Defining Moments

It’s funny how life has defining moments. My life will forever be divided into two distinct parts, the 28 years before my aortic dissection and the years after. As of today, January 29^th, 2016, I’ve had 20 years after my dissection. It honestly just hit me as I typed this that I’m actually only 8 years away from catching up to my pre-dissection total.

On the day of my dissection I went about life as planned. My family and I went to my sister’s house to watch the Super Bowl. We ate and watched the game while our kids played. But I remember the feeling of dread I had deep inside that colors my memories of that day, the feeling that made me want to stick close to my husband’s side and convinces me, in hindsight, that beneath my mind’s awareness my body knew something big was happening. I remember feeling like I couldn’t breathe well in the car. And I remember holding my infant son longer than usual after I nursed and rocked him to sleep--wanting to cherish the feel of him in my arms. Three details that would have faded into oblivion if the day had ended like every other. Those three details also fueled my anxiety in the post-dissection years. Any time I felt a sense of dread or the desire to hold a loved one close, it created overwhelming fear that something traumatic was about to happen.

One of my favorite phrases is, “anxiety is a bitch.” But it would be more accurate to say that anxiety is a thief or maybe a tyrant. I knew my survival after my dissection was a miracle. I knew that my survival didn’t make sense—even my surgeon said he wasn’t going to take credit because he was amazed I didn’t die. Well, he didn’t say he was amazed I didn’t die but he did tell my friend he’d never operated on someone whose aorta was that shredded who made it off the table alive. But every celebration of the miracle, every realization of how amazing it was that I was alive was followed by the suffocating fear that I had cheated death and it was only a matter of time until it got me. Anxiety told me I needed to play my cards right, be constantly grateful for the time I had with my kids, cherish every moment on this earth, make only wise health decisions, be vigilant constantly and fight for the life that had already been given to me free and clear. I guess it’s apparent that anxiety is also a liar.

Each year, as January rolled around I could feel it ramp up. Remember Randall Boggs, the creepy, purple, bad monster in Disney’s Monsters Inc.? That’s the face of anxiety for me. January would start and the low level anxiety I lived with fairly peaceably would creep out of the closet and start circling me, usually beneath my conscious awareness. Then he would slither up my legs and circle around my middle, creating restlessness and stomach aches. Eventually he would climb all the way up and rest on my shoulders, weighing me down as he altered my vision and planted horrible fears in my head while whispering, “this is the year your ‘miracle’ runs out.” Shame would often chime in and remind me that I could beat anxiety if I would only trust God enough.

Here’s the truth. I couldn’t trust God enough. I couldn’t will my way out of anxiety. I couldn’t figure out a way to make my body believe that it had actually survived, that the trauma of the dissection was not still happening. And having Marfan syndrome means that health issues stay constant for me, which makes it even harder not to feel like the threat is imminent and very real. As health issues ramped up because aging with severe Marfan syndrome is not easy, the anxiety also became a constant companion. Which is when my therapist entered my life and helped me reclaim it.

I’m not going to go into the details of what she does, or how she helps me, or what’s in my tool chest. If you are looking for those details so you can also find some freedom let me tell you not so gently, but with great compassion and empathy, get yourself to a therapist. You truly can’t do this on your own. I know you’re reading this and thinking that you’re the one who can—I thought that too. I wasted a lot of years thinking that. I had measures of success on my own. But the freedom I have now exists because an objective professional helps me hone the tools that work for my personality and life.

This is the first year that I feel like I’m wholeheartedly celebrating. I’m reflecting on what has happened and feel like I can feel God’s presence and love no matter what is going on in my body or with my health. I don’t know why I survived my dissection. Many people don’t survive that. God also extravagantly loves them. Their lives also had meaning and value; they also had loved ones who needed them, prayed for them, begged for their survival. I’m not more special. I don’t have some huge amazing purpose to fulfill that they didn’t have. So I don’t pretend to understand why I’m still here. I don’t have to understand to embrace it and be thankful.

I do believe that these “after” years are a gift. Every year, every birthday, every gray hair, and every wrinkle—all gifts. Whenever I’m bothered by signs of aging on my body I remind myself that it was almost all stopped at 28. I would have been frozen in pictures with unlined skin, dark brown hair, forever young. Each health challenge gives me another reason to celebrate.

