A Love Story

Think for a minute about the greatest love story you can imagine.  Movies have shown us amazing romances, with gifts, fancy nights out, perfect words whispered in the perfect tone of voice.  The books I read in junior high always had the man so in love that he couldn't even notice another woman, his words were always smooth and the sex was magical (yep sex books in junior high).  


One of my favorite love stories though, didn't happen in a book or a movie.  It didn't even happen in a romantic setting.  I witnessed it in white hallways filled with the smell of urine, confused elderly people and grumpy nursing assistants.  The summer I worked as a CNA (certified nursing assistant) was eye opening.  I imagined that the people who worked at the nursing home were there because they wanted to serve someone.   And some of them were, so sweet and respectful to the people we cared for; taking the extra time to make sure they had everything they needed, taking the time to listen.  I didn't know that people who didn't care about the little old people would apply for and get a job like that.  So I was shocked when I saw CNA's who were disrespectful, didn't care or were even mean to the people we were supposed to care for.  Often it was just neglect; hair left unbrushed, faces unwashed.  But their was one woman who lived at the home who was always well cared for.  I remember the first morning she was assigned to my care.  One of the more seasoned CNA's said I wasn't ready to take care of her, she would do her care with me so that I would learn to do it right.  She said it wasn't that I wasn't doing a good job but this woman was special.  So we went through the routine.  Everything had to be just perfect.  The right pillows in the right places, her hair brushed just so, her clothes arranged just right.  This woman couldn't do anything for herself, and she couldn't complain if things weren't done just right.  As we went about our routine the other CNA said "her husband will be here in about an hour.  Everything needs to be perfect by then."  


I think I was expecting a tyrant, but I recognized the man when he came because I had seen him every day I had worked so far.  He was just a regular older man, soft spoken.  He came every day and stayed by her side.  He fed her, brushed her long hair and styled it.  He would sit by her chair, his face close to hers and smile into her eyes as he talked to her.  He would touch her face tenderly--his love for his wife was obvious.  He was also fiercely protective.  The soft spoken man disappeared if he arrived to find she hadn't been cared for like she was supposed to be.  He was her voice, her advocate, her defender.   It was almost puzzling, the way he loved her.  She couldn't give him anything anymore.  She couldn't return his tender caress, his words of love.  She couldn't serve him in any way.   


Ephesians 5:25-28 says "Husbands, go all out in your love for your wives, exactly as Christ did for the church—a love marked by giving, not getting. Christ's love makes the church whole. His words evoke her beauty. Everything he does and says is designed to bring the best out of her, dressing her in dazzling white silk, radiant with holiness. And that is how husbands ought to love their wives. They're really doing themselves a favor—since they're already "one" in marriage." (message)  

I don't know if the man was following scripture or just doing what naturally came out of the love he had for his wife.  But I know it impressed me.  And then I forgot about it.  I was 20, independent,  full of plans for an amazing future.  My (future) husband was going to love me but he wasn't going to need to take care of me.  But 24 years later this older man keeps coming to my mind.  I really think the Holy Spirit keeps reminding me of him.  My awesome plans for my future haven't exactly turned out like I thought they would.  And the independence I cherished has faded down to a low point lately as my health problems have brought on symptoms that make me depend on others more than I really ever wanted to.  I never looked at this old couple's relationship and thought "I want that."  


I'm not big on public affection either.  I cringe when I see friends on facebook talking about how awesome their significant other is.  I always think, "just tell them!  Why are you telling all of us?" (and for everyone I just offended, truly it's not you--it's me.  Keep it up if it makes you happy because it truly is my issue.)  For some reason I'm not different than I was back in highschool when I was still 16 and didn't want my friends to know that I really liked Rick Knowles.   But I am going to make myself (and maybe anyone like me) sick for a minute and publicly proclaim that I really like the man that I married.  


