Struck. A Team Danica-Monica Update. And a Giveaway
I get the notification every day on my facebook feed. You have memories. Most of the time they include a blog post from the old Team Danica blog where I was much more faithful about writing for you. They also include status updates about pain, sickness, medical tests, treatments, surgeries and hospital stays. Either I am asking for prayer and support or thanking you for it.
I’m tired of our story.
I’m sure you must be too.
Danica’s healing since her surgery has been a miracle. You know I don’t use the word without understanding the full weight of it. Our joy in the excellent news during her visit to Hopkins several weeks ago and celebration of removing her neck brace has been tempered by my suffering.
After a random April snow last week I’m convinced spring is here to stay. I am wildly in love with the birds and blooms. I want to slosh in the mud and hunt all things new. I want to sit still and study the rebirth of dormant life. This is the season when my hope is made visible. It is also when my mast cell disorder explodes. My skyrocketing histamines raise my intracranial pressure in tandem. My already hurting head and accompanying symptoms are somehow worse on these pollen soaked sunshiny days than when the roller coaster barometer reeked havoc on my fluid filled brain. I forget this happens every year. Social media memories remind me.
It’s holy week. Danica has been sick with a fever and headache since Saturday and home with me. After Dan and Laney leave each morning we’ve been reading through the Old Testament prophecies and New Testament Gospel accounts of the days leading up to Christ’s death and resurrection. We aren’t at the foot of the cross yet, but we see the sadness of Jesus as He nears and hear His aching lament. It comforts me to know my fully God yet fully man Savior understands the cry of a heart that trusts my Heavenly Father but wails just the same.
Tonight I am crying out.
It’s been hard for me to read and write since my shunt failed. I have always said the pressure is the one part of my complicated diagnoses that I cannot live with. A year ago I was so desperate I wanted to die. After three failed LP shunts God directed me to a vascular neurosurgeon at the University of Virginia who had only recently begun seeing EDS patients and was brave enough to help us. The VP shunt he placed gave me complete and lasting relief for almost a year. I didn’t take a day of it for granted. No matter how broken the rest of my body is I most desire to be mentally and emotionally able to think clearly, read, write and learn and form and nurture relationships. When my pain and brain fog cloud these abilities I become frantic. I’ve come to terms with all the other loss and disability, but I beg God to leave the core of who He created me to be in tact. My habit of voracious reading comes to a snail’s pace when I am in this much pain and lose so much vision in my right eye. I edit my list of books and slog through the ones I most want to read. “Struck: One Christian’s Reflections on Encountering Death” by Russ Ramsey moved to the top of my stack.
I read it cover to cover in one sitting. Like always, I read with a pen to mark up the margins and a journal to copy words I needed to save. I have to admit there were points in his story I felt upset. All the things he was experiencing with one sudden diagnosis, surgery and recovery I’ve been through repeatedly. In the last ten years many people have begun a conversation or note or email with something like, “It’s nothing compared to what you are going though…what you’ve been through, but…” I cringe. Every time I cringe. Here’s the thing I always tell people who are going through different but no less hard things,“There is no monopoly on suffering.” Once I got past the self indulgent contrast between my life and his I began to gobble his experience seasoned with truths.
Days before I picked up “Struck” I’d read an article on Desiring God by Matthew Westerholm titled “Lament Like a Christian Hedonist: How Joy in God Bears Real Pain.” I book marked it and returned to it several times. I found comfort in the reminder it’s biblical and okay to wrestle hard with your hardships. It was this prepared soil the seeds of chapter fourteen fell.
