Thursday, November 5, 2009

The ugly truth

So there's something I've thought about a lot over the past couple of years, and it seems the more I think and study and try to learn, the less I know. Everyone else I talk to appears to have it all figured out, and once upon a time I thought I did, too...

I grew up in a small Methodist church where we learned, among other things, that God is good, Jesus loves us, and prayers are always answered. As I've gotten older my beliefs may not be exactly the same as what we were taught in that tiny little church, but those basic premises have always remained the same.

Prayer itself has always interested me. So many people have so many different interpretations of what prayer is, and how it works, and how you have to do it...

And of course I've always had my own interpretation, too. Mine may be a little over-simplified compared to some, but in my life I've found the simplest answer is often the best.

I don't believe that we have to start our prayers with "Heavenly Father" or end it with "Amen." I don't believe we have to ask for forgiveness in the beginning or ask for our prayers to be answered in Jesus' name. I don't believe we have to repeat a prayer 50 times for Him to listen, or use eloquent words...

Maybe I'm wrong, and I most likely am, but I have never seen God as someone I have to sit down and have a conversation with for Him to hear me. I don't have to bow my head. I don't have to say it out loud. Don't get me wrong, I think there is a time and a place for that, but I don't think we have to do those things for God to listen. To me, God is the Voice in our heads, the Laughter and Tears in our eyes, the Dance in our feet. He just Is. He hears us when we're lost and when we're found; He hears us when we're alone and when we're in a crowded street; He hears us when we hit our knees, and when we're standing in line at the grocery store.

Again, I'm probably wrong, and maybe therein lies the problem. I never really thought that much about it until we found ourselves in the hospital.

Through Aubrie's life and passing, and through Dax's many, many illnesses and ups and downs, I found myself very interested in how people pray. Some would pray for health for Daxton, others would pray for strength, acceptance, and peace for us. Others would pray for God's will to be done, and still others would pray for Him to guide the doctors and nurses. There were prayers for medicines and procedures and surgeries to work, and for better days tomorrow. Many of you remember praying for pee when Dax's kidneys failed...

All in all, I found most people prayed for A.) something to happen, or not to happen, B.) something to happen or not to happen, if, of course, it was God's will, or C.) God's will to be done.

I'll be completely honest with you, in the beginning my prayers were probably a combination of the three, depending on my mood and what kind of day we were having. Over time, when my nerves got so raw from having my entire life tossed around like God's hot potato, there were days when my prayers sounded less like pleas and more like angry tirades. There were times my prayers started with "Listen here you big fat bully..." and I can even remember praying once that if He was going to take Daxton with Him, to go ahead and do it already and quit yanking us around. I don't think I said it that nicely, though, if I remember.

No prayers are more honest than those you utter when your child is suffering. And maybe they're not all so pretty.

There came a point when Daxton was in one of his "trying-to-die" phases when I told God I would no longer be praying for better days tomorrow, or for medicines to work, or for a better chest x-ray or blood gas... From that point on I would be praying for perfect lungs, a perfect heart, a perfect baby. He, and only He, could do those things. I knew He could, but didn't know if He would. I accepted that, but I was not happy about it.

I remember the day that Daxton was moved into the crib for the first time. Our nurse that day is one of the most wonderful, amazing Christian women that I have ever had the pleasure of meeting, and she did a lot towards helping pull me from my God-funks that I got into from time to time. After Daxton was moved to his crib we prayed together that God would keep Daxton's body temperature up so he could stay in his crib.

Dax was not able to keep up his body temp, but thankfully God sent lots of blankets and a heat lamp. (Okay, that was a little sarcastic, but that's how it felt at the time.)

I was a believer, and I laid my and my son's life in His hands. I would tell Him that we knew He was in control, and that we accepted that and would live the life He laid out for us. But I still felt His plan really stunk.

You watch children die. Innocent children, with good families. Innocent children with drug-addicts for parents. Children who are very much wanted, and children who are not. Sometimes it's hard to see God's plan. Other times it is even harder.

