Lost and Gained. A Team Danica Update
“I have lost nothing
in my life
that I could not find again
with God.”-Corrine De Winter
It’s raining in Baltimore. (Cue Counting Crows.)
Over the past 48 hours Danica’s little lungs have inflated again with vigilant respiratory work. (Think bedside prompting to inhale and exhale deeply into two different devices every fifteen minutes even though you know every breath is hurting your girl in a place you’ve been wounded yourself.) Her lungs are only slightly diminished now. Her constant and sometimes burning hot fever of six days is gone. She’s stepping down from continuous dosage of IV narcotic pain medication to trying oral substitutions in movement towards discharge. She did some tough physical therapy and occupational therapy today. She joined other children for a fun science experiment making snowmen. She had a visit from the most amazing golden retriever, Milo, who loosened a full smile and prompted a deep belly laugh. She had a very painful complete shower. She cried through the entire thing. I felt relieved to see her allowing herself to lean into the truth of this hard. There is something innate from her struggle in the womb, her warrior past and also learned behavior from watching me navigate post-op over and over again…we move forward like soldiers. Dramatic emotion is mostly a waste of time and energy we cannot afford. The next thing comes. We hurt so badly and hope so fiercely we don’t need to even say it. The fact we are still here doing this is the proof.
We thought we’d made the most possible progress. Then the bottom dropped out. Danica refused to take her oral Valium. This is the one medication she needs no matter what. How does a little girl who can brave brain and spine surgery and call her ten pain a three refuse to take a few ccs of liquid medicine from a cup? It’s the second time since being here something prompted PTSD for her as well as Dan and I. We used to have to hold her down to squirt her meds in her little mouth. Often she would spit them out while screaming. She became so worked up, crying hysterically, turning on Dan and I who were trying to be her allies and fussing at the kind nurses trying to help. I called a time out. I left the room. It’s only the third time I’ve looked her in the eyes and told her I needed to step away from her. I found my way into a little sitting area and bawled my eyes out.
Sitting next to a beautifully decorated tree outside the room I remembered it is Christmas soon. I remembered tonight Danica’s classmates were having their Christmas program. I felt this jagged breath of complete sadness. Not self pity. Utter sadness. It was a deep seeded ache for simple milestones in my girl’s life she cannot make up. They are gone. Lost.
It’s easy to feed on loss when days and weeks and months have turned into years of giving up everything we are told means so much to focus on just surviving. Even after ten years there are still those who innocently say something pithy about this being a “season” that will pass for us. They head out to the park to watch their children run and play in the snow or facebook about a special concert or the ballet or a simple shopping trip to the mall to visit Santa. They pick out shiny outfits with matching shoes and decide on Christmas cards. They look at their December calendars full of invitations to parties and celebrations with people who are glistening in the fullness we are supposed to feel this time of year. Real or imagined I see the parts being played out around me like I am watching a perfect winter scene in a snow globe.
This loss is much longer than a season for us. This loss will not pass. This is our life. Wrapped in strange newspaper recycled with the stories of days of exhaustion and pain and long nights in the hospital…tied up with twine borrowed from something useful or given to us in charity our celebration is no less real than yours, but I can promise you it feels different because it has to be.
I think back over our “holidays” since 2007, and there are very few things that look or feel like I think they should. This year is no exception. My Laney will play the flute in her first high school Christmas concert Thursday night, and we will not be there. How many times since she was four years old have I been absent from the snapshot moments of her life? Someone else will take her picture, and I will miss it . . . again. Someone else will post on facebook my brave and beautiful girl, and I will be here losing the moment that can’t be lived again. Gone. Lost.
I’ve not left the hospital since my one walk and shower last Thursday when my parents were here. This is not a masochistic falling on my own sword kind of commitment to Danica. This is love. This is the sacrifice of a mother who is the best advocate for her best care in every detail of this difficult hospital stay. We know the really hard part begins the second we leave and have to do this on our own. Dan must return to work. I will not have a day to crash and regroup. I will need to be with my girl every second she is ambulating. I will be responsible for helping her to the bathroom during the day and the night, bathing her and dressing her. I will keep schedule of medications and document every detail of her recovery. I will lobby for the best home health and fight to get the adaptations we need to make our home as safe as possible for her recovery. My warrior mama heart drives this broken body farther than I ever thought possible. I can only describe this as supernatural strength and great Grace from a good God. Still, I wonder when the crash will happen. Not if it will but when it will.
Dr. Theodore, Danica’s spinal neurosurgeon, came by late this afternoon to check on us and talk about our discharge expectations and possible days and time to see him again in clinic before being cleared to travel home. He did the most telling thing. He came in and sat next to me on the little blue couch, looked me in the eyes and fully heard my questions and concerns. He showed me the first image I’ve seen of Danica’s new fusion hardware. I cried. I’ve felt like 2016 has been another lost year until right now. This image may mean nothing to most of you, but I can tell you it is everything. A second miracle.
