Archive of ‘Dan Posts’ category

On Receiving. An Open Letter of Gratitude. A Dan Post

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“The only way I know to be honestly willing to receive hard things as gifts from God is to consider how they foster the fruits of the Spirit: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Even the best gifts may come with an unexpected cost. Every gift changes something–the shape of the day, the balance of a relationship, or just the space available on a shelf or in a drawer. To receive it is to accept that shift, slight or dramatic, and to make an adjustment. When Jesus gathered the disciples after the Resurection, he conferred on them a gift that changed them and the course of history when “He breathed on them and said to them ‘Receive the Holy Spirit.'” It wasn’t what they were expecting. Nor, when the Spirit comes to us, with inspiration or direction or unexpected comfort, are we fully prepared. But we can practice the open-heartedness that says “Yes–thank you–I accept,” whatever it may cost, knowing the gift, yet to be fully disclosed, holds more promise than we imagine.”–Marylin McEntyre, Word by Word: A Daily Spiritual Practice

I’m sitting here in a recliner in the infusion room at the cancer center, eight long hours into my day of IV medications and slow Rituxin drip. It’s the longest I’ve been away from Danica in over five weeks. I feel like a piece of me is missing. I thought I might finally exhale today. I’ve desperately needed time alone. Unfortunately the TV has been blaring talk shows and soap operas for an elderly lady in the back row. Even my ear buds and peaceful music cannot drowned out the raucous sounds. I’m sicker than usual and frustrated at my inability to accomplish anything except breathe in and out. I brought a stack of thank you notes addressed and stamped, but I haven’t been able to write the same old gratitude. Nothing I say can fully express the depths of pain and the heights of joy that come from receiving the love you’ve shown us.

Dan wrote and emailed me the following post Christmas day. His words and the heart behind them overwhelmed me. If you know my Dan you understand he is the “strong, silent” type, but his rivers run deep and true. He found a new way to say “Thank You” when I cannot.

I volunteered to work today, Christmas Day, as a small sign of how grateful I am to my employer. I was out of paid time off when I requested FMLA for our very open ended trip to Baltimore. They generously paid me for the time while we were in Maryland for Danica’s surgery. My abbreviated five hour shift on one of the slowest days of the year gives me plenty of time to think back on 2016 and offer a husband and father’s perspective on what’s transpired. Monica is the writer in our family, but she’s asked me to write a Christmas letter most years. It brings a new voice and perspective to the one she frequently shares here and on social media. I feel like you could scramble the dates on most letters I’ve written, and it would all still apply except for small nuances. My dad was at the hospital for Danica’s surgery. While hugging me goodbye the day after he said, “It’s been a hard ten years.” It felt strangely good to have someone so close to us validate the decade of extreme difficulty our family has suffered. I’m unable to talk about it most of the time.

When I try to articulate the feelings I find myself back at my favorite Bible verse, II Corinthians 12:10,

“For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”

The second book of Corinthians is a letter from the Apostle Paul to the church at Corinth. It describes some of the challenges he faced upon his many travels spreading the word of Christ Jesus.

“Five times I received at the hands of the Jews the forty lashes less one. Three times I was beaten with rods. Once I was stoned. Three times I was shipwrecked; a night and a day I was adrift at sea; on frequent journeys, in danger from rivers, danger from robbers, danger from my own people, danger from Gentiles, danger in the city, danger in the wilderness, danger at sea, danger from false brothers; in toil and hardship, through many a sleepless night, in hunger and thirst, often without food,b in cold and exposure. And, apart from other things, there is the daily pressure on me of my anxiety for all the churches.”

Many of you are new readers here, but if you have been following since Monica began old Team Danica blog in early 2010 you will spot a few parallels between Paul’s travels and my ten year journey alongside my wife. Weight training in the gym is my only real “hobby.” The phrase “For when I am weak, then I am strong” has a certain resonance in a simplistic way. My personal weakness is the anger produced from the recurring futile question, “Why is this happening to my family over and over again?” This anger leads to a mental push in the weight room where I’m usually able to dissipate this negative energy before returning home to do what needs to be done. Working out has long been my therapy of choice. But Paul is not referring to physical strength in this passage. Paul is referring to the Grace of spiritual strength to endure.

My family opened our Christmas gifts the day before Christmas. I heard Monica mumbling drowsily around 7 am, “Sounds like the girls are up already.” Immediately this casual observation created a huge warm spot in my heart. I was comforted in realizing our two daughters were safe in our small warm home, and we were all together. Nothing about the holidays this year feels celebratory or nostalgic. Monica, Danica and I are still processing much of the trauma from the surgery and hospital stay. Our usual family Advent worship was non-existent except for our reading of the Christmas story from the book of Luke last night. Delaney has been pushing to finish her semester and exams and feeling cut off in some ways from the hard we lived without her while we were away.

