He Cares for Me

Wow, I've been in a pretty foul mood this week. Not sure why. It may be related to hormones, but I can't say for sure. What I do know is, I have been feeling VERY overwhelmed this week and I haven't handled it like I should.

I've been moody, snappy, short-tempered, and an all-around hot fuse. This is not the way I want to be. I've even slacked off in my prayer time (hmm... wonder why I'm feeling this way, in part, at least?).

The other night, I was really upset about something. The thing is, I don't even remember what it was now. It was probably something related to the state of the house, with extra laundry overtaking everything, as I'm desperately trying to wash long-forgotten, wrinkled or dirty clothes so they are acceptable for donation. I'm trying so hard, but I feel like I just keep spinning my wheels in mud, putting forth a LOT of effort, yet getting nowhere.

So I was mad and looking for my keys. And it was really a thought-prayer: "I know with the way I've been acting lately, I don't even have a right to ask for Your help in finding my keys." Even the way I thought it was snippy and harsh. I paced back and forth. Then I laid my hand on the dining room table and under a folded shirt, I felt my keys.

Hot tears burned my eyes.

I melted and humbly thanked Him for His providence. And I apologized for my behavior and asked that my heart be changed.

Even in the middle of my muck and my tantrums, God cared enough to help with an itty bitty thing like finding my keys.

"Casting all your care on Him, for He cares for you." - 1 Peter 5:7

"You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will anyone die for a righteous man, though for a good man someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us." - Romans 5:6-8

Again and again, I fall flat on my face. Maybe that's to remind me that it's not about me, but about His grace and love towards me. My prayer is that I somehow become more Christ-like in my character and actions so that no one has to ask if I'm a Christian.

Getting Abbie Home, Part 1

This is the first part in the series of telling our family's story. I pick it up when the real action began. We had found out in April 2007 that there was an issue after my AFP was elevated during a routine quad screen. Follow-up ultrasounds and appointments revealed that Abbie had an omphalocele. This begins after a regular follow-up appointment with my perinatalogist, during which he discovered that the omphalocele sac had filled with fluid and he didn't know why.

What a difference a year makes. (My oringinal title to this post)

I’ve been thinking a lot about what life was like this time last year. It’s crazy what a difference a year makes.

It seems that another mother whose child was in Cincinnati at around the same time Abbie was last year, has been doing a lot of reflecting on the past year, as well. In this post over at Eye on the Baby, she wrote (bold emphasis is mine):

Perspectives...you know how you can only get a certain perspective at a certain time, under certain conditions? Recently I've been going back through old emails in an effort to clean out my mail box. I've come across so many lovely, encouraging, compassionate words from so many people. At the time I got these messages, we were in the middle of a crisis. These words meant so much.

I remember clearly how so many people said, "It will get better." It was impossible to believe. But, here I am over a year later and when I read these words I know without a doubt that they're true.

It's the perspective you can only achieve with the passage of time.

Here's something someone I've never met in person wrote me when I asked her how she got over "it"....IT being the rather traumatic birth experience.

"I guess you get over it a little bit at a time. I remember my mind trying to replay the events of my daughter's birth over and over again too. It was like my mind was a filing cabinet and I had this file that was too frightening and sad to find a place to put it, so it kept lying it on top of the cabinet for me to try and find a place for it later.

"When your first experience as a parent is as frightening and intense as yours, your whole viewpoint of being a parent is just that, but as the days go by you start to have very good moments that start to out shine the bad ones, such as first time you held your baby, fed your baby, carried your baby away from an isolet, and got to take them home. Moms who have a typical birth, all those things happen at once and you can't even separate them, I know that you will cherish each one of those little victories individually."

Did she call it or what?! If there is anything this blog is (of course it's much, much more) it is a testimony to our doing exactly what she said - cherishing each one of those little victories individually.

I couldn’t remember if I wrote anything of what my family and I were experiencing last year. I had to go back and re-read the old posts to check. I had not written anything of substance about what we were going through and the mother's words above perfectly articulate why. It's too frightening to talk or write about. For me, I didn't even want to give the words, "My baby could die" life. I didn't want to say them aloud, putting them out there in the universe, taking shape and possibility. I didn't want the ultimate fear of every parent to be in the realm of possibility for the baby I had so long wanted and tried to conceive.

