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?

Sunday, November 28, 2010

Waiting, expecting, hoping

Last night we sat around the table as a family and began our Advent celebration. The first week of our readings focuses on a word we have talked about plenty this year, HOPE. How could we have made it through these days without a belief there is something better coming?


The liturgy of this season is not a formality for us. We are in every way living the spiritual journey as individuals and as a family. Each one of us shared our own hopes and then we sang several carols. I used to wonder about families who were really committed to spiritual practice in their homes. I don't mean just saying grace before meals or you might choke kind of stuff, but true "going through the motions" that creates something so much more. I grew up in a very religious home but without the rituals of Advent and Lent, without a nativity and a cross around my neck. I am becoming convinced these symbols and traditions can speak sometimes the most clearly to our children's young hearts. When they see Him in the manger it becomes more than just a story. He is alive and asking them to be born too.

A week in to our time back at home, and I have railed against the demand to keep sitting here. I want Danica to be walking and running and playing. I want our family to go see lights and visit Santa and attend Delaney's Christmas program and family gatherings together. I want to feel well enough to do all the special little things my family has come to expect me to do this time of year. Instead, God is telling me to do the opposite of all this season has become and reclaim what it is really meant to be.


After I tucked the girls in I read more Luci Shaw from Accompanied By Angels,

" . . . In our nights,
our complicated modern dreams
rarely flower into visions. No contemporary
Gabriel dumbfounds our worship,
or burning visits our bedrooms.
No signpost satellite hauls us, earthbound
but star struck, half round the world
with hope. Are our sensibilities too blunt
to be assaulted with spatial power-plays
and far out proclimations of peace
Sterile, skeptics, yet we may be broken
to his slow, silent, birth, his beginning
new in us. His big-ness may still burst
our self containment to tell us,
without angels' mouths, FEAR NOT.

God knows we need to hear it, now,
when he may shatter, with his most shocking
coming, this proud, cracked place,
and more if, for longer waiting,
he does not."

I wrote this verse, Isaiah 43:19, in the margin next to the poem, "See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland." Fear not. He is making a way. He is doing a new thing. We are waiting. We are expecting. Our hope remains.

Thursday, November 25, 2010

In the valley

I woke up this morning in the most pain I have felt to date since my surgery and beginning the Lupron. Every single one of my bones and muscles is screaming. My head is buzzing with the strangest kind of headache and my gut and back hurt so bad from the endometriosis. I an feeling and acting so crazy it scares me. Dan had to go to work, and I curled up in the fetal position and cried my eyes out while he took his shower. Just the thought of having to go through the motions today with Delaney and Danica was too much. I needed to think "I can't" for just a minute.

Of course, I did. I dried my tears and have been up and down the stairs ten times since, sometimes almost crawling, lifted Danica, played Littlest Pet Shops, made lunch, cleaned up lunch, worked on a puzzle . . . Danica fell asleep in her wheelchair and here I am crying again. I can hear the doors opening and shutting around the neighborhood as people arrive to their Thanksgiving festivities. It hurts, and I can't put my finger on it except that I feel incredible loss today. When the rest of the world says grace and jumps on the gratitude bandwagon I secretly slip off into the valley.

I have loved Arthur Bennet's collection of Puritan prayers, The Valley of Vision, since I was a young girl. I have an old Banner of Truth copy that was my dad's, and I treasure it. Recently my dear friend, Angie, sent me a CD of music including the song with the above title sung by Sovereign Grace. I have played it over and over. I have prayed it over and over.

In a season full of expectations to live in the bright lights of the tinsel and the trees and to keep up with the dizzying pace of black Friday and cyber Monday. In a time when we are told to keep ourselves surrounded with people and parties and keep ourselves numb with abundance of food and drink. I am finding the stars that lead us to Bethlehem and our Savior may only be clearly seen in this kind of dark. So I will sit here in the depths. I won't try to fake my way to a mountaintop somewhere. I am learning to find His grace in the valley, His life in my death, His joy in my sorrow, His wealth in my need, that He's here with every breath . . . in this valley.

Monday, November 22, 2010

I gave this day to God

I was unpacking a few Christmas decorations to make our home cheerier for our homecoming yesterday, and I found my Advent books in one of the Rubbermaid totes. I have been grabbing Luci Shaw's Accompanied by Angels, Poems of the Incarnation all day and reading through her beautiful words. The poem with the above title struck a specific cord in my heart.

I gave this day to God when I got up, and look,
look what it birthed! There up the hill was

the apple tree, bronze leaves, its fallen apples
spilling richly down the slope, the way God spilled

his seed into Mary, into us. In her the holy promise
came to rest in generous soil after a long

fall. How often it ends in gravel, or dry dust.
Blackberry patches thorny with distraction. Oh,

I pray my soul will welcome always that small
seed. That I will hail it when it enters me.

I don't mind being grit, soil, dirt, mud-brown,
laced with the rot of old leaves, if only the seed

can find me, find a home and bear a fruit
sweet, flushed, full-fleshed—a glory apple.

We were all so very happy to wake up in our own home today. Danica slept in her own bed all night, and Dan and I slept in our bed together. Delaney was thrilled to be cuddled back with all her stuffed animals in her own beautiful room. After an early morning Dan and Delaney were off to work and school, and while Danica began her morning in her wheelchair playing I sat in my chair sipping coffee and seeking food and drink for my parched soul. I dumped the compost of literally months of pain and exhaustion. They mixed in with truth and peace and rest found in His word. I could feel my heart's readiness for something new to grow.

