My dear childhood friend (and amazing solo piano artist), John Thomas, sent me this Tolkien quote yesterday. It somehow said everything I was feeling about our life.
"Frodo: I can't do this, Sam.
Sam: I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding on to something.
Frodo: What are we holding onto, Sam?
Sam: That there's some good in this world, Mr. Frodo."
Saturday night, September 25th, the Canton chapter of The Foundation for Community Betterment is hosting Rocktoberfest. a night of fabulous food and drink, silent auction and the great music from U2 cover band ONE. Danica is one of the recipients of the event. (Click on the link above to buy tickets and learn more.)
We are holding on. God is showing us grace and good even as the storm gets stronger. We won't turn back.
Tuesday, September 21, 2010
Monday, September 20, 2010
Celebration
"You are more than dust and bones. You are spirit and power and image of God. And you have been given TODAY." Shauna Niequist from Cold Tangerines
Saturday, September 18, 2010
A note from my sister
"For there is no friend like a sister, In calm or stormy weather, To cheer one on the tedious way, To fetch one if one goes astray, To lift one if one totters down, To strengthen whilst one stands." Christina Rosseti
My older sister, Rochelle, asked if she could write a post for my blog. I cannot copy and paste her words without sharing a little of my own heart for her. We are only eighteen months apart in age and growing up we were as different as two girls could be. We took very different paths in life as young adults. She was married young and headed to the mountains of West Virginia. I went to college and started a career in DC. She stayed very close to God, and I wandered about as far as I could get from Him. She spent years on her knees praying for me. Strangely enough her long journey with infertility would bring her to getting pregnant only months before I became pregnant with Delaney. As we began sharing the same season of life together we became very close. God began working in my heart and life to bring me back to Him, and this strengthened our bond.
When I first thought I had lost my pregnancy with Danica Rochelle was the first person I called to grieve with. She knew my heart and how desperately I wanted another baby after five years and why I couldn't bear to lose this one. When God miraculously preserved Danica through all the trauma and the continued subchorionic bleed it was Rochelle that called me every day to check on me and encourage me. When I ended up in the hospital with a blocked kidney for months it was Rochelle who would drive over the mountain to bring me a care package, hug me, and then drive back. She would faithfully call me every night from 11-12 pm when they would monitor the baby for an hour because she knew how painfully lonely I was. She and her husband sacrificed greatly to help us keep our home and pay our bills those months. The night after I had Danica I never really came out of my anesthesia. It was a brutal surgery not a birth. As I came in and out of my haze there was my sister, sleeping in a broken recliner beside me. She said I talked nonsense all night and asked for new dishes. That Christmas she bought me new dishes. Most recently she rearranged her entire life, which is next to impossible, to drive 6 hours and be here the day of my surgery. She could only stay the night. She pulled two hard chairs together and curled up into a ball and slept there with me. She got me ice chips and Panera, and it was like the best slumber party in the world (minus the hysterectomy).
I thank God for her everyday, and I love her more than I can really say. I always say the quote that suits her best is, "God is in the details." She is so lovingly worried about the details of our life the next few months. Here is her post:
First of all let me say "thank you" to all of you who read my sister, Monica's, blog! Secondly, let me say that I will readily admit that I do not possess the same amazing gift for words that my sister does, so I will simply be writing straight from my heart. Many of you have been reading about and following Danica's Chiari Journey over the past 18 months. I am sure as you have read the blog and shared with their family the many ups and downs along the way it has at times brought tears to your eyes and tugged at your heart. However, for those of us closest to them it has been not the past year, or even two that we have watched their struggle, but over three years ago that their lives did a 180 degree turn and it has been uphill ever since. There is no way to actually put into words all that they have faced, but watching my sister, her dear husband, Dan, and sweet girl, Delaney as they faced first a horrific, painful pregnancy to give little Danica life, Monica losing her job and them struggling to put a roof over their heads, the many months of uncertainty, appointments, tests, and pain leading up to Danica's diagnosis, her first brain surgery and recovery, and now Monica's recent surgery coming just weeks before Danica's next scheduled operation has often times left me feeling helpless. What can I do that would help them the most? How can I somehow lessen their burden and let them know how much they are loved?
