Friday, July 18, 2014

Late night reflecting in room 560

I am prefacing this by telling you this is probably the most open I have ever been and will ever be about what I am dealing with in this sickness. I am, by nature, too proud to complain, too stubborn to say out loud or acknowledge how much worse things have gotten in the past 6 months. But Adam has begged me, after his post, to just open up and explain from my perspective what I am dealing with. And initially I didn't want to.  I don't want pity, I don't want anyone to look at me that way. But then I thought of all the young deaths in the Mito community, many of them too little to even share their journey....and I reconsidered. It's often a very lonely road for families like ours, living in a world that only seems to see your outsides. So, because I love him, and because I know how important it is for advocacy, and for comfort: for someone else to read this and say "THIS..... this is how I feel." I guess its time to let you all in for my story, the way I have let you in for the kids.

If you hear stories of those diagnosed with cancer, patients often talk about the moment they got 'that call'. Or the moment the doctor walked in and said those dreaded words. I truly can't imagine the pain and the agony of those on the receiving end of that call. The fear and the hope and then it all comes crashing down in one instant, because you have cancer. But wait, the doctor says - there is a chance. There is treatment and we can fight it. All your energy and effort and anger can be shifted towards the fight.

Mitochondrial Disease doesn't fight like that.

No one came into a little drab room, avoided my stare and stoically said, "You have Mitochondrial Disease. I'm so sorry." We didn't get a plan... well, we did, I suppose. See, the plan is "don't do stuff that makes you worse" - like living a life. The big treatment? Its a vitamin cocktail that may or may not give you a little bit of your quality of life back. At best, it will slow down the progression of your disease so you can, you know, spend more quality time experiencing your body's failure. There is no cure...And its not for lack of trying: we have some of the most dedicated and knowledgeable physicians in Mitochondrial Medicine today. 

We spend years and thousands upon thousands of dollars being told it's all in our heads. It was stress. It was allergies. I don't know what it is, but certainly they will outgrow it. Its Celiac, Cystic Fibrosis, Lupus, MS. It's nothing at all. Its neuro-degnerative. It's seizures. It's not actually seizures. And by the way, you're too young and pretty to be sick. My personal favorite... Mostly because it really is a shame that my cells can't be powered by youth and good looks.

It's a constellation of symptoms that involves nearly every facet of the human body. You have cardiac symptoms, so they send you to a cardiologist, who deems that nothing is wrong with your heart and insists that it must be neurological. So they defer to Neurology who says that there's nothing wrong in your brain that explains your cardiac symptoms. And also, here are some depression meds for the depression you don't have.You are booted out the door to suffer another 6 months.You'll be accused of doctor shopping, medical abuse, and doing it 'for attention' because come onnnnn, who really just has a TIA at 27 years old?! People who like attention, that's who. (Coincidentally, so do some people with Mitochondrial Disease, as it turns out.)

So one day when you're almost to your breaking point... you find yourself stumbling like a wounded dog onto the doorstep of someone who sees you, I mean really sees you... They see your suffering and they know what your struggle is like. And this person finally says, "Actually, this looks a lot like Mitochondrial Disease." I'm sorry, but WHAT did you just say? You think you know why I look like a 20 year old and FEEL like a 90 year old?! And then there's tests and exams and biopsies and everything is very hmmm and hummmm and this is so fascinating... because there's no magic test to say yes or no definitively. And then one day, there it is, sitting innocently at the top of a cover sheet while you wait for yet another specialist visit. No one really says it out loud at first. There's no defining moment, no phone call and no apologies. And even then, its often a 'possible' or 'probable' in front of it, because genetically we aren't advanced enough to prove you even have it in many cases, which makes original specialist just roll his eyes and say its not even a 'real thing'. A clinical diagnosis, they call it. Which means an expert in the disease has enough evidence to believe you have it. In reality, a clinical diagnosis for most of us, is just seeing a basket full of all the garbage that has already stolen so much of your life, all packaged into one little thing with a name. It changes almost nothing, because 9 times out of 10 the doctors still either don't believe it, don't know what to do or have any idea how to treat you. Not that we aren't grateful for them trying - its an uphill battle. Because we know you didn't spend time on this in medical school. It's not your fault. But we must change this, eventually. Because I expect more for my kids. They need you. They need your understanding and knowledge and support. They need to not be called fakers and drug seekers and attention whores. They need a culture of understanding among their friends, family, workplace, and physicians.

Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process becomes repeated throughout the body, whole systems begin to fail and the person's life is severely compromised. According to the United Mitochondrial Disease Foundation, every THIRTY MINUTES a child is born who will develop a mitochondrial disease by age 10. So its not just my family, even though you may not have heard of it before us.

"Do the best you can - until you know better. Then when you know better, do better." - Maya Angelou

Most of us, by the time we get our clinical diagnosis, have come so far down the rabbit hole that we've stopped attempting to live a normal life by pushing through (which only makes you weaker) and accepted our fate and try not to cry when our friends are water skiing at the lake and we're just over here calling it a success if we get a laundry basket down the stairs in one try. You don't complain. Because as far as the world is concerned you don't look sick, therefore you have no excuse. How was your day? Fine, except for the part where I realized I am no longer strong enough to push a loaded grocery cart through the store, you think. But you don't say it. No, you just smile and say "Oh, not too bad...."

