And the Winner Is....

Sorry it's taken me so long to get this up, but the kids had to eat at MARS 2112 tonight, and we have been having internet issues all weekend! I'm way behind on email reading and responding because it's been really hard to even get online long enough to post. Thank goodness I can still receive all your beautiful emails on my phone. I can't tell you what a blessing they've been today...I have felt such a peace today, and I know all of your prayers have been holding me up.

We had a very nice day today. I'll post more about it later, because I know what you all really want...you want to know the BIG WINNER! We did a very fancy drawing for the Prize Package, and I am currently working on the drawing for the Promoter's Package, and those winners will be notified and up as soon as I can get them up, internet connection permitting. =)

So, here it is...the video you've all been waiting for! If it says unavailable, it's still processing, but I wanted to get it up ASAP! Congrats to the winner, and now I'm going to plug away on the Promoter's Drawing!

Malfunction Junction

So, the ChipIn event decided to end itself early...why, I don't know. So if you'd still like to enter, please use the brown ChipIn widget at the top of the page. I will leave the contest open until we return to the hotel, late this afternoon or evening, so you still have a little time to enter to win!

Have a great day!

Happy Birthday, Eli

Happy Birthday, Sweet Boy. We're getting ready to go out and see your name in the Book of Life right now. Ava is writing a song about her broken heart and how much she misses you. We all miss you, more than I could ever explain. Love you more than more.

The Super Special Day

We had a great day today. We were out of the hotel for almost 12 hours with NO STROLLERS! I never though we'd make it, but the big kids were champs. I've never felt so much freedom in New York! Subway? No problem...we can handle the stairs for once! They were so much more engaged with their surroundings while walking...they always seem to zone out when they're strapped in to a stroller.

We started out the morning by sleeping in, then getting ourselves big cups of Starbuck's Perfect Oatmeal (I like mine with brown sugar and the nut medley) and eating them in Central Park. The kids explored and had a great time.

After breakfast, we headed off to the Museum of Natural History, where the kids were completely convinced that all of the animals there were just "models" and not dead animals. I didn't correct them. They were completely obsessed with the Dinosaurs, anything underwater, and anything that looked like it might be a video. As you can see below, Ava was totally in tour guide mode. For some reason that meant she had to have her hands on her hips all day long.

Then it was off to the Staten Island Ferry to see, as the kids call it, the Statue of Liverty. The sun was actually out today, so we didn't even have to wear our gloves! It was awesome. I don't think we've ever been in New York when the sun has been out. We wandered around midtown for a while, then went to one of our favorite hole in the wall chinese places for dinner.

Then it was a loooong 2 avenue block walk back to the hotel playing I Spy with the kids to distract them from how far they'd walked today. =)

They are now completely conked out. We have some exciting plans for Eli's Birthday tomorrow, and of course, the Profound Pictures Prize Package is ending! Thanks so much to all of you who have donated!

We will be ending the contest when we return tomorrow, whenever that may be. I chose noon as a timeframe, but it may be after that, although you shouldn't count on it! We will videotape the drawing, and email the winners! Though I will probably not post them publicly until I have their permission, you can expect to receive an email tomorrow if you are a winner, so make sure you check your spam folder!

Thanks for all your kind words on yesterday's post. I am so glad that Eli has touched so many people's lives...it means a lot to us. I am cautiously excited about tomorrow, although I know that I may lose it at some point throughout the night/day. Usually the night before is the worst...remembering him kicking, that I wanted to go to the hospital but didn't...it's just hard. So please, if you all could save me a tiny little piece of all that prayer power we're giving Stellan to help me with a little peace for tonight, I'd greatly appreciate it.

Health

Quick aside: We made it to New York! It was a long train ride, but that's a whole other post. Suffice to say we survived. =) If you want to enter Eli & Seth's Profound Pictures Prize Package, please make sure and do it by noon on Saturday, March 28th!

_________________________

I sit here, watching my two oldest kids sleep, wondering how they have survived mostly unscathed in this world. It’s funny, because if you would have asked me two years ago, I would have told you that most kids turn out just fine, it’s just that we always hear about the sad, scary cases because it’s like a car wreck…you can’t look away. As long as it’s happening to other people, it can’t happen to you…it’s against the laws of averages, right?

But now, looking at them, realizing how naïve and shallow I was, how immature in my faith, I know better. Most kids aren’t fine, and most parents aren’t lucky. Not one of us is righteous…no, not one. We are all saved by the grace of God and it is his will that forms our lives. Whether our kids our outwardly healthy or not, it is up to us to make sure their souls are healthy. That is the most important, maybe even the only part that matters.