I can tell you that they do indeed feel loved and supported and for that I thank each and every one of you! So many times Monica has called to share with me a card, e-mail, phone call, or gift from someone, and through tears expressed how much it meant to them and how it was just what they needed to encourage them and help get them through another day. God has used so many people in miraculous ways to meet their needs! Please know that while she has tried vigilantly to send hand written thank you notes to all those who have ministered to them in some way, that in the weeks during and after Danica's surgery this will just not be feasible. I have tried to tell her that people understand and don't expect that, but that is just in her nature. So please know that every thing, no matter how small, is greatly appreciated by them and our family.
The main reason I asked Monica if I could be a guest on her blog is that many of you, like myself may wonder how you can continue to help them in the upcoming weeks. While each expression of love and support is appreciated, many times people send flowers or gifts because they don't know how else to let you know they are thinking about you or praying for you. Danica will be spending quite some time in the PICU (Pediatric Intensive Care Unit) where she will not be allowed to have flowers, balloons, etc. So I wanted to share some suggestions and links with all of you that might be helpful if you would like to do something specific for their family while they are in Cincinnati at the hospital other than donating to Team Danica.
Meal Cards for Monica, Dan and other family helping at the hospital. This enables them to order their meals from room service in Danica's room.
Marriott Gift Cards for lodging. The Ronald McDonald House at Cincinnati Children's is notoriously full and has a waiting list. They can put their name on the list the day before Danica's surgery, but it is not likely they will get in the first week. I know Monica barely even left the room during Danica's first surgery, and this made her almost unable to function when they were released. She had to go home and begin caring for Danica fulltime without doctors and nurses and with no rest for days and nights. They really need a place to take turns getting away to rest. The hotel they stay at is the Springhill Suites Cincinnati Midtown. The hospital arranges reduced rates for them by making reservations, but it is still a little over $100 a night.
Free Ecards delivered through the hospital each day to patients and their families. I am sure Monica will update facbook and this blog as often as she can but will probably not be able to respond personally to many messages during Danica's hospitalization. This is a great way to let them know you are thinking or them and praying for them.
These are just ideas based on needs that I know are a concern for them, such as meals and hotel expense. I hope they are helpful. Most of all, however, I know they covet your continued prayers and appreciate you sharing Danica's story with others so they can pray too. (There is a new facebook share buttom on the top right of the blog to make this easy for you.) PLEASE pray specifically for Monica's health and strength as she helps care for Danica during her hospitalization and recovery. Pray for Delaney as she faces yet more time away for her family, home, and routine. Pray for Dan and Monica, as a couple and as parents, they have had to weather so much fear and uncertainty, which is draining emotionally, physically, and spiritually. I know at different times each has been walking this journey ahead of the other, the other feeling they could not go on, but by shear determination and a lot of grace they are still walking this path together. Pray for little Danica, that she will not be anxious and all will go as well as possible during and after surgery. That the doctors will be able to find medications to control her pain and will not cause adverse side effects for her. I know that our God is able to do all this and more!
Thank you for taking time to read this and in advance for each expression of kindness and love towards Monica, Dan, Delaney, and Danica. It will never be forgotten! May God bless you!
My older sister, Rochelle, asked if she could write a post for my blog. I cannot copy and paste her words without sharing a little of my own heart for her. We are only eighteen months apart in age and growing up we were as different as two girls could be. We took very different paths in life as young adults. She was married young and headed to the mountains of West Virginia. I went to college and started a career in DC. She stayed very close to God, and I wandered about as far as I could get from Him. She spent years on her knees praying for me. Strangely enough her long journey with infertility would bring her to getting pregnant only months before I became pregnant with Delaney. As we began sharing the same season of life together we became very close. God began working in my heart and life to bring me back to Him, and this strengthened our bond.
When I first thought I had lost my pregnancy with Danica Rochelle was the first person I called to grieve with. She knew my heart and how desperately I wanted another baby after five years and why I couldn't bear to lose this one. When God miraculously preserved Danica through all the trauma and the continued subchorionic bleed it was Rochelle that called me every day to check on me and encourage me. When I ended up in the hospital with a blocked kidney for months it was Rochelle who would drive over the mountain to bring me a care package, hug me, and then drive back. She would faithfully call me every night from 11-12 pm when they would monitor the baby for an hour because she knew how painfully lonely I was. She and her husband sacrificed greatly to help us keep our home and pay our bills those months. The night after I had Danica I never really came out of my anesthesia. It was a brutal surgery not a birth. As I came in and out of my haze there was my sister, sleeping in a broken recliner beside me. She said I talked nonsense all night and asked for new dishes. That Christmas she bought me new dishes. Most recently she rearranged her entire life, which is next to impossible, to drive 6 hours and be here the day of my surgery. She could only stay the night. She pulled two hard chairs together and curled up into a ball and slept there with me. She got me ice chips and Panera, and it was like the best slumber party in the world (minus the hysterectomy).
