Monday, November 30, 2009

Ahh, the clarity of hindsight (or, how I became the crazy mother)

As many of you may know, November is Prematurity Awareness Month (although it shares the month with diabetes, lung cancer, COPD, hospice, and Alzheimer's Disease... And lots of other happy things...)

So, in the name of prematurity awareness, I want to share part of my story with you guys in hopes that others will learn from my mistakes, and maybe some kid somewhere will be born healthier and happier for me doing so. Other preemie parents out there, I urge you to do the same on your blogs and maybe an expectant mother out there will learn that one thing that will keep her from walking in our shoes...

I think most mothers who have been down this road look back and see things that they think they should have seen back then. I guess that's true with most situations... But even though I can't go back and change the path of my pregnancy, if you know anyone, ANYONE who is having twins, or is experiencing the same issues I was, please help them be informed (Notice I said "inform" and not "scare." There is a difference.) Multiples are at a higher risk and should be treated as such.

So here's my story.

We found out we were pregnant in November of 2007. As soon as we found out I picked the new OB in a very reputable office. The doctor was young and I felt she would be fresh on all the new techniques and procedures, and she would also have the more experienced doctor in her office to rely on if she was unsure about something. I made an appointment with her and began the wait.

I bought loads of pregnancy books and started obsessing over foods. I based my meals and snacks around getting all my nutrients and eliminated artificial sweeteners and unheated deli meats. No caffeine for me, lots and lots of water and orange juice, and just the right amount of exercise. Oh, and when they say 12 oz of low-mercury fish, believe me when I say I had 12oz, no more, no less, of fish a week. And I started eating 4 apples a week because the latest research had shown it decreased the risk of asthma by some crazy percentage. I was a woman obsessed.

Then I started having some bleeding...

It was mostly dark brown. I had two or three pregnancy books I read daily, and all of them said bleeding is never a good thing, but it is a common thing. Dark brown is better than bright red. I called The Doctor after three days to see if I should come in, and The Nurse told me that if it worried me I could go to the ER.

Okay, wait, you tell me if I should be worried. This is during business hours. I can come in. Should I worry, or is this normal?

The Nurse then said if it continued for 3 more hours to go to the ER. Okay, I've been bleeding for three days. What makes three more hours so different?

But I just said okay. I didn't argue.

I had no answers when I got off the phone, and I was frustrated, so I called my PCP. The actual PCP called me back within 10 minutes, and actually gave me information I could use. Yes, brown blood is common, yes it might be a miscarriage but there is nothing that can be done to stop it at this stage of the pregnancy so just take it easy and go into the ER if the bleeding gets substantially worse.

Wow, a real answer. A real plan. I could live with that.

So a week or so later it was time for my first OB appointment. They set up an appointment for the next month then sent me for an ultrasound since I was still having some bleeding.

And that's when we found out our little peanut was actually two little peanuts. :) We were 6 weeks pregnant with twins! We had wanted twins so badly, and it was just surreal.

The next morning I called my OB and spoke with The Nurse again. I told her it was twins and that I knew how common it was for a baby to just disappear during the first trimester, and we wanted to do everything possible to keep them both in there and healthy. Can we move up our next appointment? See the doctor more frequently? Are there any additional supplements I need to be taking? Any extra precautions?

"Those all sound like good questions to ask The Doctor at your next appointment," she replied.

And I didn't argue. I was frustrated but I just let it go.

A week later I started bleeding again. Red this time, and more than before. I freaked out and they sent me in for another ultrasound. Everyone was still there and accounted for. Phew.

I had a follow-up appointment with the OB the next day and she told me then that I needed to take more folic acid since it was twins. I asked about seeing her more frequently and she said they typically start seeing the mother twice monthly starting at 24 weeks due to the increased chance of prematurity.

And I say ok.

Over the next few months the same types of issues continue to arise. I call the office to ask a question and, if I ever actually even got a reply, it was never a useful one.

Meds that were promised to be called in to the pharmacy immediately weren't called in for days.

I was frustrated, but I figured I was just overreacting. You know, crazy first time-mother-itis... I assumed all doctors' offices worked that way...

We had our 20-week ultrasound and everything looked really good. The only thing they saw was Aubrie having a slight heart murmur, but they told me that was common and they usually grow out of it. I researched vitamins and minerals that specifically help develop the baby's heart and started eating more foods that contained them just to be sure.

