Made, Carried, Sustained, Rescued

It’s been 22 years today since my aorta dissected. (read the story here and here) At the time, I just prayed I would be able to live long enough to raise my babies, who were 4yrs old (going on 5) and 10 months old at that time. 8 days ago my 2nd grandson was born and as I held him I reflected on that desire and felt such gratitude for these past 22 years. I also once again prayed for more years--for the chance to grow old and experience more adventures with my husband, more moments of connection with those I love, more opportunities to serve, learn, grow, laugh, and even cry...just to live. Each year is a gift, each day is a gift (even the really hard, sucky days).

My daughter, Kayla, and grandson, Kayden, painted this for my Christmas gift. Kayla wasn't aware that Isaiah 46:4 is one of my favorite Bible verses. It's actually the verse that comes to mind through every health challenge, every time I feel like "I can't" do this anymore, that navigating all of this is too hard. The full verse 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." (NIV) 




God saw me as I was being formed. (Psalm 139:1-18) God saw my genetic mutation that causes Marfan Syndrome and he knew I would need to be carried more than the average person, and he was okay with that. He knew I would struggle in his arms, demand to be put down, demand the strength to walk this out on my own...all before surrendering to my need for him and allowing him to carry me again, and he was okay with that too. He even knew that we would dance this dance over and over again through the years, and still he loved me enough to assure me that HE would be the one to carry, sustain and rescue me. 

When I tell my dissection story, people often comment on how scary it must have been. When I look back on the story though, I don't remember the fear, I remember the absolute peace. I remember feeling God's presence more strongly than I ever had before. I do remember being scared as we called 911 and I remember asking one of the crew if she prayed and telling her to start praying when she said yes. And then my fear evaporated and was replaced by the assurance that I was being held by God. For those of you who know me well, you know I struggle with fear, anxiety and maybe a little pessimism. You know my mind quickly goes to the worst case scenario, so you also know that one of the miraculous parts of my dissection story--aside from the obvious survival--was that absolute lack of fear and full trust and confidence in God's ability. 

What I know is that I feel fear when I allow myself to be distracted. When I allow my circumstances to fill my mind. No matter what is happening, no matter how bleak or hopeless things seem, my goal (and I really hope you'll join me in this when it comes to challenges in your own life) is to keep myself aware of the presence of the one who says, "I am he who will...."

Marfan Awareness 2016

February is Marfan Awareness Month and every year when it rolls around I think about how my awareness has changed over the years. When I was first diagnosed in 1988, (you can read an old post about my diagnosis here), my awareness was viewed through the lens of medical information. I was in nursing school so I jumped into the facts and stayed there. I was intelligent and a good student. I could study this condition like I studied everything else and make myself an expert and feel like the victor. I wanted to learn everything so I could control and manage my future. Incidentally, this was not an optimal way to cope with this diagnosis but it took me years to realize that kicking into medical mode—and operating there whenever I dealt with Marfan issues—just shoved down the emotional toll a chronic, life-threatening illness can have. Those emotions usually came out as fear and anxiety or anger. But that’s a whole other post.

If you had asked me then, I was fine. I didn’t have significant aortic dilation; I didn’t have major pain symptoms. I didn’t have any major limitations that I wanted to see because I didn’t want to be 3 years into my 4-year degree and need to re-evaluate everything. I also didn’t want to acknowledge that I felt scared and alone. I didn’t know anyone else who had Marfan syndrome. I didn’t know how to navigate the emotions when an instructor giving us information on a cardiac patient asked me, less than a week after my diagnosis…in front of my whole clinical group, if heart transplantation was a possibility for me some day. “Ummm…what?” I didn’t know how to cope when the cardiologist I saw back at home answered my question about prognosis with “well, that’s pretty hard to predict. Some people drop dead at 17, some live to be 35.” This information was inaccurate and out of date even then. But now, thanks to advances in research and care the life expectancy of people with Marfan syndrome is similar to that of the average person. But can you imagine being told that at 21? “Okay, let me just go break up with my fiancé so he can marry someone who’s not going to die young.” (Thankfully Rick wouldn’t let me walk away). I had nowhere to turn a year later when the same cardiologist told me pregnancy was too dangerous to consider. “Ok, let me go try to break up with my fiancé for the second time so he can plan a family with someone else.”

The Marfan Foundation was founded in 1981 but even in 1988 no one told me about them. Not the American Heart Association when my mom called to learn more about Marfan syndrome. Not my cardiologist. Not even my perinatologist when I became pregnant shortly after my wedding. (You can read about my pregnancy here and here.) I navigated those first years after diagnosis with loved ones who knew less than I did and who were also scared and overwhelmed. I had heard horror stories but I didn’t hear anything about the people who were living and thriving with Marfan syndrome. Which, by the way, if you know someone who was just diagnosed with any disease, please save your horror stories. Don’t tell them about your relative or your relative’s friend or your relative’s friend’s neighbor’s sister who died a horrific death. And if you go back to the late 80’s and someone you know mentions having Marfan syndrome don’t ask, “Isn’t that what Flo Hyman died from?”