I thank God for her everyday, and I love her more than I can really say. I always say the quote that suits her best is, "God is in the details." She is so lovingly worried about the details of our life the next few months. Here is her post:
First of all let me say "thank you" to all of you who read my sister, Monica's, blog! Secondly, let me say that I will readily admit that I do not possess the same amazing gift for words that my sister does, so I will simply be writing straight from my heart. Many of you have been reading about and following Danica's Chiari Journey over the past 18 months. I am sure as you have read the blog and shared with their family the many ups and downs along the way it has at times brought tears to your eyes and tugged at your heart. However, for those of us closest to them it has been not the past year, or even two that we have watched their struggle, but over three years ago that their lives did a 180 degree turn and it has been uphill ever since. There is no way to actually put into words all that they have faced, but watching my sister, her dear husband, Dan, and sweet girl, Delaney as they faced first a horrific, painful pregnancy to give little Danica life, Monica losing her job and them struggling to put a roof over their heads, the many months of uncertainty, appointments, tests, and pain leading up to Danica's diagnosis, her first brain surgery and recovery, and now Monica's recent surgery coming just weeks before Danica's next scheduled operation has often times left me feeling helpless. What can I do that would help them the most? How can I somehow lessen their burden and let them know how much they are loved?
I can tell you that they do indeed feel loved and supported and for that I thank each and every one of you! So many times Monica has called to share with me a card, e-mail, phone call, or gift from someone, and through tears expressed how much it meant to them and how it was just what they needed to encourage them and help get them through another day. God has used so many people in miraculous ways to meet their needs! Please know that while she has tried vigilantly to send hand written thank you notes to all those who have ministered to them in some way, that in the weeks during and after Danica's surgery this will just not be feasible. I have tried to tell her that people understand and don't expect that, but that is just in her nature. So please know that every thing, no matter how small, is greatly appreciated by them and our family.
The main reason I asked Monica if I could be a guest on her blog is that many of you, like myself may wonder how you can continue to help them in the upcoming weeks. While each expression of love and support is appreciated, many times people send flowers or gifts because they don't know how else to let you know they are thinking about you or praying for you. Danica will be spending quite some time in the PICU (Pediatric Intensive Care Unit) where she will not be allowed to have flowers, balloons, etc. So I wanted to share some suggestions and links with all of you that might be helpful if you would like to do something specific for their family while they are in Cincinnati at the hospital other than donating to Team Danica.
Meal Cards for Monica, Dan and other family helping at the hospital. This enables them to order their meals from room service in Danica's room.
Marriott Gift Cards for lodging. The Ronald McDonald House at Cincinnati Children's is notoriously full and has a waiting list. They can put their name on the list the day before Danica's surgery, but it is not likely they will get in the first week. I know Monica barely even left the room during Danica's first surgery, and this made her almost unable to function when they were released. She had to go home and begin caring for Danica fulltime without doctors and nurses and with no rest for days and nights. They really need a place to take turns getting away to rest. The hotel they stay at is the Springhill Suites Cincinnati Midtown. The hospital arranges reduced rates for them by making reservations, but it is still a little over $100 a night.
Free Ecards delivered through the hospital each day to patients and their families. I am sure Monica will update facbook and this blog as often as she can but will probably not be able to respond personally to many messages during Danica's hospitalization. This is a great way to let them know you are thinking or them and praying for them.
These are just ideas based on needs that I know are a concern for them, such as meals and hotel expense. I hope they are helpful. Most of all, however, I know they covet your continued prayers and appreciate you sharing Danica's story with others so they can pray too. (There is a new facebook share buttom on the top right of the blog to make this easy for you.) PLEASE pray specifically for Monica's health and strength as she helps care for Danica during her hospitalization and recovery. Pray for Delaney as she faces yet more time away for her family, home, and routine. Pray for Dan and Monica, as a couple and as parents, they have had to weather so much fear and uncertainty, which is draining emotionally, physically, and spiritually. I know at different times each has been walking this journey ahead of the other, the other feeling they could not go on, but by shear determination and a lot of grace they are still walking this path together. Pray for little Danica, that she will not be anxious and all will go as well as possible during and after surgery. That the doctors will be able to find medications to control her pain and will not cause adverse side effects for her. I know that our God is able to do all this and more!