So it seems that I wrote 4 posts in August 2007. One was some sort of quiz I took that said that determined I was from West Virginia. lol. The title of that post was, “How’d they know?”. Then, I wrote one post about how Abbie’s birthday would be August 27th. Well, that didn’t work out for lots of reasons, so I posted another message which stated that she wouldn’t be born that week, after all. Ha ha ha ha. Ho ho ho. How funny. Because that message was posted August 29th and she made her entrance into the world on August 31st. Both of those messages were basically copied and pasted from emails we had sent family and friends back home. My 4th August 2007 post was a montage of our belly photo session.

There are many reasons I didn’t chronicle what was going on last year. Mostly, it was hard to articulate because there was just so much uncertainty and fear of the unknown. Of course, talking about it now will be the brief version, for so much happened during my days in Cincinnati at the Ronald McDonald House.

If you’re interested, go get yourself a cup of coffee or tea and sit a spell while I stroll down memory lane. I’m doing this just to validate for myself what happened last year and to maybe shed some light on our situation back then for those who may not know our entire story.

The Cincinnati part of our journey began on June 6, 2007. My perinatalogist had referred me to the Fetal Care Center because of some things he saw during an ultrasound during one of my appointments in May. They got me in rather quickly, and Paul and I drove to Cincinnati on the 5th, my grandmother’s birthday. Coincidentally, the 6th was my boss’ birthday and I completely forgot to send her a card.

The FCC staff was incredible. There are not enough adjectives to describe them. I had to be at the hospital at 6 am to start what would be a very long day of tests, consults and meetings. The first thing we had to do was get a fetal MRI. It took nearly twice as long as it should have because someone wouldn’t stay still. She’s been active since she was in the womb and I’ve always known that she’d be a firecracker, a fighter, laidback but not being a doormat. I knew this about her before I ever met her face-to-face.

Over the course of the day, we had a fetal echocardiogram, scores of ultrasounds, meetings with different doctors… it was a very long day. At one point, I got really hungry because I hadn’t eaten anything. I had been NPO after a certain time (midnight, maybe?) for the MRI, and I was so hungry, I was almost sick. The FCC staff directed us to our “nesting room,” a waiting room of sorts for parents undergoing testing, and the receptionist brought us lunch. It was so good. You know when you’re really hungry and you finally eat, how good it is? Multiply that by a hundred when you’re pregnant and you’ll know how good that was to me.

The FCC is located at Cincinnati Children's Hospital. It is a fantastic hospital. Navigating the concourse to get to appointments at different buildings, I began being at peace. If my baby needed medical intervention, I was glad it would be there.

Right before our team meeting, scheduled for about 6 pm, we met with a genetic counselor who talked about the possibility of our baby having Beckwith-Wiedemann Syndrome. It sounded okay enough. But then the neonatalogist came in and said basically, that she absolutely had it. Normally, they wouldn’t say that a baby would have BWS without having a clinical examination, where a doctor can examine the child, see her in person and then make a final diagnosis. We were told that her omphalocele, enlarged organs, and my huge placenta all pointed to them being able to diagnose her before birth. He said that if she was born before 32 weeks gestation, she would die. He said that if she made it and had a live birth, that she would be in the hospital anywhere from 3 to 6 months. He said all of these things in a rather cold manner and I completely fell apart.

The genetic counselor came back in and tried to reassure us. I was blubbering at this point and had to pull it together for our team meeting, which was being held up because I was falling apart in our nesting room. The genetic counselor was so sweet, though. She said that everyone approaches this differently. She has seen kids with BWS grow up and have very full, productive lives. That they know more about BWS now and know how to treat it. She said that the neonatalogist has to tell us the risks and has to prepare us for the worst.

I can’t remember clearly what happened next. What I do remember is going into a conference room and sitting down at a table, at which are seated some of the best minds in the country when it comes to dealing with sick babies. There I met Dr. Crombleholme, Dr. Livingston, and Dr. Lim. All would play important roles in getting Abbie here.