You begin to wonder what the difference is. Why one child lives and another dies. Why one child survives with no long-term issues, and the next child will forever require the help of others. Did one child have more people praying for him? Were the prayers from more righteous mouths? Were the parents of one child "better" Christians?

No. It doesn't work that way. It would at least make sense if it did. At least we could look at that scientifically and make some rhyme or reason of it. But you can't. It's just all so... Random.

And it is absolutely impossible to go to a funeral for a baby who fought and fought and fought to live and walk away feeling that there's any beauty or justice in that. You just can't.

But everyone around you knows exactly how you should feel. They tell you on good days that God is great and He answers prayers. Then you hear on bad days not to blame God, because it's not Him. They tell you to put your faith in God and not to worry because He will protect your child. And then when you catch a medical professional in an error, others will tell you that God allows free will, and He allows us to make mistakes.

(It's a bit like watching a gameshow or a ball game... Everyone in the crowd knows what to do. It's much harder when it's your life on the line...)

We had heard "God has a plan" so many times before Aubrie's memorial that I told the preacher if he spoke about how Aubrie's passing was all part of God's plan that I would personally throw a hymnal at him. I wasn't the biggest fan of God's plan a that point in time, and told Him as much.

I guess the gist of what I'm trying to say is that, when you go through an extremely difficult situation, your faith gets tested. You wonder, what happened to the God I learned about as a child... The One who was all-powerful. The One who raised the dead and caused the blind to see? Where are my miracles?

I've met people along the way who have lost a child, or two, or three, and tell me they never questioned God. They understood He has a plan bigger than us, and they will succumb to His will without batting an eyelash.

I myself am guilty of questioning. Over and over. And batting lots of eyelashes. And kicking and yelling and screaming. A self-righteous Christian at her best.

(I told God on several occasions that He made me that way, so now He has to deal with it. Isn't that what all good, mature Christians say?)

And here I am a year-and-a-half later, and I still don't understand. The pain and the heartache and the stress have lessened, but I still don't understand. There are so many Bible verses on prayer... And none of them that I can look at and say, "Aha! I get it now."

Maybe that's how it's supposed to be? Maybe it really isn't about ultimate understanding, or knowledge, or wisdom. Maybe life is just one long car ride with God, and we're the restless kids complaining "Are we there yet?" and "He's touching me! Make him stop touching me!" while God steers us to the final destination. And then when we get there we can finally understand what the journey was all about.

Or maybe He gives us the keys, a phone, and the map and sends us on our way, knowing that the road is long but that we'll get there in our own time and we can call Him when we get lost.

I just don't know...

But here's what I do know:

I realize now that I knew how to be a good wife... until I got married. I knew how to be a good mother... until I had kids. I knew how to rely on God... until I really needed to rely on God.

I know that, in reality, I know less now that I have ever known. But despite it all, I still have these three things:

God is good, Jesus loves us, and prayers are always answered.

I don't know how, or when, or why.

And I can really accept that now...

Even if I don't always like it.


A Little Help in the Kitchen said...

Just in case you ever wondered what most of my prayers were for you... I prayed for Daxton, even though I really didn't know how or what to say. But I always prayed for yours and Shep's faith not to waver in this terrible time. God does answer prayers!

Laura (speaking for everyone!) said...

I know this took alot of guts and thought to write-it's sometimes hard to speak out that we have questioned our Faith.

This was a wonderful and honest blog that I know strikes a cord with me as well. While I was fortunate to make it out of the NICU relatively unscaithed, there were times, especially with JD that my prayers were just cries as there were no is so hard to see your child suffer and to not question why... it makes no sense.

I love you girl- and your honesty! You are an amazement to me!

jannette said...