I became sick one week later with cramping and an upset stomach, but I didn't get worried until that Friday when I woke up with a fever. I called the office all morning, starting before office hours, and left messages asking what I needed to do. We were headed into the weekend and I didn't want to end up missing my window of opportunity to see The Doctor...

I called and called. Left message after message.

Finally I just got in my car and started driving there. They will see me today whether they want to or not. Thankfully, The Nurse called me back as I was headed that way. She told me The Doctor wanted me to go to the hospital OB floor for observation and tests. I did, and they had me pee in a cup and hooked me up to the contraction monitor.

I was having contractions. Not bad ones, but they were there. The hospital OB nurse said that was pretty common. A manual check of my cervix showed it was still closed. The hospital OB nurse told me my pee came back normal, but The Doctor was ordering an antibiotic for a UTI and sending me home, with an appointment not that coming Monday, but the Monday after. (The Doctor was going on vacation, see. That's why she didn't come by the hospital to check me out, and why she wouldn't see me the following week. She'd see me after she got back from vacation. A completely reasonable explanation. If she was going on vacation, then I must be fine.) The hospital OB nurse told me I didn't have to go home, that I could stay for longer. She actually tried to persuade me to stay. I told her I would do what The Doctor said... Obviously she's The Doctor and she knows what she's talking about.

The next week (you know, the week The Doctor was on vacation,) I had a baby.

Could my premature delivery have been prevented, or at least have been postponed a few weeks? I don't know. There's absolutely no way of knowing. Do I look at the situation emotionally and with perfect hindsight? You bet. Do I feel the doctor was negligent? I don't know. I don't know what's "normal," or what's common practice. I don't think she went above and beyond my any means, but was probably super-comfortable in her role of doing the minimum that is medically required. I've heard several times now that everybody is basically treated the same until they have a premature delivery or a dead baby. Until then we're all just paranoid mothers...

But you know what? I could have pushed. I could have fought. I could have changed doctors. I could have asked more questions and required better answers. Those are things I didn't know, but now I do know. And those are things I can pass on to other mothers.

Doctors aren't always right. Go with your instinct. If you don't like your doctor, or if your doctor doesn't go above and beyond to meet your needs and help you feel comfortable and educated, then FIND A NEW DOCTOR.

And even though this is mostly directed towards mothers-to-be, it's really true in any case. I learned from my pregnancy and that shaped how I then interacted with Daxton's doctors and with my next OB during my pregnancy with Tyler. I think most of the "good" doctors appreciate my stance; some other doctors, not so much. (I'll have to tell you guys one day about some of my least favorite former doctors. It's almost comical... now.)

I am now an educated consumer. I learned the hard way. I hope you don't have to.

Thursday, November 26, 2009

Thanksgiving

Eight years ago today in Starkville, MS, I turned around and saw Shep on his knee and thought he had fallen. As I was laughing at him (I mean bending to help him up) he laughed, too, and asked me to marry him. There was so much to be thankful for!

The next Thanksgiving we were married. I tried my first Thanksgiving dinner in our tiny little blue carpeted, brown-panelled, glitter-on-the-ceiling first rental in Panama City... And we laughed again. There was so much to be thankful for!

That next Thanksgiving Shep had started his own business, I was finally out of school, and we were building a new house closer to Destin. We felt like real grown-ups :) There was so much to be thankful for!

That next year the company I worked for in Destin closed down and we had to chose between Texas, Oklahoma, Tampa, or Tennessee. We celebrated that Thanksgiving in our brand new home in TN. Thankfully our old house in FL sold a few weeks later. There was so much to be thankful for!

Thanksgiving of 2006 was uneventful. We ate, Shep hunted, I enjoyed some quiet time away from work. Life was normal and peaceful. There was so much to be thankful for!

The next year we were just barely pregnant, with what we did not know yet to be twins :) I had a new job that was flexible and perfect for a new mom. There was so much to be thankful for!

And then came 2008. There was so much to be upset, and saddened, and angry about. But on Thanksgiving, our little kung-fu ninja had his first bites of turkey and sweet potatoes, and less than a week later he was home with us. Not to mention our newest little bun-in-the-oven we wouldn't find out about for three more days :) And, yes, there was so very much to be thankful for.

