Tuesday, December 28, 2010

Nothing is wasted time

"There are times when nothing holds the heart but a long, long look at Calvary. How very small anything that we are allowed to endure seems beside that cross." Amy Carmichael

I'm sitting here curled up on the couch. The sun is shining today, something I desperately needed to see after endless days of Ohio grey. Danica is doing puzzles in her wheelchair. Delaney was supposed to go on a special SEARCH field trip today, but she woke in the night with a fever, and she has been sleeping for hours this morning. Dan is at work. We are all feeling the tension of the new year upon us and wanting and needing to move to a different stage of Danica's recovery, whatever that will mean. 2010 was like a lifetime of years for us. It's tempting to focus on the loss of "real" life we will never get back. Instead, God is helping use fight through all that and remember He wastes nothing, especially not days He has written.

I look back at my journal entries from January and February of this year. At that time Danica was showing very real improvement from her first decompression and all my "resolutions" and prayers were based on our family finally getting back to normal. Oh how humbled my heart is as I approach journaling my hopes for this new year. Normally I would be buying Rubbermaid containers, putting away Christmas decorations and organizing things and calendars for the new year. Instead, I am still sitting in the stable.

Scotty Smith wrote perfectly in his "after Christmas" prayer what I am feeling,

"Heavenly Father, it’s reasonable to assume that life just on the other side of Christmas day is as varied as imaginable. For some of us, this was the “greatest” Christmas ever, in terms of healthy, caring relationships… incredible “eats”… thoughtful gifts, both given and received… and above all, fresh gratitude for the indescribable gift of your Son, Jesus.

For others of us, it was a really difficult day. Palpable tensions… dashed hopes… brokenness abounding. For still others, it was the first Christmas with an empty chair where a loved one used to sit, or a day spend all by ourselves in excruciating loneliness.

Father, my prayer today is for all of us, no matter what yesterday was like. For even our best days are in need of the gospel and none of our worse days are beyond the reach of the gospel.

When the shepherds left Jesus’ manger, they were still shepherds… they still couldn’t worship at the temple… they still couldn’t give testimony in a court of law… they still were stereotyped as thieves by many in their community.

And we shouldn’t romanticize what Joseph and Mary did the day after Jesus was born. As though, all of the sudden, a 5-star Inn in Bethlehem did open up… as though Mary’s body would’ve been spared all the normal chaos and pain of birthing and afterbirth… as though angels started showing up as round the clock wet nurses.

Father, thank you that we’re Christians, not Gnostics. We don’t have to pretend about anything. Christmas isn’t a season in which we’re supposed to be transported into a super-spirituality, rising above reality. The gospel isn’t about denial, but learning to delight in you . . . no matter what’s going on. We praise you that Jesus came into a real world where everything is broken, but he came to make all things new . . . starting with us.

Please give each of us the special and the common grace you gave shepherds. Let us hear and let us see more of Jesus, even if we remain “shepherds” the rest of our lives. Enable us to glorify and praise you, Father, for you are not a man that you would lie about anything. Everything you’ve promised us in your Word will come to pass. The gospel really is true. Jesus really is making all things new. Your grace really is sufficient. This is good news for shepherds, kings and us alike. So very Amen, we pray, in Jesus’ faithful and loving name."

These 21 months since Danica first woke with a crooked neck have taken so many things and days away from us. Not one has been a wasted offering. Sitting by the empty manger I don't have to wonder what will happen next. I know Christ headed straight through His Father's plan, through intense suffering and sacrifice and up to the cross. I know He is coming again and will wipe every tear from our eyes. We will wait. Our Hope remains.

(Danica's appointment in Cincinnati is planned for January 18th. This is three more weeks of brace and wheelchair and being homebound. She is frustrated. Please pray for her sweet spirit to continue and for much bone fusion to take place so the scan will move us forward to therapy and walking again. I continue to experience severe abdominal pain. I am not sleeping and the cycle of fibro pain has added to my fatigue and symptoms from the Lupron. I was very encouraged by my appointment last week with the specialist at Cleveland Clinic and have an MRI on January 3rd. I will then meet with the head of the department about my endometriosis and make a plan for surgery. The doctor said the growth on my bowels must be removed. Thank you for your faithfulness to pray for us, even through the busyness of the holiday season, and for the continued love and support of our family.)

Saturday, December 25, 2010

Hope is in our hearts at OneTrueMedia.com

Merry Christmas from our family. Our hearts are full of hope and joy as we celebrate God's love to us through each of you this year and most of all through the gift of His Son. PEACE.

Monday, December 20, 2010

The opposite of faith

"If faith is willing to surrender to the unknown, which I believe it is, then the opposite of faith is not cynicism or disbelief. The opposite of faith is fear." Hope Edelman

It's funny to read the post from a week ago and seem like I am emotionally and spiritually in such a polar opposite place today. That's one of the things I love about God's grace. My feelings never alter the reality of His goodness to me.

