Saturday, October 30, 2010

When you just need to go home

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

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

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

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

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

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

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

Tuesday, October 26, 2010

Three weeks

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

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

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

Sunday, October 24, 2010

When you marry brothers

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

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

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

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

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

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

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

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

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

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

Saturday, October 23, 2010

Throw your change in every time

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

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

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

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

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

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

Friday, October 22, 2010

Stones of Remembrance

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

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

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

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

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

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

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

Wednesday, October 20, 2010

Much-Afraid, More-Alive

“As Christians we know, in theory at least, that in the life of a child of God there are no second causes, that even the most unjust and cruel things, as well as all seemingly pointless and undeserved sufferings, have been permitted by God as a glorious opportunity for us to react to them in such a way that our Lord and Savior is able to produce in us, little by little, his own lovely character.”~Hannah Hurnard, from Hinds’ Feet on High Places

Several months before Danica's surgery I was looking to read the above book again. I hadn't read it since I was a girl. My dad ordered me a beautiful hardcover copy as well as an illustrated children's version to read through with Delaney. I am kindred spirits with the main character, "Much-Afraid." I constantly visit verses about courage and fear and am literally paralyzed by the thought of a continued life of exhaustion, pain and suffering. I'm afraid Danica's fusion won't heal properly, and she will have to continue to undergo surgeries and disability. I'm afraid our marriage will not make it through the next three months. I'm afraid the gulf between my Delaney and I will continue to grow as she needs me, and I am not there for her. I'm afraid she will grow to resent Danica. I'm afraid I won't be able to return to work, and we will have to move into my parent's basement. I'm afraid of the pain I continue to suffer physically, the endo growing on my organs and the six months of Lupron I will begin next week. I'm afraid of the night and no sleep and long day coming tomorrow so much like this one it numbs my mind and my heart. My God gets this. It's no mistake He speaks to my cowardice over and over in His Word.

For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.(Isaiah 41:13)

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you. (Deuteronomy 31:6)

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. (John 14:27)

During the last few weeks I have seen so much brokenness and pain. Walking through the halls of the Children's Hospital I could hear the constant cries of children including my own sweet Danica and see the tears and fatigue in the eyes of the parents who passed me in the halls, and I wondered where is God's plan in a place so full of undeserved suffering? I have wrestled with my own faith and the theology of God's sovereignty. I have resigned myself to trust His word and maybe never understand.

Every day since returning home I have tried to leave the house alone for a brief while to get a break from the very constant needs of Danica. Much like my quick visits to the chapel at the hospital I need this desperately to be okay. I cannot find God without some time and space to commune with Him. As I get in my car and drive the rural roads around my parent's home listening to praise and worship music or old hymns and sometimes silence and take in the breathtaking autumn colors I am reminded God is speaking to me everywhere. The death of fall, the harsh winter I know is coming and the promise of spring speak to His faithful love on the just and unjust. It all leads me to the cross. All I once held dear I count as loss. I thought I learned this lesson before. More of Him, less of me . . . more LIKE Him, less like me . . . Beautiful brokenness.

Much later in her journey to the High Places Much-Afraid " . . . Found, too, that now as she was accepting [Sorrow and Suffering’s] companionship in this way, she seemed more alive than ever before to beauty. . .” I am finding beauty in the unmistakable grace, undeserved favor and blessing of God. I'm finding beauty in the ugly too because it all leads me Heavenward where He promises there will be no more pain, no more sorrow and when we see Him we shall be LIKE Him.

Monday, October 18, 2010

Adventure Sleeping

Opie Taylor: [as Mr. Tucker is leaving] Hey Mr. Tucker, you aren't gonna leave, are you?
Malcolm Tucker: I have to, son.
Opie Taylor: Aw, rats! If you were staying, I was going to get to sleep on the ironing board between two chairs.
Malcolm Tucker: Sounds terrible!
Opie Taylor: No it ain't - that's adventure sleeping!

Danica and I have been listening to the sounds of saws and hammering all day today. My parents are having the basement of their new home framed for finishing. Imagine waiting months for your beautiful new home to be built, driving by every day to check out the progress and excitedly picking out the finishes. Finally, it's done, and you get to move in. You even buy a big new king sized bed with the best mattress you have ever owned. Before the boxes are all unpacked and the new grass sprouts are up you find out your grandaughter needs to be in a wheelchair and your house is really the only place she and her family can go while she recovers. Without a moment of hesitation your new home and your new bed are the place you want her to be.

