I have an attempted suicide on my long term medical record. I think it puts me in the category of "could possibly slip back there again" when talking about mental health. It doesn't really scare any one else who knows about it, because it was a VERY long time ago. Besides, I always get up every morning and brush my teeth. I always feed my kids and make my beds and windex something everyday. I write thank you notes and file things with labels. I smile politely in public and make conversation. I tell myself that the years of therapy as a young adult taught me to recognize the warning signs and get help early if I feel bad enough. Oh, and I made a promise I would NEVER go back to that dark of a place again. Most of all, I've learned DO NOT drag anyone else into this. No matter what they say people are terrified of being around REAL depression. So, I've pretty much mastered the art of keeping my crazy hidden in the closet.
Here's the thing, it's my truth. I am not a depressed person, but I get depressed and anxious when my life circumstances become out of "my" control for long periods of time. The couple of times in my life it has been the worst were surrounding issues of chronic physical pain and extreme financial instability. I become manic. I have spurts of insane energy, making plans and trying to be the hero and fix the problem. Once I have used all possible energy and my body and mind are completely exhausted and sick I crumple without warning into crying jags and panic attacks.
Last Sunday, I got scared. I felt as out of control as I have in over a decade. I couldn't understand why, after all we've made it through, I was now falling apart. I grew up with the "Jay Adams" theory of sin and sadness. I searched my heart for real spiritual reasons I was not trusting and resting. I know God has proven His faithfulness every single moment of my life. I REALLY believe He is working all this out for our good and His glory. Why couldn't I take a breath?
Following Sunday's episode, I got up Monday morning, made a doctor's appointment to check on my meds, looked into treatment facilities (just in case things got that scary again) and then put my mama nose to the grindstone. It was Delaney's spring break, and I had play dates planned outside our home every day. I was longing for it to feel fun and "normal" for the girls and give us a break from being in this house for so many months. Besides, maybe being social would help me too. Delaney had been feeling badly since last Friday night and running a fever on and off. By Wednesday morning she was really sick, and we headed to the doctor for a strep test. Sure enough, it was positive. Between Delaney needing me in the night and Danica's night symptoms of restless legs and waking beginning again I was completely empty by Thursday night. I prayed for sleep and instead Danica came in at 2:30 in the morning and literally did not fall back asleep until 5:30. Friday, I could barely move. Most of the time my fibro is settled in my upper body and especially my shoulders and arms, but when it gets really bad my hips and knees and feet and toes are also affected. I pushed all day gritting my teeth. When Dan got home I needed to go to the store, and I headed out. Finding a few hours alone was the best medicine no matter how exhausted.
On my way home I was specifically thinking about the cross and how Christ came to save people like me, the UNWELL. His grace is not a magic brain or heart chemistry pill. There are still great struggles between my fallen flesh and my justified spirit. The Casting Crowns song "Glorious Day" came on the radio, and I sang at the top of my lungs with tears streaming down my cheeks. I'm not crazy. I'm a sinner who gets sad sometimes because life is hard and our bodies are broken. Here's the great news. I'm redeemed, and He will always lead me back to the reason I live and restore my joy again because of what He's done. Best of all, this life isn't it. He's risen and He's coming again. Oh glorious day!
Thursday, March 31, 2011
Monday, March 21, 2011
Outside the boat
Two weeks ago Danica had the first MRI of her brain since her second Chiari decompression and cervical-occipital fusion in October. This is one of the images from that scan. This picture is one tangible thing we can go to over and over and know the pain and loss of the last months have made a difference. It's been two years since we stepped out on the water, and we began looking for healing for our girl. We have had moments of sinking, swimming and walking on water. We have been like Peter, excited to step outside the boat and head towards whatever God asked us to do, and we have also had our faith sucked away by boisterous winds and become full of doubt.
Since Danica was released from her brace we have been on a manic rollercoaster. Keeping Danica safe with her new freedom is an all consuming job. We are constantly trying to balance the reality of the months of healing still ahead of us with the pure joy of how far we have come. We have been noticing symptoms, particularly with her right leg and the foot when she walks. She seems to have very little rotation in that ankle and her entire leg turns inward. She still exhibits spasticity and goes between extreme tippy toe walking and straight legged, flat footed Frankenstein walking. I talked to the neurosurgeon on Monday, and he reminded me the damage done to Danica's cerebellum from her years of herniation will not just magically heal. The damaged part of the brain was coagulated but just because we can't see it anymore does not mean it's just suddenly okay. He recommended therapy. I was finally able to set up our first appointment on Monday, April 4th.