Which brings us to today. Shep and I are comfortably employed in a time when so many are not. We are finally settled, and mostly unpacked, in our new home where we plan on staying until our nest is empty. As for now, our nest is full... Full of love, full of life... and full of testosterone :) We're surrounded by family and friends who, while maybe not always close in proximity, are always close in our hearts.

There is so much to be thankful for.

Now, on a different note, I want to make mention of a couple of friends who are going through difficult times right now. Please lift up in prayer my friend Kathy and her family. Kathy lost her sister and her mother last week in unrelated illnesses, and this is a very hard time for them. Please also lift up my friend Sheila's 10-month-old great-niece. She was injured in a freak accident at home this week and is now in Cincinnati Children's Hospital with 3rd-degree burns covering her entire body. The doctors are hopeful, but she is battling a bacterial infection and can use all the prayers she can get.

Thanks all.

Also, to update on our prayer requests from last week, Mr. Jack and his mom fought the swine flu and the flu lost :) No hospitalizations for baby, or for mom :) Baby Rosemary did not get to have her trach removed due to swollen adenoids, and hopefully the adenoids can come out and the trach can then go. There's a plan in place... But time can pass so slowly some times! Please continue praying for her and her family! Also, Miss Mary Farris's surgery went as well as it could, however, the doctors were not able to do everything now... She's going to have to grow a little more and then they'll try again...

Please keep on praying for my favorite preemies, along with all the millions of other preemies out there, for a safe, healthy, wonderful, amazing holiday season! And don't forget those who struggle during the holidays... Most of us have too many blessings to count... If we passed a few of them on we probably wouldn't even miss them...

Love you all, and HAPPY THANKSGIVING!

Wednesday, November 25, 2009

My shortest (and most awesome) post ever...

Daxton, the boy who should probably never walk, took his first steps today :)

Many, many thanks and praises :)

Tuesday, November 24, 2009

And now for something (almost) completely different...

Except that I just wrote a post about dirty butts... But this one refers to much cuter butts :)

We have a new bathtime song at our house, and I feel it is my duty to share. Really, it's my gift to you...

It should be sung to the same tune as "There's a skeeter on my..."
...
Well, you can sing it to whatever tune you like.

Here goes...

If your wiener's getting cleaner call for Dad (Hey, Dad!)
If your wiener's getting cleaner call for Dad (Hey, Dad!)
If your wiener's getting cleaner
Don't call for Mom 'cause I ain't seen 'er!
If your wiener's getting cleaner call for Dad (Hey, Dad!)

Yes, I know. And you're welcome :)

What I'm Not Thankful For.

Hi all,

Yes, it's very close to Thanksgiving and I should be posting a "What I'm Thankful for" post with all of the millions of wonderful things I have to be thankful for; however, this is not a "Thankful" post. This is a soap-box post. I'm writing this as I go, so it may be a little graphic, and it might offend you. All I can say is, if it does offend you, then maybe you're one of the people who should be reading this.

I am a fairly new mother, and I am one who does not take her children out very often. There are bugs out there, and my children don't need them quite yet, so we don't just go out. We go to doctors' appointments with our children. Other than that, they're pretty much home.

That being said, I'm a grown-up now, and I have been going into public restrooms for a long time. Thankfully I typically have the option of choosing from any of the stalls when I go, so if one looks pretty questionable I can just hop in the next one. No biggie.

Bathrooming with a child in a stroller is new for me. There is only one stall for mom + stroller.

Thus begins my soapboax.

We had a doctor's appointment yesterday, and it was just me and Daxton. I'm completely useless without my caffeine in the mornings, and I admit a big, fat Sonic coke in the mornings gets me through more days than it should. Yesterday was one of those days, so we take a potty break right before the appointment. The bathroom was clean and nice and all was well in the world.

Well, 20 minutes later when we're still waiting for the doc I was doing the pee-pee dance again so Daxton and I trek back to that same bathroom, in a hurry since the doctor would be ready for us any minute.

We met her coming out the door. I knew the second I saw her. Yes, stereotyping is bad, but I knew. One look in the one stall mom + stroller would fit in, and my fears were confirmed.

I'm guessing most of you who read this blog are adults, and most of us are responsible for cleaning our own homes. They might not be spotless, but there are just some hygienic standards that most people aspire to.

