Sunday, February 21, 2010

Make Me Aware

I remember the night we did the home pregnancy test. I was at work and called my husband to ask him to pick up a test. He was so afraid of running into someone he knew as he was buying it that he drove about 30 minutes out of town to a drugstore. He was pretty sure it was going to be negative. Back in those days you were supposed to do the test first thing in the morning, so I got off work at 11:30pm and the plan was that we would watch a movie and the next morning I would do the test. But about half way through the movie I couldn't stand the suspense so we paused it and I went into the bathroom. Rick kept insisting it was going to be negative. So I waited the 5 minutes and read the test and called to Rick, "come here, you've got to see this." He called back, "I know it's negative." I said "just come see." So he walked in, looked at the stick, covered his mouth with both hands and just kept saying "oh my gosh" over and over. Then we hugged and we both started crying. To say we were overwhelmed would be an understatement. We had been married a month at this point, we were in our early twenties, and the doctors had said that this could kill me. No big deal, right?

Our first appointment with the Dr. was pretty routine except that he said "okay, we can't wait until September to do these tests on your heart. We need to see where you're at risk wise so that we can terminate before it's too late if you're too high risk." I was stunned and said "I'm not getting rid of my baby, no matter what the tests show." So he said "Ok, then there's no rush and we can wait until September."

Pregnancy was like a dream come true for me. I loved every part of it. I loved even the parts that were unpleasant. I carried saltine crackers with me everywhere to combat constant nausea (as well as constant hunger). But as I would wake up and feel like throwing up I would think, "this is so cool that I get to go through morning sickness." My friend Martha was so excited with us and became an amazing support. One night we were working together when I was about 6 weeks pregnant. It was a slow night and she suggested that we try to find the baby's heartbeat with the doppler. She moved the doppler around for a few seconds and then this loud, steady, fast heartbeat filled the room. I started to laugh and the doppler bounced around and we lost the heartbeat. So she told me to calm down and hold still and she found it again and I giggled again. This cycle repeated for several minutes until we were both laughing with tears running down our faces. I had a real baby growing in me, my baby had a real heartbeat, this was really happening.

We had this underlying fear, knowing that things could go wrong because of my Marfan Syndrome and at the same time deciding that we were going to trust God, we were going to trust that this was His will for our family and we didn't have to be afraid. And it was really an uneventful pregnancy. My echocardiograms stayed good, my aorta didn't change at all during the pregnancy.

The scariest moment was the meeting with the anesthesiologist. Because of my risk factors the delivery would be high risk. I couldn't use the birthing suites, I needed an old fashioned delivery room. I would be induced, I would have an epidural from early on in labor so that I wouldn't feel the contractions and have my blood pressure go up in response to the pain, they probably wouldn't let me push much and I would need an arterial line to monitor blood pressure and blood gases and I should plan on 24 hours in ICU for monitoring after delivery. Scary stuff. But then the anesthesiologist started talking about the need for the full team in case I dissected and crashed during delivery etc etc. We left the meeting feeling like death was crouching around the corner waiting for me. Back to God we went, though. Trusting that He had brought us here.

So we watched and waited. I worked full time in labor and delivery as I developed stretch marks, and ligament pains, and varicose veins...and I rejoiced in all of it. Every part of the experience was such a huge blessing. We talked to our baby; we felt little movements, which turned into big rolling movements as the months went by. I was so sure we were having a boy and couldn't wait to meet him.

Finally, 9 months and 46 pounds later....on March 6th, 1991 we went in for our weekly check. Our doctor decided that my body was ready and told us to come back at 4pm when they would start the induction. We had about 5 hours to kill, we already had our bags in the car, so we went out to lunch and then shopping in Seattle. We both felt like kids on Christmas morning when your parents make you eat breakfast but you're too excited to eat because you know after breakfast you get to open presents. But it was fun to have the people in the shops ask when our baby was due and watch their eyes get big when we told them we were on our way to the hospital.

My friend Martha was our nurse throughout labor and delivery. Things went better than expected; I didn't need the arterial line, I didn't have to go to ICU afterward. And since I was all in for the experience, I was thrilled that there was a band around my belly where the epidural wouldn't work. I got to experience labor! I got to feel contractions and feel the need to push. At 2:49 pm on March 7th, 1991 we welcomed our baby into the world. They said "it's a girl!" And I asked them to look again, I was sure it was a boy! But they assured me that we had a daughter. A beautiful, perfect, healthy 7 pound 7 ounce baby girl. Her Daddy said she was "the most beautiful baby in the nursery," that even the nurses thought so, they hadn't said it directly but he could tell.

