Monday, May 19, 2014
“The cynics, they can only speak of the dark, of the obvious, and this is not hard. For all it’s supposed sophistication, it’s cynicism that’s simplistic. In a fallen world, how profound is to see the cracks? The sages and prophets, the disciples and revolutionaries, they are the ones up on the ramparts, up on the wall pointing to the dawn of the new Kingdom coming, pointing to the light that breaks through all things broken, pointing to redemption always rising and to the Blazing God who never sleeps.” Ann Voskamp
I never take this for granted. The way the evening light slants through my west window and falls across my bed. Everything changes as the sun slips further away. The window is open, and I hear children playing and birds singing. This bright air is the stuff I longed for, hoped for, begged for when I was in the basement. Remember those days?
Last Tuesday I somehow stumbled into the emergency room with the most painful headache I've ever suffered. Yes, I know, it's hard to quantify my head and pain on any traditional scale, but this was the worst. It began on Saturday, following the IVIG infusions and escalated. By Sunday night I was throwing up from the pain. All common sense would have sent me seeking help on Monday, but I hid with my face under the covers to try and wait it out. I made deals with God about what else I could offer Him in exchange for keeping me out of the hospital again. By Tuesday morning if I stood up at all it was like an ice pick was being jammed in my brain. It made me stumble and fall over. In my pride I did not communicate the seriousness of my condition and foolishly drove Delaney to her career day at a local furniture and design shop. I somehow made it two more exits to the ER.
Dan and I always joke it will be my NOT seeking medical care that will eventually kill me. I know that is hard for you to imagine since I am always at the doctor or hospital, but believe it or not I avoid seeking intervention at the worst times. I knew in my heart there was something very wrong with me, and I would be admitted. I just couldn't bear it.
The ER team at Mercy was wonderful and understood the complexity of my conditions and called my neurosurgeon in Maryland immediately. He ordered an LP which showed heightened white cell count as did my blood. I had aseptic meningitis. This is not caused by a bacteria but rather from some kind of chemical or virus. About half of aseptic cases are caused by Cocksackie, strangely enough one of the persistent viruses we were attempting to treat with the plasma exchange and IVIG. There is no way to be sure if it was the IVIG or Cocksackie or another virus. I drifted in and out the first days in the hospital. I know I had phone conversations and visitors and even posted on facebook, but I don't remember most of it. I had the best nurses and an amazing infectious disease doctor and neurologist overseeing my care. They were so kind and let me advocate believing I was the one who understood my body and medical history the best. The outcome was good even with some usual bumps in the road. What we know for sure is IF IT CAN HAPPEN IT WILL HAPPEN to me. This was a reminder to me to read the fine print and ALL the risks, because I'm likely to fall in that category. Even the most annoying things like my bladder refusing to empty after lidocaine in my back and the ridiculous tongue thing swelling up tonight that ALWAYS plagues me after IV antibiotics are maddening but almost expected now.
When I was released on Friday I felt numb. I truly hadn't prayed at all those days in the hospital. For many reasons it was the absolutely wrong place at the wrong time for me. I was sure God had really messed up this time. I came home and fell into bed. I don't remember ever sleeping as long and as soundly as I did Friday night, all day Saturday and Saturday night. I didn't take any of my medications. I just slept. I sensed the family was moving around me in their normal routines. I don't remember eating or getting up to go to the bathroom, although I'm sure I did. I only remember sleeping. Sunday I woke up and felt wicked weak. I knew I had to face what happened mentally, emotionally and spiritually, but I couldn't bring myself there. I watched twelve straight hours of HGTV. Yes, I was still numb.
I woke up this morning with a choice. I could crawl back in bed and sulk another day or put on my big girl panties and start going through the motions again. I threw open the windows and turned on praise. I ate oatmeal and got on my knees at my prayer bench with absolutely nothing to say. Like so many times before the ritual took my hard, cynical heart and moved it into a softer place. I am convinced I cannot get on my knees with my head bowed and not find Him waiting there. I begin to let go, repent, release all my expectations for the past week and look closer at what He is really doing. It's like Ann writes,
“Humbly let go. Let go of trying to do, let go of trying to control, let go of my own way, let go of my own fears. Let God blow His wind, His trials, oxygen for joy's fire. Leave the hand open and be. Be at peace. Bend the knee and be small and let God give what God chooses to give because He only gives love and whisper a surprised thanks. This is the fuel for joy's flame. Fullness of joy is discovered only in the emptying of will. And I can empty. I can empty because counting His graces has awakened me to how He cherishes me, holds me, passionately values me. I can empty because I am full of His love. I can trust.”
