Jesus, bring the rain

Yesterday we made a quick stop in the super cool gift shop here at the hospital. As you can imagine we probably would have bought Danica most anything she wanted. She honed in on a pink ruffly umbrella. She was so proud of it and carried it around the rest of the day. She kept asking us to get under it with her. It made me think of the storm we were heading into and all we have to get through.

They took her back about an hour ago. They let her take her umbrella with her, and she bravely walked back to the huge OR holding the nurses hand. When she was out of sight Dan and I crumbled. Thank you for praying every moment of this long day for our sweet girl and our family. The rain is getting hard and heavy.

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.

It's dark in our hotel room/  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.the titanium and the 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.

Quiet

I have removed the music playlist from Danica's blog for the next few weeks. I am needing some quiet as we move into these serious days. I am realizing faith does not make any of this easier. It keeps us from being swallowed completely by despair, but it does not sugarcoat this walk we are on in the least. If there is to be any peace at all it will be found trusting in who He is and what He says He will do.

Endure

The word "endure" which means "to remain firm under suffering or misfortune without yielding", has been my word of the week.

Monday we packed up and drove to Cincinnati. There is something about the drive there that takes so much out of me. Danica does amazing in the car these days and a special Dora DVD from her uncle Mason, aunt Yvette and cousin Jake with her name and her face in the actual episode kept her VERY happy. When we got to the hotel I literally collapsed into bed. Most days since my surgery I am just not able to function well into late afternoon. I know I am still healing and the amount of stress I am under is most likely impeading this, but I am discouraged. On Monday night I spiked a fever and thought I was seriously going to have to send Dan to the hospital alone with Danica the next day.

Tuesday morning I was up and ready to go. A meeting with Kelly from guest services was our first appointment. She was taking us to tour the surgery waiting area, the PICU and the neuro floor. Every person we met along the way was so kind and helpful. Connie in the surgery waiting area reserved a special private room for our family to wait in during our long day next week. This is huge for me. I have a really hard time sitting out in a big room with so many other people and working through the fear and pain in public. They will come and bring us hourly updates during Danica's surgery. (I will try to post these on facebook and make a link directly to this blog so you will know how to keep praying as the surgery progresses.) We met with the social worker in the PICU, and she was able to explain more about how Danica's care is managed and how the rounds and decisions happen. I needed to hear these details. We saw what Danica's room will look like after the PICU and visited the beautiful playroom. A child life specialist explained all the therapy resources available.

Next stop was the testing center to get all Danica's labs done. She was so brave. I held her on my lap and turned her head to the left and told her, "Don't look!" The nurse stuck the biggest needle into her little right arm and drew tube after tube of blood. Danica didn't even wimper. We hustled across two buildings to visit cardiology and have her EKG. She thought all those electrode sticky things were so funny and giggled while they did the test. At this point Dan and I were starving and dehydratred, and I was beginning to hurt from so much walking. We made our way to the pulmonologist and did some serious waiting. Danica was really tired and grumpy and finally fell asleep in my arms waiting for the doctor to come in. Dr. McPhail had some very helpful suggestions including asking Danica be intubated through a scope in her nose instead of her throat. This made so much sense to me.

Monday Danica will have additional bloodwork, and we will have a very important meeting with the anesthesia team. Please pray about this meeting. Because of Danica's drug reactons it is critical we can find some kind of effective pain management that will allow her to rest and heal after such serious procedures. Please pray her cough will go away in the next few days. Please pray our family will find peace and rest in one another's arms this weekend. Your prayers were felt so keenly during this visit.

Children's hospitals are not for the faint of heart. When you walk through the halls and look into the faces of so many parents and children suffering it makes the rest of the world fade to black. People can say all they want about having their priorites in the right place and knowing what really matters, but I can tell you if went to one of these places and just sat quietly and watched the stories unfolding around you something would change in your heart and your life. Every time we do another trip and more appointments there is a teeny part of me that says, "I can't do this. I want off this ride." I see this in the eyes of the other parents too. We look at one another and silently speak, "ENDURE."

"More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope." Romans 5:3-4

Our hope remains.

Unexpected grace

Over a month ago a lady who had read one of the articles about Danica in The Canton Repository called me to see if it would be okay if she put up a little information about Danica at the credit union she works at. She put out some prayer cards and a jar and talked to her members about our girl and our family. Last Thursday Danica and I went out to meet the wonderful ladies who work at the Sugardale Credit Union in a small trailer on the outskirts of the factories. Most of their members live paycheck to paycheck and are stretched to the limit. The generosity and love they showed us is another beautiful example of how drop after drop of love becomes an ocean. They raised $350.26. They presented Danica with a beautiful doll and blanket from a Christian biker group. Danica was very moved by meeting these women. She hugged each of them when we left and has been playing with her dolly every day since. There are no small acts of love in our story. Thank you!