Because I can see now that Rick really does love me like that old man loved his wife in the nursing home.  Lately I don't carry my weight around the house, Rick works all day and then comes home and cooks.  He takes me to the doctor, he takes me to the grocery store, he rubs my head and my back, he researches doctors and treatments online and most importantly he prays for me, with me, and tells me over and over that he would pick me again EVEN IF he knew all of the challenges my health would bring into our lives.    He's thankful to have me in his life in whatever state I happen to be in.   When we first started dating I wanted this exotic romance that would take us on adventures around the world. I wanted flowers and diamonds and fancy restaurants.  Instead I see now that those things make great stories and they're probably fun but they're not really what true love is about.   True love is about being there, it's about laying down your own life for someone else.  For better or worse, for richer or poorer, in sickness and in health. And that's what Rick does.  So next time you see him, tell him that he's a really nice (older) man and that you really respect and admire the way he loves his wife.  

The Shift

I was in Junior High and I remember waiting for my Mom to get home from a doctor appointment.  I don't remember being worried about her appointment.  I mean, she was my Mom.  She was the pillar of strength for our whole family.  It was dark when she pulled in the driveway and put the car in the garage.  No one else was home and I walked through the dark family room to unlock the back door for my Mom.  When she walked in she stopped and looked at me.  I asked if she was ok and she said, "I have a tumor." And then she started to cry.  I wrapped my arms around her and held her as she cried.  In that instant something changed in our relationship.  I realized that the woman who was always there for me, the woman who went to every appointment with me and seemed so unflappable was human--just like me.  She had weaknesses and fears and needed my support just as much as I needed hers.

My mom and I have always been close but I truly do think her health crisis that year was key in shifting our relationship.  We weren't sure if the cancer she had fought 10 years before was back, and we were so thankful to learn her tumor was benign.  But post-op complications meant a long recovery and my Dad would pick me up from school and drive me to the hospital where I would sit by her side, do my homework and drink apple juice until I couldn't stand the flavor anymore.  I just knew that I went from the childlike idea of Mom being there every time I needed her to the idea that I was so blessed to have her in my life in whatever capacity she could be there.

I think that's why it is so strange to me that I don't want my kids to have the experience of having a sick Mom.  So often I grieve over the normalcy that they miss in their lives.  They were 10 months and almost 5 when my aorta dissected and their experience has always been the experience of having a mom with serious health issues.  They've both had to deal with a mom who was more fragile, who couldn't do everything other moms can do.  I never felt cheated by having a mom with health issues but over and over I've felt like my own kids got ripped off somehow.

My daughter easily slips into the role of caregiver and so I push against that and push her to go out and live her own life.  But since she's 20 I do lean on her more and confide in her.  She's always been one to call me on my moods and can sense when something isn't right.  I don't try as hard to be strong for her.  But my baby boy is a different story.  This man-boy was the kid that I couldn't do the pretend cry with.  It did him in.  If my daughter wouldn't share I could pretend to cry and she would giggle over how silly I was.  If I did that to my son he would cry too.  He couldn't stand to see me upset.  So I carry that.  I try to put on the brave face for him.  "Here's what the doctor has said, and it's going to be ok."  But he sees the stress and yet I won't let him break out of the sensitive little boy mold that I've locked him into.

Today was different.  I was frustrated after a call from the doctor's office.  The procedure that's supposed to be the first step in hopefully fixing my CSF leak needs to be scheduled.  The urgency I feel doesn't seem to match the doctors' and so I was told that we're going to get this scheduled and that the doctor who will do the procedure is really booked up so it might not be right away and she'll work on it and call me tomorrow.  I've had a steady headache, dizziness, back pain, fatigue, etc since July now.  But it's really been happening intermittently for the past 5 years.  It's obviously not killing me but I'm weary.  So I hung up the phone, sat down to trim beans for dinner and silently started to cry.  And that's when the shift happened.  My man-boy came over and wrapped an arm around my shoulder.  He asked me to talk to him and as I poured out my frustration in the middle of my sobs he held on to me and reminded me, "Mom, God's got this."  He asked me what he could do to help me, and as I leaned my cheek against his big, hairy, man-arms I said "you're doing it."   It's that shift like I had with my mom happening all over again.  Maybe it's a shift that's hardest with your baby.  He's not a little boy anymore.  He doesn't need to be protected and sheltered anymore.  It's ok for him to see that I have weaknesses and fears and that I really need his support just like he needs mine.

