Thursday, May 24, 2012

Pushing through pain

Source: via Monica on Pinterest

I have been quiet. I just don't know how to talk about my pain anymore. Some things became very clear after last week's visit to the allergy specialist. The suggested "solutions" to try to reach some measure of healing and health seem so impossible. The incredibly compassionate and thorough doctor I saw believes there is one major trigger that is causing all the increased reactions and sensitivities to chemicals and food and outdoor lovelies, etc. He also believes this trigger is perhaps the root cause of my gastro issues and rectal bleeding. I am angry. Dan is angry. We are hurting and hurting one another. It feels like we are crumbling. The end of school parties and activities and field day and Memorial Day BBQs and beach vacations and days at the pool or just playing in the yard are all something I can't do . . . my family can't do . . . I picture the next three months with my girls in this basement and me in bed. I just can't even imagine having a life again. A REAL life.

I'm not ready to write about much else. I am working on Danica's Cincinnati appointments which have been such a challenge because we are introducing two new specialties and Dr. Crone wants specific doctors not just open clinic appointments because of her complicated case. Coordinating these to try to take only one trip and get all the scans and test in and see the doctors is hard. We are not going to be able to go to Maryland for the CSF walk on June 9th. This is devastating because we needed this emotionally, and our family needed to leave here if only for a few days. I have an appointment with Dr. Henderson, my neurosurgeon, Monday, June 11th that I will also need to cancel.

Today I was planning to have coffee with a dear woman from church. I called her from bed to cancel. My feet feel like they have hundreds of needles in them, and they are very numb. Dangerously numb. My lower back and all my joints hurt so bad I finally dug into my old meds and took the one drug I HATE to take, a crazy strong painkiller. It takes the edge off so I can manage laying here with Danica watching Nick Jr. and be relatively kind.

I am having a really hard time praying for myself and our family. I try to focus on others and pray for them and reach out to them, but I don't know how to approach my God about this. Today I'm asking if you would please plead for Dan, for Delaney, for Danica and yes, for me. God knows our hearts, our needs, and our desires. I'm barely hanging on to this, but I still believe. There is nothing left to do but push through the hurt and hold on to hope.

Thursday, May 17, 2012

Fragility and Faith

12:52 pm.
Appointment with Allergy and Immunology specialist in Fairlawn at 3 pm.
Still in my pajamas, wearing glasses and have not showered.
My heart hurts.
My face is red and hot to touch.
My throat is tight and sore.
My neck and head hurt.
My ears feel like they are leaking something and might explode.
My shoulders are like razors cutting every time I move them.
They pop out on almost every movement now.
My fingers ache and go numb,
My low back aches constantly when lying down.
Walking or standing or bending can bring me to my knees.
Yes, my knees and ankles sublux all the time.
My feet are numb and look dark purple, almost black. They are freezing.
The room is spinning, and I feel nauseous.

Just a few of the pain symptoms I feel right this minute. I try to visualize getting out of this bed, taking a shower which makes me weak and sick and getting into a car and driving all the way to Akron, waiting in an office, spending more than hour with a doctor and then driving home in traffic.

I think about needing to feed my family, do homework, get them ready for bed, love them, tuck them in . . . and then there is my husband who worked all day and just wants his Moni Kaye for a hour. An outlook email pops up. It's short and to the point. "Thanks for being so upbeat lately even when you're not feeling good at all."

I'm fragile and broken.
It has nothing to do with my faith.
It has everything to do with my faith.

Dan gets paid tomorrow. $900 for two weeks.
Presciptions and copays.
Car insurance.
It has nothing to do with my faith.
It has everything to do with my faith.

Calendar full of appointments spread out from Maryland to Cincinnati.
I can't get out of bed.
I feel like Akron might as well be California.
It has nothing to do with my faith.
It has everything to do with my faith.

Danica needs her diaper changed. I must get on my knees. Pop. Pain. I must bend over. Slice. Pain. I have to shower or they will write in my chart I can't even care for my own hygiene. Okay. Maybe some deoderant, brushing my teeth and putting some lipstick on will have to do. Like it did yesterday and the day before. The shower is my arch nemesis. Beautiful and perfectly groomed Monica is now this.

Earthen Vessel.
No spoons.
Be Still.


This has everything to do with believing.

"But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves." II Corinithians 4:7

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.

Sunday, May 13, 2012

One little heartbeat at a time

Today I am reminded every second I pour into these girls matters. My heart is full, but I am too weary to write so I thought I would share this little video I made when Laney was little and Danica was just a baby.  LOVE.