Thank you for taking time to read this and in advance for each expression of kindness and love towards Monica, Dan, Delaney, and Danica. It will never be forgotten! May God bless you!
Tuesday, September 14, 2010
When all else falls away
There is a poem called "The Invitation" by Oriah Mountain Dreamer. I have loved it for so long and particularly the last few stanzas,
" . . .It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.
It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
with me
and not shrink back.
It doesn’t interest me
where or what or with whom
you have studied.
I want to know
what sustains you
from the inside
when all else falls away. . ."
I am back to work today. I am weary and bruised after weeks of grief and despair. My recovery has been slow. I know the stress of the fire we are headed into is part of the reason my body has resisted rest and healing. I saw my doctor yesterday, and he explained how much endometriosis he had to leave, particularly on my bowel. I saw the pictures. It is ugly. I need 6 months of Lupron shots. Essentially this will make me feel horrible and act like a crazy person. This isn't dramatic. It just is. He is willing to let me wait until after Danica's surgery to begin these shots, but I must begin them by November. We have to kill the growth on my other organs he could not remove.
We found out yesterday we have to go back to Cincinnati two weeks from today, Septemeber 28th, for an entire day of appointments on the spine side of her surgery. She will have bloodwork and see a pulmonologist and have an EKG. We will tour the hospital that day and hopefully begin to really talk to Danica about why she is having surgery again and what she will wake up to. I asked more questions yesterday. They will make Danica a special carseat for us to get her home after her long hospitalization. She will only be allowed to ride in a car home and then to post operative appointments. A car accident is one of the biggest threats to "ruining" the fusion. When I think about being in this house 3-4 months I just wonder if we will make it. And then I remember, our days were written when there were none of them. We have to make it.
All the details crowd my mind. The calendar and all the appointments here with her pediatrician and there in Cincinnati in two weeks and then before the actual surgery crowd the little squares. I have appointments. I have a million things to do that only a mom can do. No one can cross off these lists for me. The bills need to be paid ahead of time. The mail stopped. Little notes need written for Delaney to find so she will know I love her when we are apart. The list is growing and the days are disappearing.
Danica is turning three years old on October 3rd, two days before her surgery. We decided to have her party this coming Sunday at the Akron Zoo. I can barely make it up my stairs, and I am hosting a party at the Zoo? I don't have plates or napkins or juiceboxes. I know I could have someone else get them, but I want to. I want to make Danica's birthday special. Oh how I am resisting letting go of things I know don't matter in this grand scheme. I cherish celebrations, and we have missed too many.
Delaney turned 8 on Sunday. I got out of bed and took a shower and then I got back in bed to rest. I declared I was going up to Giant Eagle to get wrapping paper and balloons. It's only two blocks from our house. It was the first time I had driven. I forgot the Browns were playing and Giant Eagle would be mobbed with people. So, half way through my little list I start sweating and feeling like I need to pass out. I abandon my cart but no way was I leaving my balloons and wrapping paper. A sweet old lady got me a chair. She helped me check out my things and cut in the long lines and get to my car. The girls let those balloons go and watched them float away, and I was glad I pushed myself, but I knew how silly it was too. By the time I tucked Delaney in Sunday night I was in so much pain and so tired and so grumpy. I bet she will remember the balloons and let the grumpy slide, because that's what we do best here.
It hasn't been pretty. Our entire family has moved back to survival mode. This is something we know. We understand these relationships are built on something stronger than good days. We have loved one another through very hard times before. As we move towards Danica's looming surgery date on the calendar, October 5th, just three weeks from today, everything else falls away. What will sustain us THIS time?
I read these verses yesterday. "This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now CHOOSE LIFE, so that you and your children may live and that you may love the LORD your God, listen to his voice, and hold fast to him. For the LORD is your life." Deuteronomy 30:19-20 I know I have read them before many times, but it was as if God spoke them to me directly. My heart was hard and there was a root of bitterness. This powerful message dug it up in one big chunk and then watered my parched soul. We will keep choosing life. He will sustain us.