In the summer of 1991 I sat down to nurse my baby girl while reading my newest copy of American Baby magazine. There was a single paragraph on a page about rare disorders that mentioned Marfan syndrome and listed the Marfan Foundation with a number you could call. Remember this was before the Internet, before blogging, before email even. So I picked up the phone and made a call while sobbing to my sister Doreen. I was crying so hard I could barely talk when she answered the phone. I finally was able to squeak out, “There’s a whole foundation. There’s a Marfan Foundation. I’m not the only one.”

I called the foundation that day, they gave me the number of a local support group contact and in a few minutes I was talking to another person with Marfan syndrome. Someone who had walked through heart surgery and pregnancy and adversity but was living! And she was about 20 years older than I was (she was still doing well last time I connected with her via Facebook a few years ago). The Foundation also gave me the name of a geneticist at University of Washington who was active with the Marfan Foundation. I left my meeting with him feeling like he gave me my life back. I was given accurate information and referred to a cardiologist who really knew about Marfan syndrome and didn’t spout off doom and gloom predictions about my short life span.

Having accurate information was a key first step to living an abundant life while operating within my limitations. Awareness is about so much more than being diagnosed. Obviously knowing the signs and getting that diagnosis saves lives, but having continued support and empowerment as you navigate the healthcare system and the maze of issues that crop up is vital.

Now there are local Marfan Support Groups, online support groups, telephone support groups, a yearly conference, Facebook Groups, even groups tailored for my specific mindset of living well after an aortic dissection…numerous ways to connect, be heard, bounce ideas around and vent to people who are living what you live. Brene Brown, one of my favorite authors, says that the two most powerful words when we’re in struggle are, “me too.” Awareness of the support that’s available and waiting, awareness of others like me, awareness of community and empathy and friendships that bloom across the country and the world, that’s the awareness that continues to change my life. That’s the other aspect of awareness that I celebrate every year during Marfan awareness month.

The Adult in Me

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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?

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.

Giving it to God, part 1

This week, I'm exploring how God has been teaching me to give up control of my health. Today's post is part 1 of 4 posts in this series. 

I can remember a conversation with my Mom when I was really young.  I knew that I had already had surgery for 3 hernias before I was 2.  And then I heard someone talk about hernias being caused by straining or lifting too much.  So I asked, "Mom, did I lift heavy things when I was a baby?"  She told me no and I asked if she was sure that I wasn't trying to carry chairs or something.  

When I was 4, I was diagnosed with scoliosis.  Again, I remember the early questions but I don't know if they were directed toward me or just overheard as someone asked my Mom.  "Is it from poor posture?"  Then later as a teen when I had to wear a Milwaukee brace and hated it desperately, one of my Mom's friends suggested that I should visualize my spine straight and refuse to see it, even in my mind, as curved and then it would straighten and I wouldn't have scoliosis anymore.  

As an adult, an acquaintance told me that she had been researching Marfan Syndrome and believed it was caused by low copper and if I would just buy the supplement she sold that I could probably eradicate my syndrome.  

In my Christian circles, lots of people brought faith in.  "You just need to have more faith."  "It's not going to happen if you don't believe that God can heal you...you DO believe God can heal you, right?"  "You're putting too much faith in medicine, that's why you're not being healed; you trust what your doctors say rather than just believing God."  And I think the most damaging were those who believe that all illness is tied to some sin.  A friend, and don't misunderstand me--this is a wonderful Christian woman who acted out of love and concern for me--gave me a book that she thought would help me.  It was a book that linked specific illnesses to specific un-confessed sins.  

So over and over, starting from a very early age, I swallowed this message that somehow my health challenges were my fault.  Somehow there was something that I was doing, or not doing, that was bringing these constant challenges into my life.  The nurse side of me didn't buy it.  Logically it didn't make sense based on what I knew about my syndrome.  And the friend of Christ side of me didn't really buy it either, it just didn't line up with John 9 where Jesus says that the man wasn't blind because of sin but so the works of God could be displayed in him.  But even as I didn't buy it there was this small voice in my head that whispered that it was my fault.  That if I could just figure out how to do the right things; the right diet, the right activity, the right faith, the right prayers, the right attitude...that somehow I could fix this and not struggle so much with my health.  I willingly embraced the responsibility for my health.  I owned it.  

Scars

My great grandmother sent me a necklace when I was a little girl.  It had a star on a chain and on the star it said "turn your scars into stars."  I didn't wear the necklace more than a few times because I got tired of trying to explain the meaning to the other kids at school.  But I kept it in my jewelry box.  

Open heart surgery left me with a big scar down the center of my chest.  It runs from between my collar bones to just above my belly button, as well as 2 puncture scars on my belly from tubes and a 4 inch scar way up on my upper right thigh from bypass..  Right after I had my surgery I decided I wasn't going to wear anything that showed these scars.  I bought shirts that had round necklines, I bought undershirts for the shirts I owned that went lower, I even bought a bathing suit that hid my scars.   I didn't want anyone else to know that they existed.  I thought they were ugly.  And they felt like evidence of my weakness, of how flawed I am.  