The only thing worse than living with a terrible disease is being treated by the world as if you don't. The one person I feel for the most, even more than the patients, are the husbands and the wives and the parents of those suffering from Mitochondrial Disease. Because they see it. Every single day, every night. They watch their 20-something-year-old bride struggle to breathe. They watch their children scream in pain with no relief. They watch their husband sit by, embarrassed, while they take on the 'man of the house' tasks. They also see the doubt and hear the condescending doctors and suffer, because they too, are missing out on the things that Mitochondrial Disease robs you of. They want their wives and husbands back. They want to see their child be a child. They want to just be mommy - not nurse and researcher and therapist.

Adam would tease me a couple years ago on some of my worst days, telling me it was just a matter of time til they realized I had it, too. Whatever 'it' was - we didn't know at the time. My best friend has held my hand through a seizure. She has seen me so pale and sick I could barely get out of bed for weeks. She is one of the handful of people who saw it coming in a roundabout way. My parents are amazing, they very much did their part to try to help get it figured out in my teenage years when things first escalated for me. But without the kids, there's no way anyone ever would have guessed... my symptoms were just not life--altering enough to keep pushing after the first couple doctors couldn't figure it out. But just so we are clear, no one let me down in my diagnostic process - its simply the nature of the beast that is living with an Invisible Disease. 

I'm tired. And not in the stayed-up-too-late-last-night kind of way. Not in the adjusting-to-being-a-new-mom kind of way.(Although that is, in all reality, going to be the closest thing people without Mito have experienced to what an average day is like. I don't have a choice but to get out of bed and push through. My kids need me. My house needs me. My laundry - I need my laundry, lol. But it feels right now like the day is creeping closer when them needing me won't be enough, because I won't be strong enough to suck it up anymore. There are already nights like that. There are too many nights already, when my kids tuck me in, instead of the other way around. Adam has to help me up the stairs,or worse, he comes home from work in the afternoon and sends me up to bed. He does their whole bedtime routine and brushes little teeth and puts on pajamas and gives all the medicines. They gather around my bed, and kiss me and tell me to get better. Lately, a couple times a week, this is our new normal. At first, we made excuses. I was worn out from our trip. Maybe I caught something on the plane. I needed to eat better, eat more, whatever. But days have stretched into weeks and though I am still having occasional 'normal' days (using that loosely, since my normal days are still hard for me) there are far more days that have forced me to realize that things are for the first time, stuck in a downhill slide.

And for the first time, I'm really, actually scared at how things are going.

I keep waiting for the day I can say I think things are getting back to baseline for me and it's just not happening. We will continue to pray and remain hopeful that God will deliver our family from these trials. Thank you for being alongside us, in the days past and those yet to come. There will be more sadness I am sure, but I know there will also be many more praises... and that's the one thing this disease can never take away: our ability to see the beauty in every situation.

Thursday, June 12, 2014

Sleep Study Time

Brooklyn and I trekked down to Cincinnati today for an overnight sleep study. She's had a major change in her sleep patterns and been restless in her sleep and tired in the daytime, so given the neurological stuff that's been going on, they wanted to cover all their bases and Dr. K recommended a sleep study - the best way to ensure a child is getting a good night's rest. Sleep is important for everyone, but critical for a person whose body is experiencing additional physical stress. So hopefully we will have good news that she's getting the best night's sleep she can be. Results typically take 2-4 weeks.

The techs commented on how mature BK is and how she is so full of smiles considering the upheaval she's had in the past year. She beamed with pride hearing that and said, "Well, I AM the BIG sister, soooo..."
I couldn't be more proud of her positive attitude and the way bad things just don't get her down.

Yesterday her MRI went well and she was able to lie still long enough for them to get good images - this is huge because in the fall, they had to use general anesthesia (twilight sedation was not advised by anesthesia due to our family history). This is the results we are probably most anxious waiting for, Dr. K suggested the changes in her MRI would be a good predictor of how quickly things are changing, or hopefully confirm that this is not going to be progressive in nature. We will wrap up the week with 6-7 hours of academic neuropsych testing. This will tell us tons of information about the way she's processing information, her current IQ, which will establish a baseline if she continues to lose skills. If there is one area of the brain where skill is much worse, we can then take that information and look at that area in further detail. It will also be a huge asset in helping us develop a plan of attack for next school year, and help determine what might need to be set forth in her IEP, so we can relieve some of the stress she endured this year with tests being timed, etc. She's still a very smart little girl, so it's difficult to see her struggle. I can only imagine how she feels not being able to do things she knows she could do in the fall. I tell her to try not to worry about how long it takes her, just to focus on quality of her work and give her best effort. I'm very proud of how she handled herself throughout the school year, leaving public school and working from home around her symptoms, headaches, challenges, and appointments. She definitely belongs in our family of troopers!

I so look forward to the drive home with her tomorrow. It's special time that she and I get to be alone and chat excitedly about all kinds of things - yesterday we talked about which cloud heaven was on (her choice of topic) and argued over what flavor of ice cream is the best (mine) and wondered aloud what everyone was doing at home and how they could possibly survive without us for a night. :)

Tuesday, June 10, 2014

We're back!

The new site I tried to use for blogging was simply not as user-friendly (aka mom-who-already-doesn't-have-enough-hours-in-a-day-couldn't-easily-just-type-up-a-blog-post) as I had hoped, so, we are moving the blog back here to Blogspot. It's hard to believe I had hardly written more than a couple of blogs this year - but honestly, we went through a phase until fall where there wasn't much change. I'm going to import the blogs that were written on the other site, for preservation of our history here. And expect to see more of me, as Adam and I feel that we are at an important crossroads in this journey, and there are things that have yet to be shared. We have been waiting and praying for the timing to feel right to share the details with you guys.