Only a freshman, Delaney is already focusing on post-high school life. I like to believe the independence she has learned being apart from her family many times since Monica’s long hospital stay during her pregnancy with Danica is an asset towards her accomplishing her goals. She sees the world as an adventure but maturely understands planning and hard work are the keys to success. She has a faith in God but knows walking on water is rare and rowing to shore is the usual course. Danica is still recuperating from surgery and will be in a neck brace throughout winter. She will return to school part time at first. Her healing well offers the amazing hope of the most full life she has ever known. Being five years younger than her sister, she still displays the outward affection most teenagers have outgrown. She likes to snuggle and will reach out to hold hands without asking. She is protective of her mother’s feelings and keenly aware of her pain. She will often ask “How are you feeling mommy?” and follow up with a hug. They have a connection that will play out much differently than Delaney and Monica’s relationship. During a particularly painful moment in the hospital Monica said, “She is the bravest person I know,” to which I replied, “It’s like you are looking in a mirror.” I am in awe of them both.

Monica’s health struggles and disability remain and continue to be a source of my weakness and anger. She has been pushing herself since her own emergency fusion just six weeks before Danica’s surgery. She is experiencing unsettling pain on the right side of her skull base. All the signals of an AE/PANDAS flare confirm she needs her next scheduled chemotherapy treatment tomorrow. When her physical condition plummets to these low valleys I am mentally right there alongside her. This is by far our greatest challenge in our relationship. I get my “life” energy from her when we are physically close. As I try to fend off the toll of age by staying as fit as possible, time has ravaged her body. Of prominence is the new long scar on the back of her neck and the way she cannot bend it forward or backward or side to side. I think it makes her look valiant and sophisticated. She has changed significantly since the day we met. I believe God is using her to show us all the true meaning of Grace.

Paul could be blamed for taking pride in all of his extraordinary sufferings in the name of Christ thus possibly placing himself on a pedestal above all other Apostles. But verse nine reads,
“And He said unto me, My grace is sufficient for thee: for My strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.”

Matthew Henry’s Commentary notes, “When we are weak in ourselves, then we are strong in the Grace of our Lord Jesus Christ; when we feel that we are weak in ourselves, then we go to Christ, receive strength from Him, and enjoy most the supplies of Divine strength and Grace.”

No one embodies this verse more so than my wife. In weakness Monica receives the strength to care for others. Her thoughtful care packages shipped and received are familiar to many of you. She is always willing to listen to and provide encouragement to others in need. When possible, the experiences from her twenty-four surgical procedures help many patients answer their own medical questions and concerns. She still believes a slow pen to paper letter is the best means of showing one cares. I’ve seen her work through the great loss of a successful career she loved to the humble place of serving through prayer and encouragement instead of doing. Though her persona may change during times of pain, her trust in God rarely lets her outwardly complain. I admire her passion for books, her commitment to reading the Bible often and her time on her knees at her prayer bench. After all these years of marriage, all of the surgeries and scars, when I hug my wife, it feels like my whole world resets and I can continue on. Holding her immediately gives me calm. There is something about her, about us, when we are together we experience true love and even peace.

In contrast to Monica, I seem to do what is required to make it through the day drawing upon Grace in a different way. God’s love demonstrated to us through you is a huge part of His strength being made perfect in my own kind of weakness. A husband and father wants to feel in control. I want to control our wealth, our health and our happiness. I want to have the power to change what is wrong for my wife and my girls. I am committed to the path that is laid out before me, but I go along often times with resentment for that which I cannot control. My Grace comes from those of you who have taken it upon yourselves to help me support my family. Some of you have been helping us faithfully for the past decade of trials. A few of the many recent expressions of love include my aunt’s elaborate hand-made cards accompanied by prayers and support; My brother’s church in Mississippi sending prayer and support; A friend of my sister in-law in West Virginia with no real family of his own sending Holy Spirit led love at the most needed times over the past few years; Friends who have their own serious health concerns like fighting cancer still taking the energy and resources to encourage and share; Those willing to drive anywhere at any time of day to help, especially since Monica cannot drive since her most recent fusion; Those willing to take in our Laney and our Twixie puppy while we traveled to Maryland; A retired couple with a large family of their own who has adopted us as part of their family including us in an “inheritance” of sorts that our parents are unable to provide; Delaney’s tuition to Lake Center being paid year after year by her great-grandmother; The staggering love through donations from your giving and sharing and praying that have literally given Monica and Danica access to the best medical care possible; Cards and gifts from each family in Danica’s class and surprise caroling at our door to cheer us; Meals showing up on our table from people we’ve never met but are praying for us; Christmas gifts under our tree from many who wanted our girls to have some kind of abundance even in our need…All this and so much more has helped me show strength in times of weakness. Your love has been Grace to me.