I'm posting a few pictures of our humble home. Some of them are just things, but when they are touched by LIFE they become much more than that. We are so very grateful and full of expectation as we enter this season of watching and waiting for our Savior.
Danica in her bedroom
Danica's little tree
Delaney in her usual place, at the table creating something
Delaney's sunny room
Our first meal at home, chicken enchiladas, mexican rice and corn cake
Our gratitude board in the dining room
My little corner of the world, where I read, write, pray and sip
My other favorite corner, Willow Trees that represent milestones in our twelve years together and my new white cable knit blanket from my dear friend, Angie
Dan and I's bed, notice his gorgeous watercolor pencil drawing of Venice over our bed. Love it!
Playing "Ants in Your Pants" last night

WORDS, I have them all over our home. Keep your eyes open. Grab the glittering moments and give your days to God. He is growing something!

Sunday, November 21, 2010

Fusion update and HOME

As I write this our Danica Jean is sleeping alone in her little room in her own bed. This is huge. We bought a large side rail with mesh to put up to try to give us all some normalcy when it come to sleeping. We found out at Danica's appointments in Cincinnati on Friday she is healing very well. Above you can see the picture of her incision we took when they removed the brace long enough to change the pad. It is beautiful. I have never seen such a long and smooth cut before. The fusion is happening. Dr. Crawford showed us Friday's scans compared to the last trip. There is definitely some thickening of the band of muscle and formation of bone. We still have a long way to go. He will see us next on January 18th, more than eight weeks from now.

We headed on our trip in very good spirits. I don't know why I thought we were going to see something completely changed in the xrays. Danica is wanting to walk and take a bath and go to Target so badly. I guess I bought into her enthusiasm a little too much. She was even practicing before we left asking Dr. Crawford if she could begin walking. The actual discussion was very clear. Danica's center of gravity with the cumbersome brace makes it impossible for her to be mobile and safe. We have to wait this out and keep praying for healing. The appointment in January very well could put us further out into the early spring before we can even consider therapy much less a return to normal walking and running and playing. It just needs more time. The brace and the wheelchair are staying put for now.

There are moments I still think we are quite crazy to have moved home to try to do this on our own knowing the road ahead of us is longer than the one we just traveled. I am definitely suffering greater physical and emotional side effects from my shots. The distance to Delaney's school makes our support network dwindle and the back and forth to school much more challenging. Dan is now working in Green very near her school so it seems like we are are "stranded" over here so far from everyone. The holidays necessarily take people out and about for all kinds of gatherings and traditions, and we will sit here missing the tree lightings and the concerts and Santa. When I get emotional about what I think we are missing I don't need to hear anymore about how this is a season (yes, it's been a VERY long season) and to remember to count my blessings and to look on the bright side of things. I live on the sunny side most of the time. But somedays the loss feels so great. We have missed these traditions for years now, and it hurts.

This is why we had to come home. We need the little routines that assure us life is moving along. We need our own traditions. We need to be filled with unabandoned joy and sing and dance (Danica had me lift her and dance my heart out holding her just the other day. It's one of our favorite family time acitivities--to pump up the playlist and dance with one another.) We need to snuggle under blankets and read stories and watch old classics. We need to decorate sugar cookies and drink hot cocoa. We need to dream out loud about how we want our family to grow and who we will be. We desperately need to not just survive these years but thrive because life is too beautiful and God is too good not to.

Watching my girls faces light up as they saw their own rooms for the first time in so many weeks, eating dinner together--dinner I prepared, playing ants in the pants and doing art at our table . . . all these things took my breath away today. The love and care of my husband for me the past days is a huge measure of grace and has blessed me more than I can say. He undersands how much this means to me. He knows I need my space to really be okay and even though this may make things ultimately harder on him he has been so supportive. Home is exactly where we need to be right now.

Tony Woodlief writes in his book Somewhere More Holy, " . . . This is the story of how we reclaim the things that are lost. It's also a story about how a home can be become sacred, and how in the process it can sanctify us as well. I can tell you these things because I have been in dark places--which is the only way any of us learns to love the light. . . Home is more than a place where we eat and sleep; it is where we learn grace, where we glimpse heaven. It is where we find or lose God, or perhaps where He finds us if we will only be still long enough to listen for Him."

Our house is perfectly still tonight, and we are tucked in with fresh lessons of grace and glimpses of heaven as we settle in our own sheet thread count, say our prayers and LISTEN. We are home. (Tomorrow I will post pictures from our fun homecoming day.)

Tuesday, November 16, 2010


". . . Our work is to know God. Once you know Him, once you really understand how good and faithful and longsuffering and loving He is, you can’t help but worship Him. You can’t help but surrender. And surrender opens the door for healing." Shannon Woodward

Someone brought Danica the game "Operation" today. It's a fancy new version that doesn't just buzz when you get too close to the edge with the tweezers, but it makes a noise that corresponds with each item. When Delaney got home from school we took it out to play and the tiny little frog and cellphone were missing already. I couldn't take it. I ripped the cushions off the couches, got on my hands and knees, looked through all the bags in our room, checked the garbage . . . Without those pieces the game was completely ruined for me. The crazy other woman that resides in my body and shows her face without warning came out in full force. Guess what? I found a little drawer built in to this oh so cool game where you can store all the little pieces and there were the frog and the cellphone resting comfortably.

Especially when the rest of my life is so seemingly unsure I tend to hold on to the things I think I can control even tighter. I tweeze my eyebrows too much and check the bank balance twice a day and organize Danica's little collection of "things to do" stacked up in my parent's bedroom because there is truly little else I can do right now. I can't plan meals or grocery shop or Christmas shop or get my hair cut or colored. (If you see me don't be shocked at how grey I am and how really bad my hair looks.) I can't pull all the summer clothes out of the drawers the kids have outgrown and figure out what they need for fall and winter (scratch that--just winter now.) I have been watching a massive amount of Nick Jr. and remarkably have learned to tune out "The Fresh Beat Band" and "Yo Gabba Gabba" and pray. ALOT.