Things are not easy right now. I'm too exhausted to even consider seeing our entire current summary of issues on paper tonight, but suffice to say we really need your prayers - for healing, for lifting of a few burdens weighing on us, and strength for the days ahead. And most of all, for courage - that we may not become angry or resentful that we appear to have won a terrible lottery of sorts. I never want to be angry at God again. I never want to view our life as unfair. I don't want pity. We are blessed with obstacles that have brought about a lifelong change in us. We are uniquely positioned to tell our story, share our faith, and the obstacles that seem to never end are like a sharpener, fine-tuning our ability to say "God's not done here. THIS is not the end. The suffering is NOT for NOTHING."

It was hard when Addison got sick.
Then I learned the real meaning of hard throughout the first year of Audrina's little life.
And now she's two and a half, and our battle has grown yet again, and twisted in ways we could not have imagined nor prepared for. I'm now having to learn how to push through and continue to advocate for them, while respecting my own disease process enough to know when to hang up my hat temporarily and let Adam take over while I rest. Admittedly, I'm not good at it. I hate laying in bed watching him do everything, but when your body says 'enough's enough' - you realize quickly your only option is to listen to it. I've hit a wall where I can no longer just ignore my own limits and push through the pain and debilitating fatigue. Doing that has only led to my health deteriorating even faster. It's so difficult because one day I am feeling pretty good and the next I can be all but bed-ridden. And our sweet, beautiful Brooklyn, is facing a courageous battle as well - with a rapid change in her health over the past 9 months - what started as what we thought were simply migraines has progressed very quickly into regression, learning challenges, physical ailments and abnormal brain activity. She had an MRI today, and we will be diligently awaiting those results, as much of our plan for her hinges upon what her brain is doing in that gorgeous, kind, amazing head of hers. She's also facing a sleep study, 3 day hospital for EEG, a very long day of IQ and educational testing, and a spinal tap.

So, if it seems like its an insane amount of things for one family to be going through, well, it is. But we will trust that it's all for a greater purpose that one day will be recognized; and until then, we will do our best here with our time here on Earth to stay cheerful, joyful and prioritize loving one another.

"Do not be *conformed* to this world, but be *transformed* by the renewal of your mind... that by testing you may discern what is the will of God, what is good and acceptable and perfect."  Romans 12:2

Sunday, May 26, 2013

We've Moved!!

Over 200,000 views on this blog. You guys are incredible. Truly, your unwavering support over the past 2.5 years has been a real blessing on difficult days. I wanted to share on with you that I have moved the blog to a new host,

I hope you will join us on the new site, its much more user-friendly and bright and sunshiney - just what we need :) I will continue to leave this page open for those who want to delve into our extensive history, but from now on, all the new posts will be on the new site.

What great timing, because we are soooo close to having answers. Keep those prayers coming. I look forward to sharing with you on the new page - so come on over!

God bless,


Friday, May 10, 2013

An open letter to Abercrombie CEO Mike Jeffries

Mr. Jeffries,

I have no doubt you've received many letters from the 'haters' who weren't cool enough, thin enough, or popular enough to wear Abercrombie and Fitch.

I wasn't one of them.

I started wearing Abercrombie when I could only fit into Abercrombie Kids - a scraggly 12 year girl with no shape at all, who was lucky enough to have parents who traveled often. There was no 'Abercrombie Kids' in my town... so I was lucky to be amongst the elite handful of preteens who first started wearing it, like the high-schoolers we so desperately emulated. I saw your blond, sun-kissed models on the walls and anxiously awaited the day I'd be 'big enough' to shop at the main store.

Flash forward a few years... I've, as they say, 'come into myself'. My angles turned into gorgeous curves, my acne-covered former skin is now tan and smooth with just a hint of makeup. I'm 17 and a size-zero, blond-haired, beauty queen. I can say that now - because with 10 years of looking back, I can finally see myself as I truly was. But in reality, at that moment I was an insecure girl in a mini-skirt who flatteringly accepted when a tan boy with blond curls approached me while shopping and offered me a job. I was 'Abercrombie material.' My confidence soared.

Today...I'm nearly 30, I've given birth to four kids and you know what? A decade later, I am still a damn good-looking, size-three blond who wouldn't look at all out of place shopping in your store. So my point is, I'm qualified by your own standards to be worthy of your attention. You can tell the rest of them "too bad for you" if you want, but I spent too many years of my life wearing your clothes, contributing to your financial success, and most importantly - being a judgmental, exclusive bitch. Because YOU sold me on the idea - you told me that's what men wanted. In your catalogs, on your walls, the music you played... you were a voice in my head that told me the only important thing to be was popular, and the only way to be popular was to be sexy. You reminded me with every advertisement that my worth lay exclusively in my ability to look good in a bikini next to a stud wearing A&F board shorts.

You've created a niche. I have a Bachelor degree in Business, I can appreciate that. But consider this: You don't see social media peppered with hate mail to the CEO of Lane Bryant. Why do you suppose that is? From a business standpoint, you're exclusively marketing towards a narrow demographic. That's not illegal, it's good business sense.

Perhaps it's not being exclusionary that made people hate you. Perhaps its because they realized through your interviews that you never grew up. The rest of us are admittedly ashamed that we took part in creating an image that made so many feel inadequate. But you aren't for some reason. The fat girls are fat and that's not your problem, right?

