Friday, September 26, 2014

The difference between knowing Jesus and NO Jesus....

I was reading a post this morning that my friend wrote about her day.  Feeling like she's failing everything.  Don't all of us feel like this sometimes?  We as people, as mothers, as wives and husbands, as daughters and sons put these crazy expectations on ourselves.  We need to get to the point when we accept ourselves for who we are. And who is are is good people, good mothers/fathers, good spouses.  But comparison is evil.  It's so easy to do.  Walking down the street.  "I wish I looked like her.  She's so put together. I bet her kids left the house with ALL their teeth brushed. She probably eats all organic food and I bet her kid doesn't sing for an entire hour after bedtime off key like a deranged superhero running out of batteries." That must mean that you failed, right?  No, it's just a lie we tell ourselves.  No idea why.  Because all of us are just trying our best.  Yes, that's my son in the Batman shirt with the Superman cape and a sweatshirt. Yes, I'm aware it's not cold yet.  Have you tried reasoning with a 4 year old?  This is why I started the rule.. Don't argue with 4 year olds about things that don't matter. Yes, my daughter runs like Unicorn on her soccer team. (Yes, I'm aware unicorns are mythical but you come to her game and tell me she DOESN'T run like a unicorn.)  Does that mean we always say the right things or do the right things? Not even close.  I mess up all the time.  Then I apologize and try my best to make up for whatever happened.  My kitchen looks like a bomb exploded or we might have been robbed.  But it's okay.  I'll fix it.  Later.  I promise.

It's really easy to remember all the good stuff but forget all the bad it took to get you there.  In 15 years of being with Jeremy it's so easy for me to remember all the good things that have happened.  But further back in the recesses of my mind I barely remember the struggle.  Like the time I cried on a complete stranger in an elevator because I found out I would have a really hard time with infertility.  Right then it seems like nothing would be okay.  But eventually I let go.  Then I got two little miracles. I don't ever take them for granted.  But sometimes when Mason yells "No Jesus (as soon as the doors of church open) I feel like I failed.  Of course, one of my best friends insists he is actually yelling, "KNOW JESUS." So I nervously chuckle when he says is (I sometimes pretend he's not with me.) Just kidding.  The kid has my eyes.  He might have my fashion sense. So I'm scared. Obviously...

What you don't know is what's behind the outside view that you can see each of us is struggling.  We're all trudging through the day. Sometimes it's easier than others. No one is perfect. Why do we make it so hard on ourselves?  It's this impossible race we are running.  So lately I've tried to slow things down. Focus on one day at a time and really embrace each second. I've also tried really hard not to compare myself to the "old" me. The one with 6 pack abs that ran 6 miles at 5am without any inkling of what would happen later.  I decided to ramp up my workout schedule but not make it harder.  I'm actually making it easier.  Doesn't make sense you say? No, revolution usually doesn't.  I wasn't happy at my gym.  So I quit.  Yes, me. I quit something.  I switched gyms.  I was totally shocked working out at the new gym.  People actually talk to me.  It's all kinds of awesome.  So I'm changing everything.

Everyone is encouraging at the new gym. I feel like I can finally let go of the old me.  Of the one that pushed until collapse.  Because I wasn't helping myself or my family (who incidently do not care how many stairs I climbed or how hard I worked out. ) I found this out the hard way when I had to get reprogrammed two weeks ago..  My heart decided to beat both sides at once (because it's kind of a jerkface) and the new pacemaker wasn't outpacing it.   So there I was, shelved again.  Bawling. Devestated.  Worried all of what I've worked on was gone.  So I said the H word. I asked for HELP.  My beautiful friend Elma stepped in.  My husband came home from a work trip out of town. We set about reprogramming Usain Volt we promised never to overwork him again. ( A promise I can tell you now I'll probably break.)  We were able to get it done but things aren't perfect.  Show me a human being that doesn't have flaws.  So I'm a robot with some glitches.  I'm doing my best.  And yes, that is good enough. Say it with me..... "I am good enough, I am smart enough, and gosh darnit people like me."