The day Dr. Crawford made it clear Danica would not be able to walk for awhile and need to remain in a wheelchair my parents huddled together and talked about the possibility of having our family stay here with them. Dan and I were very resistant. We need our space. Our family operates on a schedule with lots of quiet time and routine. My parents are in fulltime service. They are in and out and keep much different hours than a young family. Although we knew our home would probably not work even with modifications we did not in any way think staying here was a possibility.

My parents built this house with a master bedroom and bath for them and the additional second and third bedroom expanded on the opposite side of the house as an in-law suite with living room, kitchen and bath for my grandmother and her sister to move into. My dad has a small study on the front of the home, and my brother Mirel, who still lives at home, has been sleeping in the unfinished basement. To say they already had a full house is an understatment. They have been waiting on their old house to close before beginning the expense of finishing any space in the basement. Now Delaney is sleeping on a rollaway in my dad's study. My mom is sleeping on the couch. Dan, Danica and I are sleeping in the master bedroom with Danica in bed with me and Dan on a mattress on the floor. Mirel is staying at our house some and my dad, my sweet dad, is sleeping on a rollaway in the unfinished basement which is now under construction. This kills me. The sacrifice of their home, their bed, their space for us is almost too much to accept.

When I went in the basement last night to see where my dad is sleeping I had to come back up here and cry. He jokingly referred to the Andy Griffith episode I quoted above. Not quite an ironing board but definitely adventure sleeping. We are all adjusting. Delaney is obsessively watching Waltons DVDs. I am missing my husband and my bed and running my own home. Danica is missing her things and her own space too. She asked this morning, "When can I go home, mom?"

Dan and I walked around the neighborhood last night in the crisp fall air while the sun was setting. It was good to realize we still have the capacity to dream and talk about a future. We picked out one of the empty lots and talked about building our own little ranch that would meet Danica's possible future disabilities and still be close to family for support. We watched the children safely riding their bikes through the quiet streets and families walking their dogs and dreamed of a normal life with healthy children and nothing to think about on a Sunday night but a week of work and carpool and homework. We know we will probably never own our own home again. We know we may possibly never have all our bills paid again. We know we may be dependent on the sacrifice and love of others for the rest of our lives. Holding hands with teary eyes we spoke of the blessing of being in this place, right now and being together. We spoke of the amazing love of my family to give up every creature comfort for us to simply make it through these next long weeks and months. We are grateful for adventure sleeping. Our hope remains.

(I love this picture of my dad and Danica in her wheelchair. He invented a game with a rope tied to her chair, and he pushes her back and then pulls her forward.) "Where there is great love there are always miracles." W. Cather

Saturday, October 16, 2010

Healing and praise

Bless the LORD, O my soul; And all that is within me, bless His holy name! Bless the LORD, O my soul, And forget not all His benefits: Who forgives all your iniquities, Who heals all your diseases, Who redeems your life from destruction, Who crowns you with lovingkindness and tender mercies. Psalm 103-104

Remember the picture of Danica's CT from April in the post Blessings and Curses? I will never forget sitting in shock as we looked at the image on the big screen in Dr. Crone's office. We knew there was something horribly wrong with Danica's brain, but we never imagined her bones could be that crooked. This is a new picture of Danica following her fusion. The titanium wire loops through her tiny bones and the itty bitty screws hold it in place. A bone graft is one of the most important parts of the surgery. The Minerva brace holds her perfectly straight and still while God does the work of healing.

God has been so good to answer the thousands of prayers for our girl in the last weeks. Just 14 days ago we were leaving for her surgery. Today we are "home". Although we had some very hard post-op days, our girl is smiling and adjusting to the metal "cage" she must wear for 12-16 weeks. We are so thankful she is not in a halo or Minerva cast. (Believe it or not this brace is the lesser of all three evils.) Danica has not run a fever or showed any signs of infection since her surgery. We finally have found a regimine of medicines that seems to keep her as comfortable as possible without any side effects. Danica is dealing as well as can be expected with her limitations.

