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