Because the Lord often withholds explanation for our pain, we must not look at suffering as though it is some divine gimmick designed to teach us some important life lesson. That would make too little of the reality. God’s people do not walk through suffering toward the moral of the story. Rather, we walk toward the eternal presence of the Maker and Love of our souls, This I must remember…Suffering is not an event. It is a path…There are plenty of advisers out there who would counsel me to dress this up with positive thinking. But I do not think it would be honest to try to pad my experience with cleverly contrived optimism that denies what is true. My faith in Christ provides a deeper, truer way. I want to feel my sorrow. I want to walk in it. If the Lord walks there with me, what possible advantage could there be in conjuring any other way? No, I choose the road of suffering, and I pray for the courage to walk it honestly. The truth is my heart is broken. I need time to say as the psalmist said, ‘When I remember God, I moan, when I meditate my spirit faints.’ As part of my confession of faith, I need to say that I am not okay–not completely.
Tonight I am not okay. I can beat on the breast of my Father God, and He will hold me close and listen to every cry. “Though I continue to ask why, more often than not the question on my mind is ‘What’s Next?’ Sometimes He will answer, sometimes He will not. And I will again have to lean on what I know of who He is when I cannot make sense of what He allows.”
The God of the universe. The same God who sees Syria tonight. The same God who sat with my beloved friend this afternoon as she met her oncologist to see if her brutal cancer treatment is working. The same God who watched my sister and her family bury their dear Pops today. The same God who sits in the psych ward at the bedside of a fellow zebra’s husband who tried to take his life because he cannot bear to watch his wife and children suffer any longer. The same God who formed my Danica in my womb, fearfully and wonderfully, errant DNA and all and knows why she is running a fever for so long. The same God who sees my CSF logged brain and feels the bulging behind my right eye. He is good. He suffered hell for me. Love like that can be trusted with ALL THIS.
As I lay my throbbing head on a tear soaked pillow tonight I pray Russ’s song of lament:
Lord, You are with me. We walk through the valley of the shadow of death together. Since I do not know the way, I have no choice but to trust You. To trust You means I walk a steady path believing you are with me. The sound of my footfall echoes the two operative words you use to call me to the communion table–remember and proclaim. I remember that You are a Man of Sorrows, acquainted with grief, and I proclaim that I have no better guide. I have no better guide for two reasons: because You are God and because no one has stepped forward to lead me in a worthy manner. So I follow. What else can I do?
I haven’t asked for prayer lately.
I am tired of our story.
I’m sure you must be too.
But God is not tired. He does not grow weary or faint. Danica asked me to post something on facebook this afternoon when her fever spiked. Her childlike faith remembered your prayers for her miracle and wanted the same prayers for her sick body now. I was humbled. Won’t you please pray for her tonight? If she is still spiking by morning we will head to the children’s hospital. Please pray for my brain. I am terribly anxious about our trip to Charlottesville on Monday and my procedure Tuesday and what the next steps might be. I am terrified of a shunt revision. Please pray for Delaney. She is so sad about Dan and I leaving next week. She wants the joy of the sunshine and warm breeze to play as a song in our home instead of the dirge of sickness. Please pray for my Dan. He worked overtime this past Sunday offsite to help pay for another expensive medical trip, and he is working all week and then Saturday and Easter Sunday so he can take the days off to drive me to UVA. He is exhausted. He comes home to do laundry and dishes and look into the faces of a woman and children he loves desperately and wants to save somehow. Please pray for healing and provision and strength and Grace to do each next thing we think we cannot do.
Our Hope Remains.
What is your song of lament tonight?
I’m listening to Michael Gungor’s “Beautiful Things.”
I’m giving away a copy of “Struck: One Christian’s Reflections on Encountering Death”. Comment here on the blog or on social media with your heart cry by Sunday night. I will randomly choose a winner from the comments and send you a copy of this special book.
Rhinda HaydenApril 12, 2017 at 10:06 pm (6 years ago)
My heart wishes our family was closer to walk this journey with you! Our hearts understand this! Please tell, Danica we are praying as a family for you all!