Remember our hesitation with Dr. Crawford in the post Fake Erased? It seems during that time he was making his own huge life decision whether to delay retirement and continue his thirty years of working in orthopedic surgery. The nights I spent on my knees praying for God to make this path straight and direct our steps were not in vain. This man was specifically given the courage and knowledge to tackle Danica's case. Every surgery he had ever performed led him to October 5th and our sweet Danica's bones. The 3D model he built of Danica's skull and cranial cervical spine was the first like it he had ever constructed to help in preparation for this delicate surgery. The state of the art operating room and video assisted technology available at Cincinnati Children's were so necessary in such a difficult and multi-disciplinary operation like Danica's. The support staff including the pain team and nurses, particularly in the PICU, were amazing at walking through each minute with us after Danica's surgery. So many things about Danica's reaction to mediciations and her case were truly a first for these experienced medical professionals. God gave much grace to Dan and I as we patiently worked through the issues and to them as they explored unknown territories.

I cannot thank everyone personally who was part of our journey, but I have to mention Dr. Crone again. If it wasn't for his insight into the post-op report from Danica's first Chiari brain decompression last November and his ordering the 3D CT we never would have found this atlas assimilation. His patience with us as we sought other opinions from around the United States, and his persistence with Dr. Crawford that Danica's neurological symptoms required surgical intervention now became one of the greatest reasons I did not stop fighting for my girl. With all the risk surrounding the brain surgery portion of Danica's surgery we felt completely at peace concerning the plan and the desired outcome. Dr. Crone's clear communication and the bedside manner of both him and his team were unparalleled.

I had nightmares last night. We were still in the hospital. Danica was incoherent and thrashing. I was out of my mind with grief and fatigue. This happens every night since her surgery. It will take some time for healing physically, psychologically, emotionally and spiritually. Our God is knitting together Danica's bones and working the miracle we have been asking for while he touches our minds and hearts and spirits.

A facebook status I have posted over and over the last months is a quote from Shauna Niequist's Bittersweet, "I believe still today what I have always believed: that God is good, that the world he made is extraordinary, and that his comfort is like nothing else on earth." Thank you for praising our good God with us and continuing to pray for healing and comfort as we endure on this journey.

Thursday, October 14, 2010

The God of small things

Gratitude... goes beyond the "mine" and "thine" and claims the truth that all of life is a pure gift. In the past I always thought of gratitude as a spontaneous response to the awareness of gifts received, but now I realize that gratitude can also be lived as a discipline. The discipline of gratitude is the explicit effort to acknowledge that all I am and have is given to me as a gift of love, a gift to be celebrated with joy. -Henri J. M. Nouwen

One of the hardest things I thought God would ever ask me to do was move from Maryland back to Ohio in March of 2008. During that time I read all the stories in the Old Testament about the Israelites and how they were always wandering, pitching the next tent, looking for the manna and longing for the promised land. They complained a lot too. Forgetting the mercies of God they often focused on the pain and unsettledness of their lives instead of God's faithfulness. I had begun a gratitude journey in 1999, but it was in the spring of 2008 I made it a deeper discipline to try to give thanks in everything and count it all joy. I admit I have lost my way these last months. I cringe when loved ones remind me of all that has gone right when it still feels so wrong.

We are "home." Discharge was brutal. The ride in the car with Danica was horrible. Every bump in the road was like a knife in her neck. Her pain meds wore off, and we had to wait to fill her prescriptions when we got home. I finally could not bear to hear her scream so I took her out of her car seat (GASP) and held her on a pillow on my lap the rest of the way home. She was so uncomfortable when we got here to my parent's house. Around 2 am Dan and I held her down while she screamed and got some oxycodone in her, and she finally rested until morning. I laid there awake and prayed.

This morning she woke up happy. She ate orange rolls and watched cartoons in bed. My mom came home from school for a few hours so Dan and I could go get her other prescriptions compounded and grab some things we needed from our house. I went up to my room and crawled into my bed for a total of five minutes and cried my eyes out. Then I spent the next hours cleaning up and packing bags. I drove back here by myself so Dan could get groceries and pick up the medicine. I had the windows down and the cool fall air and sunshine hit my face. I saw the gorgeous foliage which had appeared while we were away. I was reminded His grace is everywhere. He is the God of small things.

When I walked into the door here Danica was up in her wheelchair. She had pooped again (this is important news post surgery and after being on so many narcotics.) She had been cutting with scissors and painting and watching the construction team build a new house behind my parent's home out the big windows. I brought some of her favorite toys, and she played with her Squinkies and Strawberry Shortcake dolls for over an hour. Small things. When Dan got back with Danica's muscle relaxer she fell asleep, and I was able to take a long hot shower and wash away the rest of the hospital "feeling" and shave my legs. Small things.