He only gives love.
I can trust.
I showered. I shaved my legs. I blow dried my oh so grey hair. I put on tinted moisturizer and some lip gloss. Looking in the mirror I only see glimpses of who I think I am. The jagged scar at my neck from my cath and the pic line hanging from my doughy arm reminds me I am wasting away even as I fight to hold on. I put on one of my word necklaces. It says "restore." I hold it in my fingers a moment and recite the verse, "He leads me beside still waters. He restores my soul."
My angel friend comes over and picks me up. She texted early to see if I was ready to face the world. She took me to a beautiful path for a short walk. There were whispering trees overhead just filling in with leaves. There was a small creek running along side us. The sun was the perfect mix of warmth with the spring breeze. I took a breath. I turned my face toward the light. Just like the getting on my knees, this ritual of walking, moving one foot in front of the other when I don't know what else to do or what else matters any more is the body leading the mind and the heart. This sacred practice moves me closer to Him and the light that breaks through all thing broken.
We stopped at the grocery store, and I bought real food to feed my family. It seemed a small thing, but if you could have seen the look on my girl's faces when they saw we were having chicken and potatoes and peas instead of Wendy's drive thru. Another simple habit we hold dear in our home. It's the breaking of bread. It's THE GIVING THANKS. It's the waking to gather manna for another day.
He only gives love.
I can trust.
Just like that I lived a day. A real day. I wasn't numb anymore. I felt joy. I felt gratitude. I felt hope. The sun is almost gone now, but I carry a light inside me into this night. It breaks through all the broken things from this past month . . . this past week and refuses to be snuffed out. "It is pointing to redemption always rising and to the Blazing God who never sleeps."
Posted by Monica Kaye at 7:14 PM
Saturday, May 10, 2014
The smooth notes of Ray Lamontagne's "The Best Thing" swell on the stereo. The girls are playing with the miniature doll house and have been for hours now. I hear Danica's near pitch perfect whistle along with the bluesy tune. It's one of those rare and extremely peaceful times when the five years between Delaney and Danica do not matter, and they are simply sisters lost in a pretend world together. I am exhausted from driving to Walgreens by myself to get Mother's Day cards. It felt good to brave the car and the road and the store all by myself, but I felt a little panic too. I am coming to understand my courage comes in fits and starts. I am perhaps one of the most daring people you will meet when it comes to the ability to push myself and do almost anything independently. Most people were stunned I did most of my hospitalization in Maryland alone. I chose to be discharged alone and fly home alone last Saturday. These decisions are purposefully made in sacrifice to keep my girls here, safe, in their own beds and their own home with Dan and my family who will care for them the next best to how I would. I have consciously chosen to have less personal support so they would have more.
Delaney wanted to go to a sleepover tonight. I don't know the family well at all. It's my first weekend home, and it's Mother's Day tomorrow. I said, "No." Delaney cried and begged. I offered for her to go hang out with her friends, but I would come get her at bedtime. I told her I want her here, across the hall from me to sleep. She said the words I know are true, "Mom, I just wish you weren't so OVER protective ALL THE TIME." She's right. I am. I wasn't like this when she was young. Yes, I was vigilant about the right car seat and sunscreen and anti-tip wall anchors, but I was much more trusting of others and nurtured her free spirit. Since Danica's neck went crooked everything in our lives is a calculated risk. Delaney has paid a high price for all this. I choke on knowing for sure I may have robbed her of something I simply cannot return now.