We all have a finite number of minutes in the day.  Some days I get things done and I feel on top of it.  Dinner is cooked and children are dressed, and bedtime is almost running on time. It feels like Heaven! Other days it feels like I'm running nonstop and forget I put my daughter GIANT BOW on my head and proceeed to run errands all day (and somebody's breakfast ends up being cereal in a cup (on the way to school) and I may or may no have remembered to wash my face and then I catch a glimpse in the mirror.  And I think, "Whoa, I really need to get it together." I sometimes yell I'm having a terrible, awful, no good, very bad day and I sometimes threaten to move to Australia. Then I remember this picture I have of my mom when she was about my age.  Her hair was messy and she didn't have on makeup.  Of course now my mom always looks put together, with her hair and makeup fixed. Then I realize, this is just a stage.  It's my yoga pants/ponytail/I'm carrying a cup of coffee with multiple children's bags hanging off me/Don't judge me I haven't lost ANY of my kids stage. Whew. I know I can write a run on sentence like nobody's business.  Like all other stages I'll outgrow this one. Maybe. No promises. It's like Picasso's Blue Period, right? Almost...

But if you ask me would I want the Thursday night Varsity dance nights back in exchange for my current life?  Hell no.  Not for all the high heels in the world. Because nothing is better than my kids realizing I'm working so hard for them. So their homework gets done and they have food, no its not always a great meal.  Sometimes it's okay to take shortcuts.  We're all trying our best here.  No awards for bravery.  Just a kid who yells, "Mom, come wipe my butt." Nothing makes me laugh more than that.  Because moms all over the world are fighting the struggle.  Nothing brings me more happiness than seeing happy, fulfilled kids.  No, I don't get it right all of time.  Sometimes I'm scrambling all day. Sometimes I don't say the right things to my friends, to my husband, to my kids.  But I'm trying my best.  Trying not to compare myself between people and to the old me.

I was trying to make my kids realize how much I prayed for them when I was pregnant.  So all week I've been listening to, "This Woman's World by Maxwell (Mason's song) and "Come to Jesus" by Mindy Smith (Ava's Song.) These are the songs I listened to when I was worried about my babies.  So this week I am listening to them and I'm trying to remember.  This too shall pass. And to everyone struggling right now. Trying their best.... Remember.



Saturday, August 2, 2014

Jenny- it's my birthday and today I painted my nails..

On our way to Dinner..

Today is my 37th birthday. The end of my 36th year (and the year I've been terrified of going through.) Mostly because my brother died at 36 and it was a creepy thought that I was the same age as when he died. So today ends that period of my life. I finally got to paint my nails. You see, I haven't had them painted for a over a year because you need nail polish free nails in the hospital so weird people who wear lab coats can check your oxygen levels. :) So in my first act of my newfound freedom I painted my nails. It may seem little but to me this is the start of a new year and a new life. I have a story that I need to tell.  But it isn't about me. It's about people you walk past everyday and their stories you don't know that aren't written on their face or in scars you can see.

Mayo's Beautiful Stained Glass

On July 17th the day started waiting in CV holding at Mayo, where everyone waits to get prepped for heart surgery. A happy, jovial guy about 42 years old (and looks like Tim McGraw) sat down a few seats from me. We struck up a conversation. He asked what I was having surgery on. He saw I had a wheelchair so he knew I was also a patient.  So naturally I asked him why he was there (thinking maybe it was for a family member.) Sadly, I was wrong. I don't want to give away his real name so we'll call him Brian Smiles. Ever met someone so full of life that they glowed? That's him. Sitting in a chair with a baseball cap on and a smile on his face. I noticed after a while that he paused when he spoke (in a way that people do when they can't breathe.) I didn't notice it at first glance and I maybe wouldn't have noticed at all if I was distracted with my phone or a magazine.

Brian told me his story about how he got misdiagnosed and had a lung removed because they thought he had lung cancer. His doctor concluded (after the lab tests came back) that he did not have cancer. He had pulmonary fibrosis. Every 3 months Brian travels to Mayo to get an artery stretched out so he can fight to breathe. Brian needs a heart and double lung transplant. Which Brian thinks is selfish to get because he'd take organs that 3 people could have. (I get up from my chair and move closer so we aren't yelling across the room at each other.) This wasn't the conversation I expected today and he needed to talk to someone.  I struggled to breathe getting up because I didn't have a pacemaker in yet. He said that I was worse than him so he couldn't complain. I told him I'd be fixed that day so go on and say anything you need to say (even in the midst of his suffering he was worried about me.) I was so struck with his composure. His willingness to share his story without fear or complaint. Just so matter of fact. Like you'd say your height or eye color. It was just part of his story, not all of him.

