Thursday, September 30, 2010


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.


  1. I agree with the hospital view! I felt this so much in NY. Esp. at the Ronald Mcdonald House! I remember getting on the elevator with other parents and just smiling, knowing they were feeling the same exhaustion as me. One woman (I did not even know her name) hug me as I was getting in the car to leave. She said "I am going to miss you!" With tears I told her I would miss her too. I cry just thinking about her. I will not know her story here on earth but that does not matter, we will always be connected! Just as we are connected! Love you guys and praying for you! Melinda

  2. Monica your words are so true and Im so thankful God has blessed you with such a greaat gift of writing so you can share so much with others. There are so many times when people are complaining about there mochas being made wrong I want to scream at them go read monicas blogs you say what we all are going thru. soon we will be returning to the hospital for another hospital stay with Stryker and brain and back surgery this time just after his second birthday. and your words are such encouragement and strength for so many thank you thank you thank you. Your an amazing special person and I cant thank you enough for sharing with us. We will be praying for all of you The Reed Family

  3. Just wanted to let you know that my "mommy heart" aches for you! Myself and my three daughters have Chiari and other conditions. Although we have been through so much(or probably because of it:) we see our blessings every day.
    The load is so heavy sometimes and I pray precious Danica gets relief and that you and your husband are given peace throughout her surgery and recovery.
    God Bless you....the fusion is rough at first, but gets better!!

  4. Hi, Monica,

    Someone gave me your blog to read. My daughter has craniosynostosis and we're scheduled for surgery in November and we've had several stays in the Children's Hospital here for things related to her condition. When I read what you said about wanting to "get off the ride" I just started crying. I understand that feeling so much! But you are right -- seeing other parents go through much worse with their children make my attitude do a complete turnaround. And I've had moments where I think my faith in my Heavenly Father was the literal last thread of motivation or hope I had to cling to. But He is so faithful. I am so moved by your story and by Danica's beauty and her strength. Please know that we are praying for you, and when you think you can't go on, YOU CAN!