Your outpouring of love is part of His plan and purpose in our lives. Thank you. We have been wonderfully fed hand prepared meals for the last 14 days. I don't know why, but there is something so intimate about preparing a meal for someone and coming into their home and saying, "Be full and be well." I have never experienced this before, and I have been changed by it. Your cards and gifts and continued donations to our family are sometimes the way He reminds us, especially on really bad days, He has not turned away. Many of you have asked what you can do to help in the coming weeks, particularly while we are in Cincinnati. I plan to make a post of specific needs when I can. Your faithfulness mirrors His faithfulness.
Thank you most of all for praying. Please specifically pray for continued healing and strength for me. Please pray our family will stay well leading up to the surgery. It is imperative Danica be 100% healthy or they cannot move forward, and it has taken months to get this day set up. She is going to the pediatrician tomorrow for a runny nose and cough, so I am praying it is allergies or something that will pass quickly. After the Zoo on Sunday please understand we will probably stay away from public places and wash our hands even more than usual and hunker down for the storm coming. Lastly continue to pray for Delaney and our marriage and the strength of our family overall. We are praying God will shine through the darkness and get the glory for all He has and will continue to do.
OUR HOPE REMAINS.
(This picture is a VERY special gift Danica received from Dan's Uncle Ralph and Aunt Joyce, a beautiful quilt with a message. It will be treasured forever.)
Sunday, September 5, 2010
Fixated
I am sitting here in bed. A million emotions are bombarding me. I feel pain from many places, but I am fixated on my tongue. For some crazy reason my tongue has been swollen since my surgery on Tuesday. It's gotten worse, not better. I can't find any message board online to assure me it's okay. I am getting more and more freaked out because no matter what I drink or eat or try to do all I can feel or think about is my stupid tongue.
Dan and the girls are gone. I had Dan take Delaney to urgent care for a horrible cough that began awhile ago, and I thought was just allergies, but it truly sounded worse through the night. It sounds like it's not a tickle anymore but settled in her chest. I still cannot drive, so I asked him to take her. Dan doesn't do doctors appointments. He has gone with me to Danica's stuff when I ask, but it's not part of the "role" he plays. He is a horrible medical advocate, and I am regretting sending him even as I write this.
Dan sent me this email a week ago. Maybe it helps explain why our family cannot stay afloat unless I am at the helm and relatively healthy. Dan doesn't do sick. He can function around the situation. He runs the vacuum and does laundry and gets the kids to bed, but he absolutely cannot be emotionally available to the person who is ill. This is not an excuse he uses. There is a real and painful reason he hits a wall when faced with a hospital room or a ventilator or a bedpan. Here's what he wrote:
"In late December, 1983, my mom died of cancer. I think it was breast cancer that spread to her lungs. That fall there was the hayride at my uncle’s house where we had to remind her to “watch her hair” less her wig get caught on the branches on the trail. We met at Jerry’s Sub Shop to discuss hospice. She lived in our dining room and vomited in a pink bucket. Later, I sat with her in the hospital room watching one side of her chest rise up and down until it stopped rising altogether. For Christmas I got new clothes and a Walkman cassette player. These are my memories of 1983.
You threw up into our kitchen sink the other day. The only thing I said to you was to ask you why you chose not to puke in the garbage disposal side of the sink. I didn’t ask how you felt or if you needed anything. Just curious why not the disposal side.
Recently someone emailed words of encouragement for our two upcoming surgery dates. His first effort was the old adage, “What doesn't destroy you only makes you stronger,” or similar. I have heard this sentiment thousands of times, and I think it is quite overused and misdirected. If you follow our life story you get an idea of what our family has endured over the past few years, and I can tell you I am not getting stronger. One may be confusing strength with resiliency, defined as the ability to recover from or adjust easily to misfortune or change. I am very resilient, but it is not from strength, it is from weakness. I am getting weaker and have turned to directing my thoughts elsewhere, becoming numb in the process. I dream great dreams every night and try to escape and make an escape for you and the girls too. I thrive in the weight room where my mind goes blank for ninety minutes. I love the struggle of moving heavy iron until my body gives up. At work I am grateful that every day brings new challenges where it is easy to stay focused and keep busy. If my life events were making me stronger, I would not care which side of the sink is preferred for throwing up.