January 29^th, 1996 my life was saved through the hands of a skilled surgeon who replaced a portion of my aorta and my aortic valve.

January 23^rd, 2012 a fantastic neurosurgeon completed the second, and ultimately successful, attempt to repair a spontaneous cerebrospinal fluid leak, ending six years of spinal headaches and worsening weakness to just name a couple symptoms.

January 28^th, 2015 a general surgeon repaired an obturator hernia ending 15 years of intermittent episodes of debilitating abdominal pain. (Obturator hernias are pretty rare, extremely difficult to diagnose and therefore dangerous, and often seen in frail old women who’ve had a lot of kids. That last part never fails to amuse me.)

20 years, 4 years, 1 year. All occurred at the end of January, which is the month when we Americans celebrate fresh starts, new beginnings, and setting aside old ways. Last year as I prepared for surgery amidst panic-laced anxiety, God reminded me of a favorite verse. Isaiah 46:4(NIV) says, “Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.” I love the fact that God will sustain me—I don’t have to sustain myself. But I also love that he reminds me that he was the one who made me. Marfan Syndrome and all of its challenges aren’t a surprise to him. He made me and he promises he will carry me. He’s not going to get tired, neither my problems nor I are going to get too big for him, he’s not going to regret making me in the first place because I need to be carried more than I see others needing it. That’s love that I can celebrate.

This year, as I journaled and prayed about celebrating my life, God led me to another verse. Isaiah 64:3 & 4 says, “We remember that long ago you did amazing things for us that we had never dreamed you’d do. You came down, and the mountains shook at your presence. Nothing like that had ever happened before—no eye had ever seen, and no ear had ever heard such wonders, but you did them then for the sake of your people, for those who trusted in you. (VOICE) The first line is the one that really gets me, “You did amazing things for us that we had never dreamed you’d do.” Before my dissection I firmly believed that if my aorta dissected I would die. Not that I might die, that I WOULD die. As I endured 6 years of headaches and 15 years of abdominal pain I thought maybe this pain was just something I needed to get used to, maybe healing these things wasn’t going to happen for me. God didn’t need unwavering faith, he didn’t need my vigilance, and he didn’t need my expectation for these amazing things to happen.

Over and over again, in all of our lives, God does amazing things. He redeems and he reclaims and he puts the right people in our lives when we need help to heal. He gives life—a free and clear gift, assuring us we owe him nothing in return. I remember and I celebrate.

The Adult in Me

-->

A part of me reached adulthood today.  Well, in all honestly, it’s an added part of me, not something I was born with but something given to me.  The rest of me is 46…turning 47 in June.  But this small part just reached that magical age of 18.  When I was a teenager, 18 had such allure.  It was the age where I would get to do what I wanted with my life.  It was the age where my decisions were my own,. From the other side, as a parent, 18 is the magical age of responsibility—the ultimate goal that we raise our children toward—the ability to be self sufficient and self regulating.  The age where I don’t stop praying and guiding but where my control, my need to regulate, ends and theirs begins.  When my kids have reached that age I realized they will either do what they’re supposed to do...or they won’t.  It’s ultimately the time when I can trust that God, who was in the process from day one, will continue to be in their lives and continue to lead them. 

So going back to the adult in my chest.  18 years ago today doctors cut out my shredded aorta, and my damaged aortic valve, and replaced them with a Dacron graft and a mechanical valve.  (You can read part 1 and part 2 of that story by clicking those links) I woke up to learn that I had this new piece of equipment that I needed to watch out for.  I had to take anticoagulants and monitor my blood levels.  I had to go for regular follow up so that they could monitor the function.  I had to take prophylactic antibiotics whenever I had a procedure—even just having my teeth cleaned—so the valve wouldn’t get infected. I even had to make sure my address stayed current with a registry so that I could be notified if there was ever a problem with the valve.  (Yes, mechanical valves can malfunction and be recalled.) I listened to the loud click, click, click coming from my chest and was reminded that I had something foreign and new inside me and, while I was so thankful to be alive, my anxiety climbed because of the responsibility. I needed to monitor it, I needed to be on top of it and make sure it was doing exactly what it was supposed to do because my very life depended on it.  So I lived grateful but also tightly wound from the vigilance required.  My outward persona didn’t always show it, but the muscles in my shoulders and neck screamed out the secret that I was a bundle of stress and anxiety because I felt like it was my job to help God…and my valve…and my doctors…keep me alive. 