I read Ben Carson's book "Take the Risk" again this week. I don't think I've pulled it off the shelf since 2010 when we were making huge decisions regarding Danica's surgery. I raced through his wisdom about the right questions to ask when making important life calculations, especially big medical ones. Towards the end of the book he specifically talks about the risk of parenting. He shares how developing young adults need to be allowed to have "acceptable" risk in their lives to redirect what can become dangerous risk taking behavior. I've taken this to heart as I watch my girl this weekend. Delaney is eleven going on twenty. If you know her you understand what I mean. I trust her with so much. Still, I am fiercely needing to keep her safe. Sleepovers are a danger zone for me. The first time I was exposed to pornography was in a church family's home at a sleepover. I always had a buzzing sense of inappropriateness at their house and still I never told my parents and stayed their dozens of time as a child. I know this is perhaps a silly knee jerk reaction to a personal experience, but I look back and realize that really anyone who was in our church or school was considered safe. I cannot be this trusting or naive. There are a hundred other ways I am sure I should be more protective and I'm not, but God gave me this radar, and I trust my gut on this one. I really do.
I am not like most other moms. I won't get the card thanking me for shuttling my kids to practices or cheering them on at games or performances. I won't be recognized in their graduation speech as the mom who was "always there for me." My girls haven't had big birthday parties, hand decorated cakes or lots of fun outings to explore the world. They haven't had all the lessons and social opportunities most kids in their peer group do. They haven't had a faithful church mom who is the example of weekly attendance and volunteering in programs and events. I haven't been a "normal" mom. I've been sick a lot. I've been gone for long periods of time emotionally and physically. Through all this I've been brutally honest with my girls about how insanely beautiful this life is and how much hurt necessarily runs along the same path. I talk about fear when I'm afraid. I talk about hope because I believe with all my heart His perfect love casts out fear. I write my girls on days when I mess up and fail them. I try to piece together a genuine narrative for them not only about their childhood but about my story woven into the fabric of these foundation years. I don't want them to compare their roots to that of their friends or Hollywood. I want honest expectations of sinners saved by Grace doing the best they can with what they have TODAY. In the morning I greet them, "Hello beautiful, How did you sleep?" At the end of the day I kiss them goodnight and play "Sleep Sound in Jesus." I pray for them. I pray for them. I pray for them. It's a risk, this love thing . . . this mother thing. It's a huge risk, and it is so constant I feel myself holding my breath at least half of the time.
In a beautiful little book titled "LIFT" by Kelly Corrigan she writes,
"My default answer to everything is no. As soon as I hear the inflection of inquiry in your voice, the word no forms in my mind, sometimes accompanied by a reason, often not. Can I open the mail? No. Can I wear your necklace? No. When is dinner? No. What you probably wouldn’t believe is how much I want to say yes. Yes, you can take two dozen books home from the library. Yes, you can eat the whole roll of SweeTarts. Yes, you can camp out on the deck. But the books will get lost, and SweeTarts will eventually make your tongue bleed, and if you sleep on the deck, the neighborhood raccoons will nibble on you. I often wish I could come back to life as your uncle, so I could give you more. But when you’re the mom, your whole life is holding the rope against these wily secret agents who never, ever stop trying to get you to drop your end.
This tug-of-war often obscures what’s also happening between us. I am your mother, the first mile of your road. Me and all my obvious and hidden limitations. That means that in addition to possibly wrecking you, I have the chance to give to you what was given to me: a decent childhood, more good memories than bad, some values, a sense of a tribe, a run at happiness. You can’t imagine how seriously I take that—even as I fail you. Mothering you is the first thing of consequence that I have ever done."
If I do nothing else, this mothering thing is what I will be measured by.
No wonder it's all so scary so much of the time.
Every day I'm given my Delaney Jayne and Danica Jean I step outside my comfort zone and dare to love the best I can. Early on I thought it would never be enough. I know now He is making me exactly enough and the places I can't fill He wants them to seek Him instead. It's not dangerous at all when you believe what I do. Our days are written. Our sovereign God has a perfect plan and nothing I can do will mess that up for them.
No mother risk at all.