I also get that there are physical and cognitive conditions which might render a person unable to maintain their own hygiene or the cleanliness of the environment. It happens, and others should be understanding of that.

However, if you are a grown woman, or man, who is physically and cognitively able to do so, then there is absolutely no excuse for leaving a public restroom in any worse condition than it was when you entered.

This bathroom stall had gone from nice and clean to poop on the seat, pee on the seat, and pee on the floor. There were black specks on the toilet seat, and, you got it, she had not bothered to flush.

There is NO EXCUSE. If nothing else, if she was unable to clean up after herself for some reason, she should have stopped me at the door and said, "Excuse me, there's a mess in there and I'm going to contact housekeeping."

Of course that didn't happen.

At any rate, that's the end of my soap box. I'm still disgusted. Thanks for listening.

Thursday, November 19, 2009

Do you feel sorry for him yet?

Oh, Daxton. The sick, sick child...

Sick sense of humor, that is...

Our poor, pitiful child with chronic lung disease has learned to work the system. Yes, he now coughs when we ask him if he's okay. Such a cute little manipulator...


video

Tuesday, November 17, 2009

It's Prematurity Awareness Day! **update**

Hello all. For those of you who are not "in the know," (like I wasn't until about 5 minutes ago... bad preemie mom! baaaad preemie mom!) today is Prematurity Awareness Day.

So, instead of throwing a bunch of statistics your way I'm going to throw you two big universal facts instead...

1. Prematurity stinks. For society, for mom, for dad, for baby. Especially for baby.

2. You can help.

In honor of Prematurity Awareness Day, I created a "virtual band" for Aubrie and Daxton and made a donation in their names to the March of Dimes. You can click this link if you would like to also make a donation in their names, or to create your own band for another special boy or girl out there...

And just as an aside, please all say a quick prayer for Baby Jack, a preemie friend who has recently been exposed to H1N1... He's running a low grade fever and the parents are scared. Please take a moment to lift them up and pray for no flu (and a few uneventful days for his parents!) Also please say a prayer for Baby Rosemary... Remember her? She's going in to possibly get her trach removed tomorrow! Lots of prayers for a successful procedure! And I just found out Baby Mary Farris, our NICU neighbor at Vandy, is going in for surgery #7 tomorrow... Big prayers for her and her family!

**Update**
Baby Jack does have H1N1. Looks like his mom may have it, too. He's only been out of the NICU for a couple of months... Please pray they can treat this at home with no hospital visits for Jack, and that they both have speedy recoveries!

Thanks again all, for you support for our family as we travel this road and for all the other families that you help without even knowing...

Thursday, November 12, 2009

Oh look! I can see Mommy's face! I wonder why she's laughing?

Wednesday, November 11, 2009

Murphy's law

This morning I woke up and made my bed.

I never, EVER make the bed.

I decided to turn over a new leaf.

Today will be an awesome day.

I go downstairs to get the mail and see a letter from my certification board. Apparently I missed re-upping my certification last December. What?! I know I sent that in. Then again, we were pretty busy with a boy coming home from the NICU last December. Maybe I forgot.

If I send in a form and double the normal funds then all will be well again. That's okay.

I get dressed then feed the Demon when he wakes up. We're trying a new formula that's supposed to help with digestion and decrease spitting up. He puked all over my shirt.

Spit happens.

The nurse comes in to start the day and needs to leave a little early on Thursday. I have a hard-to-schedule client that afternoon, but they did say Thursday or Friday will work. Mental note to reschedule while driving in to work. I'll pencil in some clients and work late today so I can be home early tomorrow.

Open up the computer to print a couple of quick things and then I'll be on my way. The printer isn't working. Out of paper, then out of black ink, then not reading the new cartridge, then out of magenta... And this is all before it prints a single sheet. Get that fixed, print my forms, grab my laptop, then hit the road.

Called and rescheduled my client. Stopped to get a much-needed Sonic coke. It's a little flat.

On into work.

Open my planner and realize I already have a training scheduled on Friday afternoon. Try to reschedule it. Still pending.

Open my laptop to do some work and the laptop is not working.

Leave this place to go to my next client. Need to stop by the vet real quick to pick up some medicines and talk about our next options for treating Lola's allergies. Ended up talking to the doctor and meeting a homeless three-legged kitten.

