Living in the gaps and saying "thank you"

"The answer must be, I think, that beauty and grace are performed whether or not we will sense them. The least we can do is try to be there." Annie Dillard



I wasn't going to blog this summer. I have been writing privately instead which makes me even more honest and accountable, because I'm not trying to put any best foot forward (if I even have a "best foot" anymore). So many of you have written me expressing your sadness that I would just stop in the middle of our story. Please know we are forever grateful for the time, energy, prayer and resources you have invested into our lives. I am convinced we would not be here today except for God's provision through you. It's not that I wanted to quit completely or leave you hanging. I just felt the need to rest and reflect. I have been really afraid to keep saying out loud how bad things were getting in my own heart. I have been in a very dark place and begging for God to show a glimpse of Himself to me.

All last week I would ping pong between spending hours trying to find the good in our move and living in the basement at my parent's house and deep depression and discontentment and trying to make a plan out of here.

I've been reading Annie Dillard's Pilgrim at Tinker Creek. At the very end of the book is one of my favorite passages:

Thomas Merton wrote, "There is always a temptation to diddle around in the contemplative life, making itsy-bitsy statues. " There is always an enormous temptation in all of life to diddle around making itsy-bitsy friends and meals and journeys for itsy-bitsy years on end. It is so self-conscious, so apparently moral, simply to step aside from the gaps where the creeks and winds pour down, saying, I never merited this grace, quite rightly, and then to sulk along the rest of your days on the edge of rage. I won't have it. The world is wilder than that in all directions, more dangerous and bitter, more extravagant and bright. We are making hay when we should be making whoopee; we are raising tomatoes when we should be raising Cain, or Lazarus.

Ezekiel excoriates false prophets as those who have "not gone up into the gaps." The gaps are the thing. The gaps are the spirit's one home, the altitudes and latitudes so dazzlingly spare and clean that the spirit can discover itself for the first time like a once-blind man unbound. The gaps are the clifts in the rock where you cower to see the back parts of God; they are the fissures between mountains and cells the wind lances through, the icy narrowing fjords splitting the cliffs of mystery. Go up into the gaps. If you can find them; they shift and vanish too. Stalk the gaps. Squeak into a gap in the soil, turn, and unlock-more than a maple-a universe. This is how you spend this afternoon, and tomorrow morning, and tomorrow afternoon. Spend the afternoon. You can't take it with you . . .

There is not a guarantee in the world. Oh your needs are guaranteed, your needs are absolutely guaranteed by the most stringent of warranties, in the plainest, truest words: knock; seek; ask. But you must read the fine print. "Not as the world giveth, give I unto you." That's the catch. If you can catch it it will catch you up, aloft, up to any gap at all, and you'll come back, for you will come back, transformed in a way you may not have bargained for-dribbling and crazed. The waters of separation, however lightly sprinkled, leave indelible stains. Did you think, before you were caught, that you needed, say, life? Do you think you will keep your life, or anything else you love? But no. Your needs are all met. But not as the world giveth. You see the needs of your own spirit met whenever you have asked, and you have learned that the outrageous guarantee holds.

I think that the dying pray at the last not "please," but "thank you," as a guest thanks his host at the door. Falling from airplanes the people are crying thank you, thank you, all down the air; and the cold carriages draw up for them on the rocks. Divinity is not playful. The universe was not made in jest but in solemn incomprehensible earnest. By a power that is unfathomably secret, and holy, and fleet. There is nothing to be done about it, but ignore it, or see. And then you walk fearlessly, eating what you must, growing wherever you can, like the monk on the road who knows precisely how vulnerable he is, who takes no comfort among death-forgetting men, and who carries his vision of vastness and might around in his tunic like a live coal which neither burns nor warms him, but with which he will not part.