As my children have grown up, I’ve developed a peace about them and their futures that has allowed me to fully turn them over to God and trust that they are responsible people who can make their own decisions.  I also am at peace with the knowledge that I may not love or even agree with every choice they make.  Reflecting on my now adult valve the other day, I asked myself if I could embrace that same peace when it came to this piece of equipment.  Could I trust that this adult in my chest, who was created to do one thing, would do it?  Could I trust that the same God who guided the doctors and saved my life 18 years ago was only asking me to do my part and then trust him with all of the rest? It can be pretty easy to look at my story and feel like my vigilance and my intelligence and my perseverance are the reasons I’m still here.  But I can’t do that for long before I hear God’s voice from Job 38,

“Prepare yourself for the task at hand. I’ll be asking the questions, now— you will supply the answers. Where were you when I dug and laid the foundation of the earth? Explain it to me, if you are acquainted with understanding…In your short run of days, have you ever commanded the morning to begin or taught the sun to rise in its place? Under your watch has the early light ever taken hold of the earth by the edges and shaken the wicked loose?”

My response echoes Job’s,  “I know you can do everything, therefore I realize the truth.”  I don’t have to be constantly tense and anxious, waiting to catch the signs that my health is about to crash and burn.  Instead I can rest, the kind of rest where my breath comes in slow, deep rhythm and I feel my muscles loosen. It is in that rest that I know that whether things are crashing or not, I choose to trust that the same God who saved me—who gave wisdom to scientists who created my valve, who gave skill to doctors who performed my surgery—that he will be the one who is on constant alert so that I don’t have to be. 

I choose to embrace this second adulthood with freedom and peace.  Care to join me?

Lessons From the Playground

Occasionally on Sundays I hang out with my 7 year old friend.  Yesterday was one of those days and we went to the park, which is a favorite thing we do together.  While we were there he met some other kids and they started up a game of tag.  One little girl was one of the youngest in the game and was having so much fun until she was "it".   At first she giggled and chased but when the older kids got away without being tagged again and again, she started to ask someone to please be "it" instead.  As the others reminded her that she needed to tag them first, she finally got frustrated and exclaimed "it's no fun being "it" for this long!  I'm not playing anymore." And she stormed to the other side of the playground.   Her Dad let her stew for a few minutes and then he went over and said, "come on, let me help you tag someone." She came back to play with her Dad by her side coaching her.  She would start to climb up to go over the equipment and he would remind her "you're faster on the ground, don't go over, run around on the ground."  Or he would point out that someone was on the monkey bars and she could run and tag their feet.  She quickly tagged another little girl this way and in her excitement she yelled out, "Now you're 'it'!  Because my Daddy knows a lot about tag! He's really good at it and he's teaching me everything he knows!"  Giggling she ran off to be chased, enjoying the game once more.

I love lessons on the playground.  It made me think of all the times in my life I get locked in to my own way of doing something.  I will try and try my way and eventually walk away in frustration because it's not fun when I can't succeed.  Just like that Dad on the playground, God will only let me stew for a few minutes before he's encouraging me to get back in the game.  He's the one coaching me (and you) on a new approach that may not feel as natural as our own way.  He's the one helping us see the opportunities we've been missing when we're looking at our situations on our own.  

How cool would it be if I could yell out, like that little girl did, my praise to my "Daddy" God?  "I forgive you because my God is really good at forgiving and he's teaching me everything he knows!"  "I'm showing you grace because my God knows everything about grace and he's teaching me!"  "I'm getting really good at loving other people because the creator of love-the one who is love himself-is teaching me!"  

Isn't that what discipleship is really all about?  Living out life with our teacher, learning to see life through our teacher's eyes and then shouting out all the cool things we can do because of Him?  

What's God teaching you right now?  Are you ready to shout it out?

Wounded or Scarred?

It's bathing suit season.  I know, I'm not the only woman in the world to have issues with bathing suit season.   Tall and lanky isn't what most people think of when they think of bikini beauty.  But my scars make bathing suit season even more complicated.