During the team meeting, they showed us the MRI images. You could see Abbie in my belly, already a big girl, measuring weeks ahead of what she was. We could see her large kidneys, liver and the omphalocele. It was at that point that it became real to me. Seeing her inside me like that was definitely an experience.. Those images were both fascinating and heartbreaking, all at once.

The team told me that I would have to relocate to Cincinnati around the first week of August. After I was in Cincinnati, they would monitor me with weekly appointments. My c-section would be scheduled for late-August or early-September, weeks before my original due date of September 21st. We were told to plan on the baby being in the hospital for at least 3 months or as many as 6. I asked some questions, made some notes, but was mostly robotic. I had had to pull it together minutes before this meeting, and the only thing I could focus most of my energy on was getting through the meeting.

Paul and I were pretty much numb following the team meeting. I remember it was dark when we left the FCC and we were really hungry. At that point, we didn’t know how to navigate Cincinnati all that well, so we agreed to eat at the hotel. We were staying at the Kingston Marriott, probably the most expensive hotel I’ve ever stayed at, but the hospital patient discount made it manageable. We didn’t get a break on the cost of the meals, though, I could hardly believe that the buffet was as much as it was. At that point, I didn’t care. I just wanted to eat and go to bed. I remember they had Chicken Ratatouille, which was wonderful. I also remember that for the soaps and shampoo that hotels provide, they used Bath & Body Works products. When we arrived, I lathered my belly with the lotion. After we got the news, I hated the smell of the stuff.

The ride home was very quiet.

Rest in Peace, Linda

I have been wanting to post this for a few weeks now. Since before the appointments and before the sickness. But as with most other things in my life, I will stuff and hide my thoughts or emotions about the really deep stuff for a while, examining it and waiting because writing it or saying it out loud will make it real, and this just doesn't feel real. But it is.

About a month or two ago, something happened and I knew that there was only one person in the world who might appreciate it and think it was as funny as I did. That person was Linda. She and I were friends years ago, and had been out of touch for about six years. I don't want to get into all the reasons she and I weren't close friends any more, mostly because there are two sides to it and she cannot speak for herself now and it's not fair to talk about it now. Besides, it doesn't really matter. All I'm going to say is, we had a disagreement because we firmly believed two very different things and neither person would change her belief, so our friendship withered and died very quickly. I always hated that, but I wouldn't change my belief, and that was a deal breaker for both of us.

I tried finding her and did find her MySpace page. I was scrolling down and checking out her page, anxious to send a message and perhaps see if we could let bygones be bygones and rekindle our friendship. Or, at the very least, I wanted to share with her the story that made me think of her in the first place and tell her about the two best things that ever happened to me.

My heart began racing as I read through her comments. Comments which said things like, "Rest in Peace" and "We miss you so much." What the heck happened? I sent messages to the people who had left comments on her page and found out that Linda had a heart attack in December and died instantly. In a moment, she was gone.

I was stunned. She wasn't even 50 years old and had died of a heart attack.

I don't mean this as a pun, but I was haunted.... I kept thinking of the time that she and I were pretty close. My heart was heavy because I knew that I wasn't the Christian I should have been when we were friends.

Back then, I was just coming to terms with a lot of things about me, my life, my past and what I wanted my future to be. I was in the middle of becoming cynical and calloused and I didn't even know what I thought about church any more, to be honest, let alone know if or how I would continue living as a Christian. Not that I was wanting to be an atheist or anything... but I was so wounded by people in church and was so confused about God and why He doesn't mess with free will when innocent people are being hurt, and I was mad as hell. I was mad at God, I was mad at a lot of people in church, either for being fake or uncaring or not wanting to deal with very real, raw, hurtful things that people deal with on a daily basis, yet are taboo for "the church" to talk about (oddly enough, it wasn't long after that the Catholic church began dealing with the sexual abuse cases, thereby thrusting issues of rape, abuse, and other horridly offensive things into the mainstream media AND church dialogue).