. . . I began this post much earlier in the week. Tomorrow will now mark three weeks since Danica's MRI. I have had many of you write and ask why I'm not blogging. It's been really hard over here. I am not well, and the constant job of caring for Danica has left me with even less time or energy to maintain relationships or write. I am so tired of telling the truth about what is happening to us. We thought it would feel different to come this far. We thought removing the brace would be a mountaintop experience and then it would somehow begin to be "downhill" for awhile. We just need a break. Instead, knowing we have to move and not knowing where has worn Dan and I to the thinnest I think we have ever been. Delaney hears bits and pieces of our conversations. She breaks down crying without warning. We never wanted her to feel so insecure, but it's inevitable. Danica has been having screaming fits again. This more than anything upsets Delaney. All the notes of celebration about making it to this milestone have gone very flat.
Last Friday night the girls and I had a wonderful opportunity to attend the spaghetti dinner sponsored by the medical technology students from various Stark County schools to help send our family to Disney. I was overwhelmed. I think maybe I don't remember how to be with people anymore. I feel completely inadequate to express how much their love and continued support means. I don't know how to talk about anything else except this. I have become this. Dan and I's marriage is this. Delaney's life is this. When we got home I was hurting so badly physically and just laid here in my bed while the girls made a tea party on the floor with their new blankets they had received as gifts from the students. I was sobbing. Later when I tucked Delaney in we talked about how we were feeling. I explained to her I always want her to be able to express when she is happy or truly sad and as her mom I need to be able to do this too, even with my children around.
I grew up differently. There was an expectation to act as happy as you could all the time. I remember very few if any talks with my parents about how mad or sad or afraid I was. I think this came from the idea that somehow if we said these things out loud to one another in any form other than a prayer it meant we weren't trusting God. Sometimes even when ALL past evidence points to the faithful hand of a loving God the circumstances and the fatigue and the pain and the fear still wash over us like a huge wave and take our breath away. It's okay to have a heart cry that is not "theologically" sound. The truth is the solid rock we will land on. The continued storms will take us there. Jesus will always reach out his hand to catch us. Meanwhile we will cling to one another and learn more about being outside the boat.
"We have this hope as an anchor for the soul, firm and secure." Hebrews 6:19
Saturday, March 19, 2011
Kindness as Grace
Kindness by Naomi Shihab Nye
Before you know what kindness really is
you must lose things, feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.
Before you learn the tender gravity of kindness,
you must travel where the
Indian in a white poncho lies dead
by the side of the road.
You must see how this could be you, how he too was someone who journeyed through the night
with plans and the simple breath
that kept him alive.
Before you know kindness
as the deepest thing inside,
you must know sorrow
as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness
that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day
to mail letters and purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you every where
like a shadow or a friend.
Before you know what kindness really is
you must lose things, feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.
Before you learn the tender gravity of kindness,
you must travel where the
Indian in a white poncho lies dead
by the side of the road.
You must see how this could be you, how he too was someone who journeyed through the night
with plans and the simple breath
that kept him alive.
Before you know kindness
as the deepest thing inside,
you must know sorrow
as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness
that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day
to mail letters and purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you every where
like a shadow or a friend.
Thursday, March 17, 2011
Light as Grace
"In a serene Bright,
In a more golden light
I see
Each little doubt and fear,
Each little discord here
Removed."
Emily Dickinson
My mom drove me to an early morning appointment to visit my surgeon at the Cleveland Clinic. On our way home we stopped back by my parent's house, and I went into the basement to try to imagine us living life there for awhile. I came home and began to notice and appreciate rays of light everywhere. I wonder how many times I have used the phrase "puddle of sunshine" in the past three years we have nested in this home. There are so many beautiful windows. On sunny days I feel like I live in my own cathedral.
Danica and I headed out to pick up Laney from the bus and rolled down our windows a little on our way. We sang songs and inhaled and exhaled the fresh air. Spontaneously we decided to eat at Milk and Honey on our way home. One of our favorite things about living where we do is being so close to such a fun place. Danica savored her "Superman" icecream. Then girls got squeaky clean, something we will NEVER take for granted again, and we sat down in the afternoon sun to collage our hopes for this spring while listening to one of our favorite playlists.
Today I saw every beam of light as pure Grace.
"And the LORD shall guide thee continually, and satisfy thy soul in drought, and make fat thy bones: and thou shalt be like a watered garden, and like a spring of water, whose waters fail not. And they that shall be of thee shall build the old waste places: thou shalt raise up the foundations of many generations; and thou shalt be called, The repairer of the breach, The restorer of paths to DWELL in." Isaiah 58:11-12
In a more golden light
I see
Each little doubt and fear,
Each little discord here
Removed."
Emily Dickinson
My mom drove me to an early morning appointment to visit my surgeon at the Cleveland Clinic. On our way home we stopped back by my parent's house, and I went into the basement to try to imagine us living life there for awhile. I came home and began to notice and appreciate rays of light everywhere. I wonder how many times I have used the phrase "puddle of sunshine" in the past three years we have nested in this home. There are so many beautiful windows. On sunny days I feel like I live in my own cathedral.