I like to pick single words and say them like a mantra during periods of my life. I have a collection of words that have become like friends. STRENGTH. HEALING. LOVE. DAYENU. TRUTH. COURAGE. PEACE. REST. When they stand alone and I pray them out loud they have a simplicity. I have been reading many books on the subjects of suffering and prayer. (Maybe I'll do a post soon with links to them all and quick reviews.) I have been writing down my own prayers for years, and I have gone from trying to get the words just right to a completely transparent on your knees in desperation kind of praying. No matter what I always seem to come back to a prayer of surrender from what is commonly know as The Lord's Prayer, "Thy will be done, on earth as it is in heaven.” My new word is "SURRENDER."

So many times we associate surrender with giving up in a bad way or maybe giving in on something we should have fought harder for. This spring I read through a book of Lenten devotionals by Emilie Griffin titled Small Surrenders. It began my thoughts about what I was being called to "give up" to make more space in my mind and heart and life for God. This is really where God started with me before I became pregnant with Danica. I like to think He's been pretty patient with me as He has moved through our circumstances these years to pry just about everything I thought mattered to me from my hands. To say I have been changed or that I have learned something would be an understatement. Yes, there are still moments of fear and doubt, but I have never experienced the peace of surrender like I have the past few days.

Since I found out I had to have a hysterectomy right before Danica's surgery I have been praying about my job. For almost three years God gave me a job where I could work from home and still always be there for my girls. It was hard but such a blessing. So many times I pleaded with God to either provide to let me just be a wife and mother for awhile or give me back an exciting job I loved with people and ideas and nice shoes. I wrote this post on my old blog on August 19th, 2009 titled, Small Acts. I have been as faithful as I could with God's help. He has made the way very clear that the season of laptop and lists needs to end for now. I resigned my position yesterday.

The faithfulness of God brought me to a place of complete surrender. I have given Danica and her healing to Him. I have resigned myself to the fact I may never personally feel really healthy again. I understand God is calling me to even greater sacrifice by not being the one to rescue our family from the bills and the financial uncertainty we face. I have commited myself to reclaiming my marriage and my relationship with Delaney no matter how much work it takes. I am eagerly looking forward to all God has planned for our future with a peace that passes understanding. In every step of this journey He has done exceeding, abundantly WAY ABOVE all we could ask or think. I can rest in this. I can exhale. I can let go and give in to the amazing love and grace of God.

(Today marks six weeks since Danica's surgery. We are half way to the magic "fusion" date. She is doing really well. She continues to have sporadic fits and has trouble sleeping but her spirits are good. Thank you for all your faithfulness to send little things for her to do and notes and cards. Every day is so long and we have appreciated every single act of love. I got my first Lupron shot this morning. I feel nauseous, have a horrible headache and my heart keeps racing. After the first week the symptoms of my endometriosis fighting back should subside, and I am hopeful this will slow the growth on my organs. (The side effect I'm most concerned about is the growth of facial hair. I'm terrified a chin hair will sprout and someone won't tell me so I can tweeze.) Friday we head to Cincinnati for a full day of appointments. We will stay the night and return on Saturday. If all goes well we are planning a celebratory home going on Sunday. I can't begin to explain to you the hope this has created in each one of our hearts. I'm sure there will some bumps in the transition, but you can count on the fact we will be loving one another and grabbing every sweet moment as we settle back into our nest. Our hope remains!)

Friday, November 12, 2010

Bidden or unbidden

Thanksgiving is possible not because everything goes perfectly but because God is present. The Spirit of God is within us—nearer to us than our own breath. It is a discipline to choose to stitch our days together with the thread of gratitude. But the decision to do so is guaranteed to stitch us closer to God. Attend to the truth that ‘bidden or unbidden, God is present’.” Adele Calhoun

I've kind've been hiding out this week. I've been in so much pain and after weeks with no relief it has worn my body and my spirit down. It's easier to let myself stay in a funk these days. There is no real routine and my spiritual disciplines have no quiet alone time or any real light to grow. Gratitude has been choking.

I woke up this morning and looked over at my little Danica askew on this big bed with pillows all around her, and I was overwhelmed with my love for her. She hasn't had a bath in over five weeks. The pads on her brace are all yucky. We have to cut her shirts in the back to get them on and off under her brace and by morning the shirts have usually slipped out and her little shoulders are bare. She opened her eyes and smiled at me. Another day is a precious gift. Bidden or unbidden it sits here waiting to be unwrapped, full of graces, big and small.

We got all cleaned up, which is quite a process when I'm alone with Danica. My mom ran home from school to load up the wheelchair and take us on a quick trip to LCCS to visit Delaney and her class and the other children who have been praying so hard for us. Yes, we broke a rule, but it's less than a mile, and I knew the "risk" of driving in the car was worth it when I saw the excitement in Danica sweet face to be going anywhere. It is a rare gem of a day in November, the warm sun and soft breeze are lingering like they know they have to say "Goodbye" but can't make themselves go. When we left school my mom dropped me to get our JEEP back from the shop while she and Danica went to get happy meals. I didn't realize how much Danica missed just the simple treat of the drive-thru. We sat on the porch with our faces turned toward the light and heat and ate our meals, literally grabbing moments of pure happiness being together and feeling the hope of normal days coming soon. We sang one of Danica's favorite Bob Marley songs, "Every little thing's gonna' be alright", and believed it.

A week from today we will be in Cincinnati for appointments with Dr. Crone, Dr. Crawford, another x-ray and an optho consult. If all goes well at this appointment we are making plans to move home as a family on Sunday, the 21st. Nothing has changed about our home or the challenges of having a child in a wheelchair living there. The need to be in our own space and be together has begun to outweigh the support of my family and convenience of living here in my parent's accessible home. We need to try and make a go of it. As far as we know Danica will remain in the brace and the wheelchair until at least 12 weeks. That date is December 28th. Then therapy would begin.