Yesterday I left my family. I was being horrible, and I know enough about how out of control I really am in this cycle, so I put myself in a major time out. I went to the movies. For some reason the movies is like the airport or the beach for me. I feel like I am completely separate from my "real" life. I feel like no one can "reach" me. I like to sit in the dark and get lost in someone else's story for a few hours. My husband is a prince. I do it so rarely, and he know when it needs to happen. He says, "GO." The mother in me lays out Delaney's shower stuff and decides what they will eat and leaves instructions on homework left to do, and then I bolt.

Think about the worst PMS or PMDD you have experienced or heard about and multiply it by one hundred. My head is spinning all the time, and I feel like an elephant is sitting on my chest. I cannot sleep even after taking an ambien and ativan. I toss and turn and sweat and my heart races. I begin to cry suddenly and for no reason. Oh, and I am the meanest I have ever been in my life. I had my second Lupron shot on Thursday morning and by Friday afternoon the black cloud had settled over me. Saturday the physical symptoms began again. I felt this way last month, but just when I thought I couldn't take it everything evened out. I never considered I would have to go through this every month for each shot.

I have my appointment at the Cleveland Clinic on Wednesday morning. This is not my first time at the rodeo. I know how it will go. She will review my history and records and pop in the disc and look at the pictures from hysterectomy, the ones of the endo left on my other organs. She will listen to my account of how the pain is even worse since my surgery. She'll offer to go back in, another surgery, maybe it's adhesions, maybe there are new growths we could get with a laser. She'll tell me there are new things they are trying now to try to coat organs and keep new scar tissue from forming. And, I can see a colorectal surgeon. We could resection my bowel and cut out that big ugly spot of endo in the middle.

Here's the thing. I'm not afraid to do any of that, but I have a gut feeling it won't help. I have been overwhelmed with the thought of trying something different. I don't know what exactly. Like my search for help for Danica, my instincts told me there was something deeper wrong and sent me on what some felt was a "crazy" pursuit for answers. Although the jury is still out to some extent on the results of Danica's surgery I know in my heart she is so much better and safer than she was before. I know I did the right thing to not wait and watch. In this same way I believe at 35 years old I cannot give in to this cycle of surgery and chronic debilitating pain. I have to believe there is other help somewhere.

What I AM afraid of is Danica getting out of this brace and walking and every prayer offered for her being answered, and I am left in bed curled up in a ball. I can't miss any more life. The past week Danica's desire to get out of this wheelchair has become stronger than ever. Tomorrow marks twelve weeks since her surgery, three months. It's been twenty one months since she woke up from her nap with a crooked neck. It's been over a year since her first decompression. She has grown from a baby to a little girl, and our entire lives have been about what we could not do and what we had to do. Yesterday she said, "I NEED to jump." Last night she said, "I have to go to preschool now and read." This morning, She asked, "But WHY can't I walk? What's the reason?" These questions come fast and furious now. She feels healed. She is in the least amount of pain she has felt in years. She is strong and ready to go. If Dr. Crawford releases her to walk at our appointment in Cincinnati on January 18th, I want to be there for every second. I have a limited amount of money until I have to go back to work. I have a million things I want Danica to finally get to experience for the first time or for the first time without pain and fear. I NEED to be well.

I'm asking you to pray specifically that I will not be afraid. I need the courage to explore outside traditional medicine and consider there may be other answers for my pain and the growths inside me. If necessary, I need to be brave enough to let them go back inside and trust more days in bed are somehow part of the story God is writing for me. My family needs grace to love me through these months of Lupron. I am truly a crazy lady. The way Dan and Delaney have embraced the nuts part of this and are even able to laugh with me about how cookoo I am is amazing to me.

We will keep choosing life. Our hope remains.

Tuesday, December 14, 2010

A tiny shoot

Today was our second snow day in a row. I have kept my eyes and my heart open, and I have been humbled beyond words at the peace and love here in our home. For the first time in years I did not have to work on a snow day. Because the company I worked for was in Virginia even if it was bad weather here and Delaney had off they would be usually be open. I had to work while trying to keep she and Danica occupied, and I always felt a huge measure of guilt at how neglected they were, how little fun they were having and how distracted my work made me. I remember those days as some of the most frantic and stressful of my telecommuting career. I didn't take a minute of the past two days for granted. We snuggled in bed, played games, watched movies, collaged, sang songs, read books, and we really were happy.

The continued pain I am having, Danica's restrictions and slow healing, our financial insecurity and all the wondering about what the new year will hold for us has been buried beneath the soft falling snow. I have prayed for this peace over and over. I thought it might come in a crazy miraculous way like water into wine. I imagined something sudden we could shout from the rooftops. Instead it has grown like a baby in the womb. We have trusted the seed was there before we could even feel flutterings. We have the stretchmarks to prove it. We are great with child. Our hope and expectation are sure and new life is coming.