Well, it may not be now... but in 10 years, I can promise you: it's going to be. I am the proud, loving mom of four gorgeous, thin, 'all-American' little girls. And I can promise you, they will never be wearing Abercrombie and Fitch. By the time they are old enough to choose their own attire, they will have learned that they have so much more to offer than a tiny waist. That the most important thing they wear is a smile, not a brand name. That being cool is treating other people with respect - no matter their shape or size. And you know what? There are hundreds and thousands of other moms just like me. Together, we are raising a generation of little girls who have bigger dreams than being crowned homecoming queen.

In ten years, Mike - YOU are going to be the unpopular one. You market to young children exclusively to plant that ugly seed of self-doubt in their minds. You tell them they NEED Abercrombie to be liked - that's the message here. And that's just not cool.


Wednesday, April 17, 2013

Part 4

Hey guys.... feeling nostalgic tonight. I know these are all located in different posts, so tonight I'm recapping the whole story to one post again. Here are parts 1-4. I feel like I will never catch up to the present, and maybe I am not meant to. I will just keep recalling these memories on nights like tonight, and telling you all about them piece by piece. I don't know if this will ever read like a book - or if that is even my intention. Mostly, its for my girls.... proof of our love for each other, for them, and for life. It is evidence of faith... and of serendipity. So, I hope you enjoy.

I know in many of our hospitalizations, I have sat down with the laptop with intentions of sharing our story, especially because they are some of the unspoiled moments when we were blissfully unaware of what lie ahead for the tiny baby in our arms. But it was still too raw to explore, to deal with my real feelings about what we have lost or had to endure. Our lives were forever changed, but lately its feeling more and more like a blessing and not a curse.
Chapter 1
In July 2009, I was a newly single mom of two under two, setting out to start my life over after a painful and heartbreaking divorce. I moved from Virginia Beach back to my hometown of Temperance, MI. After making the incredibly difficult decision to end my marriage, I just wanted to be close to my family. I wanted a quiet life with my girls and so I came home and I bought a little house just for us, down the road from the house I grew up in.

Just a couple weeks home, some of my girlfriends were anxious to get me out of the house. I knew they were right, that I needed to learn to have fun again and try to keep moving forward in my new life. I figured a few drinks would help me take the edge off the pain I'd been carrying around.. so I met up with a couple of my best friends for a girls night. We ended up at a little bar and grill, where my friend Raelyn was hanging out with some mutual friends of ours. So there was a relatively good sized group, about 8 or 9 of us. One of the guys was sitting alone watching football highlights intensely while everyone else chatted away. He was a mutual friend of my friends who I had hung out with many times socially, but never really gotten to know very well. I heard he had just broken off his engagement, so I figured if anyone could appreciate my failed-marriage-induced funk, it would be him. While I waited for my drink, I asked who he was rooting for. We talked and joked for a few minutes before the conversation led us over to the jukebox - we learned pretty quickly that we shared a deep hatred of bad bar music. Over the next $15 or so, I found myself confused. What was this strange sound coming from me? Laughter?! It felt good to laugh. It felt even better not to have a plan, to just be sitting enjoying life with another damaged person who didn't want anything from the conversation either. We sat at a little table away from our friends. The conversation drifted to my moving home. Which of course brought up my marriage, or lack thereof - we exchanged miserable stories of love gone terribly wrong and laughed at our great misfortune. We smiled and shook our heads reassuringly when the other wondered aloud what they had possibly done to deserve the hand they had been dealt. I told him I was certain no one would be interested in a 24 year old divorced mother of two young babies. I asked how he thought he would ever be able to move on with someone new, something I believed was a near impossibility for my own heart. He said, "Its crazy, I've completely changed the way I look at women..... I find myself talking to a girl and the only thing I'm thinking is 'Could you see yourself spending the rest of your life with this person?' If not, you're wasting your time."

And in that moment, that milli-second, there was a lightning strike. We locked eyes and the Earth spun faster than it has undoubtedly ever moved - and yet time stood still. I didn't breathe. The words hung there echoing in the silence, while we continued to stare into one another's souls. It was as if everything had changed in one instant... and yet, everything appeared exactly the same. It was maddening, suffocating. It was intoxicating. And just like that, I abruptly muttered an excuse and walked away to my friends.

I pretended to enjoy the rest of my night. I did my best to ignore him without making it obvious I was purposely ignoring him. I couldn't meet his gaze, it was like looking into the sun. My phone rang and I got into an unnecessary argument with my ex-husband, trying to justify my night out, that ended with me running out to the car in tears. I sat there crying, feeling so foolish for believing I ever deserved to be happy again or that one stupid night out could make my bitter outlook any brighter. Part of me wanted to be left alone and part of me wished desperately someone would come out and hold my hand and tell me I was going to be okay. I eventually gathered my thoughts and drove home.. and on the way there, prayed like crazy that God had a point to using my heart as a punching bag. At 2:30 am, I laid in my bed, in my old room, staring at my ceiling. Absentmindedly, I flipped through the contacts in my phone. Adam. Wait- what? I hadn't been hanging out with those guys for years and yet there sat his number, right at the top. I'd probably scrolled past it thousands of times without ever giving a thought to who it was. On a whim (and what remained of my vodka-induced inner voice) I typed a simple text, joking about something we had laughed about earlier in the night. A couple minutes passed. No response. Stupid Stupid Stupid. Of course he didn't write back - you are a total emotional mess, you have TWO kids and you aren't even technically divorced yet. Its 2:30 am....What did you think he was going to say? I'm sure he read it and thanked himself for his good judgement on not being the person crazy enough to marry me. I shut my eyes and willed myself to sleep.