My son is right.  God does have this.  Every delay in my treatment can be used for great things.  God taught me something so valuable today that I wouldn't have learned without the delay.  My son is growing into a man who is strong and dependable.  He doesn't need me like he did even 5 years ago.  But what a beautiful thing to start to transition to the relationship that we'll have for the rest of our lives.    Thanks for my son God, and thanks for the lesson.

Worthless?

Weeks ago I was laying flat on my back with a headache.  As Rick, my husband, walked past I said "I feel worthless; I'm just laying here doing nothing."   That was before I got the test results that told me that I have a CSF leak.  You would probably think that finding out that I have the leak made me feel like it was ok to lie around.  But I really don't like lying around. I like to be up and doing things.  I like to be the one serving others.  I like to be active and involved.  And there's really nothing wrong with that.  But in this period of time, many of the things that fed my worth have been stripped away and it's a struggle for me emotionally.

Our society equates worth with what we contribute.  I can remember as a young stay-at-home wife and mother attending business parties with my husband.  Other women would ask me, "What do you do?" My answer that I was home full-time was usually met with a polite dismissing comment and they would excuse themselves to talk to someone who seemed more interesting to them.  I was happy to be home with my kids, but these encounters still stung.  Part of the way I dealt with it was to remember that my contributions weren't financial but they were still important.  And that way of thinking has carried me for a lot of years.  Again, I don't think that it's a bad way to think.

But like God so often does when we're on the edge of the truth, he finds a way to bring me into his center because God doesn't want me to stay on the edge.  All these years I've been justifying my lack of outside employment and how that ties to my worth by looking at all of the ways I contribute through my life.  I could count up hours instead of dollars and I felt good about how much I was pouring myself out to serve others even if I wasn't making any money doing so.  I still felt like I was contributing--to my home, to society, to God's kingdom.

God says my worth comes from who I am and whose I am, not my tasks. I've said I believed that for years.  But if I truly believe that, when my tasks have to slow down or stop, I wouldn't feel worthless.  Scripture over and over talks about worthless idols and often when people are described as worthless it is because of their idol worship.  Am I an idol worshipper?  Maybe, if the idol is being healthy or being the one who jumps to help others.  (Remember an idol is anything that takes the place of honor that should only be reserved for God.  If these things are more important than doing what God asks, they've become idols)

So when I first had to start staying home more and laying around more I thought, "Ok, I'll just be the prayer warrior.  I can't go in and serve but I can be useful by praying like crazy while I'm home."  Again, this isn't a bad thing.  It's awesome to pray for others but my ability to spend time praying for others doesn't give me my worth anymore than a job or volunteering or any task does.  Philippians 3 says, “I once thought these things were valuable, but now I consider them worthless because of what Christ has done. ⁸ Yes, everything else is worthless when compared with the infinite value of knowing Christ Jesus my Lord. For his sake I have discarded everything else, counting it all as garbage, so that I could gain Christ ⁹and become one with him." (NLT)  Christ is the one who gives me my worth.  Not because of anything in me or anything I do, but because of HIM!  Psalm 139:13-15 reminds me that I am fearfully and wonderfully made and again the thing that tells me is that my worth comes from being made by God.  It says "wonderful are your works." Not because we're special on our own but because God is special and he made us.  

So if my worth comes from being created by God and the gift of Christ's righteousness, I can rest in that when I can't do anything else.  When I can't do anything else, I can still love the Lord with all my heart, all my soul, all my mind and all my strength. (Mark 12:28-34) So when I go back to the basic questions; "What gives me my worth? What makes my life worthwhile?" I can fall back on the truth of scripture and remember that there's nothing I can do that will add to what Christ has already done.  I just need to live my life worshiping the one who gave me life and has allowed my present circumstances.  That's a lesson worth learning.  

There's a monster in my closet

I woke myself up this morning from a dream yelling "Daddy!!"  My 20 year old daughter came running in to see what was wrong with me.  Obviously, I was fine.  But I was dreaming that I had woken up and a cupboard over my closet (from the house we lived in 6 years ago) was opening on it's own.  I must have jerked in my sleep which knocked my cpap mask slightly off which makes the machine loud.  The sound--a hissy, gurgly sound--crept it's way into my dream and I was sure there was something in the closet cupboard hissing or growling at me.  So I yelled.