Ava and Jace aren’t healthy because John and I are lucky or blessed. They are healthy because God wants them to be healthy. Seth and Eli were not born unhealthy because John and I are unlucky or cursed. There is no reason that I can understand that Jace was born just about as early as Seth and had absolutely no lasting complications, while Seth has many. No reason I can think of to explain why in the work Eli died just moments after I felt him kicking, perhaps even while I was buying donuts to ingratiate myself to the nurses in the hospital. No reason I can think of that Stellan is sitting in the hospital, his fate unknown as of yet.

I can’t think of the reasons because they are not earthly reasons. They are not earthly decisions. But make no mistake…just because we don’t understand them does not mean that God doesn’t understand them either. In fact, I firmly believe that He does understand each and everything that happens on earth, good and bad, and I’ll go one step further. I believe that He can and does grieve with us even as he is allowing something bad to happen to us.

I can’t tell you how much I want to be laying here right now, cuddling my almost two year old son, planning a birthday party for him on Saturday, running my fingers through his black curls and kissing his chubby cheeks. Instead I am trying to convey to a computer screen what it feels like to miss someone more than you can ever express while still being intensely proud of their life and what they are doing in the larger scheme of things.

Eli’s life has touched people, brought them to Christ, taught them to be thankful for what they have and showed them how to slow down and appreciate their loved ones. Just by living and dying he has saved other babies from being stillborn, just by arming their mothers’ with the knowledge that they are their baby’s very best advocate. He has saved babies who could have died in a car accident, improperly restrained, if they had not come to me for help. They could not have come to me if Eli had lived…I became a Child Passenger Safety Technician as a legacy to him. If he had lived, he would have been a normal little boy, rolling in the dirt and misbehaving, making an impact on our lives, sure, but not on the world in any huge way.

But now, he has touched so many…I am so proud to call him my son. Grateful to have been able to carry him for the time I had him, thankful that I got to know him in those months, that I had all the complications I did so that I could see him, alive, on the ultrasound screen.

I’ve said before I begged God to give him back, as I was in labor. I begged him to make the doctor, the ultrasound tech, my own brain wrong, to make Eli take a breath.

He didn’t. My answer was no.

At 25 years of age, I held a beautiful boy in my arms and no matter how much I wished it weren’t so, he was dead.

But did that make him any less of a miracle? No. His long fingers and toes, his soft, curly hair, his impossibly long eyelashes…there is no one in the world who can convince me that God doesn’t have a hand in all of that. No way that he was knit together so painstakingly for no purpose at all.

Today, I don’t have him to hold. Today, it is harder for me to remember exactly how he felt and what he looked like. But I still see the miracle of his existence every day.

I see it when his sister never ever lets an opportunity to share his story pass her by. She is learning to be a natural evangelist before she can ever learn about the negative connotations of the word.

I see it when his brother prays at night and tells God he is upset that Eli is not living in our house. He is learning it is ok to be upset as long as we take it to God instead of keeping it from him.

I see it when I open emails from moms who felt alone until they read his story, moms who also lost babies, who have no one who wants to talk about it, no one they can be real with. No one to talk to when they don’t get over it as fast as everyone things they should. If nothing else, they can be real with me. I understand real.

I miss him. I wish he were here. But I am beginning to see there were bigger things in store for him, things he couldn’t accomplish waiting around down here with us. I still wish we had gotten to keep him longer, but I wouldn’t trade the time we had with him for the world.

I want to raise children with healthy souls who strive to be Christlike in every way. That is the point. That is THE point. Eli is not only refining my soul, John’s soul, and the souls of people he encounters. He is refining my other children’s souls, and I hope that they will be more empathetic, sensitive, caring people because of him.

We're off!

Bright and early tomorrow morning, we'll of up and at 'em and heading for Orlando to jump on a train!

I'm very excited. I'm very overwhelmed.

I have been overcome with sadness lately...the fact that I am so busy is the only thing keeping me going. I don't understand how all the bad things in this world keep happening. Stellan, Eli, Audrey, Abby...sometimes it feels like too much sadness to handle.

But in that sadness, there is still hope. Hope that Stellan is going to pull through this and show us all the Mightiness of God once again. Hope that before we know it. Seth will be talking so much we won't be able to get him to stop. Hope that Eli and Audrey will bring countless people to know God, or to make other families grieving a loss feel less alone.

There is hope, and there is prayer.

I will be hoping and praying. God is Good.

_________________________

I will be posting once we get to New York, and will keep up with Twitter in the meantime. I have some special posts in my head for Eli and would appreciate some prayer to help get them from there to here.