Monica tries to write an individual note for every act of kindness, but there is really no way to cover them all. I see her heart to never let even one of you think we take your sacrifices and care for granted. Please know how important it is for me to express how grateful I personally am to everyone reading this. Understand how much we appreciate your time, your generous gifts and most of all your prayers for strength and healing. I hope against hope that 2017 will be a year of more normalcy for our family. Although there will be continued recovery for our Danica incuding careful watch over her fusion and regular chemotherapy for Monica indefinitely we are asking God to give us a year without any surgeries. We look forward to sharing breakthroughs of light and life with you so you can feel part of our success enduring and overcoming all the challenges we have faced through Christ Jesus. I am committed to my family, my marriage and whatever is to come no matter what. At the end of the day, when my two daughters are asleep in their cozy rooms across the hall, my wife is snuggling beside me with her Twixie puppy, and I have but a moment to think about my life, I am spiritually moved to give thanks.

Saturday night, New Year’s Eve, Monica and I plan to let Danica stay overnight at her parent’s house and Delaney with a friend, and we will go on a date and have a night alone in our own house. I emailed Monica last week and asked her to marry me again. I know Grace because ten years of hardship that would have broken most marriages and families apart have solidified a kind of fierce and rare love I can scarcely believe exists. I recently told my girls I wouldn’t change one thing about my life, because if one decision, even the seeming missteps and failures, had been different we wouldn’t be here together now. I’ve lost all control over the things the world tells me I’m supposed to be planning and providing for my family. There is no 401K or college funds or even a nest egg. We may never own a home again. Instead I’ve humbly learned to receive and trust and say “Thank you.” I’ve learned this beautiful way of manna living is as much a miracle today as it was the first time it showed up on our doorstep, and I’ll keep waking up each day calling it gift.

This beautiful Nichole Nordeman song has long been on our family playlist. Gratitude. It’s ALL Grace.

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I Will Follow. We Will Follow. A Dan Post

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Family

It’s been quite some time since I’ve written anything for Monica’s blog. I’ve done Christmas letters and year-end reviews for our family in the past. I usually say something hopeful and overused like, “Next year will be our year!” I am finally realizing this is much like making resolutions you know you cannot keep. My outlook for 2015 does not differ much from what transpired in 2014 or the slowly passing years before. This is not pessimism. It is our reality. The coming winter months are the hardest on Monica. We are one in many ways. Most noticeable is I am not okay when she is not okay. I’m forgetting who she was before all this. I’m forgetting who I was. This frightens me. At the same time I realize this leaving behind our early life together and our old selves is the work of Grace. This change may have never happened had it not been for our countless trials stripping us of all we once held dear.

I don’t write often enough but hopefully this post should develop a common thread for you to follow throughout the paragraphs. I do love to tell stories.

When the very first iPad made its debut years ago, I was fortunate to purchase one with the help of a few donated gift cards to a local retailer. Though I’m in the tech industry and an “IT Professional,” I usually get all the electronic hand-me-downs from my wife who in turn gets hers from her parents. I’m typing on her very old laptop that will lose power without notice as the replacement battery failed months ago. The chance to own an iPad was an exciting surprise. Those with an iPad understand it makes an outstanding gaming station for kids, so it quickly became Danica’s iPad. It was loaded with free games and helped pass the long hours in her little “storm trooper” body cage and wheelchair. My intentions were to cherish this first edition iPad forever until Danica dropped it recently on a cement sidewalk. It functions like new but the glass screen is shattered. I loaded up a few hundred family photos and use it as a digital album now. From afar our family pictures look fine but up close you’ll notice the images have jagged wandering lines running through them.

In our great room we have an entire wall dedicated to “print” family portraits. There are twelve framed photos in all. They are all stunning natural light pictures taken by a friend of Monica’s who has gifted her time and efforts over the years capturing these moments for us. Over our mantel is a beautifully framed piece of art. It is a Marc Chagall etching with watercolor of the Prophetess Deborah. A friend of Monicas collects art and loans pieces to us to enjoy. To round out the room we have an old Craftsman bookcase inherited from Monica’s maternal grandmother. Our full glass storm door allowing the warming and healing sun into our home was a present from her parents. Our living room is basically how Monica and I dreamed it would look but with very little from our own efforts. There is not a day we do not feel gratitude for this sense of place after moving from our home and selling most of our possessions to live in her parent’s basement those eighteen months in 2011-2012.