We would not be able to move home if not for the generous offer from a dear man we do not really even know to help us pay for someone to come and help me during the day with Danica. In many ways this will provide a relief I have not even had while living here. Danica is needing another face to play with her, color with her, pretend with her, and I am desperately needing to get a shower and make phone calls and go through a mound of paperwork that has been untouched since Danica's surgery. I have never had someone come into my home to watch my children. I'm sure it will feel strange at first to let go and accept help. We are so grateful for this specific gift, a stitch in this tapestry God is weaving.

A mother from Delaney's class also met with me and asked for detailed ways to help us. Immediately she rallied the moms and Delaney has had many offers for after school play dates and help with homework, etc. This is a HUGE blessing to us. She will continue to stay with my mom after school most days and go to people's homes until Dan could pick her up. More beautiful thread creating a pattern of love in our lives.

Some people from our church came last Saturday to rake our yard of leaves. In the month we've been gone the two huge trees in the fromt of our home dropped almost every leaf, and we have not had the time or energy to deal with them. My dear friend offered to have her housekeeper come to clean our home next week since it's been sitting there so long, and I am not well. I would have never asked someone to clean my home and her thoughtfulness, knowing how important this would be to both Dan and I before bringing our family back to settle in, is another stitch of grace. Each act of giving, each meal someone brings, each offering of prayer has become a warm and comforting fabric covering us in this storm.

Today, I am looking at the details and overwhelmed again by God's perfect plan. He designed this work of art. The thread bare scraps and the finest pieces of silk come together and tell the story. Bidden or unbidden He is here, and He is always good. Won't you praise Him with us today?

Sunday, November 7, 2010

When we wait too long

Here I sit again in the dark with Danica tossing and turning in bed beside me and needling me in my side and arm with her little toes trying to find a place she can rest. It's almost 11 pm, and I am tired to my core. Once again I feel like I've waited too long to write. If I had posted this morning I could have talked about how the sun was shining, and I got to be part of the Body and worship. Of course I cried right there in front of everyone. Big tears streaming down my cheeks during "Oh the deep, deep love of Jesus", and I thought afterwards, "Why do so few people cry here? Surely I am not the only one completely overwhelmed by life and the amazing love of Jesus carrying us through."

I could have posted after having lunch at Panera with Delaney. She is funny, witty and mature but still so overwhelmingly eight sometimes. We sat and talked like we haven't done for weeks. It was good. I miss her desperately even though she is sleeping just across the living room. We are losing nights of Bible stories and reading and long snuggles. She has adapted in true Delaney grace. She still sings in the shower and creates art EVERY day. I know she will be better than okay no matter how all this goes, because she is just as brave and strong as her little sister but in different ways. She has sacrificed willingly her horseback riding lessons and her beloved summer vacation at the beach and many days and nights without her parents and sister with barely a complaint. She still believes she can be an artist AND a marine biologist, and we are getting a dog as soon as Danica gets better. This is something we have been promising since before Danica's last surgery. Her best line from today was when we saw a golden retriever (the kind of dog she has been longing for since our dear black lab Jack left us years ago)on our way to church, "Every time I see a golden I think I might faint I need one to love that bad."

I could have posted yesterday after I got home from an amazing birthday surprise party given by my book club friends. They took me to Glenmoor for a massage and lunch and gorgeous cake. I will never forget it. I cried then too. I was shy about being celebrated. I was overwhelmed by being touched. I hear it's healing. I've had too little of it. Danica and I used to snuggle all the time, and now we can barely hug with the big metal brace encompassing her body. I admit I feel resentment and pain because when we are touching sitting here hour after hour in this bed she is often hurting me. She kicks me in the abdomen when I try to change her and is always trying to stick a foot in my leg or back or side at night. It hurts me to hold my own baby girl, and I hate it.

I could have posted on my actual birthday. I received so many loving thoughts including a beautiful blog post Knowing & Being Known from my dearest friend, Angie. Dan and I went to sleep at our own house. Because of my continuing horrible pain we did not go to dinner but got take-out and crawled in bed and watched a movie We were not able to really connect in conversation or even to just be with one another. I felt so sad. He felt so sad. Saturday morning Dan was in such a visible depression. My sadness turned to anger. I wanted him to suck it up. I wanted him to be happy for me finally getting out with people. I wanted HIM to celebrate me. I wanted him to fake it so I could feel better. Weekends are the hardest for him. He wants to be home with his family. When he is here there is not even a chair to really claim as his own. I have never seen him relax here even for a minute. It's so painful to watch and to be around him here. I understand, but I somehow expect that we will all keep making it through and trying to smile as much as we can and cry as little as we can and numb ourselves as long as we can. It's just not how Dan deals with difficult things. If he can't be "doing" something useful and keep moving he is paralyzed and needs to leave. I feel abandoned and hurt, but I get it. I do.

Here I am. I've waited too long. I've waited too long to give God the praise for each moment of love and joy and peace He gave these past days. I've waited too long to ask for forgiveness for my worry and anger and self pity and all the times I let it come out in words and attitudes towards the people I love the most. I've waited too long to remember how incredibly blessed I am to have so much support from so many people who genuinely want to help and see our family through this painful chapter of our life. I've waited too long to sit back at the foot of the cross and remember the deep, deep love of Jesus. Looking full in His face puts everything else in perspective. Our hope remains.

Thursday, November 4, 2010

Hanging out with Job

" . . . In all of this Job did not sin by blaming God." Job 1:22

Somehow in all the times I've read the book of Job I missed the last line of this verse. I think because we always focus on the first part, "The Lord gave me everything I had, and the Lord has taken it away. Praise the name of the Lord . . ." I've talked about it before, but I know my theology has made a mess of my faith at times. I was raised immersed in the sovereignty of God, a beautiful truth I hold dear. Floating on the top of this grace was a message of sin somehow being connected to suffering. Not just because it originated there in Adam but always inferring there must be some kind of cause and effect even in the Christian's life between unrooted sin and the need for chastisement through physical pain and difficult life circumstances. I have often not been able to get my head through some of the half truths and the spirit they were taught in to breath real air in my walk with God.