My father wrote me the following in an email hoping to bring comfort and understanding. “The optimism I got from your mom has helped me through these valleys - with the exception of Justin's death. (Dan's sister lost her son shortly after his birth.) That laid me low, but I realized that I had to get up and play my role.” My dad was born in the thirties and has survived numerous personal losses, gunshot wounds and a heart attack. He is my hero in life and every day we awake, God willing, we have to get up and play a role in the lives of others we love. It’s quite possible that I started to learn these coping methods as a result of my mom’s illness and death. So be it. I’m not going to overanalyze every daily event, emotion or thought. I’m going to live the life provided, and I will be there for my family, for you. I'm sorry I made a big deal about the sink."
I have been so mad at Dan since last night. I have been laying up here alone in my bed in pain. I have been crying my eyes out. I have been fixated on my stupid tongue and what Dan is NOT doing for me. I feel so ashamed this morning as I try to pray and get my heart before God. This is how Dan knows how to love me. This is how he cares for me. He cannot face the depression and pain in my eyes. He cannot bear to watch me suffer, so he does another load of laundry and vacuums again. He does what he knows how to do.
Bottom line, this past week has sucked. I've got to heal. I've got to move past this and quickly, so we can move on to Danica's surgery. Thank you for reminding us of your love through feeding us and calling us and praying for us. Please pray specifically for the decisions I need to make about work. I am supposed to return on Tuesday--yes, the day after tomorrow. This is a complete impossibility. My PTO is gone. I need the kind of faith that moves mountains to say out loud what I know is the only possibility right now. I have to quit working and trust God will provide through the end of the year--through my healing and Danica's healing. Please pray about this. Please pray for my Dan. Please pray for my girls. Pray I will keep my eyes and heart fixated on Jesus and my tongue will heal! Our hope remains.
Dan and the girls are gone. I had Dan take Delaney to urgent care for a horrible cough that began awhile ago, and I thought was just allergies, but it truly sounded worse through the night. It sounds like it's not a tickle anymore but settled in her chest. I still cannot drive, so I asked him to take her. Dan doesn't do doctors appointments. He has gone with me to Danica's stuff when I ask, but it's not part of the "role" he plays. He is a horrible medical advocate, and I am regretting sending him even as I write this.
Dan sent me this email a week ago. Maybe it helps explain why our family cannot stay afloat unless I am at the helm and relatively healthy. Dan doesn't do sick. He can function around the situation. He runs the vacuum and does laundry and gets the kids to bed, but he absolutely cannot be emotionally available to the person who is ill. This is not an excuse he uses. There is a real and painful reason he hits a wall when faced with a hospital room or a ventilator or a bedpan. Here's what he wrote:
"In late December, 1983, my mom died of cancer. I think it was breast cancer that spread to her lungs. That fall there was the hayride at my uncle’s house where we had to remind her to “watch her hair” less her wig get caught on the branches on the trail. We met at Jerry’s Sub Shop to discuss hospice. She lived in our dining room and vomited in a pink bucket. Later, I sat with her in the hospital room watching one side of her chest rise up and down until it stopped rising altogether. For Christmas I got new clothes and a Walkman cassette player. These are my memories of 1983.
You threw up into our kitchen sink the other day. The only thing I said to you was to ask you why you chose not to puke in the garbage disposal side of the sink. I didn’t ask how you felt or if you needed anything. Just curious why not the disposal side.
Recently someone emailed words of encouragement for our two upcoming surgery dates. His first effort was the old adage, “What doesn't destroy you only makes you stronger,” or similar. I have heard this sentiment thousands of times, and I think it is quite overused and misdirected. If you follow our life story you get an idea of what our family has endured over the past few years, and I can tell you I am not getting stronger. One may be confusing strength with resiliency, defined as the ability to recover from or adjust easily to misfortune or change. I am very resilient, but it is not from strength, it is from weakness. I am getting weaker and have turned to directing my thoughts elsewhere, becoming numb in the process. I dream great dreams every night and try to escape and make an escape for you and the girls too. I thrive in the weight room where my mind goes blank for ninety minutes. I love the struggle of moving heavy iron until my body gives up. At work I am grateful that every day brings new challenges where it is easy to stay focused and keep busy. If my life events were making me stronger, I would not care which side of the sink is preferred for throwing up.
My father wrote me the following in an email hoping to bring comfort and understanding. “The optimism I got from your mom has helped me through these valleys - with the exception of Justin's death. (Dan's sister lost her son shortly after his birth.) That laid me low, but I realized that I had to get up and play my role.” My dad was born in the thirties and has survived numerous personal losses, gunshot wounds and a heart attack. He is my hero in life and every day we awake, God willing, we have to get up and play a role in the lives of others we love. It’s quite possible that I started to learn these coping methods as a result of my mom’s illness and death. So be it. I’m not going to overanalyze every daily event, emotion or thought. I’m going to live the life provided, and I will be there for my family, for you. I'm sorry I made a big deal about the sink."