Danica and I headed out to pick up Laney from the bus and rolled down our windows a little on our way. We sang songs and inhaled and exhaled the fresh air. Spontaneously we decided to eat at Milk and Honey on our way home. One of our favorite things about living where we do is being so close to such a fun place. Danica savored her "Superman" icecream. Then girls got squeaky clean, something we will NEVER take for granted again, and we sat down in the afternoon sun to collage our hopes for this spring while listening to one of our favorite playlists.
Today I saw every beam of light as pure Grace.
"And the LORD shall guide thee continually, and satisfy thy soul in drought, and make fat thy bones: and thou shalt be like a watered garden, and like a spring of water, whose waters fail not. And they that shall be of thee shall build the old waste places: thou shalt raise up the foundations of many generations; and thou shalt be called, The repairer of the breach, The restorer of paths to DWELL in." Isaiah 58:11-12
Wednesday, March 16, 2011
Disney and the American Dream
Today there was a short article in The Canton Repository about the Perry High School medical technology student's efforts to help raise money for Danica's Disney wish through the local organization Wishes Can Happen. They are hosting a spaghetti dinner this coming Friday from 4 to 8 p.m. at New Life United Methodist Church at 1023 Whipple Ave. NW.
Just below the online version of the article is a pretty harsh comment amount Danica's wish and how we should just be grateful to have a roof over our heads and food on the table. It hurt me deeply. On a week when packing boxes are coming home with my husband and being loaded into our garage, and Danica took her first very tough fall down our stairs, and I am burning with pain from head to toe, I wonder if this person could even begin to understand how painful words can be.
When Danica was first nominated by others for this wish last summer she was headed into her second brain surgery and spinal fusion, and the last thing we could imagine is a trip to Disney World. If you follow her story all the way back to my pregnancy you will see we have given up almost everything considered the "American Dream" to fight for this little girl's life. God has surrounded us with love and support near and far and has faithfully blessed us with what we need and SO MUCH MORE because of generous hearts like these young people at Perry High School.
Dan and I sit here at night crying and praying about the need to move and what decisions to make to carry us through Danica's continued recovery. It seems moving into my parent's basement may be the answer. Thinking about losing our own space pours salt in deep, fresh wounds. Of course it crosses our minds when we consider the cost of this Disney trip how far that money would go towards rent or medical bills. Don't you see this is the whole point of the trip? It is for families who are faced with chronic illness and back breaking financial stress to have a taste of something magical. It is given to us because we would never be able to take this break together any other way.
We see the scrolling news about the devastation in Japan. We look next door and see children who are going without. Owning our own home, paying for our girl's college, building a retirement fund or even something as simple as a family vacation seem as elusive to us as a cure for Chiari. Dan, Delaney, Danica and I holding hands and looking up at the fireworks behind the castle beneath the Magic Kingdom sky is pretty much what we've been left wishing on. So, please understand how humbled we are by this gift and how grateful we are.
Just below the online version of the article is a pretty harsh comment amount Danica's wish and how we should just be grateful to have a roof over our heads and food on the table. It hurt me deeply. On a week when packing boxes are coming home with my husband and being loaded into our garage, and Danica took her first very tough fall down our stairs, and I am burning with pain from head to toe, I wonder if this person could even begin to understand how painful words can be.
When Danica was first nominated by others for this wish last summer she was headed into her second brain surgery and spinal fusion, and the last thing we could imagine is a trip to Disney World. If you follow her story all the way back to my pregnancy you will see we have given up almost everything considered the "American Dream" to fight for this little girl's life. God has surrounded us with love and support near and far and has faithfully blessed us with what we need and SO MUCH MORE because of generous hearts like these young people at Perry High School.
Dan and I sit here at night crying and praying about the need to move and what decisions to make to carry us through Danica's continued recovery. It seems moving into my parent's basement may be the answer. Thinking about losing our own space pours salt in deep, fresh wounds. Of course it crosses our minds when we consider the cost of this Disney trip how far that money would go towards rent or medical bills. Don't you see this is the whole point of the trip? It is for families who are faced with chronic illness and back breaking financial stress to have a taste of something magical. It is given to us because we would never be able to take this break together any other way.
We see the scrolling news about the devastation in Japan. We look next door and see children who are going without. Owning our own home, paying for our girl's college, building a retirement fund or even something as simple as a family vacation seem as elusive to us as a cure for Chiari. Dan, Delaney, Danica and I holding hands and looking up at the fireworks behind the castle beneath the Magic Kingdom sky is pretty much what we've been left wishing on. So, please understand how humbled we are by this gift and how grateful we are.
Monday, March 14, 2011
The Little Blue Engine
"I can do all things through Christ who strengthens me." Phillipians 4:13
When I was a little girl my favorite story in the whole wide world was "The Little Engine That Could" by Watty Piper. My mom read that book to me hundreds of times before I could read it to myself. I lived in the illustrations and beautiful descriptions of the setting and the magical cargo and my heart ached every time the toy clown asked for help and was turned down. "Will you pull us over the mountain? Our engine has broken down and the good boys and girls on the other side won't have any toys to play with or good food to eat, unless you help us." Finally, my hero, the little blue engine said, "I think I can, I think I can, I think I can."
