Friday, March 11, 2011

This is our story, this is our song

Today is another snow day in Ohio. It's snowy in the most beautiful way with heavy wet branches hanging low to the ground and the perfect whiteness covering the earth's stark and muddy ache for spring. Delaney is off school, and we have a had a day full of the yin and yang of hours upon hours inside these walls together. The morning always seems so well intentioned and peaceful and fun and as the day wears on we end up with fussy spirits and less attentive ears and hearts. My pain is so bad on these days. I cannot explain the way these storms make every single fiber of my body hurt, I just know it is my reality. My children are aware too, and it makes me so sad. They catch me brushing my tears away. I put one foot in front of the other and force a smile and tell them God is good and life is good because that's how we wear most pain in this world.

I wonder how to keep writing about Danica's healing and our family's story following such a miraculous step earlier this week. I sense we are all on information overload. There are so many REALLY hurting. The literal earth is shaking and the waters of the earth are raging today. We are warm and safe and have so much more than we need. Danica is walking around our home and playing. How can I express anything but praise? Brain surgery and fusion is a headline. This is feeling more like second page news.

We never thought this journey would be so long. Remember when Dr. Crawford gave us the first six week benchmark? I now know he was pushing us forward and testing us. Fusing a child Danica's age so often fails. We were just a statistic at the beginning. When he brought up her x-ray on Tuesday and showed us her fusion so far, which is really only at about fifty percent, he first decided the brace had to stay longer. As we talked it through he began to agree we needed to give her some mobility back but emphasized how nothing about the actual mechanics was different with an Aspen collar than with the Minerva. Because of our track record he trusts us to stay the course and keep this girl safe. Nothing has changed and EVERYTHING has changed.

The mending of our hearts and lives will need to continue stitch by stitch. A few practical things are abundantly clear. Danica cannot return to many three year old acitivites for some time. This includes running, freedom in the yard or on a playground or even leaving her without one on one supervision at a play date or Sunday school class. She is allowed to walk around our home in a confined space. She cannot climb stairs by herself or be left alone. We are overjoyed to have the oh so confining brace off her little body and have the wheelchair resigned to the basement. Still, we feel like we are back to the holding our breath everytime she picks up her pace a little too much or curls her toes under. Our job is clear. We must keep her from falling at any cost. We did not come this far to fail her now.

It sounds silly to say we were making plans, but we were. We have enough money left to get by until June. I had planned to come home from this week's appointment, set a date for our Disney trip and then immediately begin a job search. Also the news of Lake Center opening a preschool came at the perfect time. I saw this as God working out a loving and nurturing place for Danica to be so I could even consider or bear to leave her and go back to providing financially. We cannot live on Dan's salary. I have been off work for almost six months now. YOU have made up the difference. You have fed and clothed us and given us shelter. This is perhaps the most humbling and life changing part of our entire experience. The blessing to be able to focus on Danica these past months has been the greatest gift.

The new "six more months" timeframe has us sitting back at the feet of our faithful God wondering what He would have us to do. We know we need to move. The stairs in this home are truly not safe or condusive for Danica's mobility or healing. The one bathroom and her bedroom are upstairs. We are praying hard for God to provide a place for us to move that would be on one level. As difficult as it will be to leave this nest we have made home for almost three years, I can tell you God has demolished almost all my idols and dreams of needing to have earthly roots. This is huge for me because my life was about real estate for so long and since I was a child I have dreamed of a front porch, rooms, and furniture and space and how these things create a life. Dan and I discussed as we pushed the two full beds together at RMH and all three of us slept cozied together how crazy it would be, but we could even do that, share one bedroom, ALL OF US, if we had too. As long as it was our family together. One thing we have down is doing hard things and saying grace.

We know Danica cannot go to a preschool or child care setting until she is cleared for normal activity. This means I need to remain home with her longer or we would have to find one person we trusted to care for just her (who would also be willing to take the great risk of caring for her) so I could work. On top of these concerns my own health is still a factor. I return to Cleveland Clinic Thursday for followup and next steps in healing from my surgery. My bladder continues to bother me. My fibro is a beast. We are so weary and just the thought of finding a new place to live, moving, beignning a new career or leaving our Danica at this point becomes paralyzing.

. . . I wrote this earlier this afternoon. Tonight I am home from a beautiful musical production of "Little Women" at Lake Center Christian School, where Delaney attends and my mom is elementary principal. I often "blog" posts that I don't publish, and I had saved this one in those drafts along with the others that make me a little too vunerable or tell a little too much truth about uncomfortable things people shouldn't talk to strangers about. My worst fear is to come across as ungrateful or even worse, whining. God knows my heart, but while stumbling amongst truth and feelings it's easy to be misunderstood. This is a risk of blogging--of telling our story at all.

After the intermission the students who were performing all got on stage and began quoting Scripture centered around these verses from Psalm 107, "Give thanks to the LORD, for he is good; His love endures forever. Let the redeemed of the LORD tell their story." Our stories matter. Danica's story is not finished. The firm foundation of God's love and faithfulness will be the perfect place to praise Him for whatever He does next in our lives. Shame on me if I quit talking about it now.

Tonight I'm asking you to please pray for our next chapter. Please pray we will continue to rest in the shelter of His arms and continue to trust in His wise provision as we make these decisions. If you know of a one level home coming available in the North Canton, Uniontown area please let us know. We can give 60 days notice here and our lease is through June. As far as me working and care for Danica we are very conflicted on how to move forward. Please pray for God's specific leading in these areas. Most of all don't forget to pray for Danica's continued healing and protection from harm as she tests her legs and new boundaries.

"Perfect submission, all is at rest . . . watching and waiting, looking above, filled with His goodness, lost in His love . . . This is our story, this is our song, praising my Savior all the day long!"

1 comment:

  1. Another beautiful blog. Thanks for sharing. I read your blogs more than I comment on them but felt I needed to leave you a comment to let you know how much I appreciate them. :)