Monday, February 28, 2011

The station (A Dan post)

I'm not a big fan of Facebook. Maybe it's because the past several months . . . years, have been very stressful and I'm not usually in a good frame of mind to share personal information online. I realize posting daily commentary is often very therapeutic and that true friends are sincerely interested in ones plight, but I don't want to fall into a habit of constantly sharing my inner thoughts and feelings especially since the update from our world is unusually bleak. Honestly, it's like needing to turn off the news five minutes into the report. In our case, you probably just need to look away most of the time. If you see me and ask how we are doing I will say something like, "Oh, we are surviving." No details. Anything else is probably too much information.

My wife had another laparoscopy a week ago and is still struggling with the recovery. A laparoscopy is like a trip to the dentist for her as she's already had many of them over the twelve years we've been together, but this one threw us a curveball with a blocked kidney causing extreme pain. We spent Saturday back at the ER, and they sent her home with a catheter. They are unsure why her bladder will not empty on it's own. She is such a strong woman. I catch her crying once in awhile, but she quickly wipes the tears away. She quotes a verse. She reminds us we can't turn back now. We can't give up. Tomorrow we head back to the Clinic for more tests and we are without our girls for another few days. Put the broken record on the Victrola.

The real answer to how things are going over here is a four letter word a lot of the time. My wife is the center of our home, and she keeps us all moving through our routines. With her in bed it's like we are paralyzed. Danica needs her and doesn't want me for the simple day to day stuff. This frustrates me. Delaney reverts to those months she had to be without Monica when she was hospitalized and pregnant with Danica. She has very real anxiety about her mom being sick. Our independent girl becomes needier. I shut down emotionally. My wife is my other half in every sense. I promise I won't do this, but I can't help it. When she is sick I am perilously stuck on a ledge. I can't communicate this or move to be different. It's like I'm hiding here until she can emerge from the bedroom and put us all back together.

I'm not holding up too well despite outward appearances. I'm way stressed and am gaining weight. The one thing that gives me some relief, working out, has been pushed to the back burner while I am full time caregiver. I snap easily and am quick to frustration. It is a challenge to care for a bed-ridden wife and mother, a three year old in a brace and a precocious eight year old all at the same time while maintaining a clean, orderly home. I focus on the outward things and forget the emotional needs of all three of my girls should be a priority. My girls definitely deserve better parenting from me. I hope they forgive me for failing them so often. I have missed a lot of work. I am so grateful for the FMLA and the donation of paid time off from my coworkers, but it still is upsetting to feel like you are letting everyone down, including your work team.

The support we receive continues to be overwhelming. The well wishes, thoughts, prayers, dinners, and gift cards are all extremely generous. I feel ashamed that I am not displaying more sense of gratitude during these trying times, but it is often difficult to just face the day ahead. Please know your love has changed me. I cannot fully communicate the ways I am a different man because of God's providing through you. We would not have made it through this journey without our "social network." We talk all the time about how we hope to be able to turn all this love and support into something bigger and "pay it forward" in the future. For now, please know it is safely planted and growing.

There is a tiny light at the end of the tunnel but our train keeps jumping the track. Danica is physically doing well despite her shrinking Minerva brace. We are struggling to limit her walking with assistance for fear of falling, but it is quite evident that she is ready to remove her brace and move to the Aspen collar. She has two large friction sores on her neck but that does not slow her down at all. I am unable to create a dream of her running around freely in the warm summer air, barefoot in the grass, as it seems forever since she has had that brace on, just sitting here in our little home. A week from tomorrow will be six months. A half a year we have been here suffering and waiting and hoping. It's hard to remember what it could be like if we really get to move past this. I try to emulate an "Inception" like dreamworld as often as possible allowing myself to drift off into a "better" life for some relief. I don't read my wife's facebook posts or blog all the time because, to be honest, the content scares me. I don't want to recognize her words as the reality of my own life . . . our life.