Now here's the crazy confession, I've always been afraid of my closet.  Any bedroom closet.  Growing up I couldn't sleep if the closet door was open, and often even when it was closed I was sure that there was a monster in there.  I know a lot of kids have that fear. But in college when I had a little apartment by myself I was happy that the closet wasn't in the bedroom and was actually in the living room.  But I still always had to look in there before bed and then make sure the doors were closed.  I still can't sleep well if the closet door is open.  I wake up in the night and without my glasses the shapes all meld together and look frightening.  

The other part that was weird was that I yelled "Daddy!"  I always called my Mom as a kid.  I can remember the only time I ever called my Dad was after hearing my Mom tell my Dad she didn't know why I couldn't call him when I was scared in the night.  For that one night, I called out for Daddy but went right back to the comfort of Mom after that.  And I don't call my husband "daddy" unless I'm talking to my kids.

So as I laid in bed this morning wondering why I would yell and dream of monsters in my closet, I thought of my life right now.  As a kid the monsters in my closet were big scary things that I was afraid were going to hurt me or worse. I started each night trying to convince myself that I had nothing to be afraid of.  My mom even went through a period of time where she would use the logic of showing me the closet, moving all the clothes around before closing the door.  It helped for a few minutes and then the fear would creep in, what if the monsters could hide? I felt like I needed protection as the fear threatened to overwhelm me.  Mom would come and all my fears would melt away as long as she was present.

My monster is now the uncertainty of my life.  Will the neurosurgeon I'm going to see next Thursday take my case or will he determine it's too complicated?  If he refers me out of network will I have an insurance nightmare trying to get them to cover me?  Will any doctor know how to treat this CSF leak?  What if I have to deal with headaches for the rest of my life?  What if they treat it and I end up with surgery complications?  What if they don't treat it and the fuzziness I feel gets worse and turns to real memory loss and I lose other functions because of cranial hypotension?   Those all combine to form a pretty big monster.

My first thought was that I expected Rick, my personal monster-slayer/husband to come running but why on earth would I have called him "Daddy?"  But then I thought about my father God.  He is the only one who can banish the monster of fear.  He's the one who didn't give me a spirit of fear.  He's the only one who knows exactly what the future holds for me and how all of this will turn out.  I also know that he is worthy of my trust.  He doesn't promise me that he'll take care of this for me immediately.  He doesn't promise that I won't have pain, he doesn't even promise that I'll be physically healed on this earth.  But he does promise that he'll never leave me or forsake me.  And because he promises me that he'll be there I know that I can rest in his presence.  I know that his presence is enough to melt my fears, no matter how big the monsters seem.

Healthy Transparency

I struggle with transparency when it comes to my health.  I'm sure that might be a surprise when you read my blog because I talk about it a lot and basically puke out a ton of details.  But in real life I'm more likely to not say anything when I'm struggling.  An incident this morning really made me think about that.  I had thoracentesis yesterday and when I was relating the incident someone said, "Dawn I had no idea you were so ill."  The statement made me cringe.  And later, as I thought some more about it I cringed again for a totally different reason.   I want to be clear, her motives were pure sweetness.  She was expressing love and concern for me so I don't have a problem with her AT ALL.  

Reason number one that I cringed.  I don't want to be defined as ill.  That definition makes me feel weak.  It makes me feel like I am an illness rather than a person with a chronic health condition.  See, I even did it there.  I have a "chronic health condition" not an illness.  Hmm.  So what's my issue?  I don't look at other people who are ill and think they're weak. (unless they're whiny)  I wasn't ever treated differently as a kid by my parents because of my health issues.  I wasn't coddled or told to buck up.  It was just something they walked through with me.  So why does this bug me so much?  Why do I hate it when people ask me how I'm feeling or basically give me any extra attention because of my health?  I really don't know.

Maybe the real answer comes in the second reason I cringed.  As I thought about the conversation later I felt...are you ready for this...PROUD.  Yep, I was proud that she didn't know because that meant that I handled my stuff with strength and grace and stoicism.  And that made me sick.  (not ill, but nauseated at how messed up my thoughts can be)  Why did I make this into a measuring rod that tells me how well I handle my challenges?  Why did I feel like I was winning some unspecified competition by my ability to hide my chronic illness.  