Weekend Update

Doesn't it look like Jace is parting the Red Sea in this picture? This is a random stick he found on the beach that he fell in love with. When he dropped it in the water and it got swept away, he was inconsolable for almost 15 minutes.

_______________

I am so behind in life right now! We still have family in town, so we've been doing all kinds of touristy things we normally forget to do, and it hasn't left much time for anything else. I just started packing for our NYC trip tonight and am, as usual, overpacking. I have about a bajillion emails that are starred in my inbox, so if I haven't written you back, don't take it personally...I am working through them, slowly but surely!

______________

Emotionally, I am in the strangest place right now...I am in shock over how quickly Seth's approval came in, and how fast his surgery is coming up (no date yet, but I will let you all know as soon as I do!). I am really nervous about the surgery and all the things that come along with it, but I know that I will be so happy when it's over.

On top of that, with everything that's been going on, it's been difficult to focus on Eli as much I really like to do this time of year. When I think that in 6 short days he would have been turning two, it just blows me away. It's only been two years. It's already been two years. You know how you can throw a rock in the water and watch the ripples go out, wider and wider, affecting more and more of the water? Eli's life and death is still rippling out, affecting things I never thought would be affected. Mostly in good ways, but sometimes in ways that I never expected. Sometimes, no matter how blessed we are by God in our lives, it is really hard to be happy when all I have to do is let down my guard for a second and it all comes rushing back...his last kick, the ultrasound where he was beyond still, the moment the realization that I was going to have to deliver my dead son hit me, his beautiful black curls, all the guilt I felt and feel...what did we do wrong to be punished like this?

Yes, I do know we're not being punished. But sometimes it feels that way anyway. I love how Eli and Seth tough lives, but even more than that I would love for them to be normal boys, alive and hearing, driving me crazy every day. I miss him, and I miss the chance Seth never got to be typical, without therapy and specialists every day of the week.

__________________________

So I realized I never posted an updated picture of my tattoo after it healed! I love it so much...it's a great conversation starter with people and it really opens up a great dialogue with people about our story and how God has worked in our lives.

Seth is becoming a huge night owl...time to coerce him into going to bed!

Life's A Beach!

Thanking God for the little, every day things...

The best beach stroller ever.

Our native Floridian who is as into making sand angels as kids up north are into making snow angels.

Cousins.

Superheroes.

Babywearing.

This little miracle.

Sand in your toes.

Having family around to lift you higher than you can make it on your own.

A warm towel after a dip in the cold ocean.

Getting to look at this face every day. 

Happy weekend, everyone! What are you thankful for?

What a God He is!

I only have a moment...I am literally falling asleep typing. We have had a huge couple of days...Busch Gardens yesterday, A morning Wii tournament today and an afternoon and evening at the beach with our family staying at the house.

But. BUT. I had to write.

Many of you know that we recently submitted to insurance for Seth's cochlear implant surgery. We pretty much expected it to get denied, and it did. We were bummed because we'd been praying for it to just sail through, but we knew that denial the first time around was pretty much inevitable as Seth is still under 12 months old, and a lot of insurance companies refuse to even consider covering implants before then.

When we got the call about the denial, the surgery scheduler was still really upbeat and said that they were trying to schedule a peer review, where our doctor would talk to one of the insurance companies doctors, and, if he could make him understand why it's necessary to do the surgery prior to twelve months, then it's approved. Normally that comes down the line after the regular appeal, which takes 30-60 days.

Well, I got the call today. Seth has been APPROVED for cochlear implant surgery less than 24 hours after his denial! We never, ever, in a million years expected  it to happen so quickly!

We don't have a date set yet, but expect to set one next week. Wow! I cannot believe we are here, at this point, scheduling surgery! I can't wait to tell you all the rest of the awesome things that have been happening, but they will have to wait until tomorrow. God is so much bigger than we ever give him credit for...I had been so scared about the prospect of surgery and whether it was the "best" thing to do for Seth, and I prayed asking for clarity and I said that if it was NOT the time for Seth to get implants, to close the door with insurance. And look at this...a resounding YES!

Painted By God

My darling cousin (and one of Seth's godmothers), Logan, and her boyfriend, Jacob are visiting for spring break. I promised her she could star on my blog while she was here. =)

We spent the day at the pool the other day, and as I was putting sunblock on Jace, he was examining Logan's skin. "Your skin is black!" He exclaimed. (To be fair, he really has not concept of brown. Most things even darkISH in color are black to him). Logan laughed and agreed with him, and he kept going on about her skin being black.

