Thursday, August 26, 2010

What is real

"Nothing real can be threatened. Nothing unreal exists. Herein lies the peace of God." M. Williamson

Since I was a child I have collected words. I have journals full of quotes. I have word documents on my computer with sentences I have copied and pasted from all over the internet. Sometimes I write single words on a piece of paper or an index card. I need to see them lying around. I have a note from my mom in my Bible that she gave me when I was 15. She left it lying on my bed with a pack of Twizzlers on a rough teenager day. It says, "I love you dearly. Proverbs 3:5-6" I have a sticky note from my dad on my refrigerator that says "Monica and Dan, We love you very much." I keep it because I treasure his penmenship and the words are powerful. I have a card with the above quote on it I have had since college. It has moved over a dozen times with me and somehow I always stick it in a place I will happen upon it at just the right time. I found it today as I grabbed a book to read while waiting at my pre-surgery appointments. Today, these words communicate exactly what I know for sure. The rest may be faith, yes, but the peace of God that passes understanding is not something mystical to me. It comes through powerful words. TRUTH. (See how amazing a word can be standing alone?)

We got the call yesterday with the date for Danica's surgery, October 5th. It's been six long months since we knew this was coming. Now, staring at us on the calendar, it makes me want to throw up, or fall asleep forever, or run away or just flat out refuse to move forward. How do we REALLY do this?

Danica is physically showing more spasticty every day. Her speech has become more drawn out and her complaints of headaches and particularly nighttime symptoms are getting much worse. When her brace is off her neck is very crooked and her facial asymmetry and pressure on her right eye is very evident. We have to take all the risks of these two dangerous procedures and somehow rest in God's leading us to the here and now.

A woman I have only met once before showed up on my doorstep this week. I was exhausted and hadn't showered. I wasn't wearing any makeup and had french onion soup breath. Let's face it, in this day and age we don't drop by people's houses very often. We call ahead so someone can put on lipstick and pick up the toys and clorox wipe the counter. We are always trying to make things look a little more together than they really are for one another. When I opened the door she said to me, "I hope it's okay I'm here. I read your blog, and I had to come over. I needed to tell you God IS speaking." She was crying. This is something I haven't really been able to do for weeks. Partly, I'm sure, as a coping mechanism because I simply cannot expend the energy and also because of the Zoloft I am taking to help me cope which makes you a little numb on purpose. It's like I have a callous worn on my heart to help me do the hard work ahead of me. The sincerity and spontaneous love of this near stranger moved me to finally cry again. Oh how I needed to cry again.

The peace that followed this visit was amazing. God will literally drop people on my porch if necessary to remind me He is REAL. We will do this through His grace and His amazing love demonstrated through each of you and your faithful support. Thank you for not turning away. I am always reminded by Danica's life verses. He is writing this story, and He makes ALL THINGS beautiful in His time. This cannot be threatened. This is real. This is the peace of God.

Tuesday, August 24, 2010

Lemonade Ripple

"Some people come into our lives and quickly go. Some stay for awhile and leave footprints on our hearts, and we are never the same." Author Unknown

Remember the little girls from our church and their lemonade stand? About a week after this article was in The Repository the paper was contacted by a woman from a local company, ComDoc. She was so personally moved by Danica's story she approached her boss and team about doing a fundraiser for Danica and our family. This past week we had the privilege of attending the planned icecream social and meeting these generous and caring people. Many local businesses donated items for the basket raffle and Handel's donated the icecream. We left the office changed by the love of people we had never met before and now will never forget. It was a ripple from a simple lemonade stand. Check out the article in today's Repository "Your Life" section titled, "A Scoop for Danica."

Read about "The Lemonade Ripple" here and visit Canton's chapter of The Foundation for Community Betterment's booth at Canton's First Friday on September 3rd to find out more and become part of the ripple! Danica will be one of the recipients of their September 25th Rocktoberfest event.

Saturday, August 21, 2010

When God is silent

I feel myself heading into the place where I am afraid to say out loud what is happening over here in the little gray house on 35th St. I can't come up with a quote or a verse or anything didactic to sum up our days. This past week has pretty much sucked. I know, I know, my mom told me to never say that, but it's true. I'm listening hard for the voice of truth, but I can't hear a thing.