I think those basic truths are true. All of us who have gone through these hard times look at the world differently then those who seem to coast through life. Maybe we're meant to understand things differently. Maybe there's a greater plan we can't see that asks for us to make it through and learn to rely on God more and more. I know I had many parents in the NICU thank me for my help and my support. I was able to share my faith with them. Maybe that's why I had to be there so long. Maybe there's someone with a baby there all the time who can attest to God's love and support others.
But I do know I prayed so hard for my babies and for Rosi after she was born. I prayed and prayed and I know that while God didn't answer my prayers the way I wanted Him to, He did answer. I just can't look at those verses in the Bible about prayer and claim to know what they mean. I'm not sure I ever have known what they mean. I know I don't have this prayer thing all worked out. I don't think I even have my faith all worked out. There's many of us right with you Molly.

Christin said...

Mollie, this is really touching! You have an amazing way with words. I to agree it sometimes is hard to understand god's plan, espeically with our children. Dax is an amazing little boy and has amazing parents. I feel bless and honor to know each one of your family members. I love each and every one of you!

Stacy said...

Mollie you are such an amazing writer and you moved me to tears. I grew up viewing God as some sort of all holy magician I could just send a request to through prayer and have my needs delivered to me like 1-800-Contacts. I know that my time in the NICU probably seems like a cake walk to other families, I know we are blessed though I can't seem to explain why, but it was all we knew and difficult enough for what it was. I became so angry at God, so confused as to why this was happening to me. Through a lot of soul searching that I'm probably not yet done with I've decided that I wasn't being punished for stealing gum when I was 4, or for having a child before getting married. And God may not have put a rush order on answering my prayers, at least not one I would have paid for, but he listened to me when no one else would. He took my anger and said nothing in return. He just listened. He let me beat on him with my words and still listened. I think thats what prayer is for me now. I always hope that whomever I'm praying for gets what they need, but when its for myself, I just talk and He just listens.

Jennifer said...

Mollie- That was very well written! I like to say that I don't question God, and I usually don't. I just try to accept things. But sometimes I do question and I don't understand why things happen. Who really does? People can spout off about free will and sin, but really, we can not possibly wrap our minds around the things that go on here on earth. My amazing pastor said, "It's OK to cuss and spit at God. He can take it. And then you can begin to heal." I thought it was so wise. And not something I could ever see myself doing. Like you said, that's how God made me!

ski said...

Mollie...even the "BEST" Christians I know of have openly questioned God in thier own blogs and personal walks. I think that is just a natural part of the walk.

I have always looked at prayer as a sort of on going conversation. Sometimes I get the answers I want and other times I am the 2 yr old on the floor kicking and screaming.

Well written Miss Mollie!!

Kathleen said...


Thank you for writing this. I got to visit with you a few times at CMC NICU and remember your sharing some of these thoughts and feelings. I believe that you have touched on so much truth here.

When my mom was on life support for 3 weeks a few years ago, all I could do was to ask God to take care of her and believe that God would, no matter how everything turned out in my limited human view.

There is so much we don't know, and the more we think we know, the less we seem to know. And sometimes real understanding of what has happened and is happening comes much later, even many years down the road of life.

I think that what you've written here may contain the seeds of your book that you've thought of writing, and that it would be a blessing to many people, not just those with NICU experiences.

I pray that God will continue to be revealed to you and to bless you and your sweet family.

With love,


melbhaber said...

Hi, I am new to your blog and I think it's amazing. My Daphne was born at 27 weeks soon after twin sister Leah passed in utero. She was in the NICU for 5 months. She got over kidney failure, BPD, and eventually had open heart surgery. She is home and well, but we still have many, many struggles. I started blogging after her heart surgery. If you want to meet her she is at
Say hi to Daxton.


Daxton's Personal Assistant said...

Thanks everyone. Yes, this was hard to write... Hard to say out loud... Hard to think! I've been wanting to write this post for a long time, but the words just never came out right. I'm not sure I expressed everything I wanted to say, but it's a start. I just hope it helps someone else see that it's ok to not understand. We aren't alone, and there's strength and beauty in that. Love you all!