Early in our relationship and marriage our house was our idol. We bought and sold new homes during the real estate boom. Monica loved interior design. We spent much of our time on weekends hunting for the right furniture, rugs and art for a space. While selling one of our last homes in Leesburg, Virginia the couple who purchased it requested a separate transaction to buy almost everything in our house. I believe God took our home from us so decisively to uproot the temptation to ever make a place matter more than one another. We hold things loosely. We know at any moment this could be lost, and we would survive.

Nice cars were another idol I held close. When money was not a concern I would routinely trade in a BMW for a Lexus or an Audi. I bought an SUV so I could tow my waterski boat around D.C. to impress my then girlfriend, Monica. The car I drove was an important outward display of who I thought I was. God stripped me of all this. If it were not for donations, I could not have afforded any type of vehicle the past six plus years. When Danica was first sick, a foreign exchange student Monica’s parents housed was returning to South Korea. He lived with them for years and became like family. He gave us his old Jeep when he left. It did not have working heat, and I drove it back and forth to Fairlawn during the freezing cold. I loved it because of the kindness it represented and hated it because of the humility it was teaching me. The Jeep ran as long as it could. Many months later, a friend of Monica’s donated his 2003 Mazda SUV to us. It was after owning this Tribute for a while, I no longer dreamed of new vehicles. The car simply runs even though you have to start it twice every single time. The kids actually love the cloth interior, and it hauls my cardboard, glass and plastics and yard trimmings to the recycle center. We have had to put money into it for things you would expect in a car this old, but it is faithful. The friend took really good care of the car, and I am extremely grateful for his gift. It is proof that being good stewards of our belongings pays off in the long run.

Taking care of Monica and our girls is an endeavor I now humbly and gratefully share with many people. The expanding network of love that has grown around us because of Monica’s pursuit of telling our story and keeping relationship is staggering. The gifts I mentioned above are only a fraction of what our family has received since our journey began during Monica’s pregnancy with Danica over eight years ago. From across the United States, here in northeast Ohio and even from other countries, we have opened hundreds of cards and motivational letters. We’ve been given contributions to help meet surgical fees and travel costs, prescriptions and never ending medical bills. Most of all we are covered in countless thoughts and prayers of support. It is an immeasurable amount of love that at first was almost too great for a proud husband and father to bear. It slowly began to change me. It taught me about selfless giving and gracious receiving. It also rearranged my dreams about what I might be able to pay forward someday by the Grace of God.

One of my favorite songs is “I Will Follow” from Chris Tomlin. Though the lyrics may seem simple, the message is often times difficult to accept into one’s life. The song represents the duality in my life comparing my relationship with my wife and my relationship with God. When I return home from work I am constantly cleaning the house, vacuuming, grocery shopping, baking cookies, doing yard work or simple car repairs. I gladly welcome it all. Not only because I have been called to do this, but because my best friend in the world, my wife, and my greatest gifts, my daughters, need me.

I sing these words to my wife whom I love:

Where you go, I’ll go
Where you stay, I’ll stay
When you move, I’ll move
I will follow…

I sing these words to my Heavenly Father:

In you there’s life everlasting
In you there’s freedom for my soul
In you there’s joy, unending joy
And I will follow

This is not the life I imagined when Monica and I first met. This is not the life that makes a man proud. I have few personal accomplishments and almost complete dependency on others. This is the life that makes me grateful for my wife, grateful for our girls and grateful for our friends and close family who show God’s love to us over and over again. I am undeserving of this life, but those of you in our network understand what is at stake. Though the memories are cracked, the family pictured on the iPad is worth fighting for.

We have great plans for 2016. We see 2015 as one of maintenance for Monica’s treatments and more healing. Danica’s Spring Cincinnati scans and appointments represent a huge milestone in her recovery, and Delaney will finish 7th grade. We have said this many times, but it bears repeating. We would not be capable of trust and even peace in the face of despair if it were not for all of you. I now understand you are my friends and family too. We cling to hope. We breathe Grace. We are a family fighting our way through what some days feels too hard. Your love is a strong army behind us. One day we hope to give back in part what we have received. We dream of the ways we could use our story to help others on a similar journey. We know for sure nothing is impossible.

You don’t know my wife the way I knew her. There are parts of her story still to be told. You don’t know my wife the way I love her. When I married her I told people she was a fighter. I never imagined how true this was. We are stronger because of the brokenness. We are one because of the shattering and healing. Together we are finding life, freedom and joy as we follow.

Photo by Grace Designs Photography

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