Halfway through the day yesterday I began to quit praying "please" and start praying "thank you" again. I could ignore grace or see it. My grandma Wishart who also lives here took me to an open house at a home for sale on the corner of our street. I really didn't want to go, and I'm not sure why she thought it would be a good idea. I knew it would make me sad and covetous. The wound of not having my own home is open and raw and seeing a beautiful home I couldn't have seemed to be like salt in my bleeding heart. The family who is selling the home has suffered incredible loss. Their husband and father died from cancer. Now they are moving back to West Virginia to be near her family for support. Walking through the home made me think about the wife and mother's heart and how sad she must be feeling to leave this last place she lived and loved with him. I thought about how she would live in a tent or cave to have one more day with him. I thought about how we have come through so many fires with the most important thing surviving. We have one another. We have flesh and blood to touch and love one more day.

I went home and instead of crawling back into my dark bedroom to cry I started to look for the backside of God in this gap He's brought me to. He showed me His glory in a little found toad and the sun and my beautiful grandmother's face as she enjoyed her stained glass hobby. He gave me glimpses of His ever faithful grace. He gave me a yielded heart of submission to this place which is as holy as any other if I would only keep my eyes open and keep saying "thank you" over and over again.

Dan's CT is at Mercy this afternoon and then we head to Cincinnati for a grueling day tomorrow. Please pray for safety and strength for us. Please pray for little Danica who is so much more aware each trip of the challenges she is facing. Please pray for Delaney's heart as it longs for all this to end so we might never have to leave her again. Pray we will forever cling to the hope that does not disappoint and keep believing God's outrageous guarantee that always holds.

Keep calm and carry on

Have I posted this as a subject before? I have this in a frame in my kitchen . . . well, I don't really have a kitchen any more, but it's hanging by my wet bar type kitchenette place in our new home. It reminds me every day to breathe and put one foot in front of the other.

I mentioned on facebook about a week ago that Danica has had some symptoms return. It's like you can see the Chiari in her face. She has been noticably limping and complaining her foot hurts her. Her spasticity has increased, and she has also been choking and waking every night. We had an appointment already scheduled with Dr. Crawford in Cincinnati for a week from today, June 28th, at 8:10 in the morning. This visit was about getting an x-ray to check on fusion. After talking to Dr. Crone's office today about Danica's issues he agreed we need to check the brain. Danica will be put to sleep and have an MRI immediately following her appointment with Dr. Crawford.

Will you please pray for us? It seems we cannot catch our breath for any amount of time before another wave knocks us over.

We are mostly moved and sleeping here at our new little nest. There are certainly adjustments, but I am looking and finding blessings everywhere as we settle. Even now Delaney is singing at the top of her lungs in her room with her dear neighborhood friend, Emma. They have played with their American Girl dolls and studied rocks and are kindred spirits in a gift from God kind of way. The safety of being on one level is also a blessing. I am not holding my breath every second of the day and exhausting myself going up and down the steps holding Danica's hand. Whatever God is asking us to do next I am resting in the sure provision of this place for now.

Carrying on. Our Hope remains!

Moving and taking a blog break

"The word of righteousness will be peace, and the effect of righteousness, quietness and assurance forever. My people will dwell in a peaceful habitation, in secure dwellings, and in quiet resting places." Isaiah 32:17-18

Our home is pretty much packed. Friday we will move our big things and sleep at my parent's for the first time. Delaney came up to her room tonight and saw all her ceiling "flair" was gone. She got big tears in her eyes and said, "I'm getting really emotional." That's an understatement for me. I thought I was ready for this, but I'm not. I said over and over three years ago the next time we had to move it would ruin me. It takes something from me each time that I can't explain. After all we have been through I feel like this is the tipping point. I feel afraid.

The past week I have been completely manic. I have had repeated panic attacks. My attacks are usually prompted by a feeling I cannot escape somewhere. I think not having a car has added to this, but I didn't pinpoint that until later. They also have come from thoughts of living in the basement. I had my first panic attack in college in a basement apartment in an old building on South Main Street in Harrisonburg called Shenrock. I didn't know what was happening to me then, but there was a huge party in an apartment upstairs, and I couldn't get out of the door to even leave. I remember the racing thoughts and the crushing weight on my chest accompanied by the true inability to breathe.