Last night I was up in our room, and I heard Dan downstairs doing puzzles with Danica, and he was playing his favorite playlist. Do you know what songs he has at the top of that list? Chris Tomlin's "In Christ alone" and "This is our God" and Andrew Peterson's "I am a family man" to name a few. He asked me to read the Bible with him before bed on Monday night, just he and I. He has been leading our family Advent readings when he is home which is every night now that he is on all days. I have always loved my husband, but this change in him over the past months is an answer to so many prayers on my knees. It has been slow and there have been lulls, but it is a shoot straight from the stump of Grace.

Henri Nouwen writes, "A shoot shall sprout from the stump of Jesse, and from his roots a bud shall blossom. The spirit of the LORD shall rest upon him . . ." (Isa.11:1-2).

Our salvation comes from something small, tender, and vulnerable, something hardly noticeable. God, who is the Creator of the Universe, comes to us in smallness, weakness, and hiddenness.

I find this a hopeful message. Somehow, I keep expecting loud and impressive events to convince me and others of God's saving power; but over and over again I am reminded that spectacles, power plays, and big events are the ways of the world. Our temptation is to be distracted by them and made blind to the "shoot that shall sprout from the stump."

When I have no eyes for the small signs of God's presence - the smile of a baby, the carefree play of children, the words of encouragement and gestures of love offered by friends - I will always remain tempted to despair.

The small child of Bethlehem, the unknown young man of Nazareth, the rejected preacher, the naked man on the cross, he asks for my full attention. The work of our salvation takes place in the midst of a world that continues to shout, scream, and overwhelm us with its claims and promises. But the promise is hidden in the shoot that sprouts from the stump, a shoot that hardly anyone notices."

I have been playing this song on repeat today. QUIET. SOFT. SLOW. I noticed.

Sunday, December 12, 2010

Remembering how to walk

HideandSeek from DJ Snyder on Vimeo.

Dan has been organizing pictures and videos today. This one is before Danica's symptoms got a lot worse earlier this year. It's before we had to get rid of the sharp edged coffee table because she was falling so often. It's before the progression of neck braces. Watching Danica run makes me cry. I barely remember what it was like to hug her fleshy little body and rub her back at night. I hardly remember what it was like to have her show up in the middle of the night beside my bed and crawl in to snuggle. I forget what she looked like twirling and dancing around, sliding down our stairs on her bottom and doing donkey kicks. I forget what it was like to give her a real bath and wash her hair and finally make her get out because she was too pruney. I am overwhelmed by how brave and accepting this little girl has been these last 11 weeks with her complete immobility. I still see the wheelchair in our house and do a double take. I feel sorry for her and for myself and for our family, but Danica has only ever decided to sweetly live in today. I hope we remember how to walk when this is all over, but if we have to learn how to do all these things again, step by step, we will. Our hope remains!

Thursday, December 9, 2010

A large work

"This is a large work I've called you into, but don't be overwhelmed by it. It's best to start small. Give a cool cup of water to someone who is thirsty, for instance. The smallest act of giving or receiving makes you a true apprentice. You won't lose out on a thing." Matthew 10:42 MSG

It's a beautiful part of our story I haven't been able to tell, because it began with a drop, a cup of water so to speak, and it has rippled over and over these past months into an ocean my heart cannot contain. How do you really talk about love that comes not just from one person or ten but from a community bigger than you ever thought could touch your little world. The giving and the receiving has made me a student of grace, expecting undeserved blessings with my heart and hands lifted to heaven.

The Canton Chapter of the Foundation for Community Betterment adopted our family this year and Danica became one of the recipients for their annual fundraiser, Rocktoberfest, an event held at the end of September. Recently the check came in the mail. It was exceeding, abundantly more than we could have hoped for. It will be used to help pay our bills over the next months while Danica is recovering and in therapy and I am not working so I can care for her. I left it on the counter for several days before depositing in her account. Every time I saw it my heart swelled with profound gratitude.

I wish you could have all been there for Rocktoberfest. I was four weeks post-op and really not feeling well. It was hard to even make myself get ready to go to the event. I put on a beautiful pair of zebra heels left over from my former life, and Dan and I drove out to Rice's tree farm. As soon as we saw the sun setting behind the fields and the beautiful barn and all the loving faces I felt changed. The above picture says it all. Someone caught me smiling, even laughing, spontaneously. I can't remember the last time I was photographed without the strain on my face, the furrow in my brow and the exhausted look in my eyes. I can't explain how valuable a minute of relief from the seriousness of our life is, but when I see this picture I understand it.

