Life's a Roller Coaster Ride

I was never a big fan of roller coasters. When I was a little girl and we all went to the Kossuth County Fair, I watched my older siblings ride those big, crazy rides and was certain I wanted to give it a try. Mom said it was a bad idea and Dad pulled the, “Oh, she’ll be fine…”

There’s a reason why they say Mom is always right.

Oh, I was so dizzy. And sick. And shouldn’t have eaten cotton candy before the big test run.

The anticipation of the chink, chink, chink while climbing higher up the coaster started the knot in my stomach… but it was the dead drop that did me in. I knew it was coming, but nothing could have prepared me for it. I never had a desire to go on a roller coaster again, until I was in high school and we had a choir trip to World’s of Fun in Kansas City. My friend Sue Ann convinced me to go on a coaster there and it changed my mind about what I had decided long ago was a death trap… because of the upside down loops.

I still hated the anticipation, the dead drops still made my stomach jump and my head spin, but the loops… one right after another… were like flying to me. It was the part of the ride right after the dead drop that woke me back up. I was hooked.

That’s about the only way I can explain to you how I’m feeling these days. The last six months have been filled completely with the steep incline of anticipation and the dead drops that followed, with no breaks in between. But this past week I’ve started experiencing a few loops here and there. After all these months, I’ve had real moments of feeling like I’m finally waking up. Colors are a little brighter, my vision a little sharper, something in me feels a little stronger. I just might be able to call myself human again! :)

Saturday I posted on Facebook that I was hoping I wasn’t going to jinx myself by saying out loud I was feeling better, and then Sunday I had a horrible day. Yep. I totally set myself up for that one. Apparently I’ve now developed an allergy to a food I’ve been eating every day for over a year, and it took all day on Sunday to get my breathing and symptoms under control. Just when I think I know what this crazy body is doing, it takes me on a dead drop.

But here’s why I’m loving this roller coaster life again: I now finally know that an upside down loop will be coming to wake me up again. Even when the pain is too high or I hit a wall of exhaustion out of nowhere, I seem to be a little stronger than I was just a week ago. And on the days when my pain is more under control and my energy is as normal as it can be for me, I’m going to savor the moments of feeling awake and flying around those loops.

Life’s a roller coaster, but at least it’s one that gives us a good rush once in awhile. :)

Because last week’s A 2 Z post was all about Stellan, who [in case you missed the updates] is doing well after his miracle surgery, I didn’t ask for suggestions for the next “H” post. So leave some H-words in the comments that you’d like me to write about next Monday, and I’ll see what kind of a tale I can weave for you! :)

Grading On A Curve

Would you trade your medical struggles for normal health if you also wouldn’t have the lessons you learned throughout it?

I know this is going to sound crazy to a lot of people. In all honesty, it sounds insane to me as I sit here physically feeling the way I do, but I can say without hesitation that I wouldn’t trade what I’ve learned for good health.

And I really, really would like to be in good health. I’d love to walk outside, sing to my heart’s content, dance, go to a friend’s house, travel home for the holidays. I’d love to not have to think through every single movement I make and I’d love to be blissfully ignorant of the word debilitating.

But more than all of that… I love feeling at peace, believing, trusting, accepting and being open to life as it is. And when it comes down to it, I don’t want to trade fulfilling who God needs me to be for my own comfort. People used to tell me they prayed for my healing so I could be whole, but the only thing that would make me less than whole is if I chose what I needed over what He needed from me.

At the beginning of the book Crazy Love, Francis Chan talked about how we should be in awe of how God used such diversity and creativity in creation. He talked about how we compare ourselves to each other… thinking that if we’re not as sinful as the person next to us, then we’re on the right path. But the truth is that God created each of us uniquely for a unique purpose, which means God isn’t grading on a curve. There won’t be someone standing next to us to point at and compare ourselves to when we tell Him about our lives.

When I read that, about not being graded on a curve, I sat and thought about how we all continuously try to be like everyone else. To be normal… to fit in… to say the right thing and look the right way, to have the right job, the right house, the right clothes. We all say we’d never go back to junior high and relive those years of trying to fit in, but in truth I don’t think we ever move completely past it. And it’s the exact opposite of what God created us for. He made us diverse for a reason. He doesn’t grade us on a curve because it would be like comparing apples and jackhammers… two unique things created for different purposes.

Of course there are moments when I long for a more normal life. I’d love to have a husband and a family, a career and a social life. I want to be a part of things… a real, tangible, active part of the outside world. But the truth is, I have no idea who I would be right now had all that happened. I have no idea what my priorities would be, where I would have lived, who the friends would be surrounding me. God set me on this path and lined it with blessings. I can’t presume my dreams would have turned out better than His plans just because they seem easier in my mind.