Since my last post I have pushed myself physically more than I thought possible. I have literally packed our entire house and carried all the boxes down to our dining room. My head will not stop thinking about the things we have had to sell, the things in our garage still to get rid of, the many logistics of phone, email and mail changes for all the utilities, Danica's medical providers and bill collectors which I have not taken care of yet. My brain fixates on the few things I have left that matter so much to me. They are not valuable things but sentimental things. I want to move them all myself with kid gloves if I have to, but what I really want is to leave them in my car until I find a home again.

My parent's home is beautiful. The neighborhood is lovely. The basement although only having two windows for natural light is new and clean and homey. If someone had to move into a basement apartment this is the most ideal situation you could find. Still, I feel like I can't do it. I feel like I'm going to bail. I feel like I'm going to get everything there and make sure my family is okay and then go AWOL. What kind of wife and mother does that? What kind of wife and mother would sacrifice what I have the past four years, suffer and endure all we have as a family, write on this blog over and over again about faith and hope and then completely crack?

I'm ashamed. I wonder how I could post Big girl britches just over a week ago and then fall so far so fast? I wonder if all this stress for all this time has brought back the mental illness I once suffered from and thought I had conquered through Christ and His strength. I wonder if the chemistry of my brain is so altered I won't be able to get back to a place of safety and joy and peace. I wonder if this is sin or punishment for some sin. I wonder if I could have more faith if things would get better. I worry about how my children will remember these times. I wonder if they will ever be able to appreciate how much I love them and how much I wanted things to be different and how hard Dan and I have worked to try to change things.

I am planning to take a break from blogging here. I hope that you will continue to pray for us even though there are not frequent posts. I ask that you will please especially pray for Danica's continued fusion and healing. I ask that you will please pray for peace for Dan, Delaney, Danica and I. Certainly we do not just wrestle against flesh and blood but also principalities and powers. I go back to the truth every day. We are more than conquerers. Nothing can separate us from His love. He is able to guard our hearts and minds through Christ Jesus. This is not our home. We are heading for a place with no more pain, no more sorrow, no more tears . . . and no more moving ever. Safe.

(Thank you to dear Bethany who mailed me a note with the above verses. I have been reading them over and over and over again."

Big girl britches

Friday nights are always cathartic for us. We are exhausted and ready for an even earlier bedtime than usual. We always exhale a little and say a "thank you" we made it through another week of life. Tonight we were especially grateful Dan made it home with our old JEEP. He had barely made it to work on Wednesday morning and then worked all day and through the night, only curling up for a couple hours sleep, and then worked again all day Thursday. Danica and I took him lunch after her therapy Thursday morning, and he looked as tired as I have ever seen him and discouraged. He had just written the "break through" post about his glass finally being full and then the JEEP gave out. I could see his heart wondering if maybe the other shoe really is always going to drop. Danica and I have been shuttling he and Delaney around since. Tonight he decided he should try to get the JEEP home. He let me know he was leaving in case we needed to find him on the side of 77, and the girls and I had a little prayer meeting. Imagine our joy when he pulled up in front of the house. Hallelujah!

The funny thing is I truly haven't been stressed about the car. My first response was concern for Dan's safety and then some truth, "The Lord gives and the Lord takes away. Blessed be the name of the Lord." Two years ago He gave us this vehicle free and clear. Although we have had to put money into it to keep it going. It has been reliable and a true blessing. There was something deeper than my remebering how many times God has been faithful in the past. By God's grace I really have grown into this response of peace when life happens.

Not long before our Florida trip we made the very hard but necessary decision to move into my parent's basement. I was struggling mentally and emotionally. It was the most depressed I have felt through this entire journey. I shared with you all how brutal the roller coaster was of trying to be strong and positive then rushing down into despair and worry without warning. I made an appointment with my doctor and began a new medication in addition to all the others I was taking. I can tell you without a doubt it has changed my life. I feel better than I have in a decade. I am stable. The side effects have been manageable. All except one. I have gained weight. For someone who has literally always felt comfortable with my body this has been a challenge for me. I still see the benefits as far outweighing (no pun intended) the problem for now. I saw my doctor today, and I was reminded how thin and fragile and truly unwell I was last summer. Since then I have gained 15 pounds, 7 of which have quickly accumulated since beginning this medication. I have had two very major, body changing surgeries. I have truly healed in so many ways.