Our daughter will turn 19 in 2 weeks. People say that she looks just like me, only she's shorter; she doesn't have Marfan's. And in those 19 years, I don't think a day has gone by when I haven't been thankful for the incredible blessing it is to be her Mom. And I go back to our friend Martha, and the way God used her to bless us with our first child, our Kayla Grace.

Maybe that's the way that God wants us to live our lives. Not free from pain or hard things, but constantly aware of His presence and all of the blessings that we have every day. It's not a natural way to live, at least not for me. But I know that I cherished every moment, every experience because I was so aware of how close we had come to missing it all. There's a song by a Christian band, Salvador, and the chorus expresses that very thing. It says,
"Make me aware, make me see
Everything I am is not all about me
Take my world, turn it around
So that the obvious can finally be found
Make me aware
I have been missing so much
Not recognizing your touch
All acknowledging you’re the reason I’m even here"

That's what God did for us, He made us aware and He turned our world around. He kept me safe and He blesses us over and over again. I want to live in that knowledge.

Saturday, February 20, 2010

Martha and God

It's funny how God works in some strange ways. When the cardiologist told us that I shouldn't ever get pregnant we decided that I would have a tubal ligation and just eliminate the risks entirely. The problem was that my insurance didn't cover tubals until you'd carried their insurance for 10 months, and that put us to September with a wedding in June. Hmmm...that wasn't going to work. So we saw some more specialists who agreed with the cardiologist that the risk was too high for me to get pregnant and they wrote letters to our insurance company.

It was emotionally wrenching to be fighting for something that blocked what I had always wanted. But we wanted to preserve my life most of all so we wrote letters and spent hours on the phone with the insurance company. And in the end, they wouldn't be persuaded, they wouldn't cover a tubal until September, we would have to use other methods until then.

At the same time I worked with a nurse named Martha, she was nice, she worked nights and I worked evenings and we knew each other from report and the occasional night when I worked a double. Martha also worked at University of Washington Hospital in labor and delivery. She came in to work one evening and told me that she had been working at the U over the weekend and a woman with Marfan Syndrome had delivered and she was fine and baby was fine. I said cool and blew it off. She was persistent though and told me that this woman had even had surgery already on her heart and she was still able to deliver successfully. She suggested that I go see Dr. Benedetti since he had taken care of this woman and see what he had to say. I thanked her and told her that we had already seen specialists and that our decision had been difficult but it was made.

I was so angry. I hated the decision we had been forced to make but I didn't see any other choice and I didn't feel like Martha knew me well enough to speak into my life in this way. So I told my husband about it and then just let it go. A few days later Martha approached me again and said, "I talked to Dr. Benedetti about you. He would love to talk with you and assess your risk factors." I thanked her and inside seethed that she was being so pushy. I went home and Rick and I talked more and I cried because I didn't want to revisit this decision, it had been too hard in the first place.

My whole family was right with me in what I was feeling with the exception of my sister Diana. She said "go talk to him, what can it hurt? If there's a way to be pregnant with low risk, do it." But even with that encouragement I didn't think I could open this wound again. Enter Martha for the 3rd time when I got to work about a week later, "I talked to Dr. Benedetti's patient care coordinator, she has your name and she's waiting for you to call and schedule an appointment." Man, this woman just couldn't stay out of my business! But this time, when I talked to Rick I said "what if this is God? What if God is trying to give us a message through Martha?"

So we scheduled an appointment for 2 weeks after our wedding and Dr. Benedetti was wonderful. He had cared for women with Marfan's successfully through pregnancy and delivery and he felt that I would be on the low end of high risk. But he wanted to do more tests before I got pregnant, another echocardiogram etc and for that we had to wait until September when insurance would cover my pre-existing condition.

We went home that night and talked and cried. I told Rick "I can't make this decision." I could picture 2 scenarios, I decided to get pregnant, dissected and died during pregnancy and when I got to heaven God would say "why did you get pregnant? I sent you to experts who showed you that you shouldn't." Or I would decide not to get pregnant, die at an old age and when I got to heaven God would say "why didn't you trust that I would take care of you during pregnancy? Why did you block that blessing?" (I know this is theologically inaccurate.) So for the first time we really prayed together--we had prayed together at meals and church--but not like this. Rick said, "God, we can't make this decision. We need to know what you would have us do." And I chimed in and said, "yeah, and God, we need a sign. And not just some easy to miss sign but a flashing, neon, unmistakable sign."