Spent way too much money at the vet, and will probably soon be the owner of a three-legged kitten. I'm such a sucker.

Get to next client late. Had a good visit. Gas light turns on in my car when I leave. Trying to do a million things and running late again. Call my husband to get him to tell me if the medicine we've been giving Lola at night is the generic for Claritin or Zyrtec. I need to pick up whichever med we don't already have.

Not entirely sure how that turned into an argument? Don't have time to figure it out. Buy gas and get to next client.

Had a good visit with this client, too. I leave and call the husband on my way to the grocery store. I know we are completely out of dog food and need a few odds and ends, is there anything else he can think of?

Not exactly sure how that one turned into an argument, either. Oh, wait, yes I do. Men say really stupid things sometimes. This was one of those times.

Get to the grocery store and run through, forgetting several key things I needed. Like the Claritin.

Get home and unloaded. Went to fix myself a sandwich and realized I forgot sandwich meat. Crap.

At bathtime Daxton manages to kick Mommy's make-up on the floor. Spills down the cabinet and all over the rug. And make-up stains are always so easy to get out.

Went to put Daxton's sheet in his crib from where he pulled open his g-tube med port and spilled formula all over his bed last night. Realized the "waterproof" mattress pad on his bed is not 100% waterproof, and mold has grown between it and the mattress from the last big g-tube oil-spill. How gross. I throw it along with the formula-covered pillow and pillow case into the washer.

I go to get it out, and the zipper on the pillow has somehow caught on the pillowcase and twisted, and the pillow's covering has sprung a leak. There are thousands of fuzzy white pieces everywhere.

I pick them up, bag them up, and trash everything but the mattress cover.

I am now sitting in my bed and am about to pull the covers over my head and call it a day.

And what a day it was.

But before I drift off I'm making one solemn vow.

I'm never, EVER making my bed again!

Monday, November 9, 2009

An overdue update plus pics

So I've been skimping on the baby updates lately... Shame on me. We've had several appointments so I'll start at the beginning and work my way forward...

You've already heard about the ever-so-helpful eye appointment, so I'll spare you that one... It was on a Friday. That following Monday both boys had well checks at the pediatrician.

Tyler went first. The doctor called him boring other than being "too fat to get health insurance in Colorado." :) He was approximately at the 50th percentile for height and head circumference, and 100th percentile for weight. He's meeting all his milestones right on target and looking great!

Daxton was next, and she also said he was becoming boring. You have no idea how magical those words can be!

She was particularly pleased with how appropriate Dax's muscle tone is... It's perfect. With all the brain issues he has that's nothing short of a miracle!

He's fallen back off the growth chart for his actual age (19 months), but is still hanging out on the low end of the growth chart for his corrected age (15 months.) Other than that, she remains amazed with how well he is progressing!

The following day Daxton had a cardiology appointment. (We absolutely adore our cardiologist if anyone in the Nashville area is on the market for a pediatric one.) She completed the exam and echo and all looked great. The pulmonary hypertension remains controlled and his ASDs are a tad bit smaller. She's going to allow Daxton to continue outgrowing his Viagra rather than increasing it as he gets bigger, and once it's determined to be obsolete she will DC it all together. She said the plan now is to continue letting him grow and watch his ASDs to see if they close on their own or we will close them when he is older if no problems arise with them in the meantime. Soooo, no procedures to worry about in the near future!

And we don't have to go back to see her for THREE months :) I'm so proud of him!

Daxton and I went to the pulmonologist the following Tuesday, which would be last Tuesday, and we got another good report there. The doctor recommended not weaning Dax's O2 aggressively at this time, but rather just taking our time and not pushing the issue. He's off his O2 all day now and only wears it when he's sleeping, but he still seems to need to need his nightly fix. He's only getting a measly 1/16th of a liter of flow, so we'll feed his little O2 addiction as long as we have to...

They talked about weaning his FloVent inhaler, but the doctor was a little hesitant since Dax does have a chronic cough. They're going to wait until we get the results from his next swallow study (which is this Thursday) to see if the cough is more reflux or lung junk, and then we'll proceed from there.

And then after the swallow study we get to go pick up Dax's much anticipated goggles :)

And that brings us to today's visit to the pediatrician with Mr. Ty. He apparently gets jealous of all his big brother's appointments, so he opens his own bag of tricks so he can have some too.

