“…These are such small decisions, really. But aren’t they all? Trying again. Getting back up. Trusting someone new. Loving extravagantly inside these numbered days. Someday we won’t need to hope. Someday we don’t need courage. Time itself will be wrapped up with a bow, and God will draw us all into the eternal moment where there will be no suffering, no disease, no email. In the meantime, we are stuck with our beautiful, terrible finitude.”-Kate Bowler, No Cure For Being Human (And Other Truths I Need to Hear)
Finitude. The state of having limits or bounds.
I was introduced to this word in Kate Bowler’s newest book, and I’ve held it close as my girls and I continue to press against the physical limitations of our bodies while our hearts ache with a seemingly endless capacity for loss and grief wrapped tightly in gratitude. I’ve not written here or really at all. I have met the frustrating bounds of my own ability to process suffering through words. This has been perhaps one of my greatest wounds ever.
Early this morning Danica’s 8th grade class left for a week long trip to the east coast. Ninety-one students and chaperones are traveling to Washington DC, Virginia, Maryland and Pennsylvania to tour some of the most important places, monuments and museums of our country and to be together, forming bonds with one another they will carry into their high school years. She is not with them today.
Initially we didn’t consider her going because the trip costs thousands of dollars per student. We talked about the emails coming in over the summer. Danica has always been quiet about wanting anything. She knows how much healthcare two thousand, eight hundred and sixty-nine dollars buys. When I was in Ohio in early July for my Rituximab infusion a woman from Danica’s school called because she didn’t see her name on the trip list. I explained the particular constraints of our family finances. She prayed with me and told me there are generous people committed to helping with this specific trip. She urged me to register Danica and believe God would make a way. Of course, He did. He always does.
I flew back to Arizona on a Wednesday. The next morning I drove Danica across town to meet with the cardiologist who performed her tilt table test several weeks earlier. Her symptoms of Dysautonomia and POTS (Postural Orthostatic Tachycardia Syndrome) present differently than Delaney’s or my own. Her heart would begin to gallop dangerously while simply making her bed in the morning. She struggled to walk up the hill in our neighborhood. She would need to lie down and rest after taking a shower. She was exhausted all of the time. The doctor immediately prescribed her several medications including a very expensive drug used in rare cases like hers. He referred us to a Phoenix Children’s pediatric cardiologist to manage her long term. It was just a few weeks until school started. We knew Danica needed real cardiac improvement for her to be able to attend in person school at all. If you follow my now infrequent social media updates you know about our insurance company’s denial of the critical drug and how we cash paid week after week during multiple appeals and then ordered it from Canada and continued to cash pay waiting for it to ship and arrive. We saw our girl drastically improve on her medications. Her heartrate slowed, and she could handle more activity. She began school with additional restrictions in place but making it through entire days.
We seek to discern the will of God in our lives, especially when we are faced with big decisions regarding our health, through prayer and provision. This is the gift in the gauntlet. When the funds were anonymously given to the school for Danica to go on this trip east, a trip she secretly wanted so badly, we were all in. For those few weeks when Danica thought she might go she was lit up. My dad gave her a nice camera to take special photos. She made a list of clothes she would need for a week of real fall weather. The school was having frequent meetings with the kids about the trip and took roommate requests for the hotel stays. The excitement was building. Then we received the actual trip itinerary.
It was immediately clear to Danica there was no way she could physically do this trip. From early morning until late evening they would mostly be on their feet and walking or standing. There is very little if any time for rest between a packed schedule of touring. With limited chaperones and the bus dropping them in an area for most of the day there was no way to make accommodations for her either. We sat together that night and cried. Danica’s heart was broken. My heart was broken. But then my girl looked me in the eyes and said the thing I’ve preached for most of her life, “Mom, It’s okay. Option A is no longer available. We will find an Option B.”
Since then I’ve been thinking of something I wrote on the old Team Danica blog in 2013. It was a a post titled ‘It’s Just Not True’. It’s long, but I will share the entire text here:
“Before our children were even born we began dreaming for them about what their lives might be like. We hoped and prayed for health and happiness and some measure of success while doing something they loved. We wanted them to know the joy of giving back to the world in a meaningful way. It seems we began to whisper the “lie” to them in our arms as wee babes, “You can be anything you want to be.”