I have a long history of endometriosis, pelvic pain, heavy bleeding, cysts, trips to the ER, surgeries, etc. related to my female organs. Our lives have been interrupted over and over by these issues. One of the first major incidents after I met Dan was on the way back from Aruba where we had honeymooned. I had begun having pelvic pain the last day or so of the trip. On the ascent the pressure from the plane burst a cyst. The bloody and embarrasing scene that followed stays etched in my mind. The stewardess gave me some big granny panties to borrow and tried to observe universal precautions and clean up my seat and the bathroom. They put me in the front seat, and when we landed in Atlanta an ambulance rushed to the tarmac to take me to the hospital. Poor Dan was dazed and confused. We missed our connecting flight back to Dulles. I remember him taking pictures of me on his cell phone and the horror of seeing a gunshot victim they wheeled past me while I lay in the hall at Grady Memorial. For better or worse began early in our marriage.

I have so many other stories like this. One Dan likes to tell is how the day after I had a laparoscopy he convinced me to get out of bed, still bleeding heavily and in excrutiating pain from the gases leaving my body through my shoulders, and go out to lunch and car shopping. I sat at Carmax for hours in quiet agony and once Dan had bought a new car I promptly had him take me to the hospital in Leesburg because I was sure I was having a heart attack. He learned that day not to push me when things are bad. He knows I don't get in bed unless I absolutely have to. We have missed countless events, cancelled many plans, ran out of stores or restaurants with me bleeding, and I have curled up in bed suffering many days of our life together. Every time this happens Dan retreats into a strange angry place. I know deep down he is not mad at me. He is just so sad I am hurting again. I don't always take it this way. I am sensitive and cry and make things worse. I ask him what is wrong when it's obvious. He retreats further.

This past Monday I went back to see my GYN. After almost three weeks of continuous bleeding I began having horrible pelvic pain and could feel a large lump. Right before our Iowa trip in May I had the same thing, and Dr. Romero told me we needed to do a hysterectomy. I took 20 days of antibiotic and figured I would have to wait until next year sometime--AFTER Danica's surgery and recovery. Monday he made it very clear the surgery cannot wait. I need to have my uterus out NOW. I began the antibiotic and by Wednesday my right flank was hurting me so badly. Dr. Romero sent me to the hospital, and they found a kidney infection in addition to the uterine infection. So, I am on doxycycline and cipro to clear up the infections. My hysterectomy is scheduled at Mercy on Tuesday, August 31st.

I haven't heard God's voice this week. I cannot in any way see how God sidelining me right now could be a good thing. My dad is in China. Delaney starts third grade on Tuesday. My mom is principal at an elementary school and is swamped with the beginning of school. Dan and I are already tapped out with our PTO, and we haven't even gotten to the time we need off for Danica's surgery and recovery. The medical bills are already overwhelming. We are all emotionally and physically and spiritually drained. The pain of the past week has made me numb and deaf. I feel like I am failing as a mother, failing as a wife, failing as an employee. I feel like I have to make this pain stop before I can do anything well again.

C.S. Lewis wrote this while grieving the death of his wife, "Meanwhile, where is God? This is one of the most disquieting symptoms. When you are happy, so happy that you have no sense of needing Him, so happy that you are tempted to feel His claims upon you as an interruption, if you remember yourself and turn to Him with gratitude and praise, you will be - or so it feels - welcomed with open arms. But go to Him when your need is desperate, when all other help is vain, and what do you find? A door slammed in your face, and a sound of bolting and double bolting on the inside. After that, silence. You may as well turn away. The longer you wait, the more emphatic the silence will become. There are no lights in the windows. It might be an empty house. Was it ever inhabited? It seemed so once. And that seeming was as strong as this. What can this mean? Why is He so present a commander in our time of prosperity and so absent a help in time of trouble? . . ." Randy Alcorn writes about the doubt Lewis expressed in his book If God is Good, "His blunt honesty with God parallels that of the psalmists, the prophets, and Job. Such eclipses of faith are real but temporary, so long as we hold fast to God and His promises in Scripture."

I am listening and waiting and trusting in the silence today. Won't you please pray the door will be opened soon?

(Please stop the music player at the bottom of the blog and then push play on the video to listen to this beautiful song sung by Andrew Peterson.)

Sunday, August 15, 2010

Your hands

"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

Danica crawled into my lap today. I felt her soft and warm little body meld into my mommy arms like she has hundreds of times. I put my face into her hair and smelled the sweetness of baby soap and her own special scent. My first thought was gratitude for the moment and the awareness of how sweet a gift it was. My second thought was about losing this for weeks and months. How do you snuggle in such a crazy cast?