This time we have a bleeding mouth. It didn't worry me at first because I figured it was related to teething, and we've had a few other signs that he might be working on some teefies... But Sunday night his mouth bled more than usual, and so this morning I called the pediatrician to see if it was normal. Of course, you couple bleeding gums with a history of easy bruising and the doctor wanted to see him.

The doctor completes an exam and asks a few questions, then he turns to me and says...

The good news is there are no scratches, lesions, or sores. His gums look good, there are no teeth breaking through, no signs of any viral infections causing the bleeding. The throat looks fine.

The bad news is his mouth is bleeding, and we don't know why or where.

Yay.

He said that sometimes kids with platelet issues bleed from their mouths just because saliva makes it harder to clot than it is with the rest of our body. He doesn't know that we for sure have a platelet problem, but he says there are other tests the hematologist may be able to run to check for other issues she didn't test for before. So at any rate, we're supposed to keep an eye on it and if it gets worse they're going to send us back to the hematologist sooner rather than later. Hopefully it will just go away. I'd prefer option 2!

Moving on to milestones, Ty is so big and strong... He's pushing all the way up on his hands when he is on his belly, rolling from belly to back, and trying to become forwardly mobile, although he looks more like a beached whale than an agile baby.

Super, super cute though :)

Daxton is still refusing to walk, but he is standing a few seconds on his own. He's making more and more noises, but still no "mama" or "dada." Lots and lots of squeals though! On a super-exciting note, he's FINALLY started to clap his own hands (he's been clapping ours for months.) It's in super-slow-mo and he misses sometimes, but it's very cute. He's also starting to mimic us a little better. He's discovered putting balls/blocks/whatever he can find into bowls/buckets/cups/whatever he can find is way fun, and throwing objects over his gate and crib is the best game ever.

It's progress... Slow, but steady...

So, phew, now that all that is over, I can get on to the good stuff... Pictures!

First, here's The Demon in his Halloween costume...

How precious, and how appropriate!!!

And here's Big Brother dressed up like his BFF, Clyde.

Sweet little monkeys!

And just for posterity, I feel the need to throw in a few pics from last Halloween. Daxton had his g-tube placed and his hernias fixed on Halloween day, so we had to play dress-up a little early... He was awfully cute though :)

On the vent for a while... Very few treats, but I had a few tricks up my sleeve!!! Thankfully Clyde stuck with me through it all :)

Even Superman needs a nap every now and then!

Yes, I was a little stinker... 30 calorie formula + the max amount of human milk fortifier will do that to a boy!

Hope you all are doing well!

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.

Monday, November 2, 2009

Great Balls of Fire! (ok, bad joke)

Hi everyone! So my little bro begins to harass me if I haven't posted in a few days... I have no exciting news except that we celebrated National Neuter Your Husband Day last week... And then drove 6 hours to my home town to celebrate "Christmas." (Many thanks to my mom for putting it all together for us so we could celebrate before RSV/cold/flu season gets too far underway. We have a pretty big family with lots of kids, and having a big family Christmas in December isn't a viable option yet. We're blessed with thoughtful, understanding, and flexible family!)

Shep did really well throughout the weekend, but started having some complications today. We did find out the answer to an age-old question today, just in case anyone was wondering. According to the urologist, yes, size does matter, but twice as big as normal isn't twice as good. (Is that sharing too much?) :P

BTW- He's now going to rest the rest of the week, try a new antibiotic, and he's going to be fine. He now feels that he has some understanding of what I have been through.

And I can almost nod my head without laughing at him. Almost!

(God help him, I love him so much!)

At any rate, my other two boys were CUTE CUTE CUTE in their Halloween/Christmas costumes and I will share as soon as I am energetic enough to upload. They're both doing great... Ty just turned 3 months and is right at 15 lbs, while Big Brother Dax is 19 months now and edging up on 22 lbs.

Life is good :)

Gotta go now, there's a tiny belly in need of filling (isn't there always), but wanted to ask you guys to say some prayers over the next few days for Little Liam. He and his mother have traveled now to go get the therapy I told you about a month or so ago. Please pray specifically for the HBOT to help Liam overcome the many difficulties associated with his cerebral palsy. His mom's blog is www.jenannmom.blogspot.com if you want to stop by and give them some support!

Thanks all!