Ava, my empathetic girl, came up to Logan and put her arms around her while stroking her shoulder. She examined Logan's skin closely, then her own. After a moment, she said "Wow. I guess God hasn't painted my skin yet."

Dear Seth

My Sweet Bubby, 

You're 8 months old today! Today we were at your pediatrician's office, trying to figure out why you won't gain weight, and she said "He is so challenging! Before he was even born he was giving us headaches!" Don't get your feelings hurt, though, because she is in love with you! The day after you got released from the NICU, we headed in to her office so she could see you and she came running down the hallway, arms out, saying "Is my baby here?!"

That's why I love Dr. Amy and why we'll always stay with her. She really cares about you, about Ava and Jace, and even me. When your brother Eli died, she called me to tell me how sorry she was, and she told me her own very sad stories of loss, about how long she'd been trying for her own baby and how many devastating losses she had been through. Knowing that about her, and knowing that every morning she gets up and loves every one of her patients as much as she loves you, even though it has to be hard for her to be around babies all day when all she wants is one of her own, I am amazed by her. 

We didn't get very far on the food issue, but you did something amazing since last Thursday...you gained almost 6 ounces! You went from not gaining a thing for a month to gaining 6 ounces in 6 days! It must have been all those prayers and Ritz Crackers you've been downing, because I can tell you what it wasn't...supplements. You laugh in the face of a bottle, and you curl your lip at formula. You have told us, over and over in the past few days, that it just ain't happening, and that you'll be content to nurse, eat Ritz Crackers, and stare longingly at Subway brownies until you're old enough to eat one. I have decided I am going to let you be and stop worrying about you...you're apparently living life with your own agenda, doing it all on your own time line.

You're beginning to sit well on your own if you have a toy in front of you that interests you, and you love to stand hanging onto something. You have decided that rolling over or even laying down is for pansies, and you prefer to be upright at all times, even when you can't hold yourself up anymore. You've turned into a little monkey, balancing on my hip, one arm clutched tightly on my arm, the other grabbing madly for everything in your reach, like faces. You're a big face grabber. To greet people you know, you'll grin at them and reach wildly for their face or hair and grab on.

In just 7 days, you'll be going on your first train ride! We're taking the train from Orlando to New York City, and I can't tell you how excited I am...we were there last year, when you were taking up residence in my belly, and I can't tell you how many times I wondered if we would be back with you this year. It feels like too much good fortune for us to be taking you with us, our healthy, happy 8 month old. During my pregnancy, all the doctors were so negative about your chances, I didn't allow myself to hope for a happy outcome, and yet here we are.

When I was pregnant with you, I prayed desperately for a little boy. After your brother died, I just wanted something of him to go on, and when we sat in the ultrasound room at 15 weeks and the tech told us you were a boy, I was so relieved...I didn't want to replace Eli, but our hearts were begging for a little boy who I could pass his things down to, just like I would have if he had been here. You just outgrew that last outfit that was a hand me down from Eli, and that was hard. There's something so sad about growing older than your sibling ever had the chance to, and sometimes when I look at you, I wonder what Eli would have been like at this age. He was so different from you and your fair haired, blue eyed, golden boy looks...Eli had black, curly hair and a very serious look, more serious than you've ever been in your life. But there is one thing that you guys share, and that's your ridiculously big feet. 

Thank you for being our blessing, Seth. It has been so amazing to spend every waking (and many sleeping) moments with you for the past eight months. I can already see the little boy you are becoming and even though I may seem short tempered and like I want a break on the days you make it clear you need to be held every second, the bond you and I have surpasses anything I've ever experienced, and I want to thank you for insisting on it. Walking into the room and seeing your face light up and hearing your little voice say "Mmmm!" insistently as you hold your arms out to me makes every single second of my life worthwhile. When they told me you couldn't hear, I thought I would never hear you call my name, and you've proven me wrong already, on your own terms, in your own way.

I love you, Seth B.

Love,

Mama

Connor and Eli- Best Buds 4-Eva

My friend Mandy grew up a few hours from the place I grew up. But we didn't meet then. She was just one town away from where my husband grew up. But they never met, either. We never met, in our entire lives, until I moved away to Florida and had babies, one of whom died, and started a blog. She ran across Seth's blog...I can't remember how, anymore, and she emailed me. She had a baby, too. Not only that, but he'd also died. We were both in the club. But it was even stranger than that...our boys shared a birthday, one year apart.

