to limit a lot of walking.  Oh, and there is an American Girl Place and a Delia's. Both girls have had birthdays in the past couple of weeks and received money.  Each one knew exactly where they wanted to spend it.  It brought Dan and I such joy to see them wide eyed and carefully budgeting and selecting what they would buy.

We have friends who have made a tradition of sending us pizza for the girl's birthday.  This year they sent money for each of them to pick a restaurant and go out.  We rarely eat out for many of the same reasons we don't go shopping.  Delaney picked an awesome burger place called The Rail and Danica, of course, picked PF Changs.  This has always been the place in Cincinnati we go after scans, x-rays and appointments to celebrate her being oh so brave.  Today was made more special because Laney was with us.  We were all together.

The day wasn't perfect.  Dan and I argued about directions.  We never argue.  I was in considerable pain and overstimulated by the time we were heading to the hotel.  My communication breaks down quickly in these situations.  I took some meds and fell into bed while Dan watched football, Delaney looked through her fashion finds and Danica played with her doll.  My girls didn't swim at all this summer so the luxury of an indoor pool is a big deal too.  One of the sometimes hidden gifts my girls have been given through so many years of a life that often looks very different than their friend's lives is the pure joy and appreciation that comes from very simple pleasures.

Four years ago we were at the Springhill Suites in Cincinnati preparing for the hardest day of any of our lives.  Delaney had stayed back.  My parents were there and Dan's dad and sister Mary.  I remember Dan's dad getting teary eyed several times because when he looked at her, just three years old, she had no idea at all what was really going to happen the next morning and how it would affect her not only the next year it would take for initial healing but for a long time after.  We had been through one brain surgery, but this was so much bigger.

This is what I wrote.

"This is not  how it should be. This is not how it could be. But this is how it is. And our God is in control."
This morning's appointments at the hospital went well. Thank you for praying for us. The reality of tomorrow morning and handing Danica over to this team of people who could never know her or love her like I do sends me reeling. If I try to think about the hundreds of details that go into this surgery; the anesthesia, the brain being cut open, the brain being coagulated, the patch, the stent, the drain, and then after all that the bone cutting and grafting and titanium and brace. . . When I try to find something . . . anything to hold on to there is only one sure thing. I believe with all my heart and soul our God is in control of every single moment. I will go crawl into bed now and hold her while I plead with God for the miracle we hope for and the grace to accept anything less. 

The song below by Steven Curtis Chapman was playing in my head and heart that night.  As we snuggle here in another hotel room, now together as a family, my seven year old Danica girl for most intents and purposes is miraculously healed.  Everything I ever believed about who God is has been tested a thousand times since.  He has enlarged our territory to include relationships that have provided for us and sustained us when we simply could not survive on our own.  He has preserved Dan and I's marriage through unspeakable trials.  He has protected Delaney in the sometimes lonely space when we could not be there for her and particularly when I simply could not mother how my heart desired. Our entire lives are richer and fuller.  Our eyes are now wide open to the power and possibility of real faith and lasting hope.  There are plenty of times I doubt in my walk with God, but in this one thing I have never been more sure.  Our God is in control.  You either believe in His providence and His ultimate desire to work good for His glory in your own life or you falter in the vague world of fate and chance which ultimately leads to perilous despair. Because of His grace I choose the first. I know it is true.  His great faithfulness over and over again proves He is in every single detail even when we may never understand.  

Tonight I am full of gratitude for four years of testing and proving.  I am thankful for twenty-four hours of vacation with my family.  Our Hope remains.

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