We have had a really rough past couple of days--maybe the worst since Danica's surgery. To put it mildly we are not adjusting well. We feel stranded on the track. We know we have to get over the mountain, but it feels like our engine has broken down. Danica is overwhelmed with the new freedom she has been given. Dr. Crawford is right. She cannot control her movements or activity. She is three. I thought watching her before her surgery was exhausting, always worrying about her falling and about the safety of her spinal cord. I thought caring for her wheelchair bound and homebound was tiring, but it was in different ways entirely. This is a new holding my breath all day long, up and down, chasing, yelling, threatening, sobbing kind of tired. I cannot leave her alone for a second. She is defiant for the first time in her life. She is feeling all her oats at once. Many times today I had to physically pick her up and move her to keep her safe and make her listen while she was kicking and screaming. My incisions are burning. My shoulders and back are beyond aching. I cannot stop crying. I don't want to be a hero anymore.
Dan and I had a marriage changing talk yesterday. We talked about why we are still here together and acknowledged how few would have made it through all this. I know I have been horrible. I feel guilty all the time about how little I can contribute these days. I feel crazy too and act it often. Dan made up some beautiful new ground rules. After we get the girls settled in, no matter how late it is and how tired we are, we will spend a half an hour with no media, just one another. We will talk openly about how we are doing, no matter how bad it is. Oh, and anytime we begin to feel overwhelmed, and we are both here, we will simply say, "I need a hug." It's like a safe phrase.
One of my other favorite children's authors, Shel Silverstein, wrote a "spoof" if you will on the story above pointing out how sometimes a positive attitude can only get you so far. In the end of his version the engine crashes, and he writes, "If the track is tough and the hill is rough, THINKING you can, just ain't enough!"
I know our faith and hope is so much more than just optimism or we would have quit by now. I believe with all my heart it is when we are stripped of everything and all physical and mental and emotional strength is gone God does His best work. "I think I can" only means something when our eyes stay on the cross. So, I'm heading there tonight and the arms of my Dan because I need a hug.
When I was a little girl my favorite story in the whole wide world was "The Little Engine That Could" by Watty Piper. My mom read that book to me hundreds of times before I could read it to myself. I lived in the illustrations and beautiful descriptions of the setting and the magical cargo and my heart ached every time the toy clown asked for help and was turned down. "Will you pull us over the mountain? Our engine has broken down and the good boys and girls on the other side won't have any toys to play with or good food to eat, unless you help us." Finally, my hero, the little blue engine said, "I think I can, I think I can, I think I can."
We have had a really rough past couple of days--maybe the worst since Danica's surgery. To put it mildly we are not adjusting well. We feel stranded on the track. We know we have to get over the mountain, but it feels like our engine has broken down. Danica is overwhelmed with the new freedom she has been given. Dr. Crawford is right. She cannot control her movements or activity. She is three. I thought watching her before her surgery was exhausting, always worrying about her falling and about the safety of her spinal cord. I thought caring for her wheelchair bound and homebound was tiring, but it was in different ways entirely. This is a new holding my breath all day long, up and down, chasing, yelling, threatening, sobbing kind of tired. I cannot leave her alone for a second. She is defiant for the first time in her life. She is feeling all her oats at once. Many times today I had to physically pick her up and move her to keep her safe and make her listen while she was kicking and screaming. My incisions are burning. My shoulders and back are beyond aching. I cannot stop crying. I don't want to be a hero anymore.
Dan and I had a marriage changing talk yesterday. We talked about why we are still here together and acknowledged how few would have made it through all this. I know I have been horrible. I feel guilty all the time about how little I can contribute these days. I feel crazy too and act it often. Dan made up some beautiful new ground rules. After we get the girls settled in, no matter how late it is and how tired we are, we will spend a half an hour with no media, just one another. We will talk openly about how we are doing, no matter how bad it is. Oh, and anytime we begin to feel overwhelmed, and we are both here, we will simply say, "I need a hug." It's like a safe phrase.
One of my other favorite children's authors, Shel Silverstein, wrote a "spoof" if you will on the story above pointing out how sometimes a positive attitude can only get you so far. In the end of his version the engine crashes, and he writes, "If the track is tough and the hill is rough, THINKING you can, just ain't enough!"
I know our faith and hope is so much more than just optimism or we would have quit by now. I believe with all my heart it is when we are stripped of everything and all physical and mental and emotional strength is gone God does His best work. "I think I can" only means something when our eyes stay on the cross. So, I'm heading there tonight and the arms of my Dan because I need a hug.