Tuesday I made a trip to visit a dear friend who I made online right at the beginning of Danica's Chiari journey. Her son, Josh, had his first decompression two weeks before Danica did with Dr. Cohen. We have never met in person but walked a very similar road with our children following their first brain surgeries. She was recently diagnosed with cancer. If there are good and bad kinds of cancer this is one of the bad kinds. I had planned to drive to her oncology center in Pennsylvania and do a chemo day with her, but she became very sick and her blood counts were so bad they hospitalized her. I decided to go anyways to visit. I have been to many hospitals in my life. I have been the patient and the one sitting vigil. I am always reminded when I walk in the doors how "real life" stops and this world hangs on threads. I saw her body, so frail and fighting, unable to eat because of thrush and the burning from the radiation and nausea from chemotherapy with a stomach tube keeping her fed and IVs keeping her hydrated. She talked about her disease as frankly as I have ever heard or read. She was matter of fact and still resolved. I was completely humbled and changed by the time spent with her.

As I drove home my pants felt a little tight and I loosened the button. I felt shame alone in my own car about my growing tummy. Then I thought about how my body has carried me through my life, often betraying me, making me aware of weakness at every turn. I am stronger now than I have been in years. I am in less pain. I am able to do more. I am able to go longer and work harder. I have always had a test for my size. A pair of Ralph Lauren jeans. Not the Ralph you buy at TJ Maxx. Real ones. Timeless, beautiful and perfectly made. I have been able to comfortably fit in these jeans for 10 years. Tomorrow I think I'll yield to this new body and buy a new pair of big girl britches. I'll let myself be comfortable with the scars and stretching and the growing because a size 10 could be one of the best gifts I've been given in a very long time.

(Danica's appointment in Cincinnati with Dr. Crawford was moved from June 14th to June 28th. Although we are anxious to see the progression of the fusion we are relieved to have it pushed until we are moved and have a week to settle. She had a great therapy session this week and got to ride an adaptive bike. I am hoping Dr. Crawford will give us permission to have a trike adapated for her to ride in our new neighborhood. She was so thrilled and proud to be back on wheels.)

Glass half full (A Dan post from Saturday night)

When I met my wife twelve years ago and began to understand who she was I told her even before we got married she would end up being the backbone of "us". Even at thirty-two years old I felt insecure like I was not the man for the job. I knew she was strong enough. The funny thing is if you know our family you would easily assume that I am the one who is the epitome of strength. In the weight room I out perform guys half my age, and I rarely get sick. I have an ability to keep going physically and mentally when many others would have to stop for rest. Despite her many physical and emotional challenges, Monica is simply the rock that this family stands on day in and day out. If any men are reading this blog I hope you are not afraid to admit you are not as strong as you think you are.

Tonight as my beautiful wife and I sat out on our little front porch sharing a bottle of cheap champagne we talked about life and what we want our kids to know about us should the good Lord call us up. Why is this important to me? I have always wanted to know exactly what my mom would have said to me, if she could talk, when we were alone in the hospital room the day of her death. To me, this unknown is why today I still see life as a half empty glass. I want to know what mom thought of her life those last days and hours. I never knew if she was happy before the cancer and what her hopes and dreams were for me. I never knew if she felt ready to go and if she was looking forward to Heaven.

In comparison, I know my dad has lived a full life at seventy-six. He has told me that every new day is the best day in his long, very rewarding life. He is my hero. There is also my older brother that has always listened to his inner voice and still plays the drums professionally along with his "day job" and taking care of his family. In my opinion, this is who my brother is and always has been, and he is my idol in life. He is someone who has a passion and has never sacrificed that God given talent, and he does not have to prove anything else to me for me to always look up to him.