The thing is, Linda got it. She got me. She didn't judge me for feeling what I was feeling. She just accepted me as I was. She made me laugh and helped me see other perspectives I hadn't thought of before.

It was a very difficult, dark time in my life. And I know I wasn't the Light I was supposed to be. I mean, really, I honestly believe that if you say you are a Christian, you should act like it. Not fake, but real. And I'm still trying to figure out how to be real about who and what I am now, and that God is still working on me... so while I'm not perfect, I'm still covered by the Blood. But that's a topic for another post (or bunch of them).

I began to wonder, what if I was the only person who could have made a difference in Linda's life? I probably wasn't, but we cannot assume that we aren't. We cannot assume for one second that a person we know or come into contact with has someone to show them Who Christ Is. Because there are people out there who are lost, hungry, searching and they may not ever find Jesus if someone doesn't love them, and then show them who He is. We have to be open to the fact that there are many people out there who have no one to show them The Way.

It's really easy to take life for granted, but eternity? Multiply the thoughtlessness many of us have about life by a thousand, and you'll see how much we take eternity for granted. How often do we think about eternity on a daily basis? Not much, I'm willing to bet. What if we are put into each other's life for a moment, but that the moment will have eternal consequences?

I hope that Linda found the answers she was looking for. I do. I'm afraid she didn't and my heart is so incredibly heavy because of that. Rest in peace, dear friend. I do hope you found all the answers.

2 Posts: Looking Back / Real Me vs. Perceived Me

I wanted to address something, just to touch base and move on. I didn't keep a journal during either pregnancy. Last year, while I was pregnant with Abbie, I did both email and blog updates for family and friends, mostly so people would know what was going on and how they could pray for her.

Some things are so etched in our memories that I doubt we'll ever forget them. Ask nearly any mother what time her baby was born or to tell you details about the day her baby was born, and she can. Where were you when you heard that JFK had been assassinated? Where were you on 9/11? People answer these questions without even having to think about it.

Many are memories like that of last year. The Day I wrote about last week is one of them. There were other Days that I'll talk about, because I've been thinking a lot about the past year and the past 7.5 months... how God has worked... what could have been and what is. It's amazing! Some things I didn't talk about because I was too freaked out about it to even say it aloud or write it down, such as, my baby could die. Some things were so incredible and showed God's faithfulness, that I've treasured those things in my heart until I can share them.

I don't want to really rehash things, but I think it is important, for me, anyway, to inspect them one last time before putting them away. I want to acknowledge what we went through, honor what God did and, hopefully, show the glorious work He did for my daughter. Because, can I tell you? Can I really tell you enough of God's goodness? Hardly. I talk a lot, you know that for sure, but I never want to shut up about God's faithfulness. He's been too good for me to not talk about it for eternity.

So, if you will bear with me, over the next 5 or 6 months, I'd like to re-trace my steps one last time. Not to proclaim how good I am, because I'm not. But to show you how true the words of the poem, "Footprints" really are.

**********

Real Me vs. Perceived Me

I've been thinking a lot about things. This blog and what I've written on it have gotten me into hot water on a couple of occasions. Some of the things I've said here haven't been nice. Some things have shocked people. Other things have hurt people. Though never my intention, that is what happened. While I know I should apologize for crossing lines and hurting people (and I have), should I be apologetic about being honest about who I am? About being honest about where I am life?

My question lately has been: should I apologize for trying to be real? Because, really, all I've tried to do here is be authentic, even when it wasn't nice or pretty or even a good testimony of my faith. This is the tricky thing: when you say you're a Christian, the slightest variance off the path of righteousness can cause others to point their fingers and call you a hypocrite, a liar.

I've never wanted to be those things, ever. I just want to be transparent. Even when I'm not the person I want to be. Because I think that unless we bring our faults to light, unless we confess, in one way or another, what our sins are, what our imperfections are, what our blemishes are, so that He can restore us completely, what's the point? I mean, if all I am is someone who dresses up on Sunday, puts on make-up, behaves one way, but secretly struggles with a myriad of things, why say that I believe Jesus died for me? Why say that if I won't say, "Hey, I'm messed up. I can't do it on my own. I need Jesus every day. I'm broken, but He's not finished with me yet." Because none of us is a finished product. We are all broken and in need of mending. Pretending otherwise just negates the point, doesn't it?