I spent my late teenage years and early twenties running as far away from God as I could. My family had gone through a painful church split and everything I thought I believed about people who loved God was in question. I openly and blatantly rebelled in drunkeness, promiscuity and even heavy drug use. Through time God gently called me back to Himself, and my wounds from those decisions began to heal over. As soon as something painful would happen the "bad theology" would start to pick open the sore spots and fester. I would immediately think I was still being punished for the hideous things I did. I did not fully understand my sins were completely and totally covered. There was no more condemnation. I was redeemed.

Tonight I am in so much physical pain I can barely function. For over ten years I have suffered from severe endometriosis. Around the time I had my first laparoscopy, in 2001, was also diagnosed with fibromyalgia. The combination of these two very painful conditions over the last decade has tested my faith perhaps more than any other thing. I was laying here crying with this stabbing pain in my belly, and I thought about my friend, Job. God made me pick up his story and read it again. There was no sin being punished in his life as Job's friends suggested. There was no big answer to the "why" questions when God took everything away from Him and struck him down physically. God was in control, but He was not to blame. Only someone who knows God in an intimate way can really wrap their head around this and trust in it. At the end of Job he could say, "I had heard about you before but now I have seen you with my own eyes." Job 42:5

I want to see. I may never have an answer for Danica's Chiari. I may never be healed from my endo and fibro and may suffer physical pain the rest of my life. Tonight I am burdened for a friend who has had another failed fertility treatment and whose barren womb echoes in her heart and life every second of every day. I grieve for my friend who has suffered cancer three times and whose own body is wracked with the effects of chemo and so many surgeries and so much pain. I pray for a friend who lost her baby a year ago tomorrow and is still not pregnant again. I am frantic over a Chiari friend's son, Tristan, who was in the hospital in Cincinnati the same time as Danica and had to have another emergency surgery tonight because his shunt failed. Where is the hope in all this suffering?

St. Augustine wrote, "The whole point of this life is the healing of the heart's eye through which God is seen." He is the hope. I am healing in the places that matter most. "That is why we never give up. Though our bodies are dying, our spirits are being renewed everyday." II Corinthians 4:16

(Praise God with me tonight as my Lupron shots were approved! Praying the first one will be shipped quickly to Dr. Romero, and I can begin treatment sometime next week. Danica had a good day. We made it through the drywall glue smell and constant hammering and screwing from the basement work. This is the second day we have her down to only taking her muscle relaxer and pain medicine at night. I peeked into her brace today, and her incision looks really good. We have much to be thankful for!)

Wednesday, November 3, 2010

When kindness is the miracle

". . . Belief isn't always easy.
But this much I have learned--
if not enough else--
to live with my eyes open.

I know what everyone wants
is a miracle.
This wasn't a miracle.
Unless, of course, kindness--
as now and again
some rare person has suggested--
is a miracle.
As surely it is."
-Mary Oliver

Almost four years ago now I sat in an office of a condo community in Maryland, outside DC, working as a Marketing Director for a real estate development company. God was changing my heart and life in ways I could have never imagined then. One of my constant prayers during that time was for God to "enlarge my territory." The ache behind that prayer was a need for a shift in my priorities and a place to really use my life for something more meaningful. In a nutshell He answered by giving me a very high risk pregnancy, taking my job away, putting me in bed for months, taking Delaney from me for a time and slowly stripping away all my own ability to provide anything for myself. I was humbled, broken, mostly alone and wondering how in the world this was the answer to my prayer. Then He gave me Danica.

Here I am in much the same circumstances (minus the cushy office and job), but four years later I am surrounded by the amazing love and support of family, close friends, church community, school community and people I have never met from all over the world. As I was talking with a gentleman on the phone today, a man who has reached out to us in staggering kindness, God was using his own life story to minister to me. God has worked in the hearts of certain people to help our family through this difficult time. He is working His purpose in not just the here and now but well into the future answering my specific prayer of four years ago to enlarge my territory. I want to shout it from the rooftop today. God is good. He is faithful. The kindness shown to us is a miracle. It's God's grace over and over and over again in big and small ways. He is not just writing our story with this pen of love but using that same ink in the lives touching ours. This isn't just about us. It's never just about us.

Soli Deo Gloria

(Thank you to everyone who has emailed and called about my own appointment today. I am in a great deal of pain. The doctor's office is trying to get my Lupron shots approved through Summa and as soon as that happens I will get my first shot. Some of you know we are already struggling with Summa again about Danica's surgery. Please pray specifically God will work so I do not have to spend so much time and energy fighting for them to cover their portion. Please pray the Lupron will shrink the growths left to eliminate some of my pain and my reaction to the shots would be minimal. Our hope remains!)

Tuesday, November 2, 2010

Before the morning

"Those who sow in tears will reap with songs of joy." Psalm 126:5

It seems the days all start very much the same. Danica is pretty cheerful, and it all seems manageable. We have our own little routine of making the bed, breakfast, time in the wheelchair with playdoh or art or cutting. Then her neck gets tired, and we move back to the bed, and she plays with some little dolls or toys on her bed tray and watches Nick Jr. I wash my face, brush my teeth, read a little and check my email. By early afternoon she is getting bored and antsy, and I am in so much pain after a few hours of lifting her and moving around. The afternoon has been filled with making bead necklaces, reading, Leapster and anything else we can find to do. When everyone starts to get home from school and work mid-afternoon we usually move back to the wheelchair. She is tired and all the stimulation seems to trigger something in her. The past few nights she has had long screaming fits around dinner time. This is the point I become discouraged and exhausted and the tears come. I realize I have so many hours to go before bedtime and even that doesn't bring any real relief. I sleep with Danica and she kicks me through the night. My mother instincts won't really let me rest if I am with her. I actually dread going to bed. It's 10:05 pm now, and Danica is still wired. I think she dreads the night too. She is most uncomfortable in her brace when she is lying down. I think she knows tomorrow will be more of the same. There is no real anticipation for either of us right now.