I have a big scar from my open heart surgery.  As far as scars go, everyone tells me it's not too bad.  It healed nicely, especially when you consider that this scar was spread open during 16 hours of emergency surgery.  But it still is a big scar.  It extends from just below my collar bones to about 4 inches above my belly button, right down the center (as an interesting aside, I have an issue with v neck shirts because I always want the scar perfectly centered in the middle of the v).  The scar comes with 3 friends; 2 puncture scars from the chest tubes sit to the right and the left and about 2 inches down from the big scar, and a 5 or 6 inch scar on my right upper thigh is from the bypass tube they put in my femoral artery.  The truth is that I am embarrassed by the imperfection these scars represent.  I'm embarrassed by the reality that I needed to be fixed.  I'm embarrassed by the evidence that I am seriously flawed.

But after 16 years, I'm pretty used to the scars and sometimes I even forget that they're there.  A few years ago a store clerk said, "you had heart surgery." I was surprised and wondered how she knew--then I remembered the scar showed.   Most of the time, they're no big deal.

Sometimes I want to hide them though.  When teen girls at the beach said, "nasty, did you see her scar?"  I wanted to cover up again, pretend that I was flawless.  I think we do the same thing with our emotional scars.  We pretend they aren't there.  We hide them, we cover them, we are ashamed of the evidence of our weakness and injury.  Our society talks about being "scarred" as if it's a horrible thing.  But scars aren't the same as wounds.  A wound is fresh, easily opened, easily re-injured. Wounds need protecting and special care. A scar is a sign of healing.   It is evidence that there was a wound but it has now healed.   My scar will forever be different from the surrounding skin.  It will forever be evidence of my brokenness, but it is a brokenness that God's fingerprints are all over because he made it new.  He designed my body to grow new skin, to knit together the area that was cut open and damaged.

When we let him, he will do the same with our emotional wounds.  We don't have to be forever broken.  God can reach in and redeem even the most "nasty" things.  He can knit together torn and shattered pieces of our lives and make them new.  He needs our cooperation.  If I had just gone right back to life as usual after my surgery, I wouldn't have healed well.  It took months of special care to get to a new normal.   When I've had emotional wounds, I've needed to do the same thing.  I've needed to allow God into the pain and acknowledge that it was really there and I was actually messed up by it.  But with his special care, (and sometimes God uses a professional to help us heal) healing is a possibility. My life may not look or feel the same as it would have if the wound hadn't ever happened, but it still has healed.

How about you?  Do you have hidden wounds you need to bare before God so they can heal?   Do you have scars that are evidence of what God has brought you through?  

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.  

Shaken

This morning I feel shaken.  So I did a search for "shaken bible verse" and this is what I got.  It's pretty cool to read all the different translations.  (if you're a word nerd, anyway)  It came up with Isaiah 54:10, "Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed," says the Lord who has compassion on you. (NIV)   What I love is that I had just been praying, "God I can't feel your peace."  I love that God so quickly reminded me that my ability to feel his peace has nothing to do with the reality of his peace being present.  Our pastor, Mike, likes to remind us that "feelings lie".  My feelings tell me right now that I'm not in God's presence because I don't feel him.  But He's there.  He never leaves.  Wesley's notes on this verse tell me, "the mountains shall sooner depart from their places than any kindness depart from thee."  Yeah, I know it's outdated language but what an awesome reminder.  When I look out my window in the morning I expect Mount Miguel to be right where it was yesterday and the day before and the day before.  But so often I feel shaken and think "where's God?"  Mount Miguel is more likely to be gone when I look out my window.  Matthew Henry's Concise Commentary says, "We are neither to despond under afflictions, nor to despair of relief.  Mountains have been shaken and removed, but the promises of God never were broken by any event."  The events going on in my health right now are big.  But they're not big enough to break God's promises.  These reminders are enough to remove the ball of anxiety from my stomach and settle me back on ground that can not be shaken.  

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.  

Giving it to God, part 4

This is part 4 of a 4 part series.  To read part 1, click here.  To read part 2, click here.  To read part 3, click here. 