Dan and I read the book Somewhere More Holy by Tony Woodlief the week before Danica's surgery. It made a huge impact on both of us. In the last chapter he writes, "We have forgotten the God of small things, which is mostly what He has been with us because we ourselves are small, fragile things. We wait impatiently, sometimes hopelessly, for the burning-bush God, or the booming thunderclap God, forgetting that even a righteous man like Job covered before the whirlwind of God's voice, that holy Moses could bear only a glimpse of God's backside. We assume that we would hold up well against a visitation by the whirlwind God, and in our narcissistic longing we forget the God of the still, small voice, the suffering-servant God, the God who said of children that his kingdom consists of such as these. "Part of the inner world of everyone," writes Frederick Buechner, "is this sense of emptiness, unease, incompleteness, and I believe that this in itself is a word from God, that this is the sound that God's voice makes in a world that has explained him away. In such a world, I suspect that God maybe speaks to us most clearly through his silence, his absence, so that we know him best through our missing him."" I used the word "hell" a couple times in the last 10 days. I know this to be a curse word and also mean a complete separation from God. When I said it I did not do so lightly. There were times when I felt God was not there. But today in the light and breeze and yielding to the vagabond life God is giving us I know He was speaking to me clearly, and He never left me.

The next few posts will be dedicated to the graces of the last weeks and dwell in gratitude. Not in a blowing sunshine when it's still so dark kind of way, but in discipline and in remembrance of how faithful and good God is. Thank you for praying for us. These days hold no true shape and we need help minute by minute to keep on. You bless us.

Tuesday, October 12, 2010

This hurts

‎"Hold everything in your hands lightly, otherwise it hurts when God pries your fingers open." Corrie ten Boom

There is no way to really write about the past few days. Things with Danica have changed from hour to hour, and I have not breathed. Because Danica's case involved two major surgeries and departments the decision making regarding her care has been difficult to navigate. I'm sure once I settle in and process all that has happened I will write about it. I am now a seasoned patient advocate, and I believe I have experiences to truly help others who may have to walk this path or one similar.

As it stands we may be able to go home tomorrow. This has changed several times today, so I am trying to be realistically hopeful. We have to accomplish a car seat test with Danica in her brace to see if it's safe and even feasible comfort wise for such a long drive. Danica will also be sedated and have her brace removed while neurosurgery removes her dressing and sutures and applies a new dressing. Her entire incision is covered by the head portion of the brace. This does not allow for natural air and light to aid in healing. It is beginning to really itch her, and she gets so agitated because she cannot get to it. Lastly we need to get her wheelchair. The company we thought was going to provide it does not accept our insurance. Social work is trying to get our needs met.

Danica is doing really well. When she is up in the wheelchair for any long period of time she expresses discomfort. We made it through today with no narcotics. She was so excited to have Dan come back and has been enjoying having both Meems and Kee Wee doting on her. She is so ready for a change of scenery.

I think now I am through the adrenaline part of the surgery and really painful early recovery days I am cracking. I am in so much personal pain. I am tired. I am very unprepared for the amount of care and supervision Danica will need specifically from me. Most of all I am needing the space that makes me okay and God is taking it away from me. We live in a little 1930s two story home with one bathroom on the second level and steep stairs. There is nothing ideal about our home when it comes to any kind of physical disability. The only answer we have come up with to is to move in with my parents for awhile until Danica is cleared to walk. This kills me.

God made my brain to need order, to find peace in personal space and lots of retreat. Needless to say I have had none of those things the last 10 days. A homecoming to anywhere other than our home just hurts. Today I've been a little mad. I just don't want to sacrifice this. I do feel like God is prying every single thing from me. I haven't lived at home since I was 17. I love my parents dearly, but I need my bed and my books, and my favorite mug and my towels and my pot of mums.

Please pray for my heart. Please pray I will have strength for tomorrow and the long days ahead. This hurts.

I could really use a wish right now . . .

So much of life is the hope of days to come. Our family hasn't had much to look forward to in the past years. Often, the days and weeks and months look like a long dark road of more of the same. You find that hours pass without laughing or smiling or finding any joy at all. You can't even picture a truly happy place anymore.