We started writing back and forth, and the things she wrote, I could remember thinking and feeling them all myself. It was overwhelming and so awesome to be able to be a part of her healing process and to be able to talk with someone who totally understood when I said "This sucks!" Her little boy's name is Connor, and he died just 71 minutes after he was born, due to a completely preventable condition called Vasa Previa.

She decided to hold a 5K in honor of Connor and to put all of the proceeds towards the Vasa Previa foundation, and the 5K is going to be run on Connor and Eli's birthdays! Even though we won't be there in person, Mandy knew we wanted to represent no matter where we were, and I was thrilled to open my mailbox yesterday and receive our very own race shirts with Connor's very own footprints on them!

Ava has been rocking hers (yes, she used the word "rockin'" along with a totally rockin' gesture) continuously since then. Church, picnic, grocery store...she's spreading the word down here in the south in her used car salesman-ish way!

Ava signs "I really love you!"

We will spread the word for Connor even more on he and Eli's shared birthday, when we wear Connor's shirts on the busy streets of New York. We have been given the opportunity to go again this year to celebrate Eli's birthday, and I am so flipping excited, I can't even tell you. The streets of that amazing City really are my little boy to me in so many ways. Even though Eli never went to NYC, the week we spent there immediately following his birth was such a blessing to us...I feel as though I catch a glimpse of him around every corner, the baby he was in the arms of someone walking down the steps, the boy he could have been running ahead of his father in the park, the man I wish I'd gotten a chance to know stopping to help us down the subway stairs...each one bringing me joy and pain all mixed together. Our visits to New York mean so much to us, and I am thrilled to be celebrating his second birthday there in a couple of weeks. Magnolia Bakery, here we come!

Puttin' On The Ritz (and a winner!)

Thanks to random.org, comment number 12 was the winner of my impromptu giveaway! Girl Child, please email me your address so I can send you your goodies, one of which is a $15 gift certificate to Target, my own personal paradise!

I am working my way through visiting all of your blogs and loving it. I can't wait to put my kids to bed!

___________

Thanks for all of your help on the food front. Seth does see a feeding therapist, who is also kind of at a loss. =) The muscles in his cheeks/mouth are strong and he is totally capable of eating what he wants to. We're beginning to suspect a sensory issue but he doesn't completely fit that profile, either. Basically, he's picky and wants what he wants! I make all of his food, so we can play around with texture a little more easily, so we'll see if that gets us anywhere!

In the meantime, I wanted to share with you all the food Seth has fallen in love with:

Ritz Crackers. He is IN LOVE with them,as you can tell from his expression in the next picture.

Too bad they're pretty much worthless as far as calories go, but I have to say, I'm just thrilled to see him excited about food!

As you'll also notice, his hair finally starting to grow back! Finally...in the sunlight, it's a reddish color...strawberry blond, I guess you would say. No clue where that came from...Not John's side of the family, that's for sure!

John's heading off to Vegas tonight for work...he might run into Mandy and Jack there! How cool would that be? While he's off standing on his feet for 8 hours a day at the convention center, The kids and I will be garage saling it up tomorrow at a friend's place, where all the proceeds are going towards Seth's surgery! She's been collecting yard sale donations from the families at Ava's school. Isn't that a cool idea? She's taking things people would most likely throw away and benefitting Seth with them...I am in awe of the way God works through people every day.

Assistance Needed!

First off, thanks to all of you who came out of lurkdom! What lovely comments...I hope I get to hear from you all more often! It usually takes me a few times of "meeting" someone through email or the comments before I tie everything together, so it was nice to see some of your comments and then remember who you were! Some of you comments were so moving to me I got chills! Now that you all have broken the ice and realized piping up isn't painful, I hope you do it more!

More on the giveaway in a bit...I have not yet declared a winner. 

___________________

On to the real reason for this post...Seth is having weight gain issues again. He'll be 8 months old on Tuesday. We have had weight issues in the past, but last time we went for a weight check he had gained 5 ounces in a week and we thought he was doing well. 

Today I took him in for his Synagis shot, our monthly splurge. Synagis is about as expensive as caviar. Luckily our insurance covers it! Anyway, he has to get a weight check before the shot and we found he was the same weight as last month. He has gained nothing in a month. 

We checked out his stats...actual was born age, he  at the 50th percentile for weight and has dropped to the 3rd. 

Adjusted age, he was born above the 97th percentile for weight and has dropped to the 50th. 

As far as height, he is above the 100th for both actual and adjusted ages.

My issue is not where he is at on the chart but the fact that he has dropped dramatically and it is not in character for our family. The other kids were born and stayed at/above 97th percentile consistently for both height and weight, and still are. I know kids can be different, but Seth is matching them for height, but falling way behind on weight. 