Around the same time that I was learning to focus on my blessings instead of the negatives, I also found a new neurologist who specialized in headaches.  He was able to see that I was having 3 different kinds of headaches and found a medication that actually gave me headache free days instead of headache free hours.  It has fewer side effects too.  All in all I was feeling better, exercising regularly, things were looking up.  Best of all my anger at God was gone and I was again growing in relationship with him.  I had a few months of things going really well.  My echo-cardiogram was good so my cardiologist said we could skip my yearly MRI, we went on vacation and got to see family, and I went to my first National Marfan Foundation Conference.   After hearing again the risks and the necessity for monitoring at the conference, I called my cardiologist and requested that we do the MRI.  My headaches also started ramping up again and I noticed that my endurance as I exercised wasn't as good as it had been a few months before.  I thought that the many hours in the car had been too much and I just needed some recovery time.  

I was so anxious as my MRI came closer.  I normally have some anxiety, but they are routine so I don't know why it seemed worse this time.  As they did the test I knew they had found something because they took more time than usual and injected the contrast an extra time.  The results did show a pleural effusion and the radiologist wondered if one of the cysts from my Dural Ectasia had formed a fistula with the pleural space and that's what was contributing to the fluid around the lung.   At this point, it's all speculation based on impressions from the MRI.  I'm not happy that another health challenge has cropped up.  I have referrals to 3 specialists and I'm not looking forward to another season of doctor visits and tests.  I sent an email to family to ask for prayer and I've obviously been praying a lot about it myself.  At first I was filled with anxiety and my anxiety was causing me to not listen very well to God.  I couldn't hear his assurances that he was taking care of me.  Instead I was frustrated and trying desperately not to get angry again.  I was overwhelmed with the thought of a season of poor health; it was made worse by the memory of how far from God I felt when I was so angry.  

I received a text message from my brother after asking for prayer telling me that God had revealed to him that I haven't given my health issues to God, that I still try to control things.  And you know what?  It's true.  That was from God.  I see it in my anxiety. I see it in my need to do everything I can to take care of my body.  I see it in my diet.  I see it in my exercise plan.  None of those things are bad, but it's the heart behind it.  It's the desire to control and do everything right so that things will go well. With that comes frustration when things don't go well because I have done everything right!  God had said the same thing to me earlier in the week--that I needed to just relinquish all of it to him.  I obviously hadn't listened since he told my brother.  The thing is, I love how God works.  If anyone else had said it to me it probably would have made me mad.  But when my brother told me--because of who he is in Christ, because of his humility and his love for me--I wasn't angry I just instantly thought, "Ah, he's right."   I love that God knows our relationship so well that he knew who I would receive the message from.  

So now, here is my dilemma.  I want to surrender this completely to God.  But I don't know how.  I don't know how you balance surrender with appropriate concern and responsibility.  It wouldn't honor God if I just stopped getting medical care, stopped taking care of myself.  I need to use my discernment to know when an issue needs follow up and when I can let it go.  But I want to let it stop with that rather than going beyond that to taking control and responsibility on my own.  I am praying and I know that God will show me how to give this to him, even if I have to do it daily for a while.  

Giving it to God, part 3

This is part 3 of a 4 part series.  To read part 1, click here .  To read part 2, click here.

As much as I wanted to give up the idol I had made of my health and focus on God alone, it felt unattainable.  As weeks turned into months--and eventually I hit the one year anniversary of my constant headache--my weariness, fear and pain turned into anger.  The invitation to come closer seemed to be something I couldn't accept.  I wanted to, but the realization that God could heal me, he could take it all away in an instant if he wanted to, was more than I could handle.  I knew he had heard me crying out and begging for him to take this away, I knew he had seen my tears and my struggles and my fear and he wasn't fixing it.  I knew there was nowhere I could go to get away from God, (see Psalm 139:1-18) but my anger made me want to walk away from him.  I was giving my life to follow him; we had left our home in Washington, my husband had left his corporate job for full time ministry, we were living 1200 miles away from our families and friends and the return on all of that obedience was worsening health and constant pain.  I know that God owes me nothing.  I know that God made the ultimate sacrifice when he sent his son and sacrificed him for our sins. I know that scripture promises that God will never leave us or forsake us. But the knowing didn't change my feelings.  What I felt was abandonment, disregard, and total lack of concern.   And the longer I was angry the more I was sure that God wouldn't want to heal me because I wasn't showing him the reverence that he deserved.  I felt bound, held captive by this anger that I couldn't seem to let go of and the helplessness of knowing that I was the only thing keeping myself from the God that I loved more than anything.  Even on my angriest days, I still loved the Lord.  I still didn't want to try to do life without him.  I wasn't at the point of denying his existence.  But I also didn't know how to reconcile the love that I felt for God with my anger because of my lack of healing and my constant pain.  