Brian is married and has 3 children. ( I silently wonder if his family truly knows how much he is suffering.) His positive attitude was infectious. Joking about the things that happen with his condition, trudging along anyway working nonstop as a physical therapist. His lung bleeds constantly.  Not much more can be done until that day when Brian gets listed on the multi organ transplant list. He asks me what do you say when people ask, "If you are doing better because he's not being negative but he's not going to get better." I tell him that he's not being negative, he's being realistic and his family and friends can carry him along if he just tells them the truth.

A few hours later after I'm absorbed in this conversation of Brian's truth the doctors come and get us. With the shower curtain particians I don't realize at first Brian is being prepped next to me. I try to give him privacy and don't announce I am next to him. I'm waiting and praying for Brian, that he has a good recovery. His doctors are talking to him about complications.  Then the curtain moves on the right side of me. Miss Lucy is telling her surgeons that it's okay if she dies, she has her burial plot all paid for. I shudder at the thought that this lady is so profoundly acceptant of her possibly death from heart surgery until she explains. "You see doctor, my son died when he was 9, he got hit by a car. I'm supposed to be here with my husband, but he died of cancer and I'm 78 and I'm ready to go to Heaven. The doctor pauses, shocked by what his patient is saying. He musters up the only words he has for her, " I'm going to do everything I can for you."  She reassures him again it's okay if he can't do it she's ready to be in Heaven.

The Cross I prayed to at Mayo while waiting for surgery

Me and the wound vac that was used to help me after they found the staph infection
Feeling blessed and humbled that I'm walking again from my new device
There I am sandwiched between these two people and humbled by their stories. So you see it was impossible to be upset about my situation. I was crying behind the curtain praying for them and feeling so selfish that I get a free ride. I get a "get out of jail free card" because I would be fixed with a new pacemaker.  Later on the next day I was bouncing around the halls. Nurses laughing with me because I hadn't walked the halls at Mayo before. I was damn near sprinting now with my new device. (Jeremy aggravated at my refusal to sit down.) My nurse told me I was previously a "slug" patient not moving and now I had turned into a butterfly. Then I stopped in my tracks. Because I saw Brian. He was being wheeled to X-Ray and he was pale and sickly. I felt such tremendous guilt. Brian said, "Wow, you are already breathing perfectly. Just like that, huh?"  I nodded and told him I was praying for him.

At Mayo it's like an alternate universe where people of all nationalities and ages converge.  Beautiful buildings and artwork so it doesn't feel so much like a hospital.  All people/patients that are exceptional. People that have things you've never heard all coming together to see the best of the best doctors in the world. It's strange because Mayo does most tests outpatient. So you sleep in a hotel. I lived in the hotel for a month. Food was delivered. Housekeepers brought extra pillows. Injectable medications were delivered to my room. It's like the most supportive environment ever imagined.  On my lowest day my friend Ashley came by with lunch and we talked for hours.  That talk meant the world to me and made me normal in a hard situation.  Isn't that what we are supposed to do? Uplift others and hear their stories?  Even on my worst day there outside concerts were going on in Peace Plaza every night. So I'd crack the window and listen to the world outside that room and think of all the people there at Mayo for the same reason as me, hoping for a cure.
People ask me all the time how to get through tough situations. My words are simple.

Remember the outside world, no matter what situation you have going on in your own life.  Put your phone down and have a conversation that doesn't involve a text message.  Try your best not to take any moment for granted OR the ability to Walk, Speak, Think, See, Breathe, and Hear the World around You.

After I got my miracle new pacemaker

Thank you Mayo Clinic for reminding me that we are not cases but people, we each have a story and a voice that needs to be heard, a silent prayer we can say for our fellow man, and a helping hand we can extend to those around us.  May God help us all to see the people that can helped by a kind word, or to recognize when we can connect to another living, breathing soul in our midst.