Yesterday our Danica had her last day of preschool. There was a time we couldn’t have imagined her independently learning and socializing and being safe. Because the weather was so cold and icky the preschool picnic was held inside. We all spread out blankets on the floor to share the last hour of time together with lunch and goodies. The kids began playing after eating. One of the little girls in Danica’s class had a rhythmic gymnastic kind of streamer. Danica was in love. A group of girls began doing somersaults. Oh my, Danica’s little heart was aching. She was dreaming. As soon as we got in the car to leave she began telling me all about how much she wanted to do gymnastics as soon as her neck was all better. I was quiet. I know we have said this too often. “When your neck gets better you can . . .” We never mean to be dishonest when we say this. There are some things she may be able to actually begin doing if everything is fused and stable in October, 2015, her five year anniversary. There are plenty of things she just won’t.
When we got home she asked to put on the American Girl movie “McKenna”. Later I heard thumping in her room and rushed in. I could tell she was trying to do some kind of gymnastic type moves on the bed. I sat down, and we talked about it. I reminded her how much we had invested in her neck and how well she was doing. I talked about how even though everything seems all better she is still growing and fusing. Now is just as important as ever to obey Dr. Crawford and be careful. I explained this was not a punishment for anything. It is just part of her special life. She told me there is a gymnastics place close to our house where her friends “train”. She asked if as soon as her neck was healed she could begin. With tears in my eyes I told her the truth. Finally, I was brave enough to say it. “Honey, you will never be able to do gymnastics. It is too dangerous. There are hundreds of other things you can do, but this isn’t one of them.”
It would have be easy for me to jump to some kind of story about kids in wheelchairs who are so sick they can’t get out of bed and remind her how incredibly lucky she is. This is the internal dialogue I carry on in my own head when I begin to feel badly about all the things I simply cannot do any longer. No amount of wishing or hoping or willing or trying will make most of my old dreams a reality. I know many who are worse off than I am. If I focus on that won’t I be more grateful? Theodore Roosevelt said, “Comparison is the thief of joy.” I used to think of this only in relation to people who had the good, better and best I desired. I realized yesterday comparison to people who have less can also be a bandit. Growing up my mom would often tell me how much worse something could be to try to bring my heart back into a right place. I know she meant well, but it frustrated me. Our family was in ministry. There were always people much worse off. This too was taking away cultivating authentic gratitude for my right now, exactly how it was, whatever it was. I’ve wanted to change this in my parenting, but it’s a strange default.
Last night Danica decided to have a sleepover in my bed. It wasn’t even dark yet and we snuggled under my covers. We entwined our fingers, one of my favorite rituals. Our breathing became the same. I never knew a child could be so connected to their mama in this many ways. Danica’s sweet little voice said, “My neck and my head hurt so bad, mom.” Yes, my child, I know exactly how it feels when you push your body to do something you want so desperately but God just didn’t intend. Tears welled up as I rubbed her little spine and the base of her neck.
We can’t be anything we want to be.
We can only be what God intended.
Aligning these two can only bring real peace and happiness when we admit the loss and grief are oh so real too. Our days are written. I have been feeling a little better (I promise to tell you about all this soon), and I find my head pushing my body to get as much mileage from what could be fleeting good days. I end up hurting and cycling back to discouragement and discontent instead of the real gratitude I should be experiencing. I am so much healthier today. This is my joy. I want to tell the truth about all this to my girls. I want them to believe in impossible things but temper this hope with the realism that brings them continually to God’s plan for their lives.
“Your eyes saw my unformed substance;
in your book were written,
every one of them, the days that were formed for me,
when as yet there was none of them.”-Psalm 139:16 ESV
Today Danica and I will pack for a little trip we’ve planned to San Diego. It’s our Option B. We’ve made a list of the few things we’d like to see or do there, but we will take breaks and afternoon naps and know it’s all flexible based on how each of us are feeling. We are admitting constraints. Oh how I pray we will fill our time together with curiosity and discovery while resting in our beautiful, terrible finitude.
Thank you for your continued love and prayers even when I am so very quiet in all the places I used to tell our story. November 1st Delaney and I meet with her neurosurgeon and will set a date for her December fusion surgery in NYC. We cannot see our way from here to there. My mother grief is a brand I’ve never tasted before. I’m broken in new ways. I am terrified this will be the surgery that takes medical trauma too far for my girl or derails her from her college classes or her job at the art museum. She is pushing herself past her bounds right now. I taught her that. I pray I’ve taught her as much about surrendering things that are no longer true, allowing herself to mourn them while genuinely trusting God’s Option B for her is the best. I will update here and on her gofundme when plans are made. We will need your prayers and help.
Audrey Assad’s Shiloh has been on repeat for weeks here. It’s my prayer for both my girls.