I keep thinking I should be writing in the morning. Things seems so much more hopeful and positive and my heart is much more grateful. By this time of night so much of the truth I have been preaching to myself through the day seems lost. Four weeks ago today Danica had her surgery. We have made it four weeks. This is just a snapshot of a bigger picture. This is just a few pages in the story God is writing for us. There is a beautiful song "Before the Morning" sung by Josh Wilson that has been on Danica's playlist all year. My heart is singing these lyrics tonight. Joy ALWAYS comes in the morning.

Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning

My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so just say a prayer.
and hold on, cause there's good who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning
yeah, yeah,
before the morning,
yeah, yeah

Once you feel the way of glory,
all your pain will fade to memory
once you feel the way of glory,
all your pain will fade to memory
memory, memory, yeah

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

com'n, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
just the dark before the morning
before the morning, yeah, yeah
before the morning

Saturday, October 30, 2010

When you just need to go home

Maybe it's because we are all here today. We are tripping over one another and bickering and the kids have been ready to trick-or-treat for hours, and it doesn't start until 6pm. Dan and I have no place to go to be alone for a second or to go to be together. Even if you go to the bathroom there is someone sitting on the bed right outside. If you cry, everyone knows. If you yell, everyone knows. More and more things have made there way over here, and it's beginning to pile up in this bedroom. My OCD is getting out of control. I can't handle the clutter and how nothing has a place. This is hard. I'm not forgetting how blessed we are to be here or how amazing my parent's are for having us and sacrificing so much or how hard it is for them. I'm just saying out loud how difficult this is getting.

Delaney wants to go home. She wants her bed and her stuffed animals and her games and her books. She wants her microscope and her art supplies and her rock collection. Danica wants to go home. She wants her bed and her Little People, Legos and her books. She wants her Bitty Baby and her Thomas. I want to go home. I want my bed, my Keurig and mug, my bed, my books and journals. Oh, and my bed. Dan wants to come home and be able to have a beer, watch ESPN, work on his art and finally if and when the kids are finally asleep crawl into bed with me and hold me, his self admitted battery pack for living life. Tomorrow marks four weeks since we have been together as a family in our house. It hurts in all the ways you think it would and a million ways you never expected.

We had a family meeting to talk about how we could manage if we decided we can't do this for several more months. The fact is Danica's wheelchair would have to be downstairs all the time in our house. We barely have room for it to even be pushed around. I would have to somehow carry her up our very steep stairs to use the restroom or do anything upstairs when I am there alone with her. The nights Dan works I could not be there alone with the two girls. I cannot leave Danica alone at all and Delaney is only eight. She needs someone to help her with homework and tuck her in and generally BE with her and love her. It seems impossible. As Thanksgiving and Christmas approach we all long to be in our own space with our own traditions. Advent is very important to me personally and to us as a family. We always put up our tree on Thansgiving Day and begin our Advent rituals that Sunday. Delaney sat at the table during our family meeting and cried, "I am so afraid we aren't even going to have Christmas this year."

On top of all our challenges I am in pain. Not just "take two advil" kind of ache but stabbing pain in my incision area and my bowel and kidneys. I have been lifting Danica since her surgery. I have my appointment with Dr. Romero on Wednesday to begin my six months of Lupron. When we were in the hospital I experienced a supernatural kind of strength. Everyone noticed it. I somehow was able to almost leave my physical body and minister to Danica. For whatever reason God has allowed my very painful fibromyalgia and endometriosis pains to return in full force this past week. Along with it comes so much fatigue and a cloud of depression.

Danica is doing well. She is bored. We have our daily list of things a three year old can do in bed or a wheelchair. It's been a lot colder this week so we haven't gotten out as much. She has settled into her medication routine. She is healing. She is probably adjusting the best of any of us through all this. She is brave and beautiful and when I think I can't do this one more second I look into her brown eyes and kiss her soft sweet forehead, and I know I was born to do this even if it's forever.

I have a little pillow in my living room in the chair I sit in all the time. It's says, "NEST. A place of retreat, rest or lodging." Home is my nest. Dan and I walked to a little three bedroom spec home a block over from my parent's today. It's all on one floor. We tried to dream about living there. We would have no more stairs to worry about with Danica's recovery. A fall is truly one of our greatest fears, and we have so much therapy once we get out of the brace and wheelchair. We know we need to think about a change, but we are too tired to even come up with an idea. My paychecks have stopped. I don't know when I can go back to work. Our credit is ruined by our growing medical bills. We have faithfully paid every house payment or rent early for the past five years. Our home has always stayed a priority, but this world operates on paper and income and earning potential and not the weary eyes of a mother and father who just want a safe place for their girl to heal.

Please pray for us as we move through today. We need a place of retreat. My heart is longing to go home. Our hope remains.

Tuesday, October 26, 2010

Three weeks

My little Danica is sleeping in the bed beside me, and I am huddled on the floor in the dark to get this quick post out to all of you who have so faithfully prayed for us. Tonight marks three weeks since Danica's surgery. We saw the doctors in Cincinnati this morning, and there was a palpable excitement in the room as we all looked at her new xrays. There is the tiniest bit of change in how the bone graft looks when you compare her last scan and this one. Dr. Crawford explained each scan will show this part of the image getting more and more solid and that is how we know God is doing the healing work of bone fusion. He also explained in more detail the instrumentation he used and how it will grow with Danica so there will hopefully be no stunting of the growth of her neck. This is so encouraging.