I have been listening to the song "Your Hands" sung by J.J. Heller today. I am in a great deal of personal physical pain. I am feeling overwhelmed by my work and the intense desire to just spend the next month loving my daughters and husband well and preparing for Danica's surgery.

I need to take my Father's outstretched hand. I need a renewed understanding of how strong His arms are. The very hands that hold the universe are holding my Danica when I cannot. They are holding Dan and Delaney. They are holding me. He will never let us go.

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

When You walked upon the Earth
You healed the broken, lost, and hurt
I know You hate to see me cry
One day You will set all things right
Yea, one day You will set all things right

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands
Your hands that shape the world
Are holding me, they hold me still
Your hands that shape the world
Are holding me, they hold me still

When my world is shaking
Heaven stands
When my heart is breaking
I never leave You when...

When my world is shaking
Heaven stands
When my heart is breaking
I never leave...
I never leave Your hands

Thursday, August 12, 2010

Nuts and Bolts

You would think maybe it would get easier after awhile, but it never does. The preparation for another trip to the hospital mentally and physically doesn't become routine no matter how many times you've gone. The packing and saying goodbye to Delaney, the sleepless night before, the very early morning, the drive, the endless waiting in many different rooms. . . It is always stomach churning. After we had left Danica in anesthesia on Tuesday Dan and I sat in the radiology waiting room. We were both thinking the same thing. Every time we have a little secret piece of hope the news will be miraculous. We silently pray Danica will be better, not worse, and this will all just go away.

After a full day at Cincinnati Children's Hospital we signed the surgery consent forms. MiMi, Dr. Crone's PA, went over a folder of pre-surgery information and gave us soap to wash Danica the night before surgery and the morning of. I think this made it the most real. We are doing this. We will have a date sometime next week. For many reasons it will probably be at least a month out, and we have asked if it could possibly be set for early October. The details of the procedures are very hard for me to write, but I hope by putting them here it will help you understand the rarity of Danica's condition even in the Chiari world and the outcome we hope and pray for. In time I may be able to write about the risks but tonight they are still raw.

Danica will first have decompression surgery. The scan on Tuesday showed her left cerebellar tonsil herniation is increasing and the Chiari malformation is now down to the level of the C3 vertebrae. It also showed a right sided Chiari which she did not have before. The brain tissue on the left side showed sign of necrosis. This means it has been under so much pressure for so long it is literally dying. Dr. Crone will make a large incision in the back of her neck and head, directly over the incision from her prior surgery, but it may be larger because of the need for fusion. He will cauterize the slumping and herniated brain tissue. He will then sew in a stent to help prevent her brain from "falling" back into her spinal cord following surgery. He will cut open the dura (the thick, outer layer of the covering of the brain and spinal cord) to try and maximize CSF flow to Danica's brain. He will apply a dural patch to allow for this extra room and put in a drain that will stay for the first 5 days or so following surgery. He will not plan to remove any more bone. It is critical Dr. Crawford have as much bone as possible available to him in the next stage of the surgery and any more bone removal would add to Danica's instability.

After all this Dr. Crawford will step in to perform the craniocervical fusion. During our visit Dr. Crawford and Dr. Crone explained the complexity of Danica's case and her age make this fusion difficult. There is no instrumentation small enough for Danica's very abnormal bone structure. These rods and pins and screws will be special made for her. The most critical part of the fusion will be the bone graft. This will help rebuild her stability. The casting decision will be made until after the fusion is performed. For both Dan and I this is the part we are most afraid of. We will not know until Danica comes out of surgery if Dr. Crawford decides he needs a halo cast or a Minerva cast. The photos are above. The halo cast requires actual screws into Danica's skull. We are praying the fusion will be deemed successful enough they will choose a Minerva. We can not even wrap our head around our sweet girl living in either of these, but this seems the least brutal. Danica must be immobilized for approximately 12 weeks following surgery to make this fusion a success and give her the best chance.

These are the nuts and bolts of what will happen. Over the next weeks I will write more about what the hospital experience will be like, our planned support system and timing. Thank you for lifting us up. We truly do have a peace over us that can only be explained by your fervant and effectual prayers. Our hope remains.

Wednesday, August 11, 2010

Ready or not. . .

"I believe 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." Shauna Niequist, Bittersweet

I began to write a post with a true "nuts and bolts" update on our trip to Cincinnati yesterday, but it's now after 11 pm, and I am just so tired. I will try to do this in the next few days. Danica did amazingly well with her sedation and flexion and extension MRI. The appointment with Dr. Crawford was as smooth as could have been expected. Dr. Crone spent over an hour with Dan and I going over all Danica's scans, past and present. He answered every possible question we had about her Chiari decompression and her fusion. We signed the surgery consent forms and will hear from their offices next week the actual date they can get their schedules together and an OR for a day.