Posted by Monica Kaye at 4:11 PM
Thursday, May 8, 2014
Too much time has passed since I updated here. About a month ago I became very sick and hospitalized for several days locally. Not long after I headed to Maryland for 12 days of treatment in the hospital in Lanham. During this time the web designer for my new blog went on maternity leave, and I did not have the mental stamina to move forward quickly enough to finish. For whatever reason God has me pecking away at word documents and continuing to post here at our humble Team Danica for a bit longer. I must write. It is one of the few things I am sure of in continued storms. Over the winds and waves I hear Him clearly. "Let the redeemed of the Lord tell their story." (Psalm 107:2) I have tried to quit. Each time God has specifically brought people into my life who I do not personally know telling me something of this feeble attempt to honestly share my heart and life and the Grace of God surrounding it has led them into a deeper place with our Savior. I began writing here in hopes even one child would be helped or one family might avoid the costly mistakes we made early on in seeking care for our Danica. It has grown into much more than this. I have pulled back at times because of criticism or my own personal doubt. This baring of one's most intimate physical, mental, emotional and spiritual self is not easy work. Still, I am given more resolve than ever by meeting so many of you face to face and through your emails and notes asking me not to stop.
I am almost through what I know I will look back on as three of the most grueling weeks of my life. I was admitted to the hospital in Maryland on April 21st for five plasmapheresis treatments. These required a break every other day for my body to rest and recover, making the stay away from my family long and lonely. I had a Quinton catheter placed in my neck for the treatments. A huge machine would cycle my blood out of my body separating the "bad" plasma and using a plasma like substance called albumin along with calcium it would replace my blood back into my body. I entered the hospital with some very severe symptoms including horrible pressure in my head, bulging right eye, twitching eye and face, twitching and jerking legs, extreme racing thoughts and OCD behavior, thoughts of self harm and a hopelessness I have only ever been able to describe as demon like. I've written about these symptoms before. Most recently I began to understand many of them were resulting from infections embedded deep in my body (think loose connective tissue) and attacking my brain (again, think loose connective tissue allowing the blood brain barrier to be crossed.) As many times as doctors had tried to give me a psych diagnosis I fought it vehemently, because these symptoms WERE NOT ME. I was helped by drugs targeting psych symptoms, but I was not getting any more well. Actually, I was getting sicker and sicker over time. After nine months of targeted treatments that failed and a bad flare my doctor took a chance on me.
This hospitalization and treatment was harder than any of my surgeries. We had some negative static from a few after I had made up my mind to move forward. This along with a lack of his own research and knowledge caused doubt and fear in Dan. My admission moved slowly because the hospital was preparing things for this rather unusual course of treatment, and it caused a rise in anxiety and a messy goodbye between Dan and I on the first night I was there. I felt VERY alone. I did not ever question the science of what we were doing, but I was hard on myself for leaving my husband and children again. I felt guilty for paying for a deposit, hotel costs, flights and rental car knowing their would be 40% my insurance would not cover out of network. Still, in all this, I felt like I had no other choice. I believed and still believe God led me to this opportunity at this time in this place for reasons I could not fully see. The most glaring reason being a chance for healing I had been pleading with my God for. I had to try.
There are many amazing details of God's specific care over me during my time in Maryland and stories of beautiful relationships seeded before that grew and new ones formed. I am committed to sharing them in the next week or so. I had my fifth IVIG infusion today. These are targeted immediately after my plasma exchange to give me the best chance at fighting infection and strengthening my immune system. I had one in the hospital last Friday and have had one each day this week through home health care. My sixth and last infusion will be tomorrow afternoon. I am so grateful for your love and prayers. So many of you have reached out to see how you can help or support. I have been solely focused on my treatment and not caught up in communication and coordinating even the most needed help. My family has done very well maintaining their own routine with the love of my dad and mom.
I called this a "last ditch" effort. I went quietly. I stayed quietly. I took the risk, because the only thing worse than nothing getting better is things getting worse and wondering WHAT IF I had fought harder and longer. I won't give up. I realize this only continues to be brave for so long. The tight rope between acceptance with grace and defeated resignation is one I walk every day. The net underneath is the HOPE I can be better for His glory. I'm holding on, but I'm not afraid to fall. Either way I will have the peace I need, because I tried, tried, tried.
Posted by Monica Kaye at 10:39 PM