I hate I wasn’t there yesterday to celebrate you. Delaney and I are in New York for surgery and you are in Arizona with Danica and Twix. We’ve been apart for so many ‘special’ days I quit trying to quantify the loss, but it still hurts. As I read other’s facebook posts about their husbands and fathers and even wrote something to my own dad I realized painting your love with a broad stroke and a few words wouldn’t do. I refuse to romanticize the way you care for us. This kind of long faithfulness is hard and messy work. Last night I searched all the blog entries you wrote on the old Team Danica site and ugly cried my way through them. Your unique voice in all this suffering is necessary and true.
Less than a month ago, on the night of Delaney’s ‘actual’ graduation, you picked up tacos for dinner on your way home from work. Delaney was hurting that day and made the decision she couldn’t physically go to the graduation watch party planned. We all felt a strange grief choking us. When you arrived the girls were grabbing paper plates and napkins and getting glasses for drinks and there was a general sense of rushing to eat. Danica sat on the end of the bench at the table and Delaney pulled out the other end quickly. Danica fell backwards off the bench and hit her head. You lost it. You didn’t curse or yell. Instead, in a pained sarcastic way, you clapped loudly. The incident triggered something in all of us and dinner was over before it began. After we were sure Danica was physically okay Delaney ran to her room and sobbed her heart out. You retreated to the hammock in the back yard feeling awful. You explained how almost every minute of every day you are holding your breath waiting for the accident that breaks Danica’s hardware and fusion again. Most of the time you are able to keep this feeling out of reach but when something like the fall happens your heart is split open for us all to see. I carry this fear too, but I shine it up with faith to make it more bearable. There is something about Delaney’s Chiari diagnosis that’s exposed us in new ways.
The mood stabilizer I take keeps me steady most of the time. Once in awhile I open the flood gates with you. You let me say the same things over and over. I tell you how I don’t think I can embody this pain one more day or continue to watch our girls suffer. You see me and you hear me, and it helps me go on. I wipe my tears, blow my nose and make a plan for the next impossible thing. I go over the appointments, the insurance battles, the money that isn’t there and the bills I’m prioritizing. I talk about the girls and their emotional needs on top of the physical stuff. This is my way of trying to maintain some control in a life that is almost nothing like we thought we wanted it to be.
Somewhere in the midst of our mess, you have this other world to manage too. You leave the house at 4:30 am every day to work. I don’t think you’ve taken a true sick day in over a decade. You have never complained. Our family has always come first and any personal ambition or desire for success has taken a back seat to the need for steady insurance coverage and a schedule that allows you to be there in the afternoons and evening when my spoons are gone. Moving to Arizona to start over with a company that has no understanding of our complicated medical journey has made it even more difficult.
No one really knows the Dan I first met and fell in love with. The Inner Circle award winner. Your life with the trips and recognition. The bonuses and stability. The social network. The friends. Golf. Your luxury car. Your boat. Your motorcycle. Things that made a life outside of what I was to you. I have seen you sacrifice everything down to the most humbling day when I gave you my beautiful diamond solitaire in the red and gold box to sell for bills. The stone you studied and chose. The perfect carat with perfect color and clarity you had worked so hard to pay for and gave me on the beach in Kauai. You brought me the setting back empty, and we both cried. Nothing was sacred in our desperate attempt to stay afloat.
I have never seen or heard or read in a fairy tale or real life about a man who loves like you do. A chronically ill woman once compared her steady husband with you. She said something that shocked me. She said, “Most men would have left women like us.” Here’s the thing. I have never once felt like you would leave me. Your love is that sure. You are a mirror of God’s love. When I can do absolutely nothing to be your help you still cherish me. When the only physical connection we can make is less than a hug because of my pain you sniff my neck deeply and sigh, not out of frustration but as if you are still intoxicated with something only you know resides in this shell. You treat me like a soul. You respect me. You forgive me over and over again for the hard edge I carry most of the time. You are so fierce in your commitment it frightens me, because I still can’t believe it’s possible.
I want to do something huge for you. I want to give you a break. I want to spend a week with just you and feel even a fraction better than I do now so I can give you all my attention. I want you to know friends again and have something to say to anyone besides how hard it is all the time over here. I want you to experience recreation or pleasure without a single shadow overhead. I want to sit in the sun with both our faces burning and feel the exact same release at the exact same time and say together, “This is good.” I want you to feel the escape you loved about riding your motorcycle alone on a spring day in Maryland down an open road lined with flowering pear trees. I want to have a meal with you and not think about what it costs or what in it might make me sick or how long we have before I crash. I want to taste every single ingredient and talk about them and sip the notes in our wine like a symphony and tell the truth in the clear way we used to on special nights alone. I want to be healthy for just one more night so I can make love to you the way I used to, when our bodies and spirits were so melded it was as if you were wearing my skin and I was wearing yours. I want to laugh out loud and not have it catch in my throat like a knife. You always make me laugh. I love how you make me laugh.
So much of your love is about Delaney and Danica too. I don’t know any other man who works all day and comes home to work just as hard. You don’t sit down until you have a load of laundry in and the dishwasher emptied and coffee ready for the next morning. You run the vacuum and ask me what else you could possibly do to make something easier or less painful for me. On nights I know you are starving, you will eat a bowl of cereal without complaining because I just couldn’t make dinner and nights I do cook you tell me how much you appreciate it. “Good job, Monki.” And in those words you are saying so much more because you know how much it hurt to stand and stir and lift and open and shut to make a simple meal. You step in for carpool and shopping and every endless outing moms have to make when I can’t. When I try to go along you have my back and see the look in my face when I’m done. You protect me even from our children on my hardest days. This hurts us both, and I don’t know any other man who is this brave.
I pray for you. I ask God to give you the strength you need to keep doing this impossible thing you have somehow made possible for us. I beg Him to bring you rest or relief or joy of any kind. I thank Him for you so many times every day and every night.
I know we quit looking for the reasons all this happened to us. I know we stopped believing it was punishment for something we did. I know we quit asking almost all the whys and have learned together to take it minute by minute, hour by hour as it comes. I just have to say it over and over. There is no one else who could have stood in the stormy waves this long and not turned and swam to save themselves. You were made for me. You were made to love Delaney and Danica. Every part of your life until our life began made you ready to be the man you are.
Two silly words.