We have our eyes fixed on next Monday and Tuesday, March 7th and 8th, in Cincinnati. Danica will have her brain MRI and her bone x-ray. We fully know our journey on these tracks may enter another dark tunnel in the near future, but our train must stop at the next station as we desperately need an opportunity to strengthen our family and enjoy life. "However, sooner or later we must realize there is no one station, no one place to arrive at once and for all. The true joy of life is the trip. The station is only a dream. It constantly outdistances us." (Roberts Hastings)

The only REAL station is when ALL this will fade away. We will wake up from this dream into eternal reality and will have arrived. Until then, please continue to pray for us that we will ENDURE and God would allow a period of rest and some days of happiness for us soon.

"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed . . . Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." II Corinthians 4:8-, 16-18

Tuesday, February 22, 2011

Never disappointed

" . . . We also have joy with our troubles, because we know that these troubles produce patience. And patience produces character, and character produces hope . . . " Romans 5:3,4

It might sound like a broken record by now, but we are hanging in there, and yes, even rejoicing. My surgery on Friday went very well. I finally spoke to Dr. Falcone this morning about the pathology and all the work he did. His words, "There was endometriosis EVERYWHERE." He did extensive removal in the intestinal area even some resectioning and stitching where he could not plane the disease off. The extreme pain I was in was most likely coming from the growth through my bowel and rectum. He removed my appendix. I am more emotional after speaking with him. I am so thankful I did not wait to have this surgery. There were several times I almost cancelled because I just didn't think our family could go through this recovery right now. I now know it was a critical decision and thank God for guiding me to Cleveland Clinic and to this doctor. Dr. Falcone truly believes he got all the disease.

I am very sore from having so many incisions and internal trauma. I really hate taking narcotics, so today I am trying to just manage on the Motrin so I can think more clearly and sleep less. I am not allowed to lift anything for several weeks, and I feel like this recovery is perhaps even more tenuous than my hysterectomy. I really need this to "stick." I will have a follow up appointment in a few weeks to talk about how we can move forward and try to prevent the return of the endometriosis. I can tell you I am willing to do anything to keep this stuff from growing back, so if the next time you see me I'm on a crazy no sugar, wheat or meat diet you will understand how desperately I never want to get back to that place of pain again. The Cleveland Clinic has a great deal of experience with advanced cases like mine, so I am hopeful and will do whatever they suggest to get my health back.

The girls had a good weekend with my parents. My mom was not feeling well, and she said it was like an angel descended over those two sweethearts. I can tell Dan is already very fatigued from doing everything the last twenty-four hours. Danica becomes so frustrated with wanting me to care for her. We have been codependent for so long, and it hurts both of us to be away from one another. I know she is just downstairs, but I feel like I need to see her and know she is okay. It is the same for her with me.

Two weeks from today we will be in Cincinnati. It will be a critical trip. Danica will have her first MRI under sedation since her decompression to check for any herniation and for CSF flow. She will also have another x-ray and God willing finally be able to move from the Minerva brace to a sturdier Aspen collar and more mobility. In our minds and hearts there is only a positive outcome for these scans. We visualize our lives becoming something easier . . . anything easier than what this past winter has been . . . this past year has been. I was right in my last post about the little tease of spring. There's so much snow outside today, and it is so cold, but I refuse to feel discouraged today.

" . . . And this hope will never disappoint us, because God has poured out his love to fill our hearts. He gave us his love through the Holy Spirit, whom God has given to us." Romans 5:5 This hope will never disappoint us. NEVER.

Thursday, February 17, 2011

First breath of spring

Today is a good day. The sun is shining and the snow and ice is melting into muddy puddles. It's one of those days God lovingly turns up the heat a little, and you feel like if you listen close enough you can hear Him whispering to the world, reminding it to keep on turning so spring will come at just the right time. You know it will snow again, maybe even tomorrow, but just for today the hope of warmth and growth and a new season is enough. I have a few windows open, and we blew bubbles on the front porch and took down our little snowman flag and replaced it with one with butterflies and flowers.