I never want to be the person that people want to escape from at parties.  The one who goes on and on about health issues and whines and complains and seeks attention and sympathy.  I really think that's an ok goal.  However, God has brought me through a lot of crap and continues to do so on a daily basis.  Every time I hide it, I hide the amazing testimony of His love, His strength, His healing, His grace in my life.  That makes me want to cry because I know I couldn't make it through one second of this on my own.  But every time I hide my struggles so that I appear strong, that's exactly what I'm trying to say.  I'm good on my own.  I've got this.  

Ask my husband, my kids, my best friends and they'll tell you that I so don't have this.  I'm so NOT good on my own.  What I want is to come to a place of healthy transparency.  The kind that doesn't make you avoid me at parties because I won't shut up about my latest procedure.  The kind that also doesn't make you want to tell everyone what a hero I am because I'm so strong as I deal with my challenges while I smile humbly in the background.  I want my life, my story to be that yeah, I deal with some crap and God gets me through it every time. I want to be honest but undramatic about what I'm facing.  I want to ask for prayer without feeling stupid because I'm asking for prayer AGAIN.  I want my story to be that I would be a mess of anxiety and pain if I didn't cling to the One who knows exactly what is going on and holds my future in His hands.  I want to live and laugh and love as I honestly deal with the challenges life brings my way.  

Do you ever feel this way?  Like you're hiding what God's doing in your life and you can't figure out why?  Pray with me as I work to be transparent in a healthy way so that God gets all of the glory he deserves.  

Is there any glory in illness?

I like Toby Mac and I really love the song "I Was Made to Love You." One day a few years ago I was listening to this song in my car and singing along loudly--which I love to do since I'm a great singer in my car--and I was feeling how much I really was made to love God. I sang the words "anything, I would give up for you...everything, I'd give it all away" and I heard the voice of the Holy Spirit ask a really simple question. "Even your health?" At that point I pulled my car over and put it in park. I was shaken. During that time period I was dealing with severe headaches (still am) and hadn't had a break from having a headache in months. I had been through countless doctors appointments and tests, many people were praying, some were even counseling me that I must have unconfessed sin to be so ill. God's glory was supposed to be manifest in my healing. God's glory would be shown best by the awesome testimony I would have when he miraculously healed my pain...right? That's how it works...right? And then came the question from God himself. Would I really give up ANYTHING for him? Would I be sick for His glory?

Now, don't misunderstand me. I know God didn't make me sick. He didn't give me Marfan's and all of the complications that go with that. But his question pointed out two things to me. One part was an invitation to go deeper with Him, to examine my commitment to Him. Was I really willing to give up anything? Was I really willing to use every aspect of my life to point to His greatness? Tough questions. The other part was God exposing to me an idol that I had created.

A friend of mine said recently that whatever you fear becomes your god. I was afraid of being incapacitated, afraid of being disabled, afraid that I would end up in a wheelchair or housebound. Awake in the middle of the night, can't get it out of my head fear. And because of that fear I was slowly turning health into an idol. I wanted to do everything in my power to be healthy. I was in charge of taking care of my body; I had to exercise and eat right and see the right doctors and monitor the symptoms and make sure that I knew everything there was to know about my condition and and and...None of these things are bad in and of themselves. But the repeating theme was the big giant "I have to do this." I was taking care of all of it and asking God to come along for the ride. I was trusting God to a degree, but I was taking much of the credit and responsibility on myself. Every aspect of my health focused around me hearing God correctly and doing the right things, not me trusting that God would take care of it and make himself heard. That's an exhausting way to live.

I was believing the lie that God's greatest glory would be shown in total healing. But maybe God's glory is shown best in a life well lived in the midst of great adversity. What if I can truly answer "how are you?" with "great" regardless of my circumstances? Not because I'm denying the adversity but because I feel great because of God's love and strength in me. What if God's peace and the Holy Spirit's presence is so evident in me that people are drawn to Him? What if they see only that peace and joy and know that it has to be from God because of my limitations?

That's what it would mean to be sick for God. Living out my life focused on God's love and constant presence and abundant blessings in the midst of trouble honors God. It's my truest form of worship.