I have been so mad at Dan since last night. I have been laying up here alone in my bed in pain. I have been crying my eyes out. I have been fixated on my stupid tongue and what Dan is NOT doing for me. I feel so ashamed this morning as I try to pray and get my heart before God. This is how Dan knows how to love me. This is how he cares for me. He cannot face the depression and pain in my eyes. He cannot bear to watch me suffer, so he does another load of laundry and vacuums again. He does what he knows how to do.
Bottom line, this past week has sucked. I've got to heal. I've got to move past this and quickly, so we can move on to Danica's surgery. Thank you for reminding us of your love through feeding us and calling us and praying for us. Please pray specifically for the decisions I need to make about work. I am supposed to return on Tuesday--yes, the day after tomorrow. This is a complete impossibility. My PTO is gone. I need the kind of faith that moves mountains to say out loud what I know is the only possibility right now. I have to quit working and trust God will provide through the end of the year--through my healing and Danica's healing. Please pray about this. Please pray for my Dan. Please pray for my girls. Pray I will keep my eyes and heart fixated on Jesus and my tongue will heal! Our hope remains.
Thursday, August 26, 2010
What is real
"Nothing real can be threatened. Nothing unreal exists. Herein lies the peace of God." M. Williamson
Since I was a child I have collected words. I have journals full of quotes. I have word documents on my computer with sentences I have copied and pasted from all over the internet. Sometimes I write single words on a piece of paper or an index card. I need to see them lying around. I have a note from my mom in my Bible that she gave me when I was 15. She left it lying on my bed with a pack of Twizzlers on a rough teenager day. It says, "I love you dearly. Proverbs 3:5-6" I have a sticky note from my dad on my refrigerator that says "Monica and Dan, We love you very much." I keep it because I treasure his penmenship and the words are powerful. I have a card with the above quote on it I have had since college. It has moved over a dozen times with me and somehow I always stick it in a place I will happen upon it at just the right time. I found it today as I grabbed a book to read while waiting at my pre-surgery appointments. Today, these words communicate exactly what I know for sure. The rest may be faith, yes, but the peace of God that passes understanding is not something mystical to me. It comes through powerful words. TRUTH. (See how amazing a word can be standing alone?)
We got the call yesterday with the date for Danica's surgery, October 5th. It's been six long months since we knew this was coming. Now, staring at us on the calendar, it makes me want to throw up, or fall asleep forever, or run away or just flat out refuse to move forward. How do we REALLY do this?
Danica is physically showing more spasticty every day. Her speech has become more drawn out and her complaints of headaches and particularly nighttime symptoms are getting much worse. When her brace is off her neck is very crooked and her facial asymmetry and pressure on her right eye is very evident. We have to take all the risks of these two dangerous procedures and somehow rest in God's leading us to the here and now.
A woman I have only met once before showed up on my doorstep this week. I was exhausted and hadn't showered. I wasn't wearing any makeup and had french onion soup breath. Let's face it, in this day and age we don't drop by people's houses very often. We call ahead so someone can put on lipstick and pick up the toys and clorox wipe the counter. We are always trying to make things look a little more together than they really are for one another. When I opened the door she said to me, "I hope it's okay I'm here. I read your blog, and I had to come over. I needed to tell you God IS speaking." She was crying. This is something I haven't really been able to do for weeks. Partly, I'm sure, as a coping mechanism because I simply cannot expend the energy and also because of the Zoloft I am taking to help me cope which makes you a little numb on purpose. It's like I have a callous worn on my heart to help me do the hard work ahead of me. The sincerity and spontaneous love of this near stranger moved me to finally cry again. Oh how I needed to cry again.
The peace that followed this visit was amazing. God will literally drop people on my porch if necessary to remind me He is REAL. We will do this through His grace and His amazing love demonstrated through each of you and your faithful support. Thank you for not turning away. I am always reminded by Danica's life verses. He is writing this story, and He makes ALL THINGS beautiful in His time. This cannot be threatened. This is real. This is the peace of God.
