Be still

"He says, “Be still, and know that I am God." Psalm 46:10

I'm home alone. I skipped church to be here alone. Dan took the girls to Sunday school so I could have a few hours to just be still. Living here in my parent's lower level has been a blessing but a challenge for me. There is always some kind of activity above. I have not relaxed here. I rarely read. I haven't sipped any hot tea or found a place to nestle in with thoughts and prayers and words. From early morning until late at night there are thumps and bumps and voices and a strange pull of frenetic energy that is inevitable from three families living under one roof. The girls are always wanting to go upstairs or outside and see what everyone else is up to. This week my cousin, Hannah, will also be moving here to live in my dad's study. She is coming to student teach at Lake Center and will be in Delaney's class some of the time. Delaney is thrilled. All I can think is there is no more room at the Roberts' inn. Having this place to land when we would literally be in a shelter somewhere otherwise is top of our gratitude list. To even complain for a minute about how difficult this is sometimes seems so wrong. I know God has us here for a reason. I just need some time to be quiet and search out the treasures hidden here.

I have not been well. I am not well. This suffering has made even the basic tasks of caring for my family very difficult. When people ask me how I am feeling I want to be honest, but I cannot continually launch into my symptoms and how every step these days is a fight. I know they must rolling their eyes. I mean how in the world can one family endure so much continuous trial? I don't blame them for needing to look away. The faithful (you know who you are) who have stayed and stayed and stayed are perhaps the greatest gift we have received. After the journey we have traveled for years now I am least equipped to finally face the physical pain that has ruled my life for well over a decade. I am riddled with guilt that my dear Dan and Delaney and Danica would have to go through another season of hurt to perhaps find myself healing. I do not know where the money will come from this time to travel to see the specialist and get all the imaging done and make a good treatment decision. Just like when we began the hunt for Danica's diagnoses and treatment over two years ago, I am stepping out on faith. I'm believing God will not take us where He cannot provide for us and keep us. He's in this.

This is what I know for sure. In the past few weeks God has been leading me in specific ways to understand I could find help. He has allowed my physical pain and disability to increase to a level I have never experienced before. Almost like He's shouting at me to find help. He has given me courage specifically through Danica to know healing is possible and any improvement in my pain and day to day life is worth fighting for. He's calming my heart about the new road I see stretching before me. He's provided for us through gift cards to help with school shopping and groceries and even an offer from someone to treat me with massage and fascia release free of charge. He's been faithful. He will continue to be faithful.

I need to be still and quiet and alone to reflect on how far God has brought us and rest in His promises and loving arms for this next chapter. Our hope remains!

(Today I finally was able to make my appointment with Dr. Fraser Henderson in Bethesda, MD. It is 8 weeks away. I will see him Wednesday, October 19th, have very specific imaging done on Thursday, the 20th, and then see him again on Friday the 21st. I will write later about my worsening symptoms and why this is the doctor I need to see. The Tuesday after, the 25th, at 8:30 in the morning we will need to be in Cincinnati and hope and pray Danica's scan will show complete fusion, and she will be able to begin some life without her collar. God's timing is perfect. Whatever He has written for my own healing had to wait until Danica could get to this point in her hers. Please pray I will be able to find some relief with massage and be able to function during the next two months. Please pray for Dan and I's marriage. All this is so hard and Dan admits he draws from my strength and energy. When I am this low he gets very discouraged. Dan is healing from his stones. He still has some pain on and off and sees his surgeon in two weeks to follow up and have another scan. Delaney is also struggling. She begins fourth grade next week. She is visibly angry with me for feeling so sick. Since she was four years old and had to move here to Ohio with my parents while I was hospitalized in Maryland she has had so much to understand and deal with. Every night she prays for health for her family and a "normal" life. Although blessed with much love she feels very insecure. Please pray Danica will continue to heal and progress in therapy. Her sweet spirit rescues me every day. Please pray for peace and little breaks of stillness to know God is God. Thank you.)