And 2 weeks later, we did a home pregnancy test and it was positive. We think, based on timing, that we got pregnant the night we prayed. How's that for an unmistakable, flashing neon sign? I'm so thankful that Martha was persistent. She became a wonderful friend who I've learned isn't normally pushy like that. I know God used Martha to help guide us to an amazing blessing. Want to hear more about that pregnancy and blessing? That'll be my next post.

Friday, February 19, 2010

I Want to be a Mommy When I Grow Up.

My favorite friend's house when I was in early elementary school was my friend Tina's house. She had the most amazing room upstairs that was entirely devoted to playing house. It was, in essence, a miniature house with a wooden stove, refrigerator, a small table and chairs. But the best part was all of the dolls and accessories. Tina had a million baby dolls. And she had cradles and cribs, blankets, clothes, bottles, strollers. It was heaven for a little girl like me. We would play up there in our pretend world at being mommies, having babies who begged to go with us when we needed to go to the store. Ahhh...bliss.

I am the youngest of 7 kids and whenever anyone asked how many kids I wanted to have when I grew up, I always gave a big number. As I grew, I went through lots of career choices..."I want to be a hairdresser, I want to be a secretary, I want to be a marine biologist, I want to be a pediatrician, I want to be a nurse" changed often, but combined with all of those was the desire to be a mom. The mom part was a given, no matter what I did I would be a mom too. When my cousins Janelle and Sandi and I played house, one of us always had a pillow under our shirt and gave birth to a doll at some point during the day, no matter what other careers we had as we played.

As Rick and I got serious we talked about the number of kids we would have. I wanted 6 and he thought that was a little extreme. After we were engaged we settled on 4 as a good number. At my first appointment with the cardiologist after being diagnosed with Marfan Syndrome, that was one of my first questions, "can I have kids?" My cardiologist told me yes, but that I needed to have them in my 20's.

A year before our wedding, just after graduating from college and accepting a job in labor and delivery at St. Clare Hospital in Lakewood, I went in for my cardiology appointment. My cardiologist did the exam and told me things were unchanged. Then he told me that he had reviewed my case with the cardiology team and he had some bad news. They felt the risk of pregnancy was just too high. Not only did I have the 50% chance of passing Marfans on to my kids, but the increased blood volume of pregnancy was just too dangerous for me. My aorta could dissect and rupture; pregnancy was life threatening and they didn't feel it was a good option for me.

To say I was devastated would be an understatement. I told Rick what the doctor had said and then I told him that I couldn't marry him. He needed to marry someone who could have babies with him. He needed to marry someone healthy. He told me I was crazy, that he needed to marry me--he loved me and he wanted me, even if we never had children. He refused to walk away.

I wasn't sure I could take my new job now. How could I spend 40 hours a week with pregnant women? How could I be faced every day with what I would never experience? But after praying about it, I felt like it was still a field that I loved and that God would be with me and help me in the process.

So I went to work and loved everything about pregnancy. I loved the way pregnant bellies looked. I loved the process of labor and the miracle of birth. I loved being there to hear that first cry and see the wonder on the faces of the parents and the relatives. I loved the tears of joy that filled my eyes and sometimes even slipped down my cheeks each time a baby entered the world.

And I also grieved. I grieved that I would never watch my body grow with another life inside. I grieved that I would never waddle, or have ligament pains, or stretch marks on my belly. I grieved that we would never have that delivery room experience of watching the new life we created emerge into the world. I grieved that no one would ever look at Rick and shout "it's a boy!" or "it's a girl".

I knew we could still have a family. I knew adoption was a beautiful option and that I would love my kids fiercely no matter how they came into my life. I knew that my niece and nephew who had entered our family by adoption were just as much my niece and nephew as the ones born into my family. I knew adoption wasn't the lesser alternative. But my heart ached that my pillow under the shirt play would never become reality.

As hard as working labor and delivery was in the midst of that, I never regretted it. And the added bonus was I met my friend Martha there. In my next post I'll share how God used Martha to bless us more than we could have ever imagined.