There is a sentence under one of Chan’s videos on his website that talks about how all of us are striving for a normal life, but have we ever stopped to think that maybe the goal in life shouldn’t be normalcy? That one sentence made my circumstances make sense to me. If I judge my life against others… or even against the life I used to have… if I’m grading myself on a curve of normalcy, then of course I look short-changed. But that’s not the goal. The goal is to live the best life I can with what I am given.

Obviously my life is intensely abnormal compared to others, and these past few months have been the hardest of my life. But I still wouldn’t trade it for the normal one I always thought I would have, because this is the one He meant for me to live. It’s a relief to know we’re not graded on a curve, but instead loved for exactly who we are designed to be.

And I wouldn’t want to be anyone else.

A Living Prayer

I’ve never really given much thought to the type of things I want people to say at my funeral. I tend to focus more on how I’m living right now and hope that how I’m remembered falls in line because of it. That changed a bit this August when Eunice Kennedy Shriver passed away.

In a statement by the family, they described her as "a living prayer, a living advocate, a living center of power. She set out to change the world and to change us, and she did that and more."

I have to tell you, that phrase has stuck with me… to be described as a living prayer. Growing up Catholic, where tradition and posture are a part of worship, my mind went to imagining the actual appearance of a living prayer. I tried to imagine what that might look like in a tangible application, but I couldn’t. I’ve decided that kind of a life can’t be seen in a look or a stature.

What I’ve decided instead is that it would be found more in the reflection of others when they are touched by you. It would be seen in the joy that others would find contagious, in the compassion that others would feel in your words and deeds. It would be found in the empathetic nature of a stranger and in the fortitude seen in those who are determined to make a difference. The kind word for no reason, the intentional way of listening, the hand outstretched to give and to receive… the voice of encouragement, the touch of comfort, the openness to share in word and deed… all of these things must be what a living prayer looks like to others.

All we can really do in life is be open to what God needs from us, to be aware and present in our circumstances so we are available to step up when called. It’s a daily choice to make this a way of life… but I have to say that now, choosing how I want to be remembered is helping me choose my daily actions.

I want to be a living prayer.

Brought to You by the Letter G

Growing.

This word takes on so many different meanings for me today, mostly because I’m thinking about little Stellan.

We’ve watched and waited to see if he would be healthy at birth, seen him go in and out of SVT [a rapid heart rate originating in the atria], get through his first ablation surgery and many hospital stays. Too many for such a little guy. But thankfully, he is growing.

The reason that’s a good thing is because his SVT is getting worse. His medications are no longer keeping it under control, so they are in Boston for another ablation procedure… trying to burn off the extra electrical pathway in his heart. The one that is dangerously close to his AV node. That’s why his growth is so important… the bigger he is, the further away the electrical pathway and AV node are from each other. They were hoping to wait until he was 4 years old, but are going ahead now – after he just celebrated his 1st birthday in the hospital.

His mom listed off a lot of possibilities on her blog. There’s a 20% chance the surgery will be successful. The other options are things like a permanent pacemaker, stroke and even death… something no parent should have to think about for their child. But even in their fear, they have found their own growth as well.

There is a growth in faith, in putting their trust in a God they love. There has been growth in their marriage, in their friendships, in their circumstances. Jennifer has had to put up with a lot of cruel criticisms directed at her and her husband, and she has grown beautifully during those challenges and shown what only perseverance and love can demonstrate.

And we all have grown with them. We’ve grown as a network of support, we have grown in our own faith and beliefs, the number of prayers being sent up for this boy grows by the day… and we have grown in the knowledge that miracles come in many forms.

They started weaning Stellan from his meds on Saturday so his body would be free of medications for surgery on Tuesday. As I’m writing this on Sunday night, Jennifer’s latest twitter update stated that Stellan has gotten bad quickly, is in ICU and intubated. There is no way he’ll hang on for a surgery Tuesday, so they will be doing the ablation soon.

I’ll do my best to check in with you here and let you know if I see any updates, or you can follow her blog here: MckMama. In the meantime, take a moment to say a prayer for their family.

I’d like to keep the number of prayers growing.

***** Update 1 ***** 11:41 *****

After a really long night and morning, Stellan was just taken for his ablation. He has had blood transfusions, been packed in ice due to fevers, his blood pressure has been dangerously low and at one point they had to bring him back with a crash cart. I can't imagine how scary this has been for them. I'll update again when she has any news on the surgery.