I am rushing around trying to get my family and myself ready for my surgery at the Cleveland Clinic tomorrow. I am on a liquid only diet so by now I have a blood sugar headache and have lost most of my steam with miles to go. Danica was up at 2 am last night and tossed and turned and fussed the rest of the night, so I am pretty much ready for the kind of sleep they will put me under tomorrow.

I have the usual anxiety about surgery. I have a history of issues with anesthesia and pain control. I found out Tuesday I will have five incisions. The surgery will be at least three hours. Dr. Falcone will literally pick the disease off my organs. I am most anxious about leaving my children, especially Danica, and needing to stay down and recover after. The girls will go to my parent's tonight and stay for the next few days. Dan will be with me before and after surgery and taking care of me the first few days.

I have prayed and prayed for the measure of health and strength I need to care for my family. Over and over through the years God has humbled me with my fibromyalgia and with this chronic endometriosis and multiple surgeries. I've felt frustrated that I can't be "DOING" more for Him. I'm not even talking about the "big" things I'd like to do. Just helping in Delaney's class at school or with a Sunday School class or having people over to fellowship has been an impossibility. I've been so uncomfortable about continually receiving instead of giving. I guess you can say there are times I have fought God tooth and nail over my personal circumstances thinking I could write our story better any other way than this.

Something has changed. I feel different. Our family is feeling different. It's more than maybe a spot of light at the end of this crazy long tunnel. It's more than just NOT being on Lupron anymore. (Wow, has my mood changed!) It's more than blind optimism. It is the POSSIBILITY we are promised. All things are possible. ALL things. Because of Him.

I remember sitting in my counselor's office sobbing last spring. I was truly ready to snap. I was working full time from home and caring for Danica and managing the maze of the Chiari world and Danica's new bone diagnosis. I was physically so sick. My sister Heather had encouraged me to add a "paypal" button to our new blog. I prayed long and hard. We weren't those people. We worked hard. We could do this. I could do this. My dear counselor said, "What if you made your need known and see what God does?" This seemed too scary and so not George Mueller. Still, through other encouragement from friends and family who wanted to help we took that step of faith and God has done the impossible over and over and over. Month after month when each need arises someone steps in and cares for us with God's hands. When we think the love is surely going to be used up or we will be forgotten there is another "bag of rice" at the back door to feed us. It's been crazy love. I'm not talking about God's people sending us their leftovers, their muffin stumps, their discretionary love. I'm talking about an insane amount of love for a simple family who has had some really long hard years and tough stuff.

I don't quite know what God wants us to do with all the love and hope and faith He has planted over here. I'm sure to most it still looks like the aftermath of a horrible storm. I'm sure many are wondering what could really have survived the wind and the rain, the snow and the ice and the digging and the pruning and breaking God has brought our way. I can tell you we can feel the tiniest movements beneath the earth. Something is really going to blossom here. We know it.

Shauna Neiquist writes in her book Cold Tangerines, "Life with God at its core is about giving your life up to something bigger and more powerful. It's about saying at every turn that God knows better than we know, and that his Spirit will lead us in ways that we couldn't have predicted. I have known that, but I haven't lived that. There is a loosey goosey feeling to the future now, both a slight edge of anxiety, like anything can happen, and a slight bubble of hope and freedom that, well, anything can happen. There are moments when I feel, suddenly, lucky and thankful and shocked at how happy I am. I have called this the hardest season in my adult life, which it is, and it is not what I had planned in the least, but it is also a secretly beautiful, special season at the same time . . . I am afraid, sometimes, about the future, but at the same time, I surprise myself with how okay it is and how okay I am with not knowing exactly what will come next."

One of the things people have said to me through this journey that has made me the squirmiest is, "This is just a season in your life." In my mind a season is three or four months, not three or four years, but I can really feel it changing today. I can really feel the hope and breathe the truth in and out.