Thursday, February 18, 2010

But What if I Don't like Roller Coasters?

It's been about 22 years since I was diagnosed with Marfan Syndrome. The thing that amazes me about that is I've now been aware of my diagnosis for more than half of my life. For over half of my life I've known about this defect that affects all of my connective tissue. At the time of my diagnosis I didn't realize the impact it would have on my life, and yet the details of that day are etched in my memory.

I was a nursing student and like most nursing and medical students the joke is that you self diagnose with multiple illnesses as you read about them and see symptoms in yourself. My roommate and I had just read about Marfans in one of our classes and I remember sitting on our ugly green couch with my book in my lap and saying, "hey, here's what I have." She agreed with me, "oh yeah, it says long arms and legs, long fingers," we laughed and moved on.

Fast forward a month or two and I'm having my yearly physical and after listening to my heart in multiple positions (I have a murmur) and examining my joints and my long fingers my doctor asks me if I've ever heard of Marfan Syndrome. I told her with a smile that I had and that my roommate and I had joked that I had it. She looked at me with a very serious expression and said "I think you do." As I remember that, I always feel like a cell door slams shut. This didn't seem funny anymore. She expained how she had just been reading an article about it and that I fit the profile. So she referred me to a specialist in town and we made an appointment for Monday. This all happened on a Friday of what was supposed to be a fun weekend with my boyfriend (now my husband) Rick. He was living at WSU, I was 70miles North in Spokane for nursing school. I left Student health and started crying. I went to the dining hall where Rick worked and he took one look at me and asked to take a break. He didn't know what the doctor had said but he knew something wasn't right.

The weekend is a blur, my Mom wanted to make the 3oo mile trip and I told her I was fine, I wasn't sick so she didn't need to come. Now that I'm a Mom I would do that differently and have her there. She needed to be there. So Rick went with me to the first of many appointments over the years. They did an echocardiogram and made a tentative diagnosis and referred me to a cardiologist.

As I remember this, it's so surreal. I wasn't sick. I didn't have any symptoms. I was active and healthy. My aorta was slightly dilated and I had lots of physical characteristics, but no major problems. I worked part time at the nursing school library and I can remember researching Marfans whenever it wasn't busy. I wasn't given any resources by the doctors. No one told me about the National Marfan Foundation. The information I found was older and scary. The photos were of the worst cases and yet somehow that became mixed in my brain where I saw that same severity when I looked in the mirror. There was a slight sense of relief that all of the health problems I had dealt with over the years now were related. We didn't know why I had so many weird things wrong and now we knew that they were all because of this same defect.

It was the beginning of a roller coaster ride. And I guess that's the best way to look at living with Marfan's. I was strapped into a ride when I didn't have a clue what to expect. I hadn't seen the track, I didn't know how high it would take me or how big the drops were going to be. But from the highest peaks I've seen views that I never would have seen otherwise. There have been times when it's been an amazing thrill and I'm actually thankful to be on it and there have been times when I'm screaming to get off. The most awesome thing though, is that through it all I've had an in the flesh partner in the ride. Rick wasn't forced on like I was; he chose to step in, strap in and stay for the journey. So many times I told him to just get off, it wasn't his ride, he could find someone else who wasn't strapped into a thrill ride for life and live quietly and peacefully. But he refused to budge.

And the key to enjoying a roller coaster is being able to sway with the ride. If I stiffen up and close my eyes; I'm going to be constantly bumped and bruised and I won't see any of the good things that happen during the ride. Sometimes it's easy to forget that God isn't surprised by any of this. He does know the track, he knows when the drops are coming and how I'll respond. And He also has chosen to step in, strap in and stay with me for the journey. When I can remember that, I'm able to relax and enjoy the ride.

Monday, February 8, 2010

2 Steps Forward and How Many Steps Back?

It was around this date 14 years ago that I got to go home from the hospital after my heart surgery. I was amazed that I was alive, I was amazed that I was up and walking and had only spent a week in the hospital. And here at a week post op I could sing without getting winded and I felt better than I had for months before my surgery. And I still wasn't afraid. I wasn't anxious, that amazing peace was staying with me. I thought this was maybe my new normal. God had fixed me inside and out.

We came home to all of the ice and snow melting, which was great except that we lived in a valley and had a basement and the sump pump couldn't keep up so the basement flooded. My husband was trying to take care of a very sick wife, a 10 month old son and a 4 1/2 year old daughter. A flooded basement was over the top. So, we moved to my parents and I wasn't stressed or worried. Yes!