These are a few of the photos from yesterday. It was such a blessing to have my mom along to help us. Danica acted like she owned the place and can practically weigh and measure herself and check her blood pressure, temp and pulse without adult help at this point. Dr. Crone fitted her for a new Aspen collar. It gives her much more support than her older one. She is very proud of it. She was also so proud to blow bubbles through her mask and didn't fight the gas at all when it came time to sniff the cherry smell. She never ceases to amaze me. Our hope remains!

Saturday, August 7, 2010

I hope you dance

"Tell me, what is it you plan to do with your one wild and precious life?" — Mary Oliver (New and Selected Poems)

I took this photo tonight in our backyard. It amazes me. Our family was playing a game of soccer. It was a wonderful time. While watching and snapping pictures I kept praying, "God, please let this continue to be part of her life . . . our life." Danica lasted kicking and running about 10 minutes before she began crying and saying her head hurt.

We sent an email with specific questions to both the neurosurgeon and orthopedic surgeon we will meet with Tuesday. They both wrote us back immediately, and their answers were hard to process and difficult to get through. Some of Dr. Crawford's email read, "I preface my answers to your questions to remind you that this is extremely complicated surgery. There are existing neurological issues that may not reverse with the surgery and there is risk of further injury with any of these procedures. Neurological monitoring will be performed at all times being prepared to abort if indicated. . . . My goal is to achieve stability following decompression and is not designed to nor will it correct the spine. The comfort of the brain and spinal cord will be achieved by the decompression. The instrumentation in a child this age is creative at best because her anatomy is quite small and abnormal, not suitable for conventional devices. In addition there are post-surgical changes now with displacement and will be further affected by the anticipated decompression surgery necessary. . ." Dr. Crone wrote, " . . . Our hope is that the procedure alleviates the problem (brain herniation) and that she will improve following surgery. However children with these complexities may only be halted in their progression to neurological deterioration. . ."

When I was 30 weeks pregnant with Danica I had reached a critical point in her development and also the pain with my blocked kidney. They had given me a shot to mature her lungs and sent in the neonatal specialists to explain to Dan and I all the risks associated with Danica being born 10 weeks early. They were required to tell us EVERYTHING that may go wrong. I will never forget the scary words and the fear I felt. They "measured" her that day and told us she was approximately 3 pounds. I remember after they left telling Dan, "I know she's going to be okay." God gave me a sense as all that information flooded in about how bad it could be that we would make it through. I made it two more weeks. Danica was 5 pounds when she was born and didn't even need a ventilator.

Over and over again I have dreamed about what a "normal" life for Danica and our family might look like. We keep saying, "If we can just get through this . . ." Then the next thing comes. Danica has begun to self edit her activities based on our constant reminders she may get hurt. This week she told my mom when Delaney and her friend were headed out to jump on the trampoline, "It's too dangerous for me." One of our favorite ways to relax as a family is to pick a favorite playlist and dance together. Danica loves trying to copy Delaney's moves. When she gets too crazy and her neck and head start to hurt she lays down on the floor to rest. I think these emails from the surgeons truly for the first time impressed on me there is no final fix for our sweet girl. This is our new normal. There will always be appointments and scans and limitations. There may always be pain.

This is our life. Every single moment is wild and precious, and we will keep dancing no matter what.

(I met with a local mom of a little four year old girl, Brooke, at Starbucks this morning. Brooke has Chiari too and is having her first decompression on Tuesday. Will you please pray for this family as you lift us up on Tuesday during our Cincinnati trip? Thank you.)

Tuesday, August 3, 2010

Bravest girl I know

I was challenged to look for photos of Danica today for several reasons, and I cannot believe how she's grown since her first Chiari decompression last November. She was just two years old then and now she seems so much stronger and braver. Last week she only cried when they dug into her little arms looking for a vein for her IV. Since then she has been showing her big bruises off as a badge of courage to everyone she meets. Following her sedated MRI, during the flexion and extension xrays, she was awake, and we were moving her neck around while she laid on this cold metal table. She was as calm as could be and did each and every thing the radiologist asked.

