Monday, May 14, 2012

Vigil. A middle of the night post for all my Chiari moms and especially Kelly.

I'm lying here in bed next to my Danica Jean.  I won't sleep tonight.  I know some of you are doing the same with your little ones just like you have many nights before.  Mother's Day is more meaningful than ever to those of us who hold our breath over and over again on nights like these.  We check to see if they have stopped breathing.  We wake them up if they begin choking or gagging.  We put pillows all around them so they won't flail themselves off the bed . . . We skip our own meds and borrow spoons we never even had from tomorrow to know they will make it through.

My mother gut has guided me these three years now since I knew something was really wrong with my girl.  Over the past week or so I have been watching Danica and seeing changes in her behavior. Her tolerance to stimulation and noise has decreased, she has had excessive fatigue including falling asleep in random places while playing and most noticeably she has had extreme restless motions when lying flat or trying to sleep.  She has been falling more.  Her face has changed.  I have seen it.  Dan has seen it.  We know all the signs.  We look across the room at one another when she falls off the chair.  Dan says when the kids leave the room, "I just thought we'd have more time than this.  I knew it was coming, but we can't do this again.  Not yet."

I haven't focused much on Danica's health here because I needed a break from the constant facebook and email message stream of Chiari stories.  I have been waging battles of my own, learning about new diseases related to Chiari that are making me a very sick lady, and it seems I am less and less able to focus on more than one thing at a time, especially when I am in pain.  Since Danica's visit with Dr. Crone in Cincinnati in February and her MRI we felt like we needed to ease off a little.  She was doing really well.  We have lived our lives on pins and needles.  We have told her "no" a million times about things she desperately wants to do.  As the Pump it Up invitations stream in from preschool her little heart sinks.  She has been pushing her own limits with jumping and dancing and chasing the dog around here, and I think I have been just too tired and sick to keep yelling.  I keep telling myself to embrace the miracle and stop analyzing every thing. 

Her one obvious remaining issue is she cannot have a bowel movement in the toilet.  She has tried.  Over and over again she has wanted to.  She must get her body in a certain postion on the floor to make herself poop.  Dr. Crone mentioned this  may be from earlier neurological damage.  My gut says her cord is tethered even though he said it is not based on her imaging.  I confessed for the first time in my life to Dr. Henderson last October that for years I had been making myself poop.  I know this isn't something pretty to talk about, but I do it here because I've shared just about everything else, I have little dignity left, and I hope even one person reads this and has the courage to tell their doctor much sooner than I did.

Tonight Danica had a meltdown.  This is the old Danica.  Those of you her know her understand she is the sweetest girl with a tender heart.  Dan and I both recognize when something is happening that is not inherently her.  I tucked her in bed, and her body was jerking all over the place.  I asked her if she was hurting somewhere, and she said, "My mind is telling my body to stop, but I can't."  I became worn out, and I went out and talked to Dan.  I told him something was happening to her.  We both know that there is no cure for Chiari.  Danica was incredibly young when she had her two brain decompressions.  Fusion is almost unheard of for a child her age.  We were always told as she grows to expect changes and perhaps more surgeries.  Every single day we straddle a fence between the miracle we've been given and knowing it could crumble with just a jump or a fall.  We also know each of our lives are truly this fragile and so we have earnestly sought to find a balance between the restrictions and the years she lost being a child and knowing in the end we have to give her up daily to a God who loves her and watches over her when we cannot.

As Dan and I settled into our own bed we heard Danica begin to cry and scream.  We both bolted for her room.  She was upset.  Her eyes were open, but it was like she wasn't really there.  Her body was shaking and jerking.  I kept asking her what was wrong and where did she hurt.  I held her in my arms, and she said, "Make it stop going so fast."  Maybe a dream?  Dan and I are full of adrenaline.  We talk through our emergency plan.  Yes, the bag ready for the hospital, the late night knock on Laney's door to explain to her what could happen, and the back up plan if we don't go tonight and need to get her seen first thing in the morning.  As she calms a little Dan moves her into bed with me.  I can still feel her jerking.  We don't really know what to do.  We know a night in the ER is not good if we can get her resting and deal with real doctors in the morning.  We hug and pray over her.  Dan says in the strongest voice, "We will have a family meeting tomorrow.  This is our life."

I remember the first time I heard the word, "Chiari."  We lived on 35th St.  We had been through 6 months of grueling tests and constant trips to Akron Children's Hospital for therapy, and it was God who sent a man by the open door of the physiatrist's office who noticed not just Danica's glaring tortocollis but a facial assymetry and look in her eyes that bothered him.  He told our doctor to order an MRI when she was under sedation for the Botox injection we were going to try in her neck.  Several days after the scan I got the call.  The doctor calmly said Danica had a Chiari malformation of 10mm on the left side and about 4-5mm on the right.  She said this was most likely not related to her tortocollis or symptoms but an incidental finding and we should meet with a neurologist.  I was making dinner and lists were coming across the computer that needed shipped for the day, and Danica was fussing.  The light, the beautiful light, I loved coming in the back window was almost burning me.  I googled "Chiari."  I knew this was it. 

I have had several opportunities to meet with local moms early in their Chiari stories.  I've written many times about my friend, Melinda, and Danica's friend, Brooke, who I met at Starbucks the day before they were leaving for Brooke's decompression.  They are now two of our most constant encouragers.  I can hardly remember our life before knowing and loving them.  Often I would try to begin a larger network of care and my Dan would remind me that time would come, but I needed to step back from the Chiari fight while I was so sick.  I made a promise I would do what I could locally.  God is really in everything.  About a month ago my friend, Beth, was over for coffee and mentioned a friend of hers, Kelly, had a two year old son, Nolan, who was just diagnosed with Chiari.  I reached out to her and we met several Sundays ago at the same Starbucks.  Nolan's herniation is significant.  Many of his symptoms mirror where we were with Danica in those early days.  He will be having decompression surgery on Thursday at Cleveland Clinic.  I'm asking that you would please take time to pray for this sweet boy and his family as they begin this journey.  If you would like to follow updates and his progress his mom is writing on her own blog here

Tonight I am holding vigil for my girl and for the special moms who have become online friends, moral support and yes, most importantly, prayer warriors, in this Chiari world we live in. 

Our hope remains.


  1. Monica your diificulities are an encouragment to me when I face days and nights with pain. My pain is nothing compared to yours. I pray for you and am thankful to have you as a friend. iI ask Jesus over and over again why? I ask Him why people don't understand what others face in their lives, why friends walk away when we hurt so deeply. I love you dear friend and wish I were ther to hug you.
    In God we trust. Adrienne Urbanski

  2. Will be praying for you, your friends, your baby girl and your family. For peace, strength, and health. Best to you,


  3. Dear Monica - I'm sad to read of the continuing difficulties that you and your family are facing. It breaks my heart to read that there is more and more and more of the same and I don't understand 'why'. I can only imagine the stress, the sense of helplessness and the worry that you feel inside. I know your faith is strong but I also know that a parent still worries, out of the utmost love, for his/her child(ren). I just said a prayer for your family. I don't know what God will answer with but I hope that He will give you peace. You have continued to honor Him and give Him glory in all of this. There is a time when enough is enough. All of you have had enough. I love you guys! -- Bob

  4. We are thinking and praying for little Danica and for you. Sending strength your way to make the right decisions in your family meeting, and peace and calm for Danica, so that her mind can prevail over her beautiful little body!