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...."

Someone I Love

When my kids were young they fought a lot. I didn't want to choose sides because it was important to validate each of their feelings behind the conflict. Plus I knew there was always more to the story that I didn't know. (As an aside, they both still felt I took the other's side on a regular basis--probably because we all can feel that way if someone sees and validates our "opponent's" perspective. We think it means that person agrees with them.)

One phrase another mom used that I adopted was, "I don't like it when one person I love hurts another person I love." I can remember both of them being annoyed that I still loved the other person the same way when they were so clearly wrong. But it didn't matter what they had done to their sibling, it didn't matter what they had done wrong period--my love and my hurt when they were hurt remained unchanged.

In the recent days as we hear about violence and shootings my heart, like so many of yours, aches. And each time I see the debates about who's right and who's wrong I feel like we're just missing the point completely. Today, when I heard of three more officers killed, this phrase jumped into my head as I started to pray. I imagined God, filled with grief, heartbroken over the deaths, saying it.

"I don't like it when one person I love hurts another person I love."

What if we could see that there really is no us and them. What if we could see fellow humans, people who God loves just as much as he loves you and me. For those of us who are Christ-followers, we embrace that we can't do anything to make God love us more or love us less. No sin, no offense, no misinterpretation, no bad theology, no crime, not even rejecting or hating God himself makes God love us less or walk away. That is true of every human on this planet. So shouldn't our hearts break when anyone God loves is gunned down? Even if they "did something to deserve it." Even if they "had it coming."

I can't fix what is broken in our world. There's not a magic solution that will make it all better. There will continue to be violence and anger and fear and heartbreak in this world. But I can make sure I'm not part of the problem. I can love, I can forgive, I can seek forgiveness, I can be open to correction, I can listen to another's perspective, I can weep with those who weep. And most importantly I can pray. I can pray that God will open my heart and open my eyes to those who are hurting around me. I can pray that God softens my heart where it's become calloused. That I don't view anyone as them. That I'm quick to ask forgiveness and quick to seek to understand. That I don't let my fear or my complacency or my biases keep me silent in the face of overwhelming pain and loss. And mostly that my heart becomes like God's, that my love grows big enough to be like God's so that I can look at tragedy and instead of picking a side I can just respond to the pain the tragedy causes.

Take a Walk With Me

For as long as I can remember, I’ve struggled with feeling inadequate. I always felt “too” something; too tall, too skinny, too uncoordinated, too silly, too sensitive, too talkative, too smart, too studious, too anxious...this list could go on a while. I wanted desperately to feel comfortable in my own skin, to believe that God’s works were wonderful and “fearfully and wonderfully made,” applied to me. I thought if I just tried harder and if I could bolster my faith I would stop struggling and just feel confident. But until then, I wanted to just blend in.

It’s hard to blend in when you’re a six-foot tall woman. It was hard in junior high when I towered over most of my classmates; it’s still hard living in a community where many of the women are 5’ 5” or under. (As an aside, I’m in Texas right now and apparently everything really does run bigger here because I’ve looked eye-to-eye with more women in the first few hours I was here than usual). However my goal was still just to blend in, and that impacted my personality—don’t make waves, don’t draw attention to yourself by disagreeing or voicing controversial opinions—as well as my style choices—do your hair in a style that doesn’t stand out, wear what everyone else is wearing, etc.

Recently I’ve been doing the hard work of removing that “too” from my definition of myself. This hasn’t been an easy process and I’ve appreciated the guidance of a professional as I’ve worked on re-defining myself. Dedication to quiet time with God, including reflection on what he says in scripture and what the Holy Spirit whispers to me when I’m alone with him in prayer, have helped me to slowly chip away at that skyscraper of a “TOO” that I lived in the shadow of. As I’ve done this work, I’ve realized that God doesn’t want people who blend in, he wants us to shine in our individuality. He wants to empower us to be the truly unique people he designed and then love him and each other as we walk that out.

In 2 John and 3 John, Paul writes about walking in truth. This morning it hit me, I spent years trying to walk out obedience to the good news about Jesus without embracing the truth about who God says I am and how deeply he loves me. It’s impossible to spread or even experience the joy that comes from freedom in Christ when you are still chained to an inaccurate picture of who you are. When we believe that we need to fit some image that we’ve created in order to be pleasing to God, we’ve missed the mark. God looks at us and sees us, truly sees who we are at the core, and calls it wonderful. He invites us to strip away the image we’ve created and allow ourselves to be recreated in his image. Freedom and joy came in as I learned to embrace the truth. I am tall, thin, sometimes uncoordinated, silly, sensitive, talkative, smart, studious, anxious, artistic, emotional etc.; the list could go on and on. God looks at all of the uniqueness in each of us, the things we describe as strengths and the things we call weaknesses and he LOVES us. Sure, he sees the areas where we need to grow but he knows that growth will happen when we embrace who he says we truly are and walk in the freedom of his love for us. That is so monumental that Paul said, “I have no greater joy than to hear that my children are walking in the truth.” (3 John 1:4). NO GREATER JOY.

Let that sink in for a minute; then let's take a walk.