 My gut is saying that somethings going on, and even though he's not acting like he's starving, he's not totally content either. Problem is he will not eat off a spoon, will not eat runny/thin food (so no jarred baby food). He will not take a pacifier or bottle, although he used to take both fine. He loves to nurse, and wants everyone else's food. He nurses about every three hours during the day and does not act hungry between feedings. He nurses at 7, goes to bed, does a quick midnight feed, and gets up between 5-7 for his first nursing session. 

I'm kind of at my wits end. We placed an order at the pharmacy for something you sprinkle on food to make it have more calories? Can't remember the name. These are the things he will eat: sweet potato, baked potato, ritz crackers, gerber puffs. When I say he'll eat them I mean he'll eat maybe one tablespoon of them before he refuses any more. The food has to be thick, dry, and able to be fed to him without a spoon. 

Our therapist says the muscles in his mouth are fine, he chews and swallows fine, he just seems to have some aversion to eating, but not to food. He drools and makes a chewing motion when he watched other people eat. 

Anyone have ideas? 

I'm going to let your brilliant minds work while I assign some ticket numbers. 

Candid Shots

My friend Laura emailed me after school today. She was a parent assistant at the kids' school today, and she was in Ava'a classroom during her lunch. She had her camera with her, and she was snapping pictures of the Pre-K kids, when Ava beckoned her over and said "When you take a picture of someone when they're doing something, that's called a candid picture."

That Ava...she amazes me every day with her insight, her bright mind, and her servants heart. But when Laura emailed me to tell me about Ava teaching her a thing or two about candid shots (hee!), it made me think.

What are the candid pictures our kids, our spouses, our friends are getting of us every day?

I don't mean this literally, although if you have a professional photographer hanging out in your house just waiting to get that perfect portrait, I am jealous and want you to send them over when you're finished. I mean in every day life, in our days at home, at school, out and about, what are the candid shots getting stored in our loved one's memories?

For me, I hope they will have memories of all of us sprawled on the couch together like puppies, watching a movie, or laying on the trampoline looking at clouds. I hope they will remember me as a smiling Mama, one who will drop everything to play a game or do a puzzle. I hope my friends picture me as kind, that John thinks of me as loving.

Realistically, I know that this probably will not be the case...those are the 'keepers', the good shots taken from the larger pile. There are many other pictures, face down on the floor, of me looking upset or sad, spending time on the computer and brushing them off, or telling them "in a little while." The shot of me getting frustrated with Ava's reading instead of being patient...the time I told Jace that there was no time to play a game just because I knew he'd lose interest anyway. Times when I do nothing but complain to my friend, or times I don't take the time to listen to John. There are many moments where there is a clear choice and I don't always put them first. Those are the shredders, the candid shots I want to make sure no one remembers.

Sometimes it all comes down to that split second choice when we choose one thing over another. It seems like it doesn't matter, but to our kids or our husband or our spouse, that small thing they're looking for could have made their day. It is so easy for me to get stuck in my own head, my own selfishness, that I forget that until after feelings have already been hurt.

But I love my family...my husband and kids, my Mom, my friends who have become like family to me. I can't see my kids without falling in love with them all over again, every day. Our main goal in parenting these kids is to raise them up to be Godly people, and second to that, we want them to feel loved, to know that we've taken every second of parenting, even the hard parts (and oh, they're a coming), and counted it all joy. I want my mom and my friends to know what blessings they are to me. I want John to know that he is loved and respected.

I want to reflect those things in the candid moments in life, those split seconds in life that seem like nothing but can be the memory that stands out above the rest.

What candid shots do your loved ones have of you?

Cowpokes

It's late and I'm just getting home! I can't WAIT to tell you all about our amazing day, but in the meantime, check these out!

Our New Normal

I ran into a friend at church the other night as she was getting everything ready for a MOPS meeting the next morning. She and I had served on the steering committee for a while...I was the coordinator for two years. I hadn't seen her since I pulled Jace out of the 1 year old preschool class that her daughter also attended because I was going on bedrest during my pregnancy with Eli.

Anyway, her daugher poked her head around the corner and stared at me, and I though she looked like a kid I knew, so I followed her around the corner, and there was my friend. We chit chatted for a minute and she introduced me to another member of the steering committee, then she asked how things were going for us. 

I stood there for a moment, racking my brain to remember the last time I saw her (Now I remember...I was newly pregnant with Eli and we were standing in the parking lot talking about Ava's lost lovey that she'd made her). My brain wasn't working very quickly, and my mouth started talking before my mind could catch up. 