Friday, March 11, 2011
This is our story, this is our song
Today is another snow day in Ohio. It's snowy in the most beautiful way with heavy wet branches hanging low to the ground and the perfect whiteness covering the earth's stark and muddy ache for spring. Delaney is off school, and we have a had a day full of the yin and yang of hours upon hours inside these walls together. The morning always seems so well intentioned and peaceful and fun and as the day wears on we end up with fussy spirits and less attentive ears and hearts. My pain is so bad on these days. I cannot explain the way these storms make every single fiber of my body hurt, I just know it is my reality. My children are aware too, and it makes me so sad. They catch me brushing my tears away. I put one foot in front of the other and force a smile and tell them God is good and life is good because that's how we wear most pain in this world.
I wonder how to keep writing about Danica's healing and our family's story following such a miraculous step earlier this week. I sense we are all on information overload. There are so many REALLY hurting. The literal earth is shaking and the waters of the earth are raging today. We are warm and safe and have so much more than we need. Danica is walking around our home and playing. How can I express anything but praise? Brain surgery and fusion is a headline. This is feeling more like second page news.
We never thought this journey would be so long. Remember when Dr. Crawford gave us the first six week benchmark? I now know he was pushing us forward and testing us. Fusing a child Danica's age so often fails. We were just a statistic at the beginning. When he brought up her x-ray on Tuesday and showed us her fusion so far, which is really only at about fifty percent, he first decided the brace had to stay longer. As we talked it through he began to agree we needed to give her some mobility back but emphasized how nothing about the actual mechanics was different with an Aspen collar than with the Minerva. Because of our track record he trusts us to stay the course and keep this girl safe. Nothing has changed and EVERYTHING has changed.
The mending of our hearts and lives will need to continue stitch by stitch. A few practical things are abundantly clear. Danica cannot return to many three year old acitivites for some time. This includes running, freedom in the yard or on a playground or even leaving her without one on one supervision at a play date or Sunday school class. She is allowed to walk around our home in a confined space. She cannot climb stairs by herself or be left alone. We are overjoyed to have the oh so confining brace off her little body and have the wheelchair resigned to the basement. Still, we feel like we are back to the holding our breath everytime she picks up her pace a little too much or curls her toes under. Our job is clear. We must keep her from falling at any cost. We did not come this far to fail her now.
It sounds silly to say we were making plans, but we were. We have enough money left to get by until June. I had planned to come home from this week's appointment, set a date for our Disney trip and then immediately begin a job search. Also the news of Lake Center opening a preschool came at the perfect time. I saw this as God working out a loving and nurturing place for Danica to be so I could even consider or bear to leave her and go back to providing financially. We cannot live on Dan's salary. I have been off work for almost six months now. YOU have made up the difference. You have fed and clothed us and given us shelter. This is perhaps the most humbling and life changing part of our entire experience. The blessing to be able to focus on Danica these past months has been the greatest gift.
The new "six more months" timeframe has us sitting back at the feet of our faithful God wondering what He would have us to do. We know we need to move. The stairs in this home are truly not safe or condusive for Danica's mobility or healing. The one bathroom and her bedroom are upstairs. We are praying hard for God to provide a place for us to move that would be on one level. As difficult as it will be to leave this nest we have made home for almost three years, I can tell you God has demolished almost all my idols and dreams of needing to have earthly roots. This is huge for me because my life was about real estate for so long and since I was a child I have dreamed of a front porch, rooms, and furniture and space and how these things create a life. Dan and I discussed as we pushed the two full beds together at RMH and all three of us slept cozied together how crazy it would be, but we could even do that, share one bedroom, ALL OF US, if we had too. As long as it was our family together. One thing we have down is doing hard things and saying grace.
We know Danica cannot go to a preschool or child care setting until she is cleared for normal activity. This means I need to remain home with her longer or we would have to find one person we trusted to care for just her (who would also be willing to take the great risk of caring for her) so I could work. On top of these concerns my own health is still a factor. I return to Cleveland Clinic Thursday for followup and next steps in healing from my surgery. My bladder continues to bother me. My fibro is a beast. We are so weary and just the thought of finding a new place to live, moving, beignning a new career or leaving our Danica at this point becomes paralyzing.
. . . I wrote this earlier this afternoon. Tonight I am home from a beautiful musical production of "Little Women" at Lake Center Christian School, where Delaney attends and my mom is elementary principal. I often "blog" posts that I don't publish, and I had saved this one in those drafts along with the others that make me a little too vunerable or tell a little too much truth about uncomfortable things people shouldn't talk to strangers about. My worst fear is to come across as ungrateful or even worse, whining. God knows my heart, but while stumbling amongst truth and feelings it's easy to be misunderstood. This is a risk of blogging--of telling our story at all.
After the intermission the students who were performing all got on stage and began quoting Scripture centered around these verses from Psalm 107, "Give thanks to the LORD, for he is good; His love endures forever. Let the redeemed of the LORD tell their story." Our stories matter. Danica's story is not finished. The firm foundation of God's love and faithfulness will be the perfect place to praise Him for whatever He does next in our lives. Shame on me if I quit talking about it now.