The next morning came and went without any more thought of the night before, I pushed it out of my mind and spent the day taking care of some of the arrangements from moving. Later that evening, I got a call from my best friend Amanda. She was checking up on me to see if I was okay after leaving the bar so upset. We chatted about that awhile and suddenly she said, 'You and Adam, what the heck was that about?!' I just laughed and said trust me, there was absolutely nothing between us. Just a couple people commiserating over their bad luck in love. She laughed but told me it looked like a lot more than that from where she was standing. I assured her it was her imagination.

A few minutes later the phone rang again and it was Raelyn. "Soooo... you and Adam? You guys were talking an awful lot!" Oh my gosh, NO. Nothing there. Seriously, he would be certifiably insane to even consider a relationship with a train wreck like me. And he's screwed up too. We'd go down faster than the Titanic.... I told her it was just nice to talk to someone who knows what I'm going through. I didn't need or want any kind of relationship. A couple days later, she called again and told me that they had talked about me to one another.... That she thought we should just hang out together and see what happens. That sounded good to me, someone to just hang out with and be myself.... I was really lonely. But I did nothing about it.

A couple days later, I had arranged for a couple friends to come over and hang out in the hot tub after I put the girls to bed. Early in the evening, I hopped online to confirm plans with a girlfriend. A new message popped up on my facebook. Adam! I hadn't realized how much I was thinking about the other night with him, until that moment. He all but invited himself over, and then he pretty much did that too. I sat there confused and ecstatic - my head saying "Woah, you just said you have no desire to start anything with this person" and my heart demanding I find out what all those sparks were about. Until he showed up, I was convinced he wasn't really coming over. Why would he? But he gave me a half smile when he pulled in, like we've been hanging out forever and I should have expected him. He was quiet, sitting there observing me from the corner of the hot tub. One by one, our friends headed out for the night, and he stayed - then it was just the two of us. We talked. And talked. And laughed.... About everything under the sun. One minute it was barely getting dark and the next it was 3am and I was lying in his arms smiling like it was the most natural thing in the world. It was sooo late, and we eventually made our way to the back porch to say goodbye. I sat in a trance, trying to say something that would keep him there - I knew if he left, the moment would be lost forever. I knew this was still nothing - it was two lonely people finding comfort in one another for a few hours. Enjoying each others company and laughter. But he wasn't going. The moment of goodbye finally came, he leaned in closer and I panicked. Oh my Gosh - he's going to kiss me. My mind raced with a million reasons to stop him and yet I couldnt, didn't want to. I both wanted and feared that single kiss more than I even thought possible. But we held that maybe-moment for a few seconds and he quickly turned and waved over his shoulder as he walked to his car.

I sunk down on to the steps. Somehow I pulled it together enough to go inside. I scolded myself for imagining that there had been anything more than 2 friends enjoying each others company for a couple hours. I went upstairs, crashed into my bed and drifted into a deep, dreamless sleep - hoping to forgo any more crazy thoughts I might get in my head about impossible love.

Chapter 2
The next day, I tried desperately to shake off whatever feelings I had conjured up from the almost-kiss. We didn't say a word after that awkward goodnight.... so I certainly wasn't going to be the one to initiate conversation, especially since I was moping around trying to analyze what I did wrong. There was an undeniable connection. I wasn't crazy right? He didn't flinch away when I laced my fingers in his... he had buried his hands in my hair and hugged me close. Brushed his lips across my forehead sweetly. So how did we get from there, to the stalling goodbye on the back porch, to him turning and walking away leaving me wondering? I didn't call or text, and neither did he.

That night, I watched a movie with my girlfriend at her house. It was the Hangover movie, which had recently just come out in theaters. Adam had seen it twice already and had been giving me a hard time about how long it had been since I've been to see a movie. We had jokingly initiated a system of 'cool points' to confirm or deny my uncool-mom status. Driving home, I passed the small town joint where he was bartending, and smiled to myself as I saw him pouring drinks enthusiastically inside. He was so gorgeous... every movement so smooth, and I could practically hear his easy laughter float out the door. On a whim, I decided to send a short text. "Saw Hangover. 10,000 cool points for me. Back in the game!"

10 minutes went by, with no response. I reminded myself that the bar had looked busy and he probably wouldn't have his phone right there on him to pull out in the middle of his shift. I tried to forget about it, turning up the radio loudly to avoid the tiny voice in my head that was trying to convince me he was not interested. Was I interested? I pondered that on my drive. I was still married. It was complicated; messy for us both. Undoubtedly, there were feelings on my part, but that doesn't mean we can always act on them... A relationship was something I promised myself I would not do for a long time, until the girls were settled and healed and we were happy. Then maybe, a man could fit into our lives. But here was this messy situation, with these ridiculously strong emotions I had never felt before, and I knew I had nothing to lose: I had to at least see what was there. Let it play out. If he wasn't interested - or wasn't ready to move on - as I suspected, I wouldn't have to wonder what might have been. Finally, just as I pulled into the driveway, he wrote back. We shared a couple quick texts about the movie and said goodnight, again making no plans to talk again.

The next day, Friday, it was lunchtime and I was out running errands. I headed to Subway for some lunch and while I was there, thought, "Hey, maybe its his lunch hour too." Without even thinking about it, I texted him offering to bring him over lunch. He wrote back that he had already eaten. I was so embarrassed. Beep Beep! Text notification went off again. I glanced and saw, "What are you doing this weekend?" One of my very best friends was getting married the next day. I was in the wedding so I explained I would be busy with all of that. He wrote back something about how much he would hate to miss out on seeing me in a dress.. my cheeks burned as I closed my phone after promising to text him as soon as I left the reception Saturday Night.