A week from tonight we will have made it through another very long hospital day. Next Tuesday we will meet with both surgeons in Cincinnati to discuss surgery details, and Danica will have a flexion and extension MRI under sedation. The x-rays showed clearly when we move her head backwards her legs start going spastic, so I am praying we can get clear images of her brain in different neck positions wisely, without moving her too far and hurting her. My mom will come with us. We realized once again last week that following a sedation procedure two office visits for a child is just too much to ask. We need to be able to hear each and every thing said and need support in general when going through these grueling days. Delaney will stay with her best friend one night and my grandparents the other night.

Thank you for praying for all of us. It seems like such a lifetime ago since I was holding her in the PICU, and she was riding in the Little Tikes wagon around and around the halls of the hospital with that crazy fireman helmet on. There were minutes and hours we thought we weren't going to make it, but the grace came. We know it will continue to come as steady and sure as His saving love and the courage of our Danica Jean.

Sunday, August 1, 2010

Choices, A post from Danica's daddy

Monica and I made a pact that we would have a date night once every three months to help retain our sanity and strengthen our marriage. Fine wine and a five star dinner on a shoestring budget is our passion of choice where we can sit for hours with optional peaceful silence or relationship building conversation. We comment on each facet of the dining experience and linger at our table as long as we can soaking in the atmosphere and one another's company. The simple enjoyment together brings us closer during this tough time, and we are extremely grateful we can “escape” four times a year. We are also thankful that Monica’s parents live so close to care for our daughters.

A few days ago while randomly clicking on various websites, I stumbled upon a story where a town in Southern Ohio had hit hard times with unemployment and a local church was feeding the very young and the very old. Families with small children were lined up waiting in the heat for food. That image stuck in my mind until the everyday happenings and events in my life covered up the thought. In other words, my mind had other things to concern itself with, and specifically I’m concerned with what is occurring in my life. We are subjected to so much sadness and tragedy in our electronic world. For the most part we have to concern ourselves with our own problems and not the plight of strangers or we’ll neglect the health and security of our friends and loved ones. But each day we are given choices to act, react, or remain silent. I am someone who, on average, would choose to remain silent. I understand my place in the world, what I am capable of, and work with what I am given. Others choose to react, to discuss the issue and state their opinion letting others know they are concerned. Then there are those who act with a compassionate response saying they are going to be the difference and be part of change. We all make our decisions based on several variables in life and we are forced to make the choice to remain silent, react, or act on many issues on a daily basis.

When we discovered that Danica had cranio-cervical assimilation after her first Chiari decompression, I chose to ignore the situation. There is nothing wrong with Danica. She was happy, playful and active. Even though her neck was becoming crooked again, as a father I could find no fault in my beautiful daughter. When she was falling more and not sleeping I tried to explain these things away. Monica is with her, especially at night when her symptoms become the worst. She has been the one fighting these past months to get me to understand the changes in her meant something neurological was happening. Danica had an MRI this past Wednesday that showed her cerebellar tonsil is herniated further, and she has less CSF flow than her MRI showed in April. It’s now time to act, and we have chosen our path to give Danica the best odds for a normal childhood and to keep her safe. We will travel to Cincinnati next week and have the final appointments and pre-surgery scans on Wednesday, the 10th.

While a few "close to us" still seem to remain strangely silent regarding our current plight, almost all who have become familiar with Danica have chosen to react and/or act and for that I will eternally be thankful. We have received support from all over the world as we prepare for several months of difficult recovery. The ChicfilA fundraiser, private donations, cards, emails and phone calls have made a huge difference in our lives these past months. I’ve been very self centered in the past. I am distant from my family and friends. Monica is the one who sends out the cards and gift baskets and practices random acts of kindness. Monica remembers the birthdays and special occasions and has gracefully recorded Danica's difficult journey. Our soon to be three year old girl has the fight of her life ahead of her. She cannot fully understand and does not ask why. She fights off the tears when feeling pain or facing fear. It seemed easier for me to ignore and make believe all was “perfect,” but this was the wrong choice. To everyone who has chosen to react and act on behalf of Danica all I can say is thank you from all of my heart—our hearts. The response has been overwhelming. You encourage and strengthen us as we move forward.

I understand there are children and families worse off than we are let alone can afford to go out to dinner even once a year. Though it’s impractical to support everyone, please think of those close to you and choose not to remain silent. Choose to read their story. Let them know, often, that you are thinking about them, and you will be making a difference. We will ride out the storm of the next hard months in the shelter of our God and your simple choices to love us well. I pray my heart is truly changed, and I am given the opportunity sooner than later to act and react through the example you have shown.