The thing you think you cannot do . . . again

Dear ones,

I am  much too fatigued to write a real post, but I understand from your emails and messages you care deeply about how I am and the treatment I am having this week and next. 

Knowing how quickly my symptoms are returning I spent much of last week orchestrating and fighting for a second round of plasmapheresis to be completed HERE locally instead of me travelling to Maryland and being admitted to the hospital.  I can clearly see how God was in each of dozens of phone calls with my insurance case manager, local hospital, local pheresis nurses, Maryland doctor and nurse and others to accomplish what initially seemed impossible. 

During the week I was able to push myself to attend jr. high orientation with my Laney.  She begins 7th grade on Tuesday.  I was able to carpool for her volleyball practices some days.  I was also able to throw a celebration party for a handful or the many friends locally who have walked through years of trials with my family and I.  This night was perhaps the best part of my entire summer.  I found great joy in planning and decorating.  I found even greater happiness in showing hospitality to these amazing women who have loved and cared for me. 

Today my pain is at least a 7 on a 1-10 scale.  My hands and feet and body are swollen with a crazy inflammation.  My brain and hands and feet are burning like someone poured gasoline on a fire.  I am crying.  I really don't cry anymore.  I can't stop crying. 

Quite simply I am devastated to be losing the health I claimed so richly the past few months.  I am broken watching my husband and daughters grieve again.  I feel helpless to support them emotionally when I am barely able to push through myself.  You might think this becomes easier with time or our coping skills become better each relapse.  It's simply not true. 

Tomorrow is my last day with the girls.  I decided to wait until Tuesday, while they are back to school, to have my Quinton catheter placed.  I will begin 10 days of treatment on Wednesday.  Every other day I will go to Summa, Akron City Hospital and have all my blood emptied out of my body to separate the plasma and then new plasma cycled back into my body.  Like before, the hope is these five treatments with a day of rest in between will rid my body of the viruses and infections building again. 

Will you please pray for me? My appointment is at 12:30 pm on Tuesday.  My Janet will take me.  I am frightened to enter a hospital who knows so little about my personal case and the many strange things EDS and other conditions dictate in my care.  I am terrified for the Quinton catheter placement.  I was traumatized when my well known interventional radiologist  placed mine in April.  Lidocaine rarely numbs me.  It's an EDS thing.  Even with a big shot of Lidocaine in my neck and Fentanyl, Valium, and Benadryl in my IV I could clearly see and feel the knife making the cuts in my neck for the catheter.  I need to make sure some meds have been ordered tomorrow, but I'm not hopeful it will go any differently.  I have some stenosis on the left side so repeating on the right side is the best choice.  This line in central to my heart.  It is very uncomfortable in placement and size.  Coming home with it is something I am also anxious about.

I will confirm tomorrow the times for my treatment Wednesday, Friday, Sunday, Tuesday and Thursday.  I will be asking for help driving me to and from treatment and also with my girls after school for these days.  If you are able to help please let me know when and how, and I will make a schedule based on needs and get back to you.  Any meals on these days would also be helpful.  I will need to sleep after treatment.  Deciding to do this outpatient has so many benefits but also drawbacks, because I will be here and my family has become accustomed to me up and out of bed again.  I hate this is happening the first few weeks of school. 

I don't know what this means financially.  If I had to go to  Maryland I would not have been able to proceed.  We are at the complete dead end when it comes to making arrangements to pay for past bills and continue to move forward with new ones.  I'm candid about this, because I believe there is no shame in fighting for your life.  There is no price on the past three months my treatment gave my family and I.  NO PRICE.  Will you please pray for us to continue to walk outside the tent and find manna and know it is ENOUGH . . . more than ENOUGH for today.  Often God's provision has been how we know for sure I am supposed to move forward.  I will also confirm tomorrow any initial out of pocket money we need to pay.  As I type this I watch bird after bird flock to our feeder.  Every bird I see reminds me of the verses I cherish, "Look at the birds of the air; they do not  sow or  reap or store away in barns, and yet your heavenly Father feeds them.  Are you not much more valuable than they?" (Matthew 6:26)

Thank you for praying for Dan, who shut down yesterday to the point of sleeping for hours.  This is so hard for him.  Please pray for my girls as they begin their school year with a momma who is once again fighting for her health.  We know for sure we can do hard things through Christ who strengthens us.  Please pray we can do it AGAIN. 

Sweet tea and Jesus

Today was the last Saturday of our summer.  From the second I woke up I held on to moments like golden strands of fine thread needing to be tied off carefully so the tapestry won't unravel.  I am not sure if I ever fully believed God might give me a day like this . . . or a week . . . or a month . . . or three months, but I fought like He might, and He did.