He never did get to see me in my dress; I changed immediately when I arrived home. I let him know I was home and he replied that he would be over soon. My stomach was in knots. He wouldn't kiss me, but he wanted to come over? I started to convince myself he was only trying to sleep with me. Make sure he thought I was interested, but not in the 'relationship' stuff. It seemed easier than any other explanation, and I'm not blunt like that so I never could have just asked him. I vowed myself to make it clear from the start that if he thought that's what was going to happen, he was dead wrong.

He walked in with a smile and immediately pulled me close. Teased me about not still being in my bridesmaid dress... I cringed, sensing this was further evidence of his bad intentions. I maintained a cool distance at first, until he snuggled up next to me on the couch - soon I simply couldn't hold up my facade any more. We were laughing and joking like we'd been in each others arms a thousand times before. It was so nice having this underlying friendship that was evident between us, no matter how it turned out. I had never experienced anything like it. We talked for over an hour... and finally with him in mid-sentence, I couldn't take his avoidance anymore. This was so incredibly unlike me, but I barely knew who I was anymore and felt that rock bottom probably was as good a place as any to put my battered heart back on the line. Being rejected by the quarterback of the football team couldn't possibly compare to the pain of watching my marriage crumble before my eyes. One avoided kiss didn't come close to the anguish I had felt crying alone in a library parking lot, far from home, afraid of the person I had vowed to spend my life with. So I kissed him.

Not gently, not halfway... I kissed him like I had been counting every minute of not kissing him since the moment we exchanged glances in the bar. Perhaps I had been. And instead of the hesitation I expected, I got urgency and passion as he kissed me hard in return. In between kisses, I got the nerve to look in his eyes. I saw something that set my heart on fire. We just stared, neither of us knowing what to say or how to acknowledge what was happening right there in that moment.

There were certainly things I wanted to say. Like that I was a mother and my kids would always come first and he would have be okay with that. That legally the state would force me to remain married another 6 months before granting the divorce. That I trusted no one. That I would be insecure and confused and scared and that would be part of the deal if he wanted to be in my life. I needed someone who would help me heal. There were many, many things I wanted to say, but silence engulfed me as my head continued to spin from his kiss. The rest of the night was cliche movie falling-in-love stuff. We kissed, laughed, smiled, and took 45 minutes trying to say goodnight.

The rest of weekend we talked on the phone every so often, but we carefully avoided talking about what 'we' were or where it was going. Monday he asked to stop by after work. The girls and I were outside playing in the driveway when he pulled in. Liliana was just 9 months old, cruising up and down the driveway in her walker. Brooklyn was just over 2 and a daredevil, so she was enthusiastically attempting wheelies on her little ride-on motorcycle. I introduced him as my friend Adam, and they largely ignored him like toddlers do. My dad pulled in soon after, followed by my mom, so it turned into the dreaded 'meet everyone' date. Only he wasn't like other guys, putting on an act for everyone.

Days turned to weeks, and the bond between us grew stronger and stronger. As it turns out, I couldnt have been more wrong about his intentions, and he proved that over and over. He never pushed me, never crossed any lines, despite the intense feelings between us. He was happy to be patient for me... which only proved more that this was real. In August, we went on our first day out with the kids, to none other than Chuck E. Cheese. They had lots of fun chasing him around and I couldn't help but feel like a family. He was a natural, doting on them and letting them win all the games as he feigned incompetence. I only came with two, but went home with THREE worn-out, smiling kids that night. Riding in the dark on the way home, he mumbled something about falling in love with me.

He was in his element from that moment on with the girls. A few nights later, Brooklyn wouldn't sleep and kept crying for her Daddy and I would have to excuse myself from the movie we were watching to go in and soothe her, only to have to repeat the entire process 10 minutes later when she caught me sneaking out of the room. I groaned as I headed back towards her crib and Adam said, "Mind if I try?" I told him to knock himself out, but warned him she's impossible to get to bed sometimes. I thought it was sweet to offer, though she would never consider him an acceptable substitute for Mommy OR Daddy. 10 minutes passed without a peep from either one of them. Finally, he crept out and I stood there in shock. He laughed at my expression and offered, "I just rubbed her back until she fell back asleep."

I closed on my house in early September and the girls and I took a trip to Disney world with my mom. I missed Adam like crazy, we were used to spending every minute together by now and 7 days of barely any contact didn't diminish any part of what we had together - if anything, it was like throwing gasoline on a fire. We came home and knew we never wanted to be apart again. He pretty much moved in from that point forward and we were an instant family. Over the next few weeks, life got busier and busier. We both re-enrolled in school. Instead of spending hours talking and laughing together, we spent hours studying and typing late-night papers. Add to that my pending divorce and all the paperwork, potty-training a toddler, and a massive amount of debt he was trying to pay off, and it was more than we could take at the time. We were exhausted and stressed out everyday. My ex would call, I would end up crying. He came home for a visit and we ended up out in the driveway fighting for almost an hour while Adam sat inside unsure of where he fit into all of this mess. He had to sit by and know I was still someone else's wife. I knew it was unfair that Adam was having to witness all of this, and I hated it. On a basic level, we were absolutely crazy for one another, but still I knew it wouldn't be long til something would have to give....

