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