While I realize that me being so open about things opens the door for criticism, I still believe that being open about who I am will, in the end, be ok.

Maybe one of the problems in this is, there's the "real" me: the broken, damaged, sinful me who lives day to day, failing all the time, but always trying to be the person I think God wants me to be.

Then there's the "perceived" me, the side of me you would only know or observe in passing, the me who looks like she has it relatively together, who matches the family's clothes on holidays, the "best foot forward" me who you would only know if you didn't really get to know me, talk with me, go beyond the cordial platitudes of social settings and put forth the effort to really get into the nitty gritty of life, examining or talking about the hard stuff we all go through, and the things that only a few of us go through.

I will admit, I haven't let many people know me well enough to let me let my guard down and really open my heart. I've been hurt too many times and have learned to not put it all out there because, in the past, I've had the most hurtful things that have happened in my life thrown in my face. I am very slow to open up to others about things. But I've found that most people are so busy with their own lives and schedules that we no longer take the time to build friendships that are strong enough for the kind of intimacy I'm talking about.

In the beginning and still today, this blog is very much about examining life, taking life by the horns, enjoying life and living life. It's also about finding the Life only One can give.

But it's also about me, how I fit into the equation, and how God can take someone as messed up as I am and hopefully, make something out of it.

Listen, I don't like where I am. I haven't for a long time, but I can tell you that things have gotten a lot better. If you really knew me and knew where I'm coming from, you'd so understand that. I'm growing. The thing about plants.... they grow and that growing is continual. It's so slow, you don't even notice it, but it's always growing. I think--no, I hope and pray--that is the case with me.

My most sincere hope and prayer is that my faults and shortcomings will somehow show God's glory. If I am nothing, He is everything. If my quilt is full of holes, I hope His light always shines through.

The Quilt

As I faced my MAKER at the last judgment, I knelt before the LORD along with all the other souls. Before each of us laid our lives, like the squares of a quilt in many piles. An angel sat before each of us sewing our quilt squares of cloth off the pile.

I noticed how ragged and empty each of my squares was. They were filled with giant holes. Each square was labeled with a part of my life that had been difficult, the challenges and temptations I was faced with in everyday life. I saw hardships that I endured, which were the largest holes of all. I glanced around me, nobody else had such squares. Other than a tiny hole here and there, the other tapestries were filled with rich color and bright hues of worldly fortune.

I gazed upon my own life and was disheartened. My angel was sewing the ragged pieces of cloth together, threadbare and empty, like binding air. Finally the time came when each life was to be displayed, held up to the light, the scrutiny of truth. The others rose, each in turn, hold up their tapestries. So filled their lives had been. My angel looked upon me and nodded for me to rise. My gaze dropped to the ground in shame. I hadn't had all the earthly fortunes. I had love in my life, and laughter. But there had also been trials of illness, and death, and false accusations that took from me my world as I knew it.

I had to start over many times. I often struggled with the temptation to quit, only to somehow muster the strength to pick up and begin again. I spent many nights on my knees in prayer, asking for help and guidance in my life. I had often been help up to ridicule, which I endured painfully, each time offering it up to the FATHER in hopes that I would not melt within my skin beneath judgmental gaze of those who unfairly judged me. And now, I had to face the truth.

My life was what it was, and I had to accept it for what it was. I rose and slowly lifted combined squares of my life to the light. An awe-filled gasp filled the air. I gazed around at the others who stared at me with wide eyes, then I looked upon the tapestry before me. Light flooded the many holes, creating an image - the face of CHRIST. Then our LORD stood before me, with warmth and love in HIS eyes.

He said, "Every time you gave over your life to ME, it became MY life, MY hardships, and MY struggles. Each point of light in your life is when you stepped aside and let ME shine through, until there was more of ME then there was of you."

May all your quilts be threadbare and worn, allowing CHRIST to shine through.