Chapter 3
Just before Halloween, Adam came home with a different look on his face. One that terrified me. I knew what was coming but I refused to admit it. I could barely look at him as the words spilled out... "Its not fair to the kids" and "I think we got ahead of ourselves." A million 'I'm sorry's' poured out, but he sat unblinking while I burst into tears. I panicked. The thought of being alone again after being with him, after him helping heal my broken heart, was more than I could bear. It was like ripping off a Band-Aid. He just came home, destroyed everything we had together and walked out. He said it was not right to keep being there for the kids while he was confused about what to do. He said we were too different and we both are so opinionated and stubborn - he felt we would always be fighting. Mostly, he said that he couldn't handle the fact that we just jumped into this with both feet without thinking. Some small part of me knew he was right, that we never got a chance to learn . But how could we? We felt too strongly to hold back.

I hated every minute of everyday after that.... I kept myself together for the kids but cried myself to sleep every night once they were snuggled tightly in bed. He came and picked up the rest of his stuff while I was out one night. I had bought a huge pack of Twizzlers for him before that horrible day, so I left those out for him to take with his clothes. I came home to a note in return thanking me, but nothing left except an empty closet where his clothes had been and a very broken heart.

My same friend who had gotten us together in the first place called me a couple days later, saying she had talked to Adam and he was wondering how I was doing. For some reason..this infuriated me. He caused my pain, how dare he call to have her check upon me! I sobbed as I angrily spat out, "WHY does he care?!" She confessed later that he had called her and broke down saying, "I think I made a huge mistake..."

My phone rang and my heart both leapt and felt strangled with pain at the same time as I recognized the familiar four letters on the screen. Adam! I contemplated not answering but my curiousity got the better of me. I tried to disguise the fact that I'd been crying. I hoped his first words would be something about how silly this was. But they weren't, and my hopes were dashed quickly as he attempted to smooth things over by justifying all his reasons for breaking up with me. I didn't want to hear it - if it was over, who cares why anymore? I angrily lamented that I hoped he was convincing himself we were wrong for one another better than he was convincing me. The conversation ended with me asking - or perhaps, begging - if we could still be friends.

He made me laugh more than anyone in the world and I couldn't fathom not having his smile to look forward to on a bad day. I still needed a break from my life, that is what attracted me to him that first night in the bar: his ability to make me feel that my life was not over. The thought of finding someone else who I could just be myself around and feel confident, sexy, safe and funny was more than I could bear. So even if it meant that I would never have another forehead kiss or feel his arms encircle me, it was better than nothing... and I knew it. My offer of friendship was laughable. He spoke what I knew in my heart was the truth: We could never just be friends. We were crazy in love and the only way to stop it was to stay the hell away from one another for good.

On Halloween, Adam called and asked if he could stop by to see me before going out. I had decided that a zombie bride was a great way to make light of my situation and was looking forward to a night out with my girlfriends. I was a little bewildered when Batman showed up with a whole entourage of people he was going out with that night. We snapped a few pictures like two awkward teenagers headed to their first homecoming dance. My mom was there and caught my eye with a suspicious glance as she saw who it was. We chatted easily for a minute like the possibility of forever - with or without one another - wasn't hanging in the balance. And just like that, with a half-smile and a "See you later?" he was gone again. Mom laughed and said, "What was that?" I just shook my head, and just bit my lip to avoid flashing a tell-tale grin. She took the girls back to her house for a sleepover.

Later that night, I was having a few drinks at my best friends house. Halloween is one of my favorite holidays and I was determined to hold my head high and have a good time. After recounting the scene at my house to my best friend, we had a laugh and she reassured me everything would work itself out and advised me to just enjoy my night. And I tried, I really did. The next couple of hours were a blur and we truly had a blast. I forced Adam in his Batman costume from my mind.

Then he walked in to that same party. I pouted momentarily, thinking about how awkward the rest of the night would be. It didnt last long, thankfully. He avoided me for the time he was there, though I could feel his eyes on me constantly. I did what all young girls do and pretended I didn't notice or was too drunk to care. A short time later, I saw them gathering up to leave. I squeezed my eyes shut and willed him to hurry up and go, while simultaneously memorizing everything about him since I didn't know when or if I would see him again. I saw him try to make eye contact with me from across the room, so out of pure embarrassment, I turned away and studied a sign on the wall intensely. I felt his touch and could smell his cologne as he grabbed my shoulders and twisted me around to face him. I opened my mouth to demand an explanation, but I didn't have time to think as he kissed me long and hard for what seemed like an eternity. He brushed his lips across my forehead and squeezed my hand in his, then turned and walked out the door as I stood there struggling to catch my breath.

I got a text an hour later, "Snuggle with me tonight? I need you." That was all I needed, despite the wise voice in my head screaming for me to go home alone to avoid getting hurt. I picked him and a couple friends up from the bar and we dropped everyone off and headed silently back to my house. We didn't speak, for fear of saying out loud that this was a bad idea. We held hands and at a stop light, he turned to me and whispered, "I miss you." We curled up in my bed and just held one another all night. I slept with my head against his heart... I knew the morning would come too soon and as much as I refused to face it in that moment, tomorrow, he would be gone again. I was going to hate myself, but it was going to have to wait until his arms weren't holding me like they never wanted to let go. I gave in to the happiness of this feeling and slept peacefully by his side, wishing the sun would never rise.

Chapter 4
Morning came too soon, as it always does for those who desperately want to hold on to the dwindling hours of a goodbye. We untangled and he brushed his lips across my forehead out of habit. We stared at each other, unsure of the words that would be useful in that moment. My mind raced with reasons he could stay, but the calm of his fingers laced in mine had me frozen - I only could sigh softly as he pressed his lips to mine. It wasn't the same passionate kisses we had shared so many nights before; this was a surrender. "I could just stare at you all day", he whispered with a smile that drove me deliriously wild.