Saturday, May 12, 2012

Get your Kleenex! (I'm finally announcing the winner of the "Kind and Brave" giveaway.)

I received over a dozen beautiful nominations for the "Kind and Brave" giveaway.  They were all so moving in different ways but something about this one emailed from Melissa about her mother, Kay, resonated with me for many reasons.  I don't know either of these ladies well.  They attend what I call my church but where I rarely attend because of my illnesses.  Here is the nomination:

I hadn’t thought about how the words “kind” and “brave” applied to my mom until I started to write this, but they are so true… She inspires, blesses, and encourages so many people. All from the lower level of a house, from the confines of a wheelchair, from a body that is in daily, hourly pain, still she praises the Lord and finds way to serve him.

My mom’s bravery is an unparalleled example in my life. About 30 years ago, she found out that she “only” had multiple sclerosis. This was a relief, compared to the alternatives: a brain tumor or a tumor on her spine that would leave her paralyzed. But since then she has been in a battle for her health and each day has been a fight. She fought each downturn in her health, from giving up walking unassisted, to giving up a cane, to giving up her walker, and now finding herself in a wheelchair. She has daily intense pain that most of us can’t even begin to imagine. She faces difficulties that I couldn’t even begin to name. But still, she gets up every morning, she praises the Lord, and she asks what she can do for others that day. And this is where her kindness comes in. And this is where my mind is totally blown that such courage and thoughtfulness can exist inside one person. Because I can’t help but think that most people would give up, or at the very least think, “All God can ask of me today is to survive, so I will do that and only that.” But that’s not what she does. She lays her abilities in front of the Lord and says the equivalent of, “This is what I have to offer. I saw what you did with the loaves and the fishes. Multiply what I am setting before you and let it be used to serve you.”

People know my mom. She’s hard to miss. She’s the only one in our church with a wheelchair. But still I think many people look over her. I mean this as literally as I mean it figuratively. But I will tell you that she misses nothing. She is watching, and she is looking for people whom she can reach out to. And these are not the most obvious choices to others. It’s the ones most people would never even notice. It’s the woman in the corner who slips in and slips out and no one has ever asked her name. It’s the woman whose husband is not a believer, but she comes anyway, but doesn’t make eye contact with anyone. It’s the woman whose been hurt by churches in the past and is scared to commit, but she’s willing to put her toe in the waters and see if she can stay on the edge and not get hurt again. These are the types of ladies that my mom reaches out to. And she can connect with them like others can’t, because she’s not threatening, because she must have felt pain, must have been through so much, so surely maybe she would understand. And she does. And it’s not just ladies, but families and other individuals. She seeks out the unnoticed, she learns about them, she cares for them, she misses them when they aren’t there, she follows up on them when others might not even notice their absence, and she brings them before the Lord in her prayers. This is part of my mom’s kindness. This is her using her gifts and letting the Lord multiply them.

I could go on and on. I could tell you about her ministry of encouragement, the many cards and notes she has written to so many people, because, as she says, that is something she CAN do. I could tell you of her and my dad’s bravery in letting go of the house that they built and carefully picked out everything in, to live in the lower level of a house with us, so that we could be there for her, and so they could be there for us. I could tell you about the hundreds of hours she has invested in homeschooling my children, the individual plans she comes up with for them, the learning games she has made for them, even through pain that I can’t fathom. But I will summarize it in this way: My mom is kind and brave and so few people really know how and why. It is so far beyond what is on the outside. And I think that is the most admirable kind of bravery and kindness. When you are brave and you are kind and you aren’t doing it publicly, but privately and rarely are you going to get a pat on the back or attention for it. But someday you will hear the most important words of all: “Well done, good and faithful servant.” I am so thankful this kind and brave woman is my mom.

On Thursday evening our church hosted an annual "Mothers and Others" event.  I had planned to decorate a table for my own grandmothers, mom, new sister-in-law to be and her mom and my girls.  By the time my dad took me to the hospital for some lab stuff and to the church to get my table ready I was so very sick and in great pain.  I knew there was no way I could attend later that evening.  I was sad but still so excited that Melissa was going to be able to publicly surprise her mom, Kay, at the program by reading her nomination and presenting her with all the goodies.  Yesterday I received this sweet "thank you" email from Kay.  I hope she doesn't mind me sharing here, but it tells even more about her struggle and her heart's response.