Today my prayer is something like this, "God, thank You for the moments when Your voice so clearly reminded me how blessed and grateful and happy I really am. Thank You for making me okay with not knowing what You have planned next, because I believe it is perfect. Thank you for doing everything you have promised you would do and so much more for Danica and our family. Thank you for the parts of our life hiding just below the cold ground waiting for You to push them through the earth and warm them into blossoms. Thank You."

Thank YOU for your prayers over the next days and your constant crazy love.

Friday, February 11, 2011

The bedside table

Cleveland Clinic guide to surgery binder.

New bill from Cincinnati Children's for $2,004.35.

New FMLA papers that came certified today.

Handmade valentine from Dan's aunt Bonnie with a reminder of daily prayers.


Stack of paperwork for financial assistance for old University Hospital bills.

Handmade "Dayenu" mug from Sharon full of pens.

Aveda hand lotion from Beth.

A stack of books: One Thousand Gifts, What's so amazing about Grace?, Peace and Plenty, The Praying Life, Spiritual Disciplines Handbook.

My Bible. (The one I grew up reading not a newer version, because I need to see the same words I memorized, the same notes in the margin, the same worn pages that have brought me this far.)

Three journals.

Three thank you notes addressed but not written.

A scrap of paper with a list of things to do before my surgery.

A check for our family from an old friend and his wife.

A box of prescriptions.

A tissue with fresh tears.

My bedside table is a metaphor for my life right now. It's the place I let down my guard and all the truth about how tired and anxious and sad I feel about what has happened and what is happening is being told. You can see why. You can see the pills I reach for when I need sleep and some relief from the pain. You can see the months of blank days in my planner. You can see the never ending bills. . .

Take a closer look and you can see the WORDS that win out. "Dayenu. All of YOU is MORE THAN ENOUGH for all of me." You can see God's love, His GRACE, His manna, for us in the constant outpouring of love from others. You can see our debt is really already paid. If you read closely you will see the storylines of faithfulness, strength, growth and the "healing of the heart's eye through which God is seen." (St. Augustine)

I am cleaning off the bedside table today. I really only need to see His words from Psalm 73, "My flesh may fail, but God is the strength of my heart and my portion forever."

Thursday, February 10, 2011

Still dancing . . .

"I know nothing, except what everyone knows--if there when Grace dances, I should dance." W.H. Auden

Ten years ago today Dan and I were married in Leesburg, Virginia. We said traditional vows and had no idea what promising a lifetime of love would really cost us. About four years in I lost my way, and I know now that Dan's forgiveness was the first taste of REAL GRACE I ever knew. He showed me God's love.

Well ‘I do’ are the two most famous last words
The beginning of the end
But to lose your life for another I’ve heard is a good place to begin
Cause the only way to find your life is to lay your own life down
And I believe it’s an easy price for the life that we have found

Dan and I renewed our wedding vows in June, 2006 in a beautiful outdoor ceremony. Instead of reciting our original vows we decided to write our own. Towards the end of mine I reflected, " . . . I love that I have this opportunity to make these promises to you again knowing so much more today about what commitment really means and what love truly is. Dan, you are my prince. You are my gift from God. I pray each day for the grace to be the wife you deserve. Most recently I am reminded that perhaps the most beautiful thing about your love is how strong and true it has always been even when my heart has wavered. As we continue our journey as husband and wife and as a family know that more than ever this love is what gives meaning and purpose to my life, and if I do nothing else but love you and Delaney well IT WILL HAVE BEEN ENOUGH."

So when I lose my way, find me
When I lose loves chains, bind me
At the end of all my faith
to the end of all my days
when I forget my name, remind me

Little did we know on that June night how important the renewing of our vows would become over the next years. After Danica was conceived, and we fought for her life and mine and sent Delaney away to live here in Ohio there were times we were a moment away from falling apart. I don't think we ever really caught our breath before this Chiari journey began. There was a time even last year when we didn't know if our marriage would survive this minefield. Thank you for praying for us.