I continued to improve but after a few days I noticed I was less comfortable laying down, I needed more pillows and eventually just stayed in the recliner. Then it got increasingly difficult to hold my head up, I was exhausted. And then I started to run a fever. So back to the hospital we went and that peace that had been my constant companion decided not to come along. They were concerned I had an infection on the valve--which would mean replacing it--so they were going to readmit me. We did blood cultures, radiologic tests etc.

One problem was that I had 800 cc's of fluid around my heart that needed to be drained off. They do that while you're awake, with a giant needle, and tell you not to move because they could accidentally puncture your heart if you move. Okay, the peace was gone and anxiety was back in full force. They were going to kill me, I just knew it. (They didn't kill me, in case you were wondering) We were in the hospital for another 7 days and I went home on IV antibiotics without a clear understanding of what caused the fever since nothing grew on the cultures.

And my recovery seemed to continue that way. Home, then back because internal stitches pulled loose. Each trip in was worth it, but it was such a hassle. I would think "there, ok, now I'll fully recover" and then something else would happen. On one trip back in I bought a t-shirt from the gift shop that showed a cow hanging over the moon after attempting to jump and getting stuck. It said "Nothing is ever simple" and it seemed to characterize my life.

My walk with God is similar to my recovery. I'll make great strides forward and feel so great and then find myself right back where I thought I had started from. It doesn't always take me as long to move forward again, but it's the continual moving forward and sliding back journey. What I've learned is that the forward motion only happens when I'm not trying to do it my way and on my own. I couldn't make my body heal, I couldn't fix it myself. There were obviously good practices I needed to do to allow myself to heal, but the work was done by someone else. I can't make myself grow spiritually. There are good practices I can put in place and commit to, but scripture tells me that Jesus is the author and perfecter of my faith. I can't make myself have more faith, but I can learn to trust and lean on the Lord. And so that's what I try to do so that I can grow and mature. It's not a quick journey, it's not a simple journey; but it's worth it.

Saturday, February 6, 2010

Wild Thing

This year I'm reading through an Archeological Study Bible. I know that might sound a little dry, but it's actually fascinating to me. I've learned to love historical facts so reading the way that scripture is supported (or not supported) by archeological findings as well as the details about the ancient cultures is bringing a different insight into my reading.

Right now, I'm reading through Exodus about the Israelites flight from Egypt. And I'm amazed at what an Israelite I am. They grumbled and complained about their circumstances...I do the same. They thought they used to have it better--back when they were enslaved, and they're pretty sure God brought them out the the desert to destroy them. Hmmm, I know I've had similar thoughts. So Exodus 14:13-14 (NIV) says "Moses answered the people, 'Do not be afraid. Stand firm and you will see the deliverance the LORD will bring you today. The Egyptians you see today you will never see again. 14 The LORD will fight for you; you need only to be still.'" I'm not running from literal Egyptians. But we all face "Egyptians" in our lives; those obstacles, challenges and threats that we feel pursued by each day. And so God is saying in this that he'll be the one to fight for us, that he'll deal with today's obstacles and challenges and threats and we'll never see them again. We may have new ones tomorrow, but then he'll deal with those.
I don't have to fight, I just have to "be still".

So what does it mean to be still? In the book Where the Wild Things Are by Maurice Sendak, Max comes to the place where the wild things live and they roar terrible roars, gnash terrible teeth, roll their terrible eyes and show their terrible claws until Max says "BE STILL!" and he stares straight into their eyes. And they are all frightened and make him king and they do what he says. Maybe this is a stretch, but at first I thought that I have wild things in my life and through Christ I have the power to tell those wild things to "be still." But in reality, I think I am the wild thing. Things happen in my life, my Egyptians chase me, and I roar and gnash my teeth and roll my eyes and get ready to fight. And then Christ says "BE STILL!"

Those two simple words tell me to stop striving, stop plotting and planning, stop being afraid and angry, and stop fighting. I don't need to do any of that. I just need to follow, without a map or an itinerary. I can follow my king and be at peace with wherever he takes me. Even if it's a small rental condo in Chula Vista. Even if it's a broken body.

God is right here in the middle of my life with me. He will fight for me. He will deliver me. I won't be destroyed.