The weekend before my hysterectomy I got a call from a local organization Wishes Can Happen. My sweet sister Heather had contacted them about our family and Danica's upcoming surgery. The woman who called asked, "What if you could tell your children as soon as you get through this they get to go to Disney World?" Instantly my mind went to the possibility of our family leaving our life and heading to a magical place where children believe in dreams coming true again. Just having something to hold on for and work towards in this healing and rehabilitation process is a most precious gift.

We will get to stay at an amazing place called Give Kids the World. The girls each have their own wish. Delaney is wanting to swim with dolphins and hoping to go to Discovery Cove. Danica wants to meet the princesses. I want to hold hands as a family and watch the fireworks and not just wish for better days but KNOW they are coming.


Saturday, October 9, 2010


"The quickest way for anyone to reach the sun and the light of day is not to run west, chasing after the setting sun, but to head east, plunging into the darkness until one comes to the sunrise." Jerry Stittser

Since Danica's surgery on Tuesday morning I have barely left her side except to pray each morning in the beautiful chapel here at the hospital. I am so comforted by the quiet there and the sun streaming through the stained glass windows and especially the huge piece of abstract art hanging in the middle of the room. It reminds me morning ALWAYS comes.

Our girl is doing so much better today. She is now moved back to the neuro floor and eating and drinking. She is interacting with us and even once in awhile showing the tiniest smile. It has been very good for her to be able to see Delaney. I was able to snuggle in bed with Delaney at the Ronald McDonald House last night and sleep eight full uninterrupted hours because of my mom's willingness to sit vigil beside Danica and keep her from pulling her NG tube out. This morning we were able to advocate the removal of the tube, and Danica is so much less annoyed. I think it irked her more than the crazy brace!

Our hearts are so encouraged by Danica's improvement. Thank you for praying.

"Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23

Friday, October 8, 2010

Lead Me (A Dan Post)

The lyrics and video posted below is a song titled “Lead Me” by Sanctus Real. I was driving home from somewhere when I first heard this song on the radio. I actually sat in my car upon arriving home so I could listen to the complete song. The words instantly moved me as I immediately thought of my wife. My wife and I are pretty good at being master of disguises as related to how others may depict our lives. The truth is God has been asking us to do hard things for over three years now.

Particularly over the past several months this family has been under attack. You already know Danica’s story. Lesser known are the challenges Delaney is coping with as she is again distant from her family and trying to find some kind of normal. Even more hidden is the status of my relationship with my wife. Several weeks leading up to Monica’s surgery back on August 31st, our marriage was suffering from the constant stress we were dealing with on a daily basis. My wife’s health is always an issue. She has suffered from fibromyalgia and severe endometriosis for over ten years. In fact, I take notice only of the days when she’s feeling good. They seem few and far between. Her poor health affects our children. Her constant pain affects me as I feel helpless in curing what ails her. My wife is my life battery. When her batteries have failed, my batteries remain empty, and I do a lousy job of hiding my guilt and frustration. This anger makes it difficult to bond with my wife in her times of need.

The words to this song were my wake up call. I realized that my wife is the glue that keeps this family together even when we’re apart facing our own struggles. Even when her batteries are dead, when in constant physical pain, when mentally exhausted, she somehow continues to provide for this family. Danica is alive today and now has the best chance at living a normal life thanks to her alone. Delaney is lovingly cared for when separated from her family by Monica’s friends and family. Monica will not leave Danica’s hospital room while we’re here in Cincinnati and has fought all levels of hospital staff to ensure Danica is getting the best care possible. I sit in the room watching her in action, fending off differing medical opinions, comforting her baby while feeling the pain of her recent surgery. I am truly in awe of her strength.

So play this song, listen to the words and think of my family and I as Monica and I sit in this dark hospital room void of strength to carry on. I miss Delaney and her care-free spirit which is under attack. I miss having a happy, healthy wife. My little girl is lying flat on the hospital bed drugged up to unconsciousness trapped in her protective shell. When awake she screams and flails her legs and arms wildly, hurting herself. Asleep, she has IVs in both bruised hands and a nasal cannula to keep her sedated. I need to love and support my wife with my every breath. I need to encourage my big girl to withstand this separation a bit longer and show her how much we love her and miss her. I need to show strength and courage to my little girl so she understands this lowest of lows is just a season in her long happy life, Lord willing.

“Father, lead me, 'cause I can't do this alone.”