Tonight I'm asking you to please pray for our next chapter. Please pray we will continue to rest in the shelter of His arms and continue to trust in His wise provision as we make these decisions. If you know of a one level home coming available in the North Canton, Uniontown area please let us know. We can give 60 days notice here and our lease is through June. As far as me working and care for Danica we are very conflicted on how to move forward. Please pray for God's specific leading in these areas. Most of all don't forget to pray for Danica's continued healing and protection from harm as she tests her legs and new boundaries.
"Perfect submission, all is at rest . . . watching and waiting, looking above, filled with His goodness, lost in His love . . . This is our story, this is our song, praising my Savior all the day long!"
I wonder how to keep writing about Danica's healing and our family's story following such a miraculous step earlier this week. I sense we are all on information overload. There are so many REALLY hurting. The literal earth is shaking and the waters of the earth are raging today. We are warm and safe and have so much more than we need. Danica is walking around our home and playing. How can I express anything but praise? Brain surgery and fusion is a headline. This is feeling more like second page news.
We never thought this journey would be so long. Remember when Dr. Crawford gave us the first six week benchmark? I now know he was pushing us forward and testing us. Fusing a child Danica's age so often fails. We were just a statistic at the beginning. When he brought up her x-ray on Tuesday and showed us her fusion so far, which is really only at about fifty percent, he first decided the brace had to stay longer. As we talked it through he began to agree we needed to give her some mobility back but emphasized how nothing about the actual mechanics was different with an Aspen collar than with the Minerva. Because of our track record he trusts us to stay the course and keep this girl safe. Nothing has changed and EVERYTHING has changed.
The mending of our hearts and lives will need to continue stitch by stitch. A few practical things are abundantly clear. Danica cannot return to many three year old acitivites for some time. This includes running, freedom in the yard or on a playground or even leaving her without one on one supervision at a play date or Sunday school class. She is allowed to walk around our home in a confined space. She cannot climb stairs by herself or be left alone. We are overjoyed to have the oh so confining brace off her little body and have the wheelchair resigned to the basement. Still, we feel like we are back to the holding our breath everytime she picks up her pace a little too much or curls her toes under. Our job is clear. We must keep her from falling at any cost. We did not come this far to fail her now.
It sounds silly to say we were making plans, but we were. We have enough money left to get by until June. I had planned to come home from this week's appointment, set a date for our Disney trip and then immediately begin a job search. Also the news of Lake Center opening a preschool came at the perfect time. I saw this as God working out a loving and nurturing place for Danica to be so I could even consider or bear to leave her and go back to providing financially. We cannot live on Dan's salary. I have been off work for almost six months now. YOU have made up the difference. You have fed and clothed us and given us shelter. This is perhaps the most humbling and life changing part of our entire experience. The blessing to be able to focus on Danica these past months has been the greatest gift.
The new "six more months" timeframe has us sitting back at the feet of our faithful God wondering what He would have us to do. We know we need to move. The stairs in this home are truly not safe or condusive for Danica's mobility or healing. The one bathroom and her bedroom are upstairs. We are praying hard for God to provide a place for us to move that would be on one level. As difficult as it will be to leave this nest we have made home for almost three years, I can tell you God has demolished almost all my idols and dreams of needing to have earthly roots. This is huge for me because my life was about real estate for so long and since I was a child I have dreamed of a front porch, rooms, and furniture and space and how these things create a life. Dan and I discussed as we pushed the two full beds together at RMH and all three of us slept cozied together how crazy it would be, but we could even do that, share one bedroom, ALL OF US, if we had too. As long as it was our family together. One thing we have down is doing hard things and saying grace.
We know Danica cannot go to a preschool or child care setting until she is cleared for normal activity. This means I need to remain home with her longer or we would have to find one person we trusted to care for just her (who would also be willing to take the great risk of caring for her) so I could work. On top of these concerns my own health is still a factor. I return to Cleveland Clinic Thursday for followup and next steps in healing from my surgery. My bladder continues to bother me. My fibro is a beast. We are so weary and just the thought of finding a new place to live, moving, beignning a new career or leaving our Danica at this point becomes paralyzing.
. . . I wrote this earlier this afternoon. Tonight I am home from a beautiful musical production of "Little Women" at Lake Center Christian School, where Delaney attends and my mom is elementary principal. I often "blog" posts that I don't publish, and I had saved this one in those drafts along with the others that make me a little too vunerable or tell a little too much truth about uncomfortable things people shouldn't talk to strangers about. My worst fear is to come across as ungrateful or even worse, whining. God knows my heart, but while stumbling amongst truth and feelings it's easy to be misunderstood. This is a risk of blogging--of telling our story at all.
After the intermission the students who were performing all got on stage and began quoting Scripture centered around these verses from Psalm 107, "Give thanks to the LORD, for he is good; His love endures forever. Let the redeemed of the LORD tell their story." Our stories matter. Danica's story is not finished. The firm foundation of God's love and faithfulness will be the perfect place to praise Him for whatever He does next in our lives. Shame on me if I quit talking about it now.