However, God wasn't ok with my attitude.  He showed me that I could hide my scars, but hiding them meant that I was also cutting off opportunities to share my story.  Those scars are a physical testimony of a miraculous healing.  From a worldly stand point there's no reason I should still be alive.   My aorta shredded.  That's usually fatal.  So I stopped hiding it and at first I felt so self-conscious.  People stared at my chest (not something that had ever been a part of my life before.  "Hey buddy, my eyes are up here" wasn't a phrase I had needed to use) I wasn't sure if I should say something when I saw them staring or wait until they asked.  The people who were straight forward were the easiest to handle.  I could easily tell my story when someone asked.  The hardest reactions were when I saw revulsion in someone's eyes.  We live in a society that loves physical beauty and for some people my obvious imperfection was offensive.  Last year at the beach some teens saw my scar and whispered after staring at it, "NASTY".  I'm not going to lie, that still stings.  Most of the time I forget my scars are there now.  They've become a part of who I am.  So much so that a few years ago when a cashier said "you've had heart surgery." I was amazed and asked how she knew.  She said, "um, you have a big scar on your chest."  It was funny.  

Every scar we have isn't going to be physical.   All of the pain that is part of our story can leave scars.  Some are big, some aren't.  Some are going to be repulsive to people.  And we can be tempted to hide them, tempted to pretend they don't exist and that we are unblemished.  But just like my physical scars tell about God saving my life, my emotional scars testify to the amazing love and care of God.  It's not easy to talk about  the parts of my life that haven't been perfect.  However, it is awesome to share the redemption and healing that God continues to do in my life.  If those scars can bring encouragement and hope to someone else, then I want to share how they got there.  I don't want to hide God's story away like I hid my necklace.  I want to share it and give God the glory for all He's done.  

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.

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.

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.

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.

Scary Anniversary

My husband said to me this morning, "today's the scary anniversary...tomorrow's the good one." 14 years ago today my aorta dissected. Now you have to pause after you read that because I can't ever say it without a pause in my speech.

Backing it up, I knew the possibility existed. And the possibility terrified me. I was sure if my aorta dissected I would die. But I had always been told I was fairly low risk, mildly affected, my aorta was slightly dilated, but it hadn't changed much. I went in yearly and lived my life basically ignoring the fact that I have Marfan Syndrome.

Then, bam, on January 25th, 1996 my cardiologist called to tell me that she had been reviewing my latest echocardiogram and didn't like what she had seen. We scheduled an appointment and another echo and she told me I was probably looking at surgery within the year. Wow, I had a 10 month old baby and a little girl who was 4, I couldn't have heart surgery, I didn't have time.

January 28th was Superbowl Sunday and we had plans to go to my sister's house. We woke up to lots of snow and ice and decided to go hang out with my sister and her family anyway. But I didn't feel good. And we had a nice day but I really wanted to stick close to my husband and the whole way home I kept feeling like I couldn't breathe. I thought it was because of the heater blowing in my face.

So we got home and I nursed and rocked my baby to sleep and then just sat and held him for a long time. Finally I laid him down and went to brush my teeth and noticed that the vessels in my neck were all standing out. And I felt this horrible pain in my neck. I told my husband something was wrong, that my neck really hurt. He offered to rub it and I told him he needed to call 911, to tell them that my aorta was probably dissecting. The pain radiated from my neck up to my jaw and finally down to my chest. Sitting on the floor in my living room waiting for the ambulance was horrible. I hurt so bad and I was so scared that I was dying. 2 rescue crews came up to the house and the first thing I said was "don't wake my kids, you'll scare them", the second was "don't let me die". I was terrified, I was 28, too young to leave my husband and babies. Then a woman walked through the door with the 2nd crew and I felt this relief. I didn't know her but I felt something. She came and sat next to me and I told her they couldn't let me die. She said they were going to take care of me and then I asked her if she prayed. She said "all the time" and I said "then please start praying." And she did. She didn't pray aloud, but I instantly felt peace. All of my fear evaporated and I knew that God was taking care of me and I was going to be ok.

Now that's what I knew, but my husband, my parents, my siblings were all still terrified. I was transported to the hospital closest to my house and I told the ER doctor that I was probably dissecting and asked what they were going to do to assess that. He told me an EKG and cardiac enzymes. I told him that wasn't going to tell them anything and they needed to do a CT scan or at the very least an xray and echo to look at my aorta. So they ordered the CT scan and found that my aorta was really big, but they missed the dissection. They needed to transfer me to a hospital that could handle heart surgery and I wanted to be transferred to University of Washington Hospital. They were going to air lift me and then decided that I was stable enough to make the 33 mile drive via ambulance. The roads were sheets of ice and what should have taken 40 minutes actually took hours. The chains on the ambulance tires broke twice and they stopped and both workers got out to fix them. I remember lying there alone thinking "wow, God, this would be really scary if you weren't here and I was actually alone." But because I knew God had this one, rather than fear I just felt this amazing peace, that peace that's beyond all understanding. I am a person who goes to fear and anxiety easily. But I truly didn't have any. I felt like I was wrapped in the arms of the one who had made my body and he was the one who would make sure that I was taken care of. So I didn't need to be afraid.

Tune in tomorrow to see if I survived...;-)