I have been in recovery.  I am a person who lost part of my brain and my soul.  I have been relearning the simple things in life most people take for granted.  I am in many ways like a child.  If you spend time with me I will probably exclaim out loud about a hundred things you think are ordinary.  I may have seen them or heard them, smelled them, tasted them or felt them before, but it has been years since anything did not pass through the brutal filter of chronic pain.

Dan and my girls are getting to know me again.

Delaney told me today I was funny.  She only ever saw this mom in old home movies.  I was the crazy one drinking a bloody mary for breakfast while dancing around the living room doing Elaine Benes impressions and belly laughing.  I still believed life was good.  She will tell me "Thank you" in an "I can't believe you were able to do this for me way" for normal mom stuff like making her a peanut butter and jelly sandwich.  It takes me off guard until I remember she has been making her own lunch and Danica's lunch for too long.  She turned around from the yard and said to me tonight, "I'm so proud of you mom.  You've been through so much and still you provide."  I asked her, "What do I provide?"  Her answer, "Kindness and love."  A tear falls and I think . . . maybe she is going to be okay after all.  Maybe I haven't hurt her too much.  Maybe she sees the big picture at almost twelve years old.  Only the gift of the summer we've had could give this kind of clarity.

I see flashes of pure joy on my husband's face when his old Monki shows up. I'll do something simple for him like a wife might do for her husband.  Maybe it's just asking him if he needs a drink or a bowl of cereal, but I know symbolically it takes the tiniest bit of the incredible load he has carried for so long off him.  It starts to tip the balance back to give and take instead of him always giving and me always taking,

For Danica it is different because our relationship was built on pain, mine or hers, and she doesn't remember me any other way.  She is thrilled to have a mommy planning playdates or going shopping with her, but she is not tenuous like Dan and Laney are.  For Danica the fact her mom is out of bed is just her life today, not something she's terrified we might lose. Still, her bedtime prayers have changed. Every night for as long as I can remember she would end with her little plea to a big God, "Please make mommy better." I would cringe wondering how messed up a child's faith could get if the answer never came.  Slowly this summer she has moved on to pray about other things and for other people, letting me slip off the list.  I love knowing her tender heart is getting a break from worrying about her mama.

During my plasmapheresis and IVIG treatments I made a list of things I really wanted to do this summer if I was well.  Some of them were simple like taking the girls putt putting yesterday.  Others were bigger like attending an outdoor concert, a major league baseball game and a trip to the beach, all activities that brought me true enjoyment before I became so ill.  We never got to the bigger things because of money, but in some ways I think it was for the best because we learned how to live and love in this sacred space of home and everyday life again.

I also set out to lose steroid weight and become thinner over these summer months.  This hasn't happened, because I'm hungry for the first time in years, and I want to eat.  I've realized the part of my brain that forgot how to enjoy anything is loving food again and drink and the community it invites too. I'm letting myself remember these right now.  I'm showing myself grace.  This body has been through hell. It's okay to look in the mirror and respect the wonder of flesh and blood surviving all I have no matter what the scale says.

This evening our family was hanging out on our deck.  We had just finished my "famous" corn dip. The sun was setting behind the trees. Over the Rhine was crooning "Favorite Time of Night" from our playlist.  The girls and Twixie were playing badminton and soccer.  I got that thick feeling in my throat as the cicadas sang.  I felt my anxiety about all we are facing financially begin to sprout in my mind and try to rob me of the perfect night.  I felt my fear about the evil in the world and the sadness for the suffering and brokenhearted.  Why are we allowed to be here like this when so much of humanity is wailing tonight?  Why does my heart ache over my own medical debt when people are starving and dying?  How do I balance the goodness of God with all these things?

I have always been too serious.  Life has always been a struggle between the highs and lows.  I feel everything too deeply.  I think about you and you and you, and I pray for you too.  I wonder how you are today.  I'll write you a note to let you know.  I'll buy you a gift when I see something that makes me think of you even when I can't afford it.  If I just met you I want to cut through anything casual and hear your story.  I want to know what you read and the music you listen to.  I want to know what makes you laugh and what makes you cry.  I know for sure God is real, and I'll give the reason for the Hope in me.  I know for sure life is hard and love is real, and we have to keep believing no matter what.  All this is exhausting.  Most don't have the stomach for it and need to numb themselves or dumb it down as a coping mechanism.  I get this.  I do.  I've tried to change. I've tried to medicate away the very thing I am learning is most likely a gift not a curse.