Tonight I broke one of our four Waterford crystal champagne flutes. It fell onto a cement mold of a puppy that we placed in our mulch bed around our front porch. My wife and I were devastated as we have treasured this wedding gift for years, but I quickly came up with a reasoning for the loss. Before ships are launched to sea, they are christened with a new bottle of champagne. We are moving from this house and planning on adding a new puppy to our household soon so the broken champagne glass was to honor our old house for providing shelter and welcome the new addition to our family. But as I blog tonight I also think the broken crystal may have a greater meaning in my life. Maybe it's telling me that once the glass is broken it cannot be put back together much like my life cannot be lived over again. Tonight I had a wonderful evening with my gorgeous wife knowing my beautiful daughters were safely at Pops and Meems. I realized that my glass is not half empty no matter how many challenges we face. I can't go back and write what my mom will say to me on her last day. I am the person that God knew I always was and always will be, and He has blessed me with so much more than I deserve. Life is fragile much like the Waterford crystal. Our relationships are fragile. We should not take either one for granted nor can we have a "do-over" should either one break.

Reflecting on my life, a tattoo inscription I have dreamed of was "Endure" on the inside of my bicep. It would signify that I have made it this far regardless of my "half empty glass" outlook on life and all the adversity my family and I have faced. Tonight it dawned on me this seems to be a pessimistic way of viewing life. Instead I'm thinking a line from a Sanctus Real song may be my answer for my tattoo and my new outlook on life. I mentioned the song Lead Me in a previous blog post, and the verse from that song that sticks with me the most is "...Father give me the strength to be all that I am called to be." I feel this simple plea defines my life. I strive to become physically stronger in the weight room. I strive to be more of a rock for my wife and my girls. I pray to have faith in the Lord that He will continue to give me the strength I need to confront any obstacles that my fragile but full life has in store. I am truly blessed.

Vote for Danica!

This picture of our sweet girl was one of the last ones taken of her the week before we headed to Iowa last May. During that visit with Dr. Menezes she began wearing a collar and then moved on to an Aspen and then her Minerva brace. I knew the day our friend, Christina Adam, of Grace Designs Photography took her picture it would be one of the last times I might see her small white throat and neck in pictures for a very long time.

Someone suggested I enter this picture that has been round the world thousands of times on Team Danica's blog and on hundreds of prayer cards on refrigerators and bulletin boards all over the country into the Parents Magazine cover photo contest. Could you please link here, vote for her and then share with all your friends and family asking them to vote too? I have been praying for an opportunity on a larger scale to share about Danica's story and raise Chiari awareneess. I wish I had heard of Chiari and some of the symptoms before that day they called me and said they found it on her MRI. I wish I had known NOT to believe them when the local neurosurgeon said the finding was "unrelated" to Danica's many neurological and physical manifestations of Chiari. I wish I knew the questions to ask before we rushed into Danica's first decompression when we finally found a surgeon who at least understood and believed her slumping brain was definitely partly to blame for all her pain and disability. I wish we had known that strange look in Danica's eye in some of her baby pictures was a sign of bone malformation. I wish there had been an article or a news story or something in the many childhood health books I read to clue me in. Now that we are moving past crisis I will be devoting as much time and energy as possible to raise awareness and funds for research. Please help by voting for our little miracle girl, Danica Jean!