***** Update 2 ***** 1:25 *****

I'm going to paste a link here so you can go to Jennifer's site, she wrote a post and just did the first update from surgery... the ablation hasn't started yet because they are having some difficulty with access points. http://www.mycharmingkids.net/2009/11/shiny-gem.html

FINAL UPDATE

Are you people sitting down?!?!? You know that small, 20% chance they could do the ablation successfully? Stellan was in the 20%. He's out of surgery and SVT free!!! :) You have to read it in Jen's own words... but this, my friends, is what miracles are made of: http://www.mycharmingkids.net/2009/11/its-going-its-going.html

Flashback Friday: The Post That Has Me Singing "Sunrise, Sunset"

People, I’m getting old.

No, it’s not my birthday and I’m not saying that because I walk slower than most 93-year-old women.

[As an aside, I used to live in an apartment building that had a pool, and my roommate Kristin often had to stop me from using my cane to trip the old women passing us on the sidewalk on their way to swim. Shortly thereafter I got my belly button pierced just to prove I was still young. :)]

So, what has gotten me feeling so old? Well, since you asked…

My oldest nephew, Alex, turned 18 this week.

One-Eight. He’s an *gulp* adult.

Somehow, that kid still looks like this to me:

Oh, that little turkey was my boy. We spent hours singing “Chin Up” from Charlotte’s Web and “Blue Suede Shoes” in his best Elvis impersonation. He couldn’t get enough of the book If You Give A Mouse A Cookie and, for whatever reason, if he was ever sad about something singing the theme song to Saved By The Bell made him giggle like crazy. The most heart-wrenching moment I ever had was having to leave him and head back to college… he was hugging me around the neck and crying, “But I love YOU! I want to go to college with YOU!” I almost stowed him in my suitcase and smuggled him into the dorm. :)

Being the aunt who wanted to see all his wishes come true, I put my thinking cap on when he wanted a black rabbit for Christmas more than he wanted to breathe. Santa wasn’t going to be able to deliver said rabbit, which prompted me to start writing a children’s book called The Adventures of Tada the Black Rabbit. I had my Aunt Sherry do the illustrations and just last year actually had them put into book form for my nieces and nephews. But back then, I’d just tell him the story and he’d join in at the appropriate places.

Then it happened. They agreed to let me get him a black rabbit one Easter… oh, was he a happy boy! As it turned out, their dalmatian, Patty, wasn’t nearly as happy… so Tada the Black Rabbit had to go live on a farm where they could visit.

I’m sure Tada was as relieved as Patty. :)

It still blows my mind that little boy is a senior in high school. He used to ask me how much I loved him and I’d say, “Around the world and back, buddy.” No matter how old he gets, no matter how much his pictures change, that’s one thing that never will.

Your Riley Questions…

Let’s just start this by saying I couldn’t have bought him a more appropriate shirt for Christmas last year. He is the most perfect dog for me, but DUDE, he’s got issues. :)

How is the little mascot handling you being really sick?

Honestly, he is really affected by how I’m doing. Just lately he’s started getting a little playful with me again, but since June he has been extremely subdued, which is not his personality at all.

When I was immobile and my legs were so intensely painful, I had to train him to go around my legs or lay up by my head because he always wants to rest his chin on whatever area is hurting the most. It’s so strange how he knows, sometimes before I do, where trouble is. A few years ago I had a picc line in my arm that started hurting quite a bit. He would not leave my arm alone, whining while resting his head on it. The next time the nurse came they had to pull the line because it was infected, and he never went near that arm again.

Since June until now, I couldn’t get him to play no matter what I did. I was feeling so guilty that I couldn’t get up and he was so melancholy, but if I tossed a toy he’d just stare at me like, “You should be resting, woman.” But the moment someone else, someone healthy, walked in the door… he became a completely different animal. He’d jump and run and bring them toys… it was like he knew they were healthy and could play.

This pup never ceases to blow my mind.

My one major complaint: the more stressed out he is, the more he marks. And I’ve really been stressing him out. I wish he could have the intuition that tells him spot cleaning the carpet is quite a chore for me… but apparently he didn’t get that gene. There have been moments where I’m tempted to tear up all the carpet and live with concrete floors for convenience, but I haven’t gone quite that crazy yet. As annoying as it is, everything else about him makes up for it. :)

Can Riley tell when you’re feeling extra bad?

The above comments pretty much answered this question, too, but I’ll give you an example of his extreme empathy since it’s so fresh in my mind.

The past two mornings I woke up with migraines. Often I’ll wake up with a bad headache that will turn into a migraine, but Monday and Tuesday my vision was already blurry when I opened my eyes. Needless to say, we spent most of our time laying on the couch, medicated, in the dark. As often happens if I have a migraine that lasts more than a day or so, Riley started getting nervous.

By yesterday afternoon, he started getting sick to his stomach and threw up three times before we finally went to bed. Usually he is sound asleep all night unless I move and he adjusts his position … because he must be touching me at all times. But last night, he was antsy all night, periodically getting up and standing by my head, smelling by my mouth or ears. He almost had me paranoid, wondering if something bigger was wrong with me!

