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...."

Defining Moments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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...;-)