309 Hoover Street

Staunton, Virginia. The little three bedroom, one and a half bath brick house I grew up in. A little neighborhood that branched off West Beverly Street. It backed to woods with an alley that ended in the Hecks, Kroger and Family Dollar parking lot. A full front porch with white iron trellis and a porch swing. A big maple shading the yard and keeping the grass from ever growing really well. A row of peonies separated our yard from Mrs. Wiseman's little ranch. They smelled like the perfume she wore too much of and were always full of ants, but I loved them anyway. She was the first Jewish woman I ever met. My mom said she believed everything in the Bible but the the words in red. On the other side of our house lived Millie and her husband Sam. We didn't have air conditioning and the whole house fan was bring in the cool Valley air at night and the smell of the Winston cigarettes Sam smoked on the porch after dark. Those were the days I slept on the top bunk and hid books under my pillow to read with a flashlight after I thought my sister was asleep. Millie drew her eyebrows on with a pencil and my mom told me she was sad because she saw her father kill himself when she was young, and she found his eyeball later. I grew up with grass stained feet all summer and a tent over the clothesline using mom's good sheets pinned into the ground. I grew up with orange and brown mushroom wallpaper in the eat in kitchen and lots of orange Tupperware. I love orange. I grew up with dinner on the table every night at five o'clock. My mom put on lipstick right before dad got home and would put a dab of Cachet on her neck. I grew up with homemade bread and chocolate chip cookies. I grew up dressing like Anne of Green Gables dreaming of owning a real life Gunne Saxe and not one I picked the pattern from at the Piece Goods Shop and my mom sewed at night while I slept. I knew who I was very young. I read poetry up in the branches of my favorite climbable tree and shot baskets in my regulation NBA hoop my dad bought me after several seasons of amazing UVA Cavaliers basketball. (Who can forget John Crotty?) I felt old when I turned six. I wanted the wood grain of our furniture to match. I saved up money to buy Victoria magazines and checked out design books from the adult section at the Staunton Public Library. I got a paper route and saved my money for a walnut and brass daybed, Laura Ashley chintz and college. The neighborhood deteriorated around us, but it never felt unsafe. I think maybe the rent increased in the seven years we lived there from the $300 it began at in 1981. The basement we used to ride our bikes and rollerskate in became a project and was eventually finished into a study for my dad and a family room. The Iris on the side of the house multiplied. The Zinnias tucked neatly behind the railroad ties at the back grew from seeds we planted every year sprinkled in with marigolds. I could go on and on. HOME. Not like the movies. Not a colonial with a formal living room and a dining room and a window seat and Wedgewood china in a hutch like I always dreamed of. Instead, a few white milkglass hobnail vases always full of flowers and Corelle Ware with paper napkins. Mostly sheets and towels that were a little stiff and scratchy from drying out of doors while I imagined life was going to be found in thread count and Egyptian cotton. How does a girl know about these things or long for them?

Tonight Dan and I sat on the little front porch on 35th Sreet. We have lived here three years. This home was a gift from God then and now. We had lived on Pontius only three months and before we could catch our breath a bombshell. The move to Ohio almost killed me, and I had to begin the hardest job of my life, database work from home with a six month old baby. I longed for DC and Ann Taylor suits and long lunches at Clydes. I longed to be peddling the American dream--real estate, floorplans, granite and hardwood. I wanted to be meeting with designers about model homes and not visiting horrible little rentals on the south side of Canton trying to find something we could afford on our new budget. When we walked into this sweet house we said "yes" in our hearts. We had to rest. $30,720 rent later. More tears and sleepless nights and prayers and laughing and praising and fighting and yelling and holding our breath than we ever thought we'd live. More breaking and healing than we ever hoped for. NEST. Our safe place to hide. As we sat in the evening air as we have often done on date nights before, talking about our time in this place, one thing stood out. No matter how much we idealize where we would like our children to grow up and our life to take place, God will work His miracles anywhere. We will plan our ways, but He will direct our paths. Shelter is love no matter what kind of dishes you have.

We walked to Milk and Honey in the dark after hours of talking. We held hands and laughed. We came back and slow danced to our favorite playlist. Our $200 Big Lots mattress my parents bought us when we moved here (because we had to sell almost everything we owned) is the softest place to land when you are in love. In love with life. At peace with wherever God will take us. Finally breathing out a little after holding our breath for what seems like forever. I know our kids will remember home like I do our little rental in Staunton. Wherever we are together as a family, living and loving we will be okay. HOME. On this side of Heaven we will look for manna in the morning and pitch our tent in the wilderness, and we won't forget His faithfulness. It's ENOUGH. Dayenu.