I would like to say that I had some fantastic encounter with God that turned me around.  That somehow God showed me this divine purpose for my suffering that made every moment of pain worthwhile.  But that wasn't what happened.  Instead it was a decision.  It was as simple and as difficult as me just deciding that I couldn't go on so angry.  It was the decision to believe that God loves me more than I can ever comprehend and that if he was allowing me to be sick, I had to trust that he would use it for his glory.  So I began doing the things that I knew, the things that were the foundation of my relationship with God.  I started reading my bible, praying, participating in worship.  Most of all I started asking God to give me a new attitude.  I started asking God to heal my anger, to heal my wrong beliefs rather than my physical body.  I came to realize that God cares way more about the state of my heart (not my physical heart) than he does the state of my body.  God had been working on my healing for years and continued to invite me to look at life differently.  He asked me to develop an attitude that seeks to find the blessings instead of the problems.  As someone who leans toward being a pessimist this wasn't an easy thing.  One thing that really helped was a book that my husband gave me by Ann Voskamp called One Thousand Gifts: A Dare to Live Fully Right Where You Are.  One of the phrases she used in the book was "the beautiful ugly" which refers to finding the beauty God has blessed us with in the midst of difficulty.  As I started to list my blessings, to focus on gratitude, God began to change my heart.  He began to transform me into someone who can say that my circumstances may suck, but there are so many other things that are fantastic so I'm not going to be defined by the suckiness.  It's not a denial thing, it's not a refusal to see reality, it's choosing to believe that God really does have my best interests at heart and there is beauty in this life if I open my eyes to see it.  

Giving it to God, part 2

This is part 2 in a 4 part series.  To read Part 1, click here.

Owning my health didn't just lead me to make responsible choices, it led to major struggles with control and frustration because I never could own enough of it to fix it.  Something had to change.  

You can imagine my frustration about 4 or 5 years ago when suddenly a whole new world of challenges began. I started having severe, excruciating headaches.   As a child in 2nd grade I had been sick for 2 months with headaches that were so bad that I couldn't get out of bed.  I was ok if I was lying down, as soon as I stood up the headache came back.  They never were able to determine a cause and eventually it resolved.  Except for migraines it was a onetime occurrence.  After a solid week of constant headache, I went to the doctor.  After a few weeks with no relief they referred me to an ENT (Ear, Nose and Throat specialist) who couldn't find anything wrong.  After more time with no relief, I was referred to a neurologist.  An MRI showed Chiari Malformation so they sent me to a neurosurgeon who did more MRI's and found that my dural ectasia was severe so they couldn't treat the chiari malformation surgically.  I left with an answer of "we really have no idea what to do for you.  Just go live your life."  The neurologist tried medications which offered some relief and lots of side effects, but at least I could function.  I switched to UCSD and still the neurology department didn't really know what to do with me.  I researched on my own, I changed my diet, I adjusted my activity level, and some of it provided some relief, but nothing healed me.  

In the midst of all of this I cried out to God over and over.   I asked everyone close to me to pray.  I asked God to show me if there was some sin in my life that was causing this.  I wanted to make myself right, I wanted to fix this.  If I was blocking God's healing in my life I wanted to know and take care of it.  I confessed my lack of faith; I confessed that I knew God could heal me I just wasn't sure that he wanted to. Time went on and pain became my constant companion.   I argued with God, I was working at a church and homeschooling my kids--both things I felt God had called me to do--so how could I really be effective for him if I hurt all the time.  How could my life be a testimony if I was frustrated and exhausted and needed to lie down?  I could do so much more if he would just make me well!  I had a plan!  Why wasn't he getting on with it?