Cause we bear the light of the son of man
So there’s nothing left to fear
So I’ll walk with you in the shadow lands
Till the shadows disappear
Cause he promised not to leave us
And his promises are true
So in the face of all this chaos baby
I can dance with you

I can tell you the love lessons and the grace lessons we have learned through our challenges are proving to be our greatest blessings and remind us to ENDURE and keep dancing no matter how dangerous it seems.

Oh this is harder than we dreamed
But I believe that’s what the promise is for
That’s what the promise is for

Monday, February 7, 2011

Within us

“What lies before us and what lies behind us are small matters compared to what lies within us. And when we bring what is within us out into the world, miracles happen." Ralph Walso Emerson

Dan gave me a simple necklace with the beginning of this quote as a gift this past weekend. It's perfect. As Dan presented it to me he explained no matter how hard life has been we have to know it could be much worse. We have to live in gratefulness. If there is one thing we have learned together it is to grab the sweet small notes that are writing our song in the dark.

What lies within us by God's grace is the strength to endure no matter what. There is the hope things really will get better and healing will finally come. There is the joy in celebrating simple things. There is the true rest that comes from a constant dependence on God's daily provision. There is the peace that passes all understanding as we continue this journey. There is the love we have for one another growing stronger and truer than ever through the storms.

These are the miracles happening. We are celebrating water into wine as we continue to learn Dayenu. He is more than enough.

(Thank you for continuing to pray for us. Today I will be taking Danica to an eye specialist. Because getting the wheelchair in and out of our house alone is an impossibility I will be carrying her the entire time. I am really hurting so please ask I would have specific strength for this outing. Next Tuesday I have a full day of presurgery tests and appointments at Cleveland Clinic and my surgery will be Friday.)

Tuesday, February 1, 2011

Shelter of love

"The minute I heard my first love story,
I started looking for you, not knowing
how blind that was.
Lovers don't finally meet somewhere.
They're in each other all along."

This Rumi quote was on the program from Dan and I's vow renewal ceremony in June, 2006. Today is my Dan's birthday. Forty-three years ago he was born in Bellvue, Washington to Curtis Dewitt and Alice Jane Snyder. I love knowing our love story began then. Years before I was even conceived my life was already meant for his. I love believing God's providence isn't always confusing but sometimes just beautiful.

I met my husband in 1999. I was twenty-three and Dan was thirty-two. A friend of mine from college worked with Dan at UUNET and rented a room from him. Before I even met Dan I went to see Afolabi and other friends in the DC area for the weekend and stayed at Dan's home in his room. Dan was gone in Michigan, but before he left he folded down his beautiful jacquard comforter, laid out a plush Ralph Lauren terry cloth robe and bought luxurious bath products to leave in the bathroom for me beside the big soaking tub. I was in love.

I hadn't had a real home since my parents moved from Staunton, Virginia to Ohio in 1994. I was seventeen then and very much on my own. I moved from basement apartment to dorm room to apartment to apartment . . . and even my Laura Ashley bed linens and battenburg lace shower curtain didn't make up for the fact I was very very homeless in all the ways that count. Dan and I began emailing one another after that trip and several weeks later in early March I came back to visit and meet him face to face. I knew right away I was finally home.

We have lived in nine cities and ten houses since then. We have gone from a luxury five bedroom, three and a half bath home to our sweet little rental here. We have sold almost everything we owned and started over and over again. Everytime we've moved the foundation and the roof have stayed the same. It's the shelter of this man's love that has made the places I have rested my head seem inconsequential. We are praying much about our living situation these days, and I sometimes think my soul can't take losing my nest again. Then I remember wherever Dan is and wherever Delaney and Danica are, I will be home. Providence is beautiful. Tonight we will celebrate Dan's birthday. This weekend Dan and I will celebrate our 10th anniversary, our love story.

"In the shelter of each other we will live. We will live. God has given us each other. We will never walk alone . . ."

This song is on repeat on my playlist these days.