We have challenges. My mind is swirling with the hundred things I need to do for continuation of care. We need to buy Danica a new mattress. We need to buy plane tickets home. We need to make further accommodations to our home for Danica’s safety and to assist me in her care.
I need to find some way to make some kind of Christmas for my family.
The day after Christmas, Monday, December 26th, I am scheduled for all day chemotherapy. I have to get one more treatment in before my insurance deductibles reset on January 1. I need to have a scan here in the Washington area to look at my recent fusion. I’ve not wanted to speak of the pain I’m in or the damage I may have done by my participation in Danica’s care the past week.
I’m lost. There is no way to plan these days.
I’m empty. There is literally nothing left in my tank.
I’m afraid. What if my brokenness impedes the best healing for my girl.
He is God. I am not.
This is Dayenu. Enough. More than enough.
Thank you for never tiring in your supplication for us.
Thank you for your giving hearts. It makes some of this needed care a reality for our Danica Jean to give her the most whole life possible. Thank you for showing me grace in slow gratitude for your love. I carry it with me into these days and nights.
Danica is sleeping quietly in the dark room, and I must try to rest before a 4 am med administration and the rounding that begins most mornings around 5:45 am. I cannot wait for a full night’s rest with all my medications on board.
Keep praying! I know He is doing a thousand things in this one thing. I know it. I believe everything lost will be restored in exactly the way Dan, Delaney, Danica and I need and even in ways we wish for.
#SoulBusiness #OurHoperemains #TeamDanica
LoriDecember 7, 2016 at 7:07 am (6 years ago)
Still no adequate words just tears and unending prayers knowing Jesus is absolutely with you, always has been and always will be. I don’t know if hugs through the internet from another state work as well as face to face hugs, I hope they do. You and Dan and Delaney and Monica are a part of our hearts. Thank you for being honest and raw and for inviting others into your pain and your joy. ❤️
Lori & Parker Whitaker
Rhinda HaydenDecember 7, 2016 at 7:36 am (6 years ago)
I have had that moment in the hall! We love you as our family in Jesus, and our family is continuing to pray for yours! Thank you for blessing us with God’s truths and how your lives are being transformed by them in the midst of suffering! They are so very encouraging to our family as we navigate this journey! As your whole family shares in this, please thank them all for us! Gentle hugs!
Angie DenningDecember 7, 2016 at 7:58 am (6 years ago)
Quinn and I pray for you all multiple times a day. You both are conquerers! Rejoice in how far you’ve come! God lights your path!!!! – Angie Denning LCCS
Diane McElwainDecember 7, 2016 at 8:26 am (6 years ago)
Just lifting you and Danica up in prayer just now. Monica, I pray as you struggle with little sleep that God will make it up to you and when you travel home that God will float you easily in that airplane. It grieves me to hear of such loss of memories, but you have hard memories that will make your family stronger as you lean into God. Praise His name for he holds you in his hand and nothing can take you from the Father! God is with you!
DebDecember 7, 2016 at 8:45 am (6 years ago)
Thank for sharing! I pray you and your will have a Merry Christmas! Mostly I pray for a speedy recovery for your baby girl. I pray for your treatment go well and you will recover quickly as well
God bless all of you!
Jeanne DamoffDecember 7, 2016 at 9:45 am (6 years ago)
Thank you for putting words to this journey. You, your wisdom, your faith, your honesty — such a gift to those of us who get caught up in false snow-globe expectations and miss the raw reality of life: Jesus born into a filthy stable to die a gruesome, humiliating death on our behalf. And even as I pray He will lift this weight of pain and brokenness from you and your precious child, I realize you are closer to the holiness of Christmas and Christianity than anyone else I know. Oh how beloved you are of the Father. May He breathe on you today and cause you to stand on your feet, leaning into hope and abiding in grace. Endless prayers for you and so much love and admiration.
Jane A PierpontDecember 7, 2016 at 10:44 am (6 years ago)
Heartache and calling out to God for your very detailed and demanding needs. HE has and is the answer…. Praying still
Susan BaroneDecember 7, 2016 at 11:59 pm (6 years ago)
My heart hurts with yours and I couldn’t stop the tears either, but I must say that the sentence that made me inwardly cheer is: “My warrior mama heart drives this broken body farther than I ever thought possible. I can only describe this as supernatural strength and great Grace from a good God.” God does amazing wonders working through us. I’ve had to rethink what makes a great Christmas because I too see all the “doings” and know somehow I’m missing out because we have no children. Today, I talked with a mom of two servicemen, one in the Army and one in the Air Force. She was sending another box, she said. One is in Kuwait and one is in Jordan. She was talking about how little they have. She sent her son a blanket off the bed he sleeps on when he visits home. She washed it with Downy and put in dryer sheets, too. He said it smelled like “freedom.” This time she was sending tuna and soy packets. So many little comforts from home. I was humbled, but I was lifted by her story. I am humbled when I likewise read about such a stretching in faith for you and for your family and I am lifted by your courage and raw honesty as a woman of faith. I will pray that you receive all that you need and then some, and, yes, I fully believe God restores.