One day, as I was driving to work I was listening to tobyMac's song Made to Love You and singing along at the top of my lungs because it was one of my favorite songs.  I got to the part where it says "anything, I would give up for you, everything, I give it all away" and as I sang it, I heard a voice say very clearly "even your health?"  I was alone in my car and it wasn't an audible voice but it was loud and clear and it was a voice I knew to be God's.  Shaken, I pulled my car over to the side of the road and just sat there.   God asked me again, "Even your health?  Would you give up your health for me?"  I was stunned.  I knew God wasn't literally saying he was going to make me sick.  I want to be clear on that, I don't believe that God caused my health issues.  But I knew that God was asking me to give up the idol that I had made of my health.  My health was on this high pedestal, it was the unattainable that I was willing to change everything to achieve.  I could readily give up money, fashion, a house, but God knew that my idol was being healthy and he knew that spiritually, that wasn't good for me.  I was able to justify this idol by saying that I was being a good steward.  God said that my body was a temple of the Holy Spirit, so it was honoring God to want to make my temple the best it could be.  He was inviting me to come back to Him and Him alone, forsaking all my idols.  Could I do that for him?  Could I accept whatever came my way with my health and still honor and glorify God with my life?  Could I be sick well?  Could I live without grumbling and complaining?  Could I be joy-filled and pain-filled at the same time?  It was an invitation I wanted to accept.  It was the invitation to come closer to my savior and allow him to be enough, even as my body broke down.  But I knew it wouldn't be easy.  

Just go with the flow

I have been struggling lately. Is that too honest? That's why I haven't blogged in over a month. Some new health challenges cropped up and it really pushed me to a point of profound discouragement and anger. In the middle of this, my family needed to use a groupon certificate that my husband had bought for ocean kayaking before it expired. We've never been ocean kayaking before and I was a little nervous. When I added in my current state of health and my weakness...I was even more nervous. So we set out, I was sharing a kayak with Rick and before we even made it through the waves he leaned wrong and dumped us. Our friends and kids were all out past the surf, we had to continue but I just wanted to turn around and go back. My anxiety was now really high as we tried to climb back in among the waves. We got ourselves situated and headed out to join our group. But we faced the challenge of coordinating our strokes and for whatever reason we couldn't seem to get that unity down. We also faced the ocean current and we spent most of our time fighting against the current, trying to get the kayak to go the way that we wanted it to go, fearing that we were going to be swept in the wrong direction. Every now and then we would look up and see the amazing coastline of La Jolla, or we would watch as our kids seemed to effortlessly glide in their kayaks with friends. We made it back in, relatively unscathed but sore and tired and not entirely sure that this was an experience we enjoyed or would want to repeat.

As I reflected and prayed later I realized that my experience kayaking was a lot like my life.

First of all, I had little real control in the water. I couldn't control the waves, I couldn't control what Rick was doing, I couldn't control the current or the sea lions or anything else that might decide to swim near me. But I fought to be in control. How much easier would kayaking have been, how much easier would my life be if I decided just to accept what I couldn't control.

Secondly, when I let fear and anxiety rule the unity I need to have with my family flies away. Rick and I couldn't get coordinated in our strokes. I was focusing on what he was doing and trying to match it all while sitting in front of him where I couldn't actually see him. That combined with my own innate lack of coordination made it a little difficult for him to try and match my strokes so that we were in sync.

Third, and this is the one that I really felt like God wanted to show me, I can't fight the current. When I fought the current I ended up frustrated and exhausted. I didn't change the current--it continued to flow in the direction it was going to flow in. And fighting it and fearing it made me stiff, it caused me to miss looking up and seeing the beauty all around me. I was so intent on fighting the direction that things were going that I missed the fun of the experience and I missed the scenery.

I have been fighting the current of my life lately. My health issues are big. I have major things wrong with my body. That's the current. And fighting it means that I'm trying to fix the problems in my body and most of them are things that actually can't be fixed. They're caused by a genetic defect that science can't correct yet. So when I fight that current I end up just like I did in the ocean, exhausted, frustrated, full of anxiety and missing a ton of beauty and fun. When I was in my kayak and we went with the current it was a completely different experience. We made progress, we were in sync and it was so much easier. And that's the key learning for my life. The ocean didn't change. The current didn't change, but learning to paddle in a way that used the current and relaxing enough to enjoy going in the direction the current was taking us made for a better experience.

I don't want to miss the beauty and the blessing that God has provided in my life because I'm fighting a current I can't change. It's not giving up when I decide to stop fighting. Sometimes it's just learning to paddle with the current so that the force of the thing that used to drain me now becomes a force that is providing some unique experiences. I guess going kayaking was a good thing after all.


John 10:10 (Amplified Bible) The thief comes only in order to steal and kill and destroy. I came that they may have and enjoy life, and have it in abundance (to the full, till it [a]overflows).