In this age of trying to capture our feeling in a facebook post or a tweet, I try to imagine telling some kind of narrative in just a few words.  It's not natural for me.  Most of the time I just can't do it, and I run to write for real in places no one reads.  Instagram is a little easier.  After all a picture is worth a thousand words, right? Sometimes I run to grab my camera and capture the way the light is falling or the girls are playing. I'm grasping to simplify what has always been so complicated for as long as I can remember.  I don't often succeed.  On the rare occasion it happens it is usually just a few words strung together, hanging out there like a mantra for my soul. My OCD brain holds onto them, and I chant in my head like a child rocking to sooth away the day and finally sleep.

Today it came in a pillow that showed up in the mail.

SWEET TEA AND JESUS.

This I know.

I feel my symptoms returning slowly.  I have quietly let the people who need to know begin to monitor how far we let this go before I get help again.  I'm terrified, because I was released from a kind of prison, and I need to be free like this no matter what.  No matter what the cost.  No matter what the toll is on the people around me.  No matter how many more scars.  I can't go back where I was.  I knew another round might be needed.  I remember asking, "How long will this last?" The answer was, "We don't know.  Maybe three months, maybe six . . ."  I scribbled this in my little notebook I kept in the hospital those worst twelve days.

SWEET TEA AND JESUS.  SWEET TEA AND JESUS.  SWEET TEA AND JESUS.

This I know.

 . . . It's Sunday morning now.  No church for us.  Dan and the girls have taken a month off, and I am not sure when I can go back.  I'm not sure why, but it has been good.  We slept in until almost nine. All of us.  We had coffee and breakfast and played Scrabble.  I am so tired from my twitching body and racing mind. Symptoms.  Our family will work on thank yous today.  Gratitude for a family who gave us Christmas in July.  It was amazing.  Gratitude for a laptop that showed up on our back deck when mine died. Someone who knows my world is still small and the keyboard and screen are the place I sort things out and reach out and am touched by you too.  Gratitude for a friend who tells me this.  "I don't believe God brought you this far and provided all you need to walk away from the help you might still need to fight for your life."  She's right.  Until someone sues I need to ask, "Do we have everything we need today?"  Once step in front of the other.  Be faithful.  Do the next thing.  Love harder. Celebrate the gifts.  Give the rest to Him.

SWEET TEA AND JESUS.

This I know.

Go fund me update and prayer request

It was a year ago I was facing three surgeries back to back to back, abdominal at Cleveland Clinic and my hardware removal in Maryland followed by my first shunt in Maryland. I love seeing the trail of love here that carried our family through financially. Since those surgeries I have had a shunt revision and several hospitalizations including 12 days in April and May in Maryland for my plasmapheresis and locally for my Meningitis. I also had IVIG here at home, perhaps the most expensive treatment to date in my journey. The update is simple. I am the most well for the longest period of time since before my pregnancy with Danica. It's nothing short of miraculous. PRAISE. I still have pain days and pressure and all that goes along with the hacked up body and EDS, but I am healed in a way I could only hope and pray for. Without your love I know I would not be here. I am at a crossroads. Our family is at a crossroads. Will you pray for us? We feel the greatest hope and also the greatest pressure ever because of our medical bills. Many have counseled towards bankruptcy. This often puts the very doctors who have helped me in a position to not be able to treat me again if I would regress. The number one stress in my healing is now the enormous pressure I feel to resolve some of our debt. We need wisdom. As we wait and trust we also celebrate every moment of the simple life together we thought might never be possible again. Your love and generosity are giving us these golden days. Thank you. Our Hope remains!

The light that breaks through all things broken

“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."

Mother risk and rest

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.  

Just rest.  

Last ditch

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.

In the palm of His hand

The sun is setting over the woods, and the last lights are bouncing off my bedroom walls.  I am listening to banjo and fiddle and Jesus.

I am so alive tonight I can barely breathe for the wonder if it.  

This is what happens when I pay attention.

My family left to get their first ice cream of the season at Scoops.  I ran to the foot of the cross.  

I want to wash feet.

I want to break bread and eat.

I want to drink the cup and remember.  

Oh, if I would only stay here in the palm of His hand.  Safe.  Forgiven. Forever.

To find shelter,
(the song says)
in the palm of God, you need
to inhabit
its fissures--
the life and death
lines, the cracked
skin, the calluses
thickened
from long labor
with wood,
the generosity
of healing touch,
the skill for all that
Creation, all those
generous cures,
but deepest, the open
bloody hole
in which
your wrong
is drowned.

Secure, by Luci Shaw