Taking Pictures of Garbage

My husband and I recently met my sister and brother-in-law in Las Vegas for a few days. We decided not to rent a car so we used Uber for the first time. Our trip over to the Fremont District was fantastic. The driver was friendly and engaging, so we had good conversation on the way. A few hours later we used Uber again to return to our hotel and got a different driver. He was also friendly. But as he drove he started telling us about all the negative things about living in or even visiting Las Vegas. He would tell about a hotel he helped build, or about the monorail, or about the taxi vs. Uber battle, or about how he wanted to move back to California. Each story was punctuated with “they just don’t care about you” or “they wouldn’t want me telling you all of this, but...” When he finished one story we were all quiet and then he broke the silence by saying, “sorry if it seems like I’m negative…but I’m not, I’m just a realist.”

So let me be honest here, I had been riding along thinking, “this guy is such a fun-sucker…he’s so pessimistic and negative,” but as he said, “I’m just a realist,” I shifted my thinking - in the same way a sharp elbow to your gut would. For so many years I argued that I was a realist every time my husband would tell me I was being a pessimist. I would map out some projection for how a health challenge or finances or whatever scenario was going to go in a catastrophic direction and when he called me out on the negativity I said, “I’m not negative; I’m just a realist.”  I knew my realism was extremely negative, but I felt justified in that. I could list off a dozen examples of times when things had gone exactly as negatively as I expected.

Here’s the tricky thing about reality, our reality is influenced by what we decide to include in the image we create. One of my favorite beaches uses tractors to scrape the seaweed off the beach and then rake the beaches so they’re perfectly smooth and pristine looking. I love it—it’s why this beach is one of the favorite destinations in the area—but it’s not realistic. If I travel 5 miles south where this doesn’t happen, I will see piles of seaweed, some litter, more sand flies. But if I zoom in on a pile of stinky seaweed crawling with flies and ignore the beautiful surf, the warmth of the sunshine on my skin and the smell of the salty, sea air it, too, isn't realistic because it’s not the whole picture.

Life is not meant to be a series of photographs that we edit to suit our purposes. If every snapshot of our lives is airbrushed and cleaned up, then that means we’ve spent a ton of time and energy to rake away and bury all of the debris that we don’t want others to see. This is not realistic. At the same time, if every picture of our lives focuses on the garbage and the flies—which truly did exist as part of the reality—we’ve also taken a lot of effort to block the beautiful things from entering our awareness. This is also not realistic.

Embracing a life filled with both beautiful and ugly moments; neither denying nor elevating one over the other, is a worthy goal. One that allows me to take all that life offers, lean hard into the strength that God provides, and be filled with the joy that carries me through the journey. 

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.

Silence, Solitude and Invitations

This past Saturday, I was challenged to spend 3 hours in silence and solitude, just listening. The challenge came at a prayer retreat led by Alan Fadling, the author of one of my favorite books, An Unhurried Life: Following Jesus' Rhythms of Work and Rest. Before our time of solitude we asked ourselves, "What do I bring to this day? What stressors, what questions, what concerns, what anticipation?"  Then we asked God if there was anything he had for us. So I headed into my time away with the awareness of where I was at emotionally and with the insight that God was inviting me to soak in his peace.

Now for some honesty, I was super excited to attend this retreat when I signed up. I attended a 2 day retreat co-led by Alan last year and thought it was amazing. Plus I love Jesus so a whole day just to focus on prayer sounded awesome. But back to my confession...that morning I didn't feel like going. I was tired. The day before was an awesome, busy day and I need recovery time after busier days. The idea of staying home in a quiet house was so appealing. However, I had encouraged friends to go with me so not showing up to a day that was going to be laid back and refreshing because I was tired didn't seem like a good plan. So I went and I'm glad I did. 

One distinction shared with us today is that prayer is not a task you complete; it's a relationship you invest in. During my 3 hours I was telling God that I didn't know why I fight spending intimate time with him. I love time with him, I love the peace he gives me, I love the way he quiets my mind and settles my soul. I love feeling his love and expressing love back to him. I love that he knows me so well and doesn't need me to fill him in on back story or why I'm reacting a certain way. And yet I will avoid designated time carved out just to listen to him. Now, don't get me wrong. I'm not saying I will neglect God; I spend my days talking to him--asking for insight, direction and wisdom, sharing my heart, requesting help for friends in need and I read my Bible most days. But when it comes to sitting in silence and solitude, I let that time get squeezed out by things nowhere near as important. 

As I shared all of this with God he gave me the coolest example. He reminded me that my husband and I have made it a priority to not let our marriage devolve into simply being roommates. We don't want to get so good at co-existing in the same house, doing the necessary things to keep the household running but neglecting focused time with each other geared to build intimacy. Rick and I make a point of spending time together alone. No TV, no computers, just talking, listening, playing, being open with who we are and where we are at in all areas of our lives. We do this most days. Sometimes it's several hours; sometimes it's much shorter. But we know that without this we will miss out on connection that we both love and feel refueled by. 

This is a great practice for any marriage, but even bigger than that--God invites us into the same thing with him. As I sat by the lake I felt God assure me of two things. The first is that no matter what, his love for me is constant; I can't make him love me less. The second is that he's not going anywhere; he will never abandon or give up on me. But an invitation came with that assurance, and it's an invitation for all of us. It's an invitation to make a practice of spending focused time alone with him so that I'm not simply co-existing in the same place with him. God invites us into a deeply intimate relationship. One where he is able to speak words of love and healing to us and we are able to lean in and know him at a deeper level. He longs for this level of connection with us that can't happen in quick exchanges tossed out as we go about our busy lives. He knows this will refuel us and give us peace. 

God doesn't want to be the friend I bump into at church; he doesn't want to be the neighbor I chat with over the fence. Instead he invites me (and you) over and over to come away, to fall into his arms, to be part of a great love story.