Sunday, June 15, 2014

Jenny-Delta.. Fixing Broken Hearts over the world!

So our 11th wedding anniversary is  coming up. I decided we should take an anniversary trip....To Maui? Hawaii? Greece?  No, To a hospital silly...Um, yeah I kinda suck at vacations, and planning, and being places I promised to go...Not because I'm inconsiderate but because my heart is kind of jerkface.

I've been randomly hugging the floor. Not because I enjoy looking crazy in public but because I'm going unconscious. A lot. It's happening at a crazy frequency. I sometimes know I'm going to faint.  So I have about 30 seconds to get on the floor.  Which is great because if you take me out the house you have about a 50% chance I'm going to faint on you. C'mon you kinda want to see that right?

There in Rochester, Minnesota in the middle of nowhere lies a magical fairy land.  It's called the Mayo Clinic and I have the golden ticket.  I'm going. Although its not a magical land as much as a place for the weirdest of the weird.  For the hardest cases. I'm going to be evaluated. To see if they can figure out the pieces we have left and advise us how to proceed.

So Monique and I have been talking a lot about being honest... This is the downside to wanting to be inspiring. Sometimes I'm not doing awesome and I really don't like admitting it. It feel like failure. Even though I can't do anything about it.

My kids are unwilling participants in my journey.  I wish their lives could continue on as normal without any changes. But that's just not realistic.  We've done our best to continue on but it's been tough. Really tough.

But the past 2 months have been hard. Very Hard.  I collapsed at home in front of the kids 2 months ago. I was carried out my room by paramedics and an crew of fire fighters. I was unconscious and didn't even know the fire truck was at my house.  My kids had a mixed reaction. They were kinda excited that firefighters were there but kinda terrified too. It's something I would wish on my worst enemy.

Waiting is so hard. I've spent the past year with life flying by me at record speed. Until my surgeon decided I needed to go to Mayo. Time seems to stand still as we waited to start our trip to Mayo. Wednesday was the day I've been waiting for to leave for the Mayo Clinic. It was a long day. Getting through security and waiting to fly. We had a slight mechanical problem on on our first flight. The whole waiting area let out an audible groan. Out flight was delayed and most of us would miss our connecting flights. The passengers were tired, grumpy, and annoyed. Jeremy and I couldn't believe how some people treated the Delta staff. Yes, our plane was late, but they were trying to keep us safe and that's what matters most.

This year has been a year of triumphant success and failure. The children have grown so much, we bought a new house, Jeremy has traveled the world. I have been stuck at home. Unable to move very much. I haven't shared this with many people but I've been in the hospital every month for the entire year. I've been having problems with Bob Marley, my pacemaker. As I was sitting on the plane I was thinking that I just had to make it a little longer until we could land. I've been fainting constantly. I was joking to Jeremy that it was like traveling with the Weekend at Bernie's guy! He just needed to keep me conscious to get on the flight! So we took a wheelchair and prayed I'd make it.

Then Lindsey and Q, our flight attendants came bouncing over serving refreshments. We were chatting and they told us we probably wouldn't make our connecting. I mentioned we were going to Mayo to get my heart fixed. Suddenly, Lindsey and Q said they would be right back. Little did we know they went to speak with our pilot. Told them they had a girl with a broken heart on the plane. I can't even begin to share our shock at what happened next.

Our pilot called the pilot of the connecting flight and asked him to wait for me. I started crying. After this terribly long year these fabulous women took it upon themselves to make sure I made it here. At the end of the flight The pilot asked everyone to stay seated do we could get off first. I'm sure a lot if people were wondering who we were as I tried to exit the plane. But my pacemaker isn't handling me moving quickly. So I sounded like a suffocated wounded animal trying to make me way to the jetway and crashed into Lindsey at the front. Sorry Lindsey! I had tears in my eyes because I was so moved that ya'll did so much for us. I'll never forget you.

They had a wheelchair waiting and rushed us to the next flight. Walking onto the next plane felt triumphant. We made it. Through some miracle and loving assistance from Lindsey and Q we finally made it to Mayo. Thank you for caring about the broken heart girl and her hubby. I can't thank you both enough.  We know you have a choice when you fly. Fly Delta, they are good people. If you run into Lindsey and Q give them a hug for me.