Thursday, October 7, 2010

When your flesh and your heart fail

Just a quick update tonight because I can barely think. We have been through the most grueling day of our lives. Danica has been in so much pain and has been having episode after episode of thrashing around and crying. At times it has taken four adults to hold her down. We are back in the PICU tonight, and Danica is calm for the first time in more than eight hours. She is on a new batch of meds and our goal is to keep her resting so the critical first week of her bone graft beginning to heal will take place. Please pray no damage was done today with all her twisting and moving. Please pray for peace for her little body and spirit and acceptance of the brace. Please pray for Dan and I. As you know I was not physically well heading into this. I took some crazy kicks to my abdomen today and have also been going on almost no sleep since very early Tuesday morning. Pray for Dan. God has matured him in amazing ways since Danica's first surgery. He has been a great support and has been patient and loving even when the frustrations peak. Thank you for all your love and support. I'll write more when I can.

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26

Wednesday, October 6, 2010

Hospital food for the soul (A Dan post)

I like those bumper stickers that start “I’d Rather Be…” You see them most when stuck in traffic and realize the frustrated driver in front of you would rather be golfing. Maybe you let your mind wander for a few moments visualizing a beautiful golf course in Jamaica with thick green grass and a gentle ocean breeze. Right now I’d rather be anywhere than in this hospital. Obviously I am gratefully doing anything possible to ensure the full and complete recovery of my beautiful daughter, Danica, but I have always had the tendency to avoid hospitals at all costs. Hospitals are for the sick and injured. The food is mostly bland and simple. The continuous beeping of all the monitoring equipment is the worst. My heart jumps in my throat every time the little beeping noise changes its constant monotone beat. Then there’s the parent complex which means the parents opinion overrules any doctor or nurse opinion. If my daughter wants to remove her IV because she simply “doesn’t like it,” then let’s remove it people. Most often a patient may get several medical diagnoses that differ from one another. For example, several years ago I drove myself to the ER complaining of severe stomach cramps. I reported to the admin that I had been playing golf in the hot sun all day drinking a few beers along the way. Without hesitation I was diagnosed with dehydration and set up with an IV for fluids. After about an hour writhing in pain, they finally sent me to X-rays to discover kidney stones. Thanks. It just seems that every visit to a hospital is an unpleasant experience. Time heals all wounds and I think my current visit to a hospital in Cincinnati may be a life changing experience.

Danica seems to be doing well at this early stage in recovery. Infection is still a huge concern over the next ten days. She has significant pain and is extremely uncomfortable in her new brace. The two surgeons, each with their own professional approach, pre-planned their procedures with expert precision reducing the overall surgery to around 5 hours. Both doctors claim great success with this highly complex operation and we hope with Danica’s complete recovery other kids with similar diagnoses will get help. The P-ICU staff has been incredibly caring and helpful. Danica had several violent combative reactions trying to remove her brace and pull out all her IVs but the nursing staff remained calm and reassured us that they have seen this before and took the means to help alleviate Danica’s struggles. I am more calm and more helpful to my wife than during Danica’s first surgery where everything during recovery was unknown and unfamiliar. I’m looking at Danica as I type these words, lying in her hospital bed in her confined brace, “cheech” blanket strewn across her legs and “Poots” pillow at her side, and when I look at her angelic little face I can only smile knowing that if we can get her home in a few weeks, her “new” neck will help keep her safe during her childhood. This little girl is so brave.

As I walk the hospital halls running errands for my incredibly strong wife, I am also taking time to accept the pain and suffering around me. There are many parents and families here that are having a far more difficult time than we are and even though I can never fully understand their plight, I can at least put our experiences in perspective. We have humbly and gratefully accepted an offer to stay at the Ronald McDonald House and within this huge complex is a quiet room which houses a special lamp. When the lamp is on, it signals the loss of a child whose parents are staying at the house. I may be here for another week and everytime I walk into the house, I think about that lamp and hope I never see it on. Just thinking about it makes me teary eyed. I must say that the Ronald McDonald House is an incredible establishment.

Sitting here in the P-ICU room watching “Little Bill” and seeing my 3-year old rest comfortably with her mother, I’m filled with a calm I have not experienced in a hospital. We still have a difficult road ahead, but the support for Danica through prayer, facebook and via the website has been overwhelming. Thank you to all who have contributed to Team Danica. You all are amazing. Of course I’d rather be somewhere else, playing with my girls or maybe even playing a round of golf someday, but the hospital food here ain’t too bad. You have to try the cheese pizza.