This morning, however, when I got up with my normal headache and the migraines gone… he’s back to normal. No sign he was antsy or sick like last night, and instead has been playful and a bit ornery.

I guess he’s making up for lost time.

So, yes… he can definitely tell when I’m feeling worse, and does his best to take good care of me. My friend Susie says all we need to do now is teach him to dial 911 and he’d be perfect. :)

When Riley is glued to you and you tell him to move, does he do it or does he do what mine do – pretend they don’t hear so they don’t have to move?

Does this look like a dog that would move for no reason?!?

He’s actually really good about where he walks and I never have to worry about tripping over him, but let’s be clear:

This is Riley’s house. He just lets me live here.

Brought to You by the Letter F

How fitting that on the Monday after Halloween the majority of you chose Fear as the F word you’d most like to hear about.

Wow, writing the F word seemed so inappropriate. :)

Anyway…  there were so many directions I could have gone with fear. Like the fact that if a mouse showed up in my condo there would be a huge problem… because I wouldn’t be staying here and I can’t actually leave. I’m telling you, I could be in the worst sort of medical condition and I wouldn’t call my friends in the middle of the night, but I can guarantee you I would be waking them up and insisting on companionship if a mouse was involved.

Growing up in the country, I had plenty of opportunities to have mouse confrontations. My dad always tried to tell me that mice were more afraid of me than I was of them… but he could never explain to me why, if that was true, they tend to RUN RIGHT AT A PERSON.

Yeah. Logic kind of trumped him on that one.

If we’re talking about fear I could also tell you that the last horror movie I watched was Children of the Corn at my birthday slumber party in 7th grade. We all started out spread out on the floor, and by the time the movie was over, my friends and I were all crowded on the couch with my sister Laura, who was just as scared but [bless her heart] trying to be comforting.

It was especially chilling because one of the characters kept saying, “Malachi…” in a really creepy, ominous voice. I swear to God, in our religion class junior year Sr. Janet started talking about Malachi from the Bible and my friend Katie and I both looked at each other like someone might attack us out of the cornfield that night. Yes. Four years after we watched the movie.

We also might have gotten in trouble that day for talking all through religion class because we were so freaked out, but explaining it to Sr. Janet really did no good considering we talked through class almost every day anyway.

Yep. I could ramble on about lots of different fears, but I don’t think those are the kinds of things you actually meant for me to talk about. So I’m reposting something I wrote back in December on the topic, because I don’t think I can say it any better now than I did then. Back then I chose to not be afraid of what would happen in the coming year. And now that everything has happened, I’m not going to be afraid of next year either. There’s just too much life to be lived between now and then to waste it.

 

Off The Table
[December 11, 2008]

This seems to be the time of year when there's a lot of reflection on the past 12 months... the ups and downs, the changes, the celebrations and the sadness. It seems hard for me to believe that three seasons have come and gone and winter is upon us again. It felt like a "blink and you'll miss it" kind of year for me.

Awhile back I was reading Alece's blog Grit and Glory, and she posed this question: What’s the most significant thing God did in you this year?

My first thought was, why doesn't anyone ever ask easy questions?!?! But this was my second thought:

He took fear off the table. I’m not even sure how it happened… but I think the extreme uncertainty of my life finally made it very clear. Fear isn’t an option. It’s like He drew a line and said fear or ME. And I didn’t choose fear. And it was one of those fundamental changes where I know it’s just not an option. Everything can be taken away, and I trust Him. Period.

I don't think I stopped to realize it until that exact question was posed, but it's the absolute truth. And I think it was something that was graced for me because it wasn't a specific thing I was consciously trying to do, although it definitely fits with the intention of how I'm trying to live. Something shifted in me and I know that I unequivocally trust Him.

That doesn't mean life is suddenly carefree and easy... it means that in the midst of hard stuff, I'm not scared. If I look back on the past year there is no doubt I'm doing worse now than last year. But I'm not afraid of what next year will bring. He took that option off the table. And I intend to work as hard as I need to in order to keep it that way.

I've found, though, that it's much easier to not choose fear when it comes to my life, but when it comes to those I love I have to work on it more. I want to fix things for them, I want to take away their hard times, their illnesses, their uncertainties. I have to watch my words when I pray for them so it doesn't come from fear, but rather faith.

I was recently having a conversation with my sister when we both agreed that He is the same God today as He was yesterday, we just wonder what in the world He's thinking sometimes.

But that's the point: faith is believing without seeing. I can't see it... I can't know what happens tomorrow. But I know He's got it under control. And that fear is off the table.

Ok, peeps… let’s see what you can come up with for a “G” topic…