Our first day at Mayo they figured out the problem and told me I need surgery to get a new pacemaker. So we're doing tests right now and figuring out the best model pacemaker for me. I have a pacemaker now for older people. I need the "sporty spice" young people pacemaker. Turns out I move too quickly for this pacemaker and it's not helping me breathe. So I'm getting a new pacemaker with different sensors so it can sense me moving and help me breathe. I've never been so grateful for the ability to walk. I can see the end in sight. I'm almost to the finish line to get my new device.

Delta, thank you for starting to fix my broken heart. You cared enough to move mountains to get us here. Thank you so much!!!


Tuesday, May 20, 2014

Jenny-The 1%...and April Showers Bringing May Flowers

When someone makes a decision I don't understand I try to remember that I don't know the full story.  I can't judge them on their decision because I'm not them and not in their situation. All I have control of is how I react to situations.  This is something that was really hard (and continues) to be hard for me and my family.  Especially when others we love choose bad decisions.

Heart disease has ravaged my family.  It shook us to the core.  It altered the way we respond to situations, what we say to each other, how we plan for the future.  But with April Showers Come May Flowers.  I had to take this energy, these experiences, and grew something new with them. The ABILITY TO ADAPT in hard situations is what defines us as people.

If we all got exactly what we wanted 100% of the time what would we strive for? What would drive us?? So I don't believe it's God's responsibility to answer all of our prayers.  Sometimes we learn more from our failures than our successes. But how you respond to the bad times is what shows your ability to adapt.

April is a rough month for our family. The third anniversary of my brother, Adam's death at 36 of heart disease.  But April was also the month my parents got married 43 years ago.  April is when I met my heart twin April, and had all my surgeries with her. So the month of April is good and bad. I still shudder when the phone at the house rings late.  Everyone close to us knows I hate that ringing phone late at night.  Wondering if the worst has happened.  But it's been 3 years.  I still replay "that night" in my head.  The one when I got the call.  When the cops were at my door at 3:30am.  Finding out my brother's car had crashed on a remote highway and all the airbags deployed. Adam didn't pay for OnStar service but when an accident happens they deployed 911 anyway.  I had to call my parents and tell them over the phone that Adam had died.  Worst phone call I've ever made. But after all these years I now know death isn't the worst thing that can happen to a person.

So many things can kill a person's spirit. So many worse things than death.  Which is what inspired me to make the most of what life had to offer.  Regardless of what is going on.  It's why I hug all my family and friends more than anyone could want to be hugged.  Because nothing is promised. Everyone thought I was so brave to go through all the surgeries.  I wasn't scared to have them.  Not any of them.  I was terrified NOT to have them.  The day when the docs tell me they can't fix my heart anymore is going to be hardest day for me.

Not everyone understands my NEED to help heart patients.  I do it because I have a weird subset of knowledge and I feel like it's my duty to help others on their journey.  After a lot of reflection it might also be because I couldn't save Adam.  The shocking statistic is 99% of all widowmaker heart attacks are fatal. 99% chance you will die.

One day before I got my pacemaker I met my friend Lisa who came to see me at the hospital.  She extended a beautifully warm welcome to a perfect stranger.  Standing in front of me was a person who survived a widowmaker heart attack. She was the 1%.  And she was with me, by choice, taking time out her day to help me. To buff me up for the wild ride all us heart patients are on.  I was so moved by meeting her and hearing her story I found it hard to compose myself.

So when I have the gift of getting to help someone on their journey it's really a blessing for ME.  Because I can help them an offer some strength to them in their time of need.  I can sometimes quiet their fears enough to talk them through intensely scary situations.  People that don't have doctors as loving as mine.  Doctors that SIT when they talk to you.  Doctors that listen to them and care how they can continue with everyday life. Fear stops a lot of people from living. It's stops people from getting the medical checkups they desperately need.  Because not everyone wants to know what is wrong.  I humbly understand that we all process things differently.  Some of us need to talk about it, some need to be quiet, all right choices.