How do I begin to say thank you to a wonderful woman who is struggling with healing in her own world, to take the time and energy at this point in her (your) life, to think of others? What a surprise and blessing last night was for me. As Terry announced that someone in our church had written the chosen nomination, and that someone in our church was the one written about, I thought how wonderful that was, and how great a time that would be for her. It’s amazing how many people one can think of who deserve such a nomination. Then, even as Melissa arose, I thought it was so sweet of her to write about someone whom she knew who was "kind and brave". Monica, it never occurred to me that it was going to be me! Although all the glory goes to our Lord, I pray, it was such a blessing and encouragement. And, the amazing thing is how many people came to me last night to share their pain and struggles! What a blessing that God would use this honor, for me to encourage more people! I love to see the way God works! What a joy to be able to be used by Him because of my wheelchair! What an awesome God we serve!

Although it was delightful to dig through my pack of goodies, it was also a joy to learn more about you! I could bore you with the many thoughts and responses I had to each little item. For example the earrings on the library catalog card brought back old memories of my hours in the library. I was just teaching Marah about the Dewey Decimal System and the card catalogue method of finding books in the library in "my day", so what an object lesson this was, and will be. We took turns trying different ways to use that beautiful scarf last night, also. I could go on and on. What a window into your life and heart Monica! What a blessing the sacrifice of your treasured items is to me!

I also want to take this opportunity to share a beautiful moment I saw Sunday night. This sweet, loving mother came into the worship sanctuary and sat in the back row. I could see she was in great physical pain. She glowed as she watched her daughter get her AWANA awards. She was able to be the mother she longs to be (and is), as she excitedly brought her award to her. Yes, Monica, it was a joy to watch you lovingly giving of yourself, in your own pain, to joy in your daughter's special moment, as God enabled you. I wanted to come up behind you, and give you a hug, and let you know what a joy it was to see you, but I didn’t want you to try to even turn your head, or feel you needed to see who was there behind you. So, I thank God again today, that you were able to come and sit in that back row, in great pain I can only imagine, and that He gave me a chance today to share with you what I was blessed to see from my wheelchair.

I was talking to Karen Kemp this morning and we were saying what a blessing God gives us, as we are able to share with others about our wonderful Lord and Savior, because of the adversity He graces us with. What a blessing He gives me, as He allows me to share my joy in Him, because of my wheelchair! I know you too have been a blessing to many, as you have journeyed through such painful days. Your love bubbles over into those who know and love you. Though your days are harder than I can imagine Monica, I thank God for the lives your are touching because of the journey our Lord has set before you.

Monica, I can’t thank you enough for your gift of encouragement last night, as you once again gave of yourself to others. My prayer is for your continued healing, and for God to use Melissa’s testimony for me to reach others for the Lord! May God bless the ministry with which He has graced you! I know He will give you the strength you need to serve Him, each time He opens a door of ministry to you! What an awesome God we serve!

close this thank you Monica, with Melissa’s quote, "…She lays her abilities in front of the Lord and says the equivalent of ‘This is what I have to offer. I saw what You did with the loaves and fish. Multiply what I am setting before You and let it be used to serve You’." I know this is your prayer, too. God bless you, Monica.

On a day when I was feeling neither kind or brave these words reminded me of the Truth about my own suffering and broken dreams.  It encouraged me to be faithful and do what I can with what I have where God has put me.  Only eternity will tell how the few loaves and fishes will be multiplied.  Soli Deo Gloria. 

Monday, May 7, 2012

Be Kind (There's still time to nominate someone for the big giveaway!)

One of the most important lessons I've learned through my journey is to see people through new eyes.  We make so many judgments based on appearances and preconceived notions without even trying to imagine the backstories we are all living.  I had many motivators for hosting this "Kind and Brave" giveaway.  More than anything I wanted to prompt YOU to quietly take time to think about someone in your life who characterizes these traits and inspires you.  I wanted YOU to articulate this in a way to be shared and celebrated.  I can honestly say the nominations I have received have blessed me in ways I never imagined.  I know they will be a treasured gift to the dear ones you have written about.

Today is the last day to nominate someone for this giveaway.  The instructions on how to enter and pictures of the goodies are HERE.  Tomorrow morning I will announce the winner of the big care package.  At this point I plan to print each nomination on beautiful paper and send with a little gift to each nominee.  I will announce the sweet gift tomorrow as well.  I will also be posting some of the nominations after Mother's Day once I'm sure they have received their packages and letters personally first. 

Remember.  Be brave.  Be kind.  It always matters!