Do you want to know how I answered the Holy Spirit's question that day in the car? I did say yes but tentatively and unenthusiastically. I think I actually said "I guess?" I don't like having problems with my body. I would rather be well, but I'm willing to lay down my desire. I am willing to cling to the promise in Romans 8:18 "[But what of that?] For I consider that the sufferings of this present time (this present life) are not worth being compared with the glory that is about to be revealed to us and in us and for us and conferred on us!" (amplified)

Romans also says in 8:35-37, "Can anything ever separate us from Christ’s love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, or threatened with death? ³⁶ (As the Scriptures say, “For your sake we are killed every day; we are being slaughtered like sheep.”) ³⁷ No, despite all these things, overwhelming victory is ours through Christ, who loved us." (NLT) I am going to embrace the promise of overwhelming victory and live out this present life for God.

The Special Doll

I was talking with a friend recently about my mom and she said she can't ever think about my mom without remembering a story I told her about a doll I received for Christmas one year. I'll tell the story here because it does illustrate what an amazing mom God gave me.

When I was little it seems like money was always tight. There were 9 of us in the house, my Dad owned his own business and clients didn't always pay when they were supposed to. One year when I was preschool age I really wanted a baby doll and buggy for Christmas. I wanted it so bad! I even asked Santa at the mall for it. On Christmas morning all 7 kids had to wait in the long hallway that the bedrooms branched off of until all of us were up and ready to go see our stockings. As we waited for the last few stragglers, the anticipation and excitement would build. This year as I walked out to the living room I saw a doll buggy sitting in front of the fireplace. I had received the gift I was dreaming of! I was thrilled! I ran over and picked up my baby doll...and disappointment set in. I was picturing a perfect, beautiful doll. But what I was holding was a doll with a defect. Her eyes were not set in the sockets like they were supposed to be. Instead they were sunken back in her head. She wasn't beautiful at all. I shook her around a little and tried to fix it. I tried not to let my disappointment show. But I finally took her to my mom and told her that something was wrong with my baby doll. Close to tears I showed her the dolls eyes and asked her if they could be fixed. She told me no and then this is the part that I think illustrates what an amazing mother I have. But before I tell you I want you to imagine being in my mom's shoes. Money is tight, you have 7 kids, it's Christmas, and the only doll you can afford to give to grant your baby's wish is a defective one. When I asked my question she didn't show disappointment or shame, she just said, "you know, I think Santa knew that you would love that doll no matter what. You see, sometimes God gives parents a baby that has something wrong with it. He can only give those babies to the really special parents, the ones who will love that baby just like it is. I think that God knows you're one of those really special ones, so Santa knew you could love that doll." So love her I did. Sometimes I was embarrassed when a bunch of girls got together to play dolls and inevitably someone would ask me what was wrong with my doll. Sometimes I tried to hide her face. But my mom's words stuck with me and I kept that baby doll and loved her even when I received new dolls who were perfect in later years.

My mom didn't know at that point that I had been born with a genetic defect. She had already gone through 6 months of a hip brace, 3 surgeries, and countless doctor's appointments by that time. She had already dealt with rude people telling her she shouldn't let me act like a 2 year old because I was so tall that I looked 4 or 5 when I was 2. She didn't know that she would go through years of orthopedic visits with me crying and arguing. She didn't know that I would be teased mercilessly for my height and my skinny arms and legs and come home from school many days in tears. She didn't know that I would be hospitalized and sick with severe headaches for months in 1st grade, have surgery on my foot twice, and finally be diagnosed with Marfan's at 21. My mom was there every step of the way. She and my Dad were there during my high risk labor and delivery, they were there praying and pleading with God when my aorta dissected. They were there in my recovery taking care of me and helping with my kids as we lived with my parents while I healed. I was a pretty high maintenance kid and I'm still a high maintenance adult and their motto continues to be at 77 that if I need them, they'll be here.

And so I think back to her words..."sometimes God gives parents a baby that has something wrong with it. He can only give those babies to the really special parents, the ones who will love that baby just like it is." I think God knew that my parents would love me in the midst of my imperfection. I think God knew that they wouldn't ever make me feel like I shouldn't be the person I was. I am so thankful for the amazing, special parents that God gave me. Thanks for the lesson, Mom and Dad. You said it, Mom, and then you guys lived it out in my life.