I met with Dr. Ross Ruel a few weeks ago. Dr. Ruel was the surgeon who invented the revolutionary open heart surgery I had 18 months ago.  He made a 3 inch incision under my breast and somehow went through my ribs (on the inside) and blocked the nerve that needed to be protected so Dr. Razavi could safely ablade the outside and inside of my heart without damaging the phrenic nerve. Dr. Ruel asked me if he negatively impacted my life.  Because now I live with a pacemaker.  The question totally fazed me. Because through his innovative thinking and joint approach with my superhero doc Dr. Medhi Razavi they gave me the chance to have a life.  To run again.  To chase my kids.  To feel safe again.  Regardless of the challenges I intimately know the value of life.  The value of breathing. The value of being able to look your children in the eye.  Of thanking the man you love for saving your life and staying though all the good and bad of my life.  Of laughing with the friends who have stood by me, through every weirdo medical thing I've had all these years.

My incredible open heart scar. The tiny cross was from the chest tube to re-inflate my lung



Thank you for continuing to supply me with more people to help so I can distract myself from my suffering and focus on the needs of others. Thank you for the support of all of those around us in our "tribe." Thank you God for supplying me with people that can use the information I have learned.


I said the last part twice because sometimes people think I am unlucky.  That word doesn't descibe me at all. Few people get to experience the amount of love I've been shown.  Few people get the opportunity to be fixed by world class surgeons.

To blessed to stress about challenges that still exist.  We have to roll with life.  We have to see the positive in EVERY situation. No matter how small, how insignificant at the time.  Find something to hold onto.  If a loved one died, try to remember that they aren't hurting anymore.  They aren't suffering.

April Showers bring May flowers...


Friday, March 7, 2014

Friendships (by Monique)

I have mentioned that I don't write enough for this blog. That is true! The biggest reason I guess is defining what I'm going to write for this one, and what I'm going  to write for my personal one. I think I figured it out this week through a conversation with Jenny.

We were talking this week about living our lives, and how we have to rely on each other instead of the rest of the world. The three of us have been through some pretty horrific shit, but what we have in common is that we want to be defined by our own terms and not by the things that happened to us. We're not crazy, not stupid, not dumb or ignorant. We take responsibility for our own recoveries, and that means we are going to know our limitations better than anyone else.

This scares the general public sometimes. People really like us and want to protect us from ourselves. While the three of us are very much social butterflies, we are going to push ourselves to the limit of what we can do whether you like it or not. This doesn't mean we're going to overdo it or be unreasonable. This means that we're going to continue to challenge ourselves to be the best we can be.

And it has worked  for us. Maybe this is the part that people don't understand. Doctors told Amy she wouldn't be able to bend her knee again. If Amy didn't take charge of her own life, she wouldn't be running now. It's not that the doctors were stupid, it's just that she knows her injuries better than even they do. She didn't overdo it, she just learned her injury so well that she persisted until she overcame it. She still has problems with her arm - I'm not saying that Everything can be healed, but she has done better than anyone thought possible because she took control.
Jenny's still in the gym. I'm walking, and am continuing to regain more than anyone thought possible.
I'm not kidding, we ALL are doing more than anyone thought possible. Not because we're miracles, but because we stay focused on what's important.

But I gotta tell you, when I'm unsure about things, be it my injury or my life, I turn to these girls. They trust me completely that I know my life and am doing the best I can. They'll let me know if something I'm doing is dumb and I trust that. But they don't arbitrarily tell me I can't do things or that I'm pushing too hard. And that's what Jenny and I were talking about. We rarely need feedback from anyone, but when we do, we can trust each other to believe in ourselves instead of others who sometimes react in their own fear for us. Heck I'm actually in a crazy whirlwind of emotions right now and not sure what path to take or who I can really trust, if things are really believable, but just talking to Jenny grounds me enough to remember I can trust myself. Life isn't always straightforward with a clear path but I'd rather live it than wait around to die. My choices may not always be the safest, but they're always what's best for me. If I need to talk something out to understand it better, I do it with these girls because I know they're not going to limit me or tell me to stop. They'll help me figure it out in my head to continue making the best choices I can make for me.

So that's what this blog is going to be about for me - the people in my life that have helped me not by being controlling, but by being a good resource.