"Well, Ava and Jace are great, and we...we had another baby, but he died. And then, we had another baby, and he can't hear, and he's upstairs."

Blank stare from my friend and most especially from the poor girl I'd never met. 

"Wow...you've been through a lot since the last time I saw you!" She exclaimed, bravely trying to save the conversation. Luckily someone asked about Seth and I was able to steer the conversation into what was going on with him, but I was still blushing bright red on the inside because of how obtusely I had spoken. 

Two years ago, I had a pretty typical, normal life, for all intents and purposes. Yes, we had made the choice to have our kids insanely close together, but we were loving it, and we were thrilled about adding a third child to our family. Aside from being on bedrest, my life had been pretty much normal. Parents that loved me...family that was fun and affectionate. My dad died when I was young, but truthfully, I've never remembered much about him, and my mom bent over backwards to make my life comfortable and enjoyable, and she succeeded. I went to school, I worked at a job I loved, I got married young(ish...I was legal), and I got a lot of sense knocked into me the day Ava was born and I'll forever be grateful for it. But our lives were still normal. Jace's two week NICU stay had been the worst we'd gone through, and we didn't even understand how sick he actually was, so that didn't even resonate like it could have. 

We were just a normal family with a normal, if hectic life, until that morning in the hospital when I saw Eli was gone. We were just typical until the moment he was born and he neglected to take that breath he looked poised to take. Then we were suddenly and completely trasnported to a completely different life. 

John and I had gone through tough times, but never before had we been completely unable to see where the other was coming from. But after Eli was born, all I wanted to do was remember him, and all John seemed to want to do was forget. It took him weeks to call him Eli and not "the baby." It took him weeks to want to talk about him at all. On our first trip to NYC, we spent hours one day with the kids at a Borders in midtown. I read a book about grief and loss, and he read Harry Potter. When we returned home, I spent hours in Eli's nursery, laying on the bottom bunk, reading the stacks of cards we were receiving every day in the mail. He never wanted to step through the door. 

It was the hardest thing we have ever gone though, dealing with the fact that we were grieving in completely opposite ways. I can totally and completely understand how and why couples split up after the death of a child. You get angry, and the easiest person to take it out on is the person closeset to you. I felt so much guilt over Eli's death...I would tell John all the ways I felt I contributed to his death, wishing and hoping for someone to tell me it was ok, that they loved me, and instead he got angry with me for even letting myself think it was my fault. He was loving me, but not in the way I craved, and every time he tried to come to me with his issues, I shot them down without a thought because I couldn't and didn't understand where he was coming from in the least. He would come upon me crying and as why, and I would immediately turn on him and say "How can you ask my why? It's always the same thing!"

It's been a long two years of ups and downs...and downs, and downs, sometimes to the point where I have wondered if we would ever get back to being the happy, carefree couple we once were. And I've come to terms with the fact that it probably won't happen...that we are both irrevocably changed because of Eli, that he has changed each of us to the very core of our being. Some changes I wish had not happened, and some of them are huge blessings. Either way, good or bad, they're there....this is our new normal, and we have learned to love each other through, because of, and in spite of our new selves. I know without a doubt that if I were not the conscientious, tenacious, proactive mother I have become because of Eli, I would not be eqiupped to be the mother that Seth needs to thrive with his challenges. If John was not the hard working, repsonsible, slightly over protective dad who, if need be, puts providing for his famly higher on his list of priorities than enjoying them that he's become since Eli, we would without a doubt be out on the street today. 

That God, look at him. Doing the best for us, even in times of terrible trial. We may not be carefree anymore, but we are joyful. I will count it all joy, even if it is a solemn joy. How blessed we are to be given this opportunity to minister to others on the front lines of life, as it were, in the trenches of hospital waiting rooms and therapy offices, where there are other parents holding on by a thread just like we were, wondering how they can adjust to the new normal of their lives. It's a simple secret...they can't. He CAN! God and God alone can bring us through the darkest night, the deepest grief. If we can share that with one person, it's all worth it. 

Now I'm off to the Rodeo tomorrow. The latest update I got this afternoon was that God is working in Mighty ways to make this an awesome event for Seth and for Christ, and believe me, I'll be back here tomorrow night to tell you all about it!

Kind of a widget

So, my plan to tell you all about a cool gadget I use every week has failed utterly. Sorry! =) But today we made a trip to the Audiologist (Hi, Erin!!) to have new earmolds made, and I thought maybe I'd show you what goes into getting Seth sound! John loves this one show...he'll watch How It's Made over and over and it doesn't even matter what it is...he always wants to buy it after he sees how it's made. Without fail. He's never gotten to see how Seth's earmolds are made...he'll probably want some of his own after he sees this!