"Unexpected grace always settles in the palm of the heaven-turned hands." Ann Voskamp

Books for Brains

One of the crazy things about me is the planning part of my brain. Knowing I will be home bound for three or more months once we finally return from the hospital has me thinking about Christmas already. Because we've been on a strict budget for the past several years I have always begun shopping for the girls mid summer and looking for little things to make the holiday season special. Books are one of the gifts of choice around here. We LOVE books.

Two years ago I was introduced to USBORNE books. They are amazing. (Several of their ART books are opened literally almost everyday in our home.) Some of you may remember I had on online show last year around Danica's surgery to help you with some of your early shopping and to earn enough credit to get the girls some books. My friend, Melissa, wrote me last week and suggested we do another show and leave it open for several months. She has generously offered to donate from the show to Team Danica. I will keep a link titled Books for Brains in the sidebar so you can come back and check it out or just go NOW!

Happy Reading.

Love language (For my Dan)

Dan and I will have been married 10 years this coming February. We figured out our roles very early on in our relationship. We don't argue about day to day things like so many couples do. Dan cheerfully does all our laundry, empties the dishwasher (and even reloads it, because I still haven't learned how it's supposed to be done), and vacuums every other day. I pay the bills (and the ones I can't pay I organize and worry about). I manage our health care. I make the beds first thing every day, grocery shop and do homework and baths. I wipe our kitchen floor on my hands and knees, windex our front door and windows as soon as I see a smudge and wipe our counters over and over and over. We both work very hard at our jobs which have been opposite schedules much of our marriage so our children would not have to be in day care.

I can honestly say I have never taken for granted all Dan does. He is completely committed to our family, our home and our life. He hasn't watched a full football game or gone out for a beer or played a game of golf in over a year. He doesn't think in terms of his own wants or needs. The only thing Dan does now that he loves is working out. The gym is like his Zoloft. I try very hard to make this happen for him even with our busy schedule. Since my surgery he has only gotten to go a few times because he has been trying to do everything while I heal. Time and energy for physical fitness has fallen in the "luxury" category, something we just don't have over here these days.

This morning I had so many calls to make for details concerning Danica's surgery. As I was having these conversations the realization we are really doing this in less than two weeks hit me, and my heart began to race. The great risks and the pain Danica will face and the fear of what could happen all came rushing at me. Danica began wanting me as I was on the phone. I was frustrated and trying to hear and focus on what was being said, and I felt like Dan wasn't doing enough to try to get her out of the room or distract her. There was a fight. It had nothing to do with Danica interrupting the phone call. It had everything to do with the stress of our life and the lack of connection from weeks being physically apart and barely speaking to one another. Dan and I both recharge our batteries by being close to one another and sharing. When we lose this I feel insecure and so does he. I need to hear the words, "I love you." Words are my love language. Dan didn't even say he loved me until we had been dating over a year. He clearly loved me, but he could not say it. Love in action shown in practical daily care and sometimes in great self sacrifice is his love language. The storm we are headed straight into with our daughter is bound to bring out the worst in us once in awhile. Ugly words were exchanged. Our hearts were wounded, and we retreated.

Danica and I headed out to a local Credit Union to meet some beautiful women who have been raising money for Team Danica. (Post to follow on their love!) Dan was to finally get some time at the gym. On my way home the oil light came on in my car, so I rang the house to just see if by chance he was still there. He WAS still home. I asked him why he hadn't left, and He said something about motivation. We decided to meet at Midas and get the car looked at since we have this trip to Cincinnati on Monday. When we returned home I walked in to find my newly inherited, simply breathtaking bookcase that came from my grandparent's farm house in Minnesota full of books. I've had it since Monday, but I cannot lift yet, so I was thinking it would be late fall before I would be able to work on the project. Instead I walked in to find my treasured books that have been in boxes in the basement for years gracing the shelves. Dan stayed home and carried up all those heavy boxes and lovingly arranged the books, so I would be happy. This was his "I'm sorry" and "I love you", and "I will never leave you" all rolled up into a selfless act.

I'm listening to lots of Andrew Peterson lately. These words from his song "For The Love of God" come to mind,

"Now, love is not a feeling in your chest
It is bending down to wash another’s feet
It is faithful when the sun is in the west
And in the east

It can hurt you as it holds you
In its overwhelming flood
Till only the unshakeable is left
“This new command I give you,” He said,
“Love as I have loved”
So brother, love her better than yourself
And give her your heart

For the love of God
In the name of Jesus
The groom who gave his life
To love his bride"

I love you, Dan.