The neurosurgeon doctors came and took down the back part of her brace to check the incision. It is beautiful. I know that sounds strange to say, but unfortunately I have seen many of these through photos and of course Danica's incision from her first surgery, and this one is healing perfectly. The guy from the brace shop came in with his intimidating tools and adjusted Danica's brace which seemed to instantly make her more comfortable. Then we were done. Just like that. We go back in three weeks for our next visits with both doctors and another xray as well as an optho doctor since we have noticed some vision things since Danica's surgery. Dr. Crawford said we must stay the course. Infection and a fall of any kind are our two enemies, so the brace must stay on and the wheelchair will remain.

I have never had three weeks of my life feel like three months before. The days seem to drag on and on. Our fatigue is at the point both Dan and I seem almost zombie like. Nothing about our lives is normal or routine. Somewhere in the midst of all this an excitement came over me today. God is doing exceeding abundant above all we could ask or think in so many aspects of Danica's healing. These hard days and nights are wrapped up in the love of so many of you and tied with the ribbon of God's grace. There was a huge shift in my heart as I stared at the ceiling in the hotel all night last night literally wrestling with God in prayer. I am expecting amazing things for our girl and our family these next hard weeks and months. Soli Deo gloria. Our hope remains!

Sunday, October 24, 2010

When you marry brothers

Almost twelve years ago I began dating Dan. His older brother, Steve, was a regular fixture around his townhouse, and we would go out together frequently. Steve was dating a girl he worked with, Amy. There was no fast friendship between us. I was only twenty-three years old and Steve, Amy and Dan were all a good bit older than I. I don't know that Amy and I had much in common at that time except we were dating brothers. As both our relationships got more serious and then we both ended up getting engaged and married and buying homes within months of one another a seed of friendship was planted.

In the fall of 2005 we moved back to Maryland from a three year stint in Ohio. Delaney was just three. Steve and Amy had Aaron who was three too and Mia was just a baby. We lived in Gaithersburg, just down the road from them, and we were in similar life situations again. I found an amazing Montessori school for Delaney and within weeks they enrolled Aaron too. I had the privilege of seeing my nephew almost every day before and after school. We spent weekends doing things with the kids and hanging out at one another's homes. Our lives became very entwined.

The night I found out I was pregnant with Danica their family was with us in the box suite at the Verizon Center for the circus. Amy was one of the first people I called when I began to bleed so badly and when they told me I had lost the baby. After losing my job, while still suffering from the subchorionic bleed and the uncertainty of my pregnancy, before my kidney became blocked, I went through a very deep depression. I still have the emails Amy wrote me during that time reminding me to stay strong. She had lost jobs before and a baby, and her advice came to me as someone who really understood how much my career meant to me and how painful life choices can become.

When I became hospitalized for my blocked kidney . . . for weeks . . . that turned into months many people in my life fell away. Amy did not. She worked all day in DC, rode the metro home, drove to get her kids, made some dinner, got the kids baths and in bed and sometimes it would be 11pm when she would get over to Shady Grove to sit with me. Every night I had to have the baby monitored for an hour, from 11pm-12am. After an excrutiating long and painful day I had to wait to try to sleep until they did this. Amy would come and sit with me and talk or just be quiet and bring me contraband snacks and rub my ugly swollen feet.

When Delaney moved to Ohio to begin Kindergarten here at LCCS while Dan worked nights to keep our insurance in Maryland, and I had to remain hospitalized, Amy made sure Delaney had the most amazing 5th birthday planned for a weekend my mom was able to bring her home. I left the hospital for that weekend and sat as a guest at my own dear Laney's party with my huge feet propped up and a pain in my flank so bad I had to pop dilaudid and phenergen. Dear Amy had the house decorated so beautifully and a special Laney bingo game created and a huge water slide in the back yard for the kids. It was truly magical.

The last week before Danica was born I really went downhill. They had installed some wires in my back with a pump, something like a constant epidural to try to numb me from the waist down so I could not feel so much pain. I believe it bagan to attack the nerves in my back. The pain and spasms were unbearable. I also began hallucinating from all the drugs. Amy sat all night with me during the worst of that time. She advocated to the nurses. She listened to me scream and act completely irrational. She was one of the few people who never looked away when it got so ugly.

I can honestly say if I was ever shipwrecked and could pick one person to have with me it would probably be Amy. She is an amazing problem solver. She is truly helpful in situations where other people want so badly to be but fail because of their own emotional handicaps. Over the years and shared life our hearts have become true sister hearts. We can share the chaff and the grain of life and always know the chaff will be blown away.

Almost exactly three years ago Danica was released from the NICU. It was my birthday. Amy planned to take me out to Rockville Town Center to eat and see a movie. I hadn't been anywhere "real" in months. We sat at Gordon Biersch and ate. We watched "Dan in Real Life" and then we walked throught the little shops. My favorite shop there was "The Waygoose." We spent lots of time looking through the cards and sharing ones we loved. We both have a stationary fetish. She bought a stunning one with a beautiful woman on it.

Today Amy gave me that very same card she bought then. She has been saving it for me all this time. She flew here this weekend to spend some very special time with my Laney. She took her to a play at Playhouse Square and to the Science Center and for long walks on the beach in Bay Village. This afternoon she and I were able to go to Starbucks and sit in the sun and breeze and share our hearts. She calls me "Warrior Queen." She makes me feel like I am that strong. When we hugged goodbye it hurt me because I needed her to stay. She is truly one of God's greatest blessings to me, and I thank Him we married brothers and found our way into one another's lives and hearts. I love you, Amy. You are a gift.

(Danica had a very bad screaming and thrashing episode tonight. We leave tomorrow afternoon for Cincinnati for Tuesday morning appointments with the neurosurgeon and the orthopedic surgeon and an xray to see how the fusion is doing. Please pray for peace for her little body as we travel. Please pray for safety and strength for Dan and I. Our hearts are so heavy about returning there this soon.)