Tonight I'm asking you to please pray for our next chapter. Please pray we will continue to rest in the shelter of His arms and continue to trust in His wise provision as we make these decisions. If you know of a one level home coming available in the North Canton, Uniontown area please let us know. We can give 60 days notice here and our lease is through June. As far as me working and care for Danica we are very conflicted on how to move forward. Please pray for God's specific leading in these areas. Most of all don't forget to pray for Danica's continued healing and protection from harm as she tests her legs and new boundaries.
"Perfect submission, all is at rest . . . watching and waiting, looking above, filled with His goodness, lost in His love . . . This is our story, this is our song, praising my Savior all the day long!"
Wednesday, March 9, 2011
Faith is the subtance of things hoped for
"All I have seen teaches me to trust the Creator for all I have not seen." Ralph Waldo Emerson
I have been spending the day in my pajamas just BEING with Danica. My amazing husband did three loads of laundry last night when we got home and was able to take this afternoon off to go get groceries and pick up Delaney from school. My adrenaline is pretty much gone, and I am in a lot of pain. Taking care of Danica sitting in one place was hard but keeping up with her now is an even more vigilant job. (She is truly only about fifty percent fused. I will talk more about this later.) I focused on just one thing today, my girl.
I have been jotting a few notes here and there to try to remember all the doctors said and everything that happened during our trip. Mostly, I have been hugging Danica a lot . . . and sniffing her head because she finally got her first bath and scrubbed her hair. We read so many books snuggled under the covers in my bed. She is obssessed with letters and words and can finally nestle in next to me without hurting me with her brace. I held her fleshy body close to me and felt her squishy little torso. We played doctor for a long time this afternoon. She wore her princess crown and in perfect order and doctor lingo checked all my vitals and gave me a diagnosis. Danica insists she will be a doctor someday, and I believe her more than ever because impossible is certainly not a word in this family anymore.
Every once in while I look over at my girl and start to cry. This child embodies so much faith, so much hope and so much love. You are ALL part of her miracle because of your faithful prayers and support. Thank you. You are part of something bigger than we can see now. You are investing in eternal things, not just physical. THIS love is as much a miracle as the healing happening in Danica's brain and spine.
I am posting the photos and videos from our trip below set to one of our "theme" songs, "What faith can do", by Kutless. I promise if you watch through to the end you'll see Danica walking. If you have shared Danica's story at all over the past year or asked people to pray for her and our family won't you please pass this post on through facebook or by email and ask them to praise God with us?
I have been spending the day in my pajamas just BEING with Danica. My amazing husband did three loads of laundry last night when we got home and was able to take this afternoon off to go get groceries and pick up Delaney from school. My adrenaline is pretty much gone, and I am in a lot of pain. Taking care of Danica sitting in one place was hard but keeping up with her now is an even more vigilant job. (She is truly only about fifty percent fused. I will talk more about this later.) I focused on just one thing today, my girl.
I have been jotting a few notes here and there to try to remember all the doctors said and everything that happened during our trip. Mostly, I have been hugging Danica a lot . . . and sniffing her head because she finally got her first bath and scrubbed her hair. We read so many books snuggled under the covers in my bed. She is obssessed with letters and words and can finally nestle in next to me without hurting me with her brace. I held her fleshy body close to me and felt her squishy little torso. We played doctor for a long time this afternoon. She wore her princess crown and in perfect order and doctor lingo checked all my vitals and gave me a diagnosis. Danica insists she will be a doctor someday, and I believe her more than ever because impossible is certainly not a word in this family anymore.
Every once in while I look over at my girl and start to cry. This child embodies so much faith, so much hope and so much love. You are ALL part of her miracle because of your faithful prayers and support. Thank you. You are part of something bigger than we can see now. You are investing in eternal things, not just physical. THIS love is as much a miracle as the healing happening in Danica's brain and spine.
I am posting the photos and videos from our trip below set to one of our "theme" songs, "What faith can do", by Kutless. I promise if you watch through to the end you'll see Danica walking. If you have shared Danica's story at all over the past year or asked people to pray for her and our family won't you please pass this post on through facebook or by email and ask them to praise God with us?
Tuesday, March 8, 2011
A little video taste of our joy today . . .
Bye Bye Minerva Brace! from DJ Snyder on Vimeo.
I just rubbed Danica's back as she fell asleep.
SOLI DEO GLORIA!
Monday, March 7, 2011
PRAISE
I have so much to share about our current trip to Cincinnati, but I am truly barely surviving physically. I am afraid not to get it written down tonight because today was such an important day in our long journey, but I am realizing my limitations in even new ways being only two weeks post op and feeling so weak and still having so much pain. So, I am going to do a very short PRAISE version for all of you who aren't facebook friends who have been checking here for news.
DANICA'S MRI SHOWS NO HERNIATION!!!