Our journey is paved with love. Each stone, big or small, makes the path we find ourselves walking smoother and more bearable. The gift from The Foundation for Community Betterment goes so much further than just the amazing people on the board and the volunteers at the events. Each business who donated items for the raffle, each one of you who bought tickets to attend, each one of you who gave $5 or $500 as you were able, are the life blood of the giving and receiving that changes lives like ours. We humbly thank you.

The 2011 kickoff meeting for our local chapter is Tuesday night, January 11th, at Main Street Grille in North Canton. I am so excited to join Betterment this year and be part of the large work that begins with you and me.

(If you would like to become involved with this amazing organization click through the link to contact them and "like" them on facebook to keep up to date on ways you can volunteer and help or join us at the meeting on January 11th.)

Sunday, December 5, 2010

Too much to ask

it seemed too much to ask
of one small virgin
that she should stake shame
against the will of God.
all she had to hold to
were those soft, inward
and the remembered sting
of a brief junction--spirit
with flesh.
who would think it
more than a dream wish?
an implausible, laughable

and it seems much
too much to ask me
to be part of the
different thing--
God's shocking, unorthodox,
unheard of Thing
to further heaven's hopes
and summon God's glory.

(More Luci Shaw, because I can't stop reading her this time of year)

Today I was barely able to function because of the pain in my abdomen. I was short tempered with my family. I went through motions of preparing meals and cleaning up, but I cried big tears of this is too much to ask. I tried to rest, but I find it almost impossible to relax for a moment when the stabbing is so bad. I feel guilty for being in bed. I resist taking any pain killers because they really don't work, and I am still so wounded by my former need for IV narcotics when I was pregnant and my kidney was blocked. The opinions everyone had about my pain and treatment during that time was horrific. I can tell you my body's response to pain and to pain medication is not normal. I know there is still something very wrong inside my body. Besides the endometriosis which we know is still there and growing I suspect I now have some very bad adhesions from my newest surgery. There are no good answers for these issues.

While I laid here in bed begging God for some kind of relief I realized that I mostly pray for deliverance for His glory rather than grace to submit and endure for His glory. None of this makes any sense. Has my faith grown at all? Is God asking too much of Danica? Is He asking too much of our family? Is His continued allowance of suffering in my own life unreasonable? Madeleine L'Engle wrote, "We are all asked to do more than we can do. Every hero and heroine of the Bible does more than he would of thought it possible to do, from Gideon to Esther to Mary. It is only after we have been enabled to say, "Be it unto me according to Your Word," that we can accept the paradoxes of Christianity. Christ comes to live with us, bringing an incredible promise of God's love, but never are we promised there will be no pain, no suffering, no death, but rather that these griefs are the very road to eternal life. In Advent we prepare for the coming of all Love, that Love will redeem all brokenness, wrongness, hardness of heart which have afflicted us.

The prayer of my heart tonight is a simple one following the heart of Mary, "Be it unto me according to Your Word."

Thursday, December 2, 2010

Love in a bullseye

Sweet Danica has been such a trooper about being on "house arrest" these past two months. One of her greatest longings besides dreaming about taking a bath and going to Disney World has been to go to Target. Because Danica has been suffering since she was 18 months old our family has never really run around that much. The one outing each week that Danica looked forward to and expected was a trip to Target. She was allowed to pick out one thing from the dollar bin and would hold on to it in the cart while I did my shopping. Of all the things she hopes to do again once she can remove the brace and get out of her wheelchair going shopping at Target is definitely at the top of her list.

During this journey we have been blessed to meet another local family who's four year old daughter, Brooke, has Chiari too. She had her first decompression surgery this year. It has been a wonderful connection for the girls to meet someone else their own age with the same pain, the same scars and the same "C" word attached to their lives. Today sweet Brooke, her mom, Melinda, and her two brother's planned a very special surprise for Danica. They came to our house dressed in red and khaki and created a mini Target experience for her. They gave her a pretend credit card, and she went shopping. Aidan pretended he was the pharmacist, and Danica picked up a big pack of M&Ms as her prescription. Brooke set up carefully chosen dollar bin treats including a new puzzle and silly putty. (Danica is obsessed with puzzles and can do 100+ piece ones now.) Brooke then checked her out and bagged her goodies. Aidan switched hats and worked the snack counter. They brought Danica a hot dog, apple dippers and a slushie. Yum!

So many people tell me we should try to publish our story someday. I know from the outside looking in it is remarkable all we have been through. The thread that runs through it all is the love we have received. I believe this is the real story. The gift today from the Crown family was amazing. Danica was thrilled. It made her so happy to be reminded of something she misses so much. I loved watching her face light up as she proudly showed Brooke her room, and they played a game together. After they left Danica put together her new puzzle and kept chatting about Brooke's visit.

Tonight I'm praying for both these little girls. I'm praying for their complete healing and for God to take their courage and all they have been through and multiply the love they've experienced a million times into this world. Won't you pray for them too?