Providence and promises

"Remember that in the providences of God the believer is passive, but with regard to the promises of God he is active. In the one case he is to “be still” and know that God reigns, and that the “Judge of all the earth must do right.” In the other, his faith, childlike, unquestioning, and unwavering, is to take hold of what God says, and of what God is, believing that what He has promised He is also able and willing to perform. This is to be “strong in faith, giving glory to God.” Octavius Winslow

It's been fifteen months since Danica has had a neck free from some kind of collar or brace. She is just now allowed to remove it for physical therapy. I took this photo today at her session. To see her delicate throat and neck so straight and so strong makes me buckle in the knees and weep. Oh how we have collectively hoped and prayed with each one of you for God to heal our girl. We have passively watched for His perfect will in Danica's young life. All the while we have actively claimed His promises of provision and grace and strength as we waited. Could we ever give Him enough glory?

As I type this I am wincing in pain from a back injury. I can truly barely function. I pulled something Sunday lifting my girl, and it has gone from bad to worse. I once again want to ask Him "Why?" in the same breath as praising Him. My soul cries, "How much is enough, Lord? What are you trying to accomplish through me in this place of constant physical hurt that breaks my spirit and grieves my heart?"

Tomorrow Dan will have surgery at Mercy Medical Center. We will be there at 7am for his pre-scans and his surgery will be at 9am. He has been suffering extreme abdominal pain and other symptoms for months. Finally last week they found three kidney stones, two on the right side and one very large 17mm one on the left. After the surgery he will have a stent in place and try to pass the pieces they will break up during his procedure. He will be off work next week and experiencing a good deal of discomfort until the stent will be removed.

I know we've asked a hundred times for prayer. Humbly, we ask you again to lift us up. And please don't forget to thank our God for Danica's continued healing. His promises are true. He is always good. Our hope remains.

One of our "theme songs". It's on repeat today.

Because I love her . . . like my own soul

"And it came to pass, when he had made an end of speaking unto Saul, that the soul of Jonathan was knit with the soul of David, and Jonathan loved him as his own soul. And Saul took him that day, and would let him go no more home to his father's house. Then Jonathan and David made a covenant, because he loved him as his own soul." 1 Samuel 18:1-3

Several weeks ago we were blessed to have my dear friend Angie and her family here to visit for twenty-four hours. This picture of us and our sweet littlest girls, Audrey and Danica, was taken the morning they climbed into their van and pulled away. Part of my heart left again with her that morning. She has carried it for more than thirty years now. In a world of broken promises our covenant has remained. I love her, and she loves me.

I have written about her. She has written about me too. We are kindred in a way you can only understand if you have experienced it. She is a fighter and a survivor of cancer three times already. A week after her visit I got the call. "Moni, they found another mass. This time it's in my colon. It's cancer. . . again." This insidious disease is back and way too soon. She is weak and tired and afraid. My absolute first instinctual heart cry was to our God. "I will take her place. Please, release her from this cross and let me take it." This is not a noble thought made because it could not ever become a possibility. I would do it. In a second. I would lay down my life for this friend.

We were little girls playing beneath the dogwood trees and swinging as high as we could at Gypsy Hill Park. We were young girls trading well worn books, sitting on our beds writing in our journals and reading poetry out loud. We were teenagers dreaming of our futures, what men God might have for us to marry and the names of our children. We were young adults driving the gorgeous back roads of the Shenandoah Valley countryside singing at the top of our lungs with the cool evening air blowing in our hair. Little did we know how beautiful our lives would become and how bittersweet. We could have never imagined the pain and suffering or the amazing Grace that would carry us.

Angie is having her cancer removed surgically tomorrow. I am going through the motions of my own life because I must, but every single breath I take is in thought and prayer for her and her family. So many of you have stormed our God in prayer for Danica and our family. Won't you please pray for my friend tonight? Please pray for her physical healing. Please pray for peace of mind and strength of spirit as she recovers and faces chemotherapy again. Please pray for her husband Brian and her sweet children, Asher, Micah and Audrey.

I have seen real life miracles worked out through faith and love. I am on my knees pleading for another one tonight. I love her . . . like my own soul. I rest knowing He loves her more.

You may follow Angie's journey on her blog at www.springofjoy.org



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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.)