This is the first time since September, 2009 we have seen a picture of her brain and spinal cord that shows her cerebellum exactly where it should be, tucked neatly in her skull. The hardware made reading the films a little more difficult, but it was beautifully clear she has great CSF flow to her brain. She is healing! If no neurological symptoms appear we do not have to repeat an MRI for a year!
Won't you please give God all the glory tonight for His mercy to our girl and to our family? Won't you sing a new song with us?
Here's the verses, Psalm 40:1-3, running through my head, and I will close with them for now,
I waited patiently for the LORD;
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear the LORD
and put their trust in him.
Thursday, March 3, 2011
It feels like hope
"Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all . . ." Emily Dickinson
That perches in the soul,
And sings the tune--without the words,
And never stops at all . . ." Emily Dickinson
Tuesday, March 1, 2011
Finish the race
I pitched a hissy fit last night. Right in the middle of this crazy long distance run God has been asking me to take I got tangled up in the wires of my catheter and laid down on the track crying my eyes out. I was sad and mad and feeling pretty much defeated. I wondered if it's possible to lose your faith in the last leg. Would God bring someone this far and let them go down like this?
Since my surgery I have been reciting Paul's words, "I have fought the good fight. I have finished the race. I have kept the faith." I keep waiting for the "kick." You know, that thing that happens no matter how much pain a runner is in, no matter how much their legs feel like mush, how matter how much the knife in their side hurts. Once they realize the finish line is just up ahead, somehow they are able to sprint to the end when seconds before they could barely put one foot in front of the other. It's exhilirating to experience when you are the runner. It's miraculous to watch when you are the spectator.
I've been living with Danica's appointments next week as a finish line. Six months now I have been waiting to hear Dr. Crawford say her brace is coming off. I picture it over and over in my mind. Can you imagine the elation we will feel to reach this milestone in Danica's healing? Can you close your eyes and see the laughing and the tears of joy as Danica is WALKING out of that clinic with only an Aspen collar around her neck? Part of this positive imagery is me feeling well. Sure, I'll still be sore and tired from my surgery, but I will be on the mend, and we can FINALLY do the hundreds of things we have been waiting and hoping to do. The sun will be shining and we'll drive home dreaming and smiling. Danica will get to take her first real bath in half a year. We'll get up Wednesday morning and head to Target to the dollar bin and then buy some real clothes that don't have to be cut up the back and slipped under her Minerva. We'll sit her on the potty and put big girl panties back on. We'll go out to eat as a family. We'll go back to church and Sunday school. We'll plan our wish trip to Disney World. Believe me, we have a REAL list that goes on and on.
Wearing a catheter, stopping to empty my pee every few hours in strange bathrooms and fighting through the discomfort of a rubber tube shoved up my urethra during so much walking and riding in the car while I need to be focusing on Danica was not part of the race plan. I am supposed to be in the "kick" over here. This is when I wanted to sprint and get the high fives and hear the theme to "Chariots of Fire" and give God all the glory.
When I woke this morning I was looking at the icky truth about my situation. This sucks. So, I fell down. This is where races are decided. Face down to the ground I had a decision to make. I got up. I limped to the spiritual power bar, water station to hear what God says about this running and finishing stuff. I was amazed.
"...shine like stars in the universe as you hold out the word of life; in order that I may boast on the day of Christ that I did not run or labor for nothing." Philippians 2:15b-16
"Those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
"Everyone who competes in the games goes into strict training. They do it to get a crown that will not last; but we do it to get a crown that will last forever. Therefore, I do not run like a man running aimlessly; I do not fight like a man beating the air. No, I beat my body and make it my slave..." 1 Corinthians 9:25-27a
"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us." Hebrews 12:1
"Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize." 1 Corinthians 9:24
And my favorite, "I consider my life nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me; the task of testifying to the gospel of God's grace." Acts 20:24
Wow. Read it again, "I consider my life nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me; the task of testifying to the gospel of God's grace."
God is still good today. My bladder and kidney may be lazy, but I will not give up. Satan will not steal any joy from me. My life is nothing compared to testifying the gospel of God's grace, the beautiful story of His unmerited favor in choosing me, saving me and blessing me over and over again. His grace is keeping me till the end and promising me I will finish, because He will never let me quit.
(Thank you for all your prayers. Please pray my bladder will wake up soon. Please pray our family will be encouraged and remain hopeful in light of so many continued trials. Most of all please lift us up as we head to Cincinnati on Sunday afternoon. Danica will be sedated Monday morning for her first brain MRI since her surgery. This is always a very exhausting process for her and for Dan and I. It is very hard to let her go for several hours once we get her asleep. Tuesday morning we will see Dr. Crawford and have an x-ray to check on her fusion. Please pray the answer will finally be "Yes!" We need travelling mercies and so much physical strength for this trip. Know we will share our good news as soon as we can. We would not have made it this far without your faithful love and support, and we cannot wait to rejoice with you all. Our hope remains!)
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