LoriApril 12, 2017 at 10:47 pm (6 years ago)
Oh sweet friend. Even in this you are still giving. Your beautiful heart and spirit reflect Jesus all over this place. I just love you and I’m encouraged deep in my soul. And I’m praying for all of you. ❤
Caroll AleshireApril 13, 2017 at 6:18 am (6 years ago)
I am praying for both you and Danica. May the surgery or procedure on Tuesday be wildly successful, and bring long-lasting relief. I am also praying for Dan, that he would get physically rested and refreshed, even from inadequate sleep, and that you would have a safe trip. I have prayed for myself that suffering would result in glory for Him. It is difficult not to complain, especially given that my suffering is tolerable, but the constant pain is wearing. Praying also that somehow Dan would be able to at least listen to an Easter service or cantata. Praying for spiritual refreshment.
Emma HenkelApril 13, 2017 at 9:44 am (6 years ago)
Dear Monica, Love you so much. My heart aches for you. Praying for you and Danica, also your dear family. May our Lord continue to bless all of you as you draw nearer and nearer to Him.
Donna NixonApril 13, 2017 at 11:27 am (6 years ago)
Sometimes I follow from afar, as I try to make it through my own trials.
I remember so well being at DCH during the Easter season in 2012. I remember how walking that painful path with Christ as I lay there in that room blessed me with such courage in a way it had never done before.
I was researching and believed that stents in my brain was what I needed. My throbbing head seemed minute in contrast to Christ’s throbbing heart as they crucified him.
This Easter, my heart aches for my 33 year old nephew who is a quadriplegic after a freak accident. Doctors say pit him in a nursing home because nothing will ever change.
Christ arose from that grave so I KNOW that He CAN heal Jason. I continue to pray for you and Danica. Your card is in my prayer journal to constantly remind me. I love you sweet friend and pray that God would pour his blessings out upon you. Much Love!!
JuneApril 14, 2017 at 3:05 pm (6 years ago)
Praying for you, Danica and the procedures next week. Monica, your story is important because He is in the midst of it. You’ll never know how He works through your words, your honest, tender, sometimes heart-wrenching words to bring encouragement and hope. Bless you and your family. May Easter be a time of renewal for you all.
TatiaApril 14, 2017 at 4:09 pm (6 years ago)
Sweet Monica…My heart is gripped by your honesty, heavy with the weight of your words, and yet – rejoicing in your ability to SEE Truth, to CHOOSE Trust, and to MAGNIFY the Lover of your soul. God has gifted you; how else to explain that we’ve never met but, through your words, I feel such connection to you?
I am sorry that you are tired of your story. I understand.
I ASSURE you that we ARE NOT Tired of it. There is HOPE even in your confessions.
Praying for God’s Will, God’s Presence, God’s Provision yet again as you follow Him on this HARD path. You are right – He makes beautiful things…YOU and your Danica, and Dan, and Delaney are all His beautiful things.
May the Lord bless you and keep you; the Lord make His Face to shine on you and be gracious to you; the Lord turn His Face toward you and give you Peace.”
Katie EricksonApril 14, 2017 at 7:16 pm (6 years ago)
Oh Monica, I’m so sorry I’m finally getting around to reading this latest blog. My heart aches for yours. Please never think that I am sick of hearing your story. It’s not your fault that you are going through all this & have so many obstacles to get around, through, over, under…. You inspire me every day. Your story gives me more strength to get through all my worries with Theo. I pray Danica is feeling better, Delany sees the sun shining through the house soon, Dan realizing what an amazing husband & father he is and that during your trip Monday that the sun shines in on you two so that you can imagine being on a vacation instead of a trip to the hospital. Last but not least I pray for you Monica. I pray that you keep being strong, that you find your answer on Tuesday and that you get relief. You are an amazing warrior. Never give up the fight! Hugs momma!
Amy SmithApril 15, 2017 at 8:02 am (6 years ago)
I have nothing of value to say. I too have been blessed by this special book, and I am grateful it has been an encouragement to your weary heart. I’m sitting with you in the hard, in the unknown, and trusting our kind Father to carry you through. I love you Monica. I’m carrying Danica’s mat to Jesus. Xo
Matthew WesterholmJune 26, 2017 at 6:54 pm (6 years ago)
Honored that the lament article served you and your faith.