The moment was straight from a chick flick, except in the movies, the guy doesn't have to ride home at 9am in his batman costume. The car ride back to his place was mostly small talk, in fact, I dont remember anything that was said at all. I do remember, however, giggling incessantly because he couldn't find his key and he had to dig around for the hidden one in the bushes. Something about the sight of a grown man in full Batman costume sneaking around on a Sunday morning is sure to bring a smile to your face, no matter the scenario. We said a quick goodbye and shared a look that lingered just a little too long for people trying hard to fall out love.

There are all kinds of breakups. The ones where you realize you are terrible for each other. The ones where one person turns out to be living an entire other life on the side. The ones where you simply drift apart over time. I've experienced all of these, but Adam and I fell into none of those categories. We were hopelessly in love and trying our best not to be. Why was this so hard? That's a good question. One that perhaps we hadn't even stopped to ask ourselves. So I did what every girl swears to herself NOT to do in this situation. I demanded an answer.

Okay, so I wouldn't quite say I demanded an answer. But I did get the courage to bring it up the next day, which for my passive-aggressive personality, was no small feat. I had already gotten the obligatory "It's nothing you did wrong" speech during the actual breakup, but that didn't tell me what I really needed to know. Adam pointed out all our differences, which made me crazy. I knew in my heart that having a million things is common is not a relevant factor in a successful relationship. Our differences were what we loved about each other. We completed each other in such an innate way - the things I lack are what I admire most in him. I was so angry that he was going to use this against us as a sign we should not be together. So I pressed him for more. The next things he said though, struck a chord deep in my heart.

He explained that he felt we missed an entire step. We became an instant family - because of the kids and because of how strongly we felt we were supposed to be together. Just because it feels right, doesn't mean it IS right. I knew in my heart God had been telling us both to slow down.. We would have our whole lives together to be married. We should be having fun, getting to know one another. Not paying bills and dealing with the stress of kids, work, and school just weeks into the relationship. I realized he was right. It was just moving too fast. But we weren't pushing it to be something it wasn't - life came so naturally when we were together. Trying to slow down our love felt like trying to nail jello to a tree...

So, I was totally caught off guard when the conversation ended with him asking me on a date. "A real date?" My question hung in the air. "Yeah, a real date. Let me take you to dinner." I came up with a million reasons to tell him I couldn't handle that, you know, that it would only complicate things. But in the end, there was only one thing to say. "I would love to." After hanging up, I grinned into my pillow and shook my head in disbelief.

Game on.

Tuesday, April 9, 2013

Tuesday is all about perspective.

Evening everyone!

Today was not the greatest of days, but the Lord blessed me several times over reminding me that He will open a way where I believe there is none. I love sharing stories like this so here goes.

First off, as many of you know, I have been busy the past couple of weeks gathering records and filing out many many pages of information for our big social security appointment today. This was to have the girls disability proven for a couple reasons - the most important being they would be taken care of insurance-wise and have a little bit of money to cover their expenses in case something happened to us before they turned 18. I can't imagine asking a friend or family member to take on the financial toll, as well as the obvious huge responsibility of two kids with special needs. The other thing is that one day in the next few years, Adam may make enough that we will no longer financially qualify for Medicaid as secondary insurance - which is literally the only thing keeping us afloat. With millions of dollars in medical care each year, this would be devastating to our family. And this is the problem for so many like us - you make $80 too much and suddenly you are on your own for hundreds of thousands of dollars of medical bills. We have applied for a few other options to go about ensuring they will have coverage, but its always one of those scary things in the backs of our minds. The last thing you want to think about when your child has the possibility of some treatment or plan is how much it will costs. I know you guys, like me, would do whatever it takes to see your child gets the proper care.

Anyway, we got denied because of a technicality that really was meant to apply to people in a totally different situation. But rules are rules and they made it clear they won't be making an exception, which I understand. Still, a frustrating blow.

I left there and had lunch with my mom and the kids and forgot my purse in her car. Suddenly, halfway home I was thinking about what a horrible day I was having when I saw the flashing lights behind me. I pulled over and then realized I had no license or anything on me. I had just learned also that our insurance payment didn't go through so they had cancelled our insurance and hadnt even told us. Finally, since we just switched my license to Ohio, I had not had a chance to register my car yet so my plates were expired. Needless to say, I was distraught thinking how much trouble I was going to be in and the price tag it would come at. Thankfully, God was only out to remind me that things could be worse, because this very kind police officer gave me ALL warnings and let me go. I prayed and said an immediate THANK YOU for reminding me that things are not so bad and that I am so lucky to be loved this much by a very forgiving heavenly father!

Sometimes, I think we stare at the closed door so long, we get tunnelvision. God could be standing there right in front of me with a giant flashing sign saying "THIS WAY PLEASE!" and I think I would be kicking dirt and pouting about my bad luck. My lesson from this is to continue to pray to live with my eyes OPEN, looking for His direction. Seeking Him in every situation. Instead of feeling like the world was on my shoulders, I should have been smiling that He has overcome the world so I never have to feel that way.

Honestly, in every bad day, I can see the blessings now. It use to take a long time - looking back over months. Then weeks. And now, after a few hours - I clearly feel them all around me. That is growth! I am blissfully awakened to His work in our lives.... and the truth is once you see it, you never want to go back to looking past it again.