Saturday, October 23, 2010

Throw your change in every time

There have been days over the last months when I have been having a really bad day because of long doctor's appointments and waits at pharmacies and Danica's pain and someone will be particularly rude at a stoplight or waiting in line somewhere when I am dazed, and I want to tell them to please understand what I am going through. Once Danica began wearing her collar it was shocking to me how much more sympathy and concern we received in day to day situations. Suddenly, people maybe realized our shoes might be a little more uncomfortable than their shoes that day.

One of the biggest blessings while we were in Cincinnati was getting in to the Ronald McDonald House the night of Danica's surgery. I had heard many stories about this amazing organization but never imagined what a gift it would be to stay right next to the hospital in such a beautiful and caring environment while Danica was recovering from surgery. The Cincinnati House is one of the largest in the United States with 78 guest rooms that stay full all the time with families who have travelled from around the United States and the world to seek treatment for their children at Cincinnati Children's Hospital.

There were nights I would literally stumble over to the house in exhaustion or get a ride from their shuttle because the neighborhood around the hospital is really not good at all, and once I was through the black gates, saw Ronald sitting on the bench, heard the beautiful fountain waters and entered the heavy wooden front door I felt like I was home. There are always meals there donated from area groups and businesses, cookies and treats baked at night and milk in the fridge. Every door has a poster created by the family about the child who is there for surgery or treatment. It is a completely different kind of feeling than staying in a hotel. There is a kinship and warmth felt when you walk past someone in the hall or see them in the community kitchen. You KNOW it's been a hard day. You KNOW they need a smile and a prayer for grace and strength. You KNOW they are taking nothing for granted.

We stayed there eight nights. The average stay is 27 nights. Dan, my mom, Eleanor, my mother-in-law, Delaney and I rotated sleeping in the two queen beds in our comfortable room. They ask you pay a $25 donation per night but no family is turned away if they cannot make the donation. The actual cost per room per night is $100, but the average cost most families are able to pay is only $8. Everyone pitches in. There is no maid service. People do their own laundry, make their own beds, sweep their floors and clean their bathrooms. Everyone helps to keep the community areas clean.

Everytime you go through the drive-thru for a Happy Meal or Big Mac I hope you'll throw your change in. If you live near a Ronald McDonald House consider volunteering or checking out their website for items they need donated. These houses truly become home for people who are dealing with some of the hardest days of their life. When our shoes are too tight Ronald's big floppy shoes are an amazing gift.

Check out the TODAY show tomorrow morning at 8am for a feature story on the Ronald McDonald House Charities of Greater Cincinnati and a special boy, Magnus, who decided to give back to this special place.

Friday, October 22, 2010

Stones of Remembrance

"Then Samuel took a stone and set it up between Mizpah and Shen, and called its name Ebenezer, saying, "Thus far the Lord has helped us." I Samuel 7:12

Last night I had my first "therapy" session since Danica's surgery with a wonderfully wise woman I have been seeing for many months now. One of the advantages of our time together is she can catch up on my heart on the blog before I come. First she let me talk about what we have been through and then she came in with the loving counsel. She gently told me, "You need to stop visiting the theater of "what-ifs." She reminded me the enemy most likes to see me there wasting time and energy watching so many things out of my control. Instead I should be gathering the stones of remembrance which admit one to the most beautiful story ever told.

Today I want to share just a few of the literally hundreds of stones that build our altar of gratitude and grace in this journey. I had written a post on my old blog a post titled "Ebenezer" in December of 2008 about this practice. A comment on my last post from dear Julie and my session last night convicted me to revisit this "ritual"

One of the most amazing parts of our story is the people from all over the United States and the world who have loved Danica and our family, prayed for us, encouraged us and supported us financially. A family from California has faithfully sent us financial support every month since they learned of Danica's need. We do not know them. I don't know if they sat down and made a conscious decision to not go out to eat twice a month or give up something they were wanting or even needing to sacrifice for us. Their faithful, consistent expression of love is life altering. A young lady from Australia not only made a large donation to us initially but recently wrote me an email commiting a monthly donation to help us through the next months. Again, I have never met her. She has joined our family in spirit and is choosing to give rather than shore up her own 401K or buy a new pair of designer boots or take a trip. There is a lady in my book club who has sent me a card and some expression of love EVERY single week. This faithfulness amazes me. There is a gentleman who knows of Danica and our family through Delaney's school who approached my mom with a gift the day before her surgery. He called her again yesterday to check on Danica and all of us. My company collected donations to help us. Dan's company had a Danica jeans day and collected donations and allowed employees to donated vacation, sick and personal time to Dan to use during Danica's recovery. The Foundation for Community Betterment event the last week in September was amazing. (Post still to come on this life-changing event with pictures and donation update.) A constant flow of love carries us day by day as we focus on Danica's recovery and just getting through the day.

In the book of Acts there is a section about the early church I have read over and over lately, "And all those who had believed were together and had all things in common, and they begun selling their property and possessions and were sharing them with all, as anyone might have need." I don't think I ever really knew what these verses could look like in today's culture until now. Suze Orman tells us financial security and the "american dream" include owning homes, cars, taking vacations and having an adequate savings account and retirement. All these things in and of themselves are a blessing and reward of hard work and wise planning. Dan and I have had all these things at one time and perhaps even made them our idols. God has taken much away, and His new plan for provision and health care has included the support in big and small ways from all of you. One of my fears and "what-ifs" at the beginning of the journey was the love and support would fall away, and we would be left here in what seems like the hardest part, the long recovery, alone. Instead the constant faithful love continues to surprise and heal us in raw places. We are not alone. We are going to make it through this. We are part of a body.

Thank you. Two words cannot express our gratitude enough. Instead we will continue to place stones of remembrance on our altar. Thus far the Lord has helped us.

(Danica sleeping in the sun in her wheelchair. Bravest girl I know.)