Since I was a child I have collected words. I have journals full of quotes. I have word documents on my computer with sentences I have copied and pasted from all over the internet. Sometimes I write single words on a piece of paper or an index card. I need to see them lying around. I have a note from my mom in my Bible that she gave me when I was 15. She left it lying on my bed with a pack of Twizzlers on a rough teenager day. It says, "I love you dearly. Proverbs 3:5-6" I have a sticky note from my dad on my refrigerator that says "Monica and Dan, We love you very much." I keep it because I treasure his penmenship and the words are powerful. I have a card with the above quote on it I have had since college. It has moved over a dozen times with me and somehow I always stick it in a place I will happen upon it at just the right time. I found it today as I grabbed a book to read while waiting at my pre-surgery appointments. Today, these words communicate exactly what I know for sure. The rest may be faith, yes, but the peace of God that passes understanding is not something mystical to me. It comes through powerful words. TRUTH. (See how amazing a word can be standing alone?)
We got the call yesterday with the date for Danica's surgery, October 5th. It's been six long months since we knew this was coming. Now, staring at us on the calendar, it makes me want to throw up, or fall asleep forever, or run away or just flat out refuse to move forward. How do we REALLY do this?
Danica is physically showing more spasticty every day. Her speech has become more drawn out and her complaints of headaches and particularly nighttime symptoms are getting much worse. When her brace is off her neck is very crooked and her facial asymmetry and pressure on her right eye is very evident. We have to take all the risks of these two dangerous procedures and somehow rest in God's leading us to the here and now.
A woman I have only met once before showed up on my doorstep this week. I was exhausted and hadn't showered. I wasn't wearing any makeup and had french onion soup breath. Let's face it, in this day and age we don't drop by people's houses very often. We call ahead so someone can put on lipstick and pick up the toys and clorox wipe the counter. We are always trying to make things look a little more together than they really are for one another. When I opened the door she said to me, "I hope it's okay I'm here. I read your blog, and I had to come over. I needed to tell you God IS speaking." She was crying. This is something I haven't really been able to do for weeks. Partly, I'm sure, as a coping mechanism because I simply cannot expend the energy and also because of the Zoloft I am taking to help me cope which makes you a little numb on purpose. It's like I have a callous worn on my heart to help me do the hard work ahead of me. The sincerity and spontaneous love of this near stranger moved me to finally cry again. Oh how I needed to cry again.
The peace that followed this visit was amazing. God will literally drop people on my porch if necessary to remind me He is REAL. We will do this through His grace and His amazing love demonstrated through each of you and your faithful support. Thank you for not turning away. I am always reminded by Danica's life verses. He is writing this story, and He makes ALL THINGS beautiful in His time. This cannot be threatened. This is real. This is the peace of God.
Tuesday, August 24, 2010
Lemonade Ripple
"Some people come into our lives and quickly go. Some stay for awhile and leave footprints on our hearts, and we are never the same." Author Unknown
Remember the little girls from our church and their lemonade stand? About a week after this article was in The Repository the paper was contacted by a woman from a local company, ComDoc. She was so personally moved by Danica's story she approached her boss and team about doing a fundraiser for Danica and our family. This past week we had the privilege of attending the planned icecream social and meeting these generous and caring people. Many local businesses donated items for the basket raffle and Handel's donated the icecream. We left the office changed by the love of people we had never met before and now will never forget. It was a ripple from a simple lemonade stand. Check out the article in today's Repository "Your Life" section titled, "A Scoop for Danica."
Read about "The Lemonade Ripple" here and visit Canton's chapter of The Foundation for Community Betterment's booth at Canton's First Friday on September 3rd to find out more and become part of the ripple! Danica will be one of the recipients of their September 25th Rocktoberfest event.
Remember the little girls from our church and their lemonade stand? About a week after this article was in The Repository the paper was contacted by a woman from a local company, ComDoc. She was so personally moved by Danica's story she approached her boss and team about doing a fundraiser for Danica and our family. This past week we had the privilege of attending the planned icecream social and meeting these generous and caring people. Many local businesses donated items for the basket raffle and Handel's donated the icecream. We left the office changed by the love of people we had never met before and now will never forget. It was a ripple from a simple lemonade stand. Check out the article in today's Repository "Your Life" section titled, "A Scoop for Danica."
Read about "The Lemonade Ripple" here and visit Canton's chapter of The Foundation for Community Betterment's booth at Canton's First Friday on September 3rd to find out more and become part of the ripple! Danica will be one of the recipients of their September 25th Rocktoberfest event.
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