Tuesday, October 5, 2010

The best that hurts

All along this journey something Dan and I have said over and over is, "We are trying to give Danica the BEST chance at a normal childhood and at life." Part of this "best" has included allowing an incredible amount of pain into her world in the hopes of a brighter future. I understand my Father God's heart a little more each time I am asked to walk this girl I would die for into a situation she doesn't understand and will hurt her in the short term. I am asking her to have the same faith in me and my great love for her as my Heavenly Father requires of me as He take me through the valleys.

I'm sitting here in the dark listening to the rough breathing and moaning of my little Danica. She did so amazingly well during both surgeries. All of your prayer was felt in such a powerful way today. Dr. Crone made the first cut at 10:05 am and everything went as planned with the brain decompression. He opened the dura, placed a graft, coagulated the tonsil and sewed in a stent to keep the brain from falling any further. He did not put in a drain. He was able to watch for any leaks, etc. while Dr. Crawford began the fusion. Early this morning in preop Dr. Crawford came in to see Dan and I. He brought a scale model of Danica's skull and cervical spine recreated from her 3DCT. This gave us so much comfort knowing he and his team had been planning for and discussing this procedure for weeks. He used a specially made cable and a bone graft to perform her fusion. The surgery was done in half the time expected. Our little miracle girl astounded everyone.

Coming out of surgery Danica began to really fight to anesthesia and react more aggressively to the drugs. By the time we were able to go see her at 3:30 pm she had become very agitated and managed to pull out her arterial line, foot IV and catheter while fighting the nurses and I. Once we got her settled back down the guy with the stand-in Minerva brace came in to fit her. Let's just say that did not go well AT ALL. The actual Minerva jacket Danica will be fitted for is being specially made and may not arrive for several days. This contraption is pretty horrible and after having the back of your head sliced open is probably the most uncomfortable thing I could imagine having to wear.

Watching Danica go through these episodes is so draining. There is nothing we can do to calm her or help her. We desperately need her to be able to rest quietly and begin to heal. Please pray for her little body to be able to relax to some degree and for her heart and mind to be able to process what is happening to her and around her. Please pray for Dan and I. The pain of watching her suffer is almost too much. We need moment by moment strength to keep fighting for her.

We are so grateful for my parents being here and Dan's dad, Curt, and sister, Mary. They have been an amazing support today. The outpouring of love and prayers from all of you for us is life changing. Thank you! Please continue to lift us up as we go through the next very hard weeks and then the months of healing still needed to make this surgery a success.

C.S. Lewis wrote, "We're not necessarily doubting God will do the best for us; we are wondering how painful the best will turn out to be." I'm not doubting tonight, not even a little. He has proved His faithfulness in a million big and small ways yet again, but oh how this "best" hurts.

I need to go lay with my girl. Our hope remains!

Jesus, bring the rain

Yesterday we made a quick stop in the super cool gift shop here at the hospital. As you can imagine we probably would have bought Danica most anything she wanted. She honed in on a pink ruffly umbrella. She was so proud of it and carried it around the rest of the day. She kept asking us to get under it with her. It made me think of the storm we were heading into and all we have to get through.

They took her back about an hour ago. They let her take her umbrella with her, and she bravely walked back to the huge OR holding the nurses hand. When she was out of sight Dan and I crumbled. Thank you for praying every moment of this long day for our sweet girl and our family. The rain is getting hard and heavy.

Monday, October 4, 2010

This is not how it should be . . .

This is not how it could be. But this is how it is. And our God is in control.

It's dark in our hotel room/  This morning's appointments at the hospital went well. Thank you for praying for us. The reality of tomorrow morning and handing Danica over to this team of people who could never know her or love her like I do sends me reeling. If I try to think about the hundreds of details that go into this surgery; the anesthesia, the brain being cut open, the brain being coagulated, the patch, the stent, the drain, and then after all that the bone cutting and grafting.the titanium and the brace . . . When I try to find something . . . anything to hold on to there is only one sure thing. I believe with all my heart and soul our God is in control of every single moment. I will go crawl into bed now and hold her while I plead with God for the miracle we hope for and the grace to accept anything less.

Saturday, October 2, 2010


I have removed the music playlist from Danica's blog for the next few weeks. I am needing some quiet as we move into these serious days. I am realizing faith does not make any of this easier. It keeps us from being swallowed completely by despair, but it does not sugarcoat this walk we are on in the least. If there is to be any peace at all it will be found trusting in who He is and what He says He will do.