See, we love Seth's hearing aids. They take him from a profoundly deaf kid to one who can hear a lot of environmental sounds and even a few speech sounds. He still doesn't hear enough to learn to listen and speak (That will come later, with the cochlear implant), but they make a huge difference in our every day life, stimulate his auditory nerve, and they're also too cute!

Here is picture of Seth in his hearing aids:

The earmold, the part I'm talking about today, is made specifically to fit Seth's ear. The earmold has to be well fitting both to prevent feedback (like when you get too close to a microphone), and to help keep the hearing aid on Seth's ear. There is a microphone on the back of his hearing aid, and amplified sound travels through the tubes you see coming down over the tops of Seth's ears, through the earmold, and into his auditory canal.

When it's time for new earmolds, which is monthly with a young infant, and every 2-3 months with an older baby, we head on down to see our friend Erin. She is the best! She's the audiologist who diagnosed Seth.

After we visit and talk for little bit long time, Erin uses something that looks like a hot glue gun that's filled full of blue goop (it's cool, not hot), and she uses it to make an impression of Seth's ears. It's very wet and very gooey, and while we wait for it to set up, we talk some more.

The strings hanging down from Seth's ears are attached to tiny bits of foam that are keeping the goo from going too far down his ear canal. After everything is dry, Erin pulls out the impressions and we ship them off so that his actual molds can be made in the color of our choice. We usually do blue and green or blue and white. I would like to do glitter, but then I remember I have a baby boy.

This is what it looks like when we get his molds and attach them to his hearing aids...an exact copy of the inside of Seth's ear:

Ear molds do a good job of keeping hearing aid feedback down and of keeping them in Seth's ears. If they do happen to fall out, the bright colors of his molds and hearing aid make them easy to find. But what about when we're say, at Sea World or the petting zoo and an aid slips out? Not that I have ever momentarily lost a hearing aid at Sea World. Or the petting zoo. Ahem.

Well, when you're in a busy situation and you want to keep expensive hearing aids safe while still, you know, leaving them in your kid's ears, you need something extra. Here is the latest product I am in love with. (Many thanks to Jace for modeling while Seth was down for a nap) See that rubber ring around the midpoint of Seth's hearing aid in the above picture? Well, that's connected to a cord.

And that cord leads to a flat, round clamp that can be fastened to clothing or any pretty much anything fabric:

That way, when a hearing aid falls off (and oh, believe me, it will), this is what happens:

Pretty neat, huh? There are a few different companies that make these, but Phonak's is my favorite. Helps us enjoy our days out without crawling around in the dirt looking for hearing aids!

Well, it's March.

As February was winding down, I realized that sometime soon, it was bound to be March. That the calendar page would flip, and we would be in that month, whether I liked it or not. 

I was under the impression that I was fine with it. Aside from the few days last week when I was trying to track down Eli's death certificate, I have rallied well. I was throwing myself wholeheartedly into planning for Seth's benefit concert in April and, even sooner than, that, my big thing that starts next week (Hint...it involves alliteration). I was doing well!

And....then I woke up Sunday morning, heard the kids up and playing, Seth beginning to stir in his bassinet. I opened my eyes, considered the date, and promptly closed them again. I did not get up then, and I did not get up an hour later when Ava came in to say good morning. I just...slept. 

It wasn't restful sleep, though. It was the sleep of an avoider. It was the kind of sleep where you wake every so often to look at your phone to see how many hours you've managed to kill; how many hours you've been able to escape reality. 

Right after Seth was discharged from the hospital I slept like that a lot. I knew he couldn't hear, but we were still waiting for the official diagnosis. The morning I had the appointment for his full evaluation, I slept until the last moment possible, threw on clothes, and headed out with him. While I didn't know it for sure, I think I had a pretty good idea that I would come home from that appointment with a different life than I left with. 

I spent this date, two years ago, in the hospital, IVs of magnesium sulfate running through my veins. My lively, active baby was trying his hardest to get out, and the doctors were trying their best to stop him. I was in between 31 and 32 weeks. If only we'd all known that he would had a better shot just being born early. If only I'd known that all those pills, the IVs and the strict bedrest would not pay off the way I hoped...I would have begged them to let him be born and take his chances. At least he would have had a shot. 

But I didn't, couldn't know. So I started out March on bedrest in the hospital, staring at a painting of a baby laying on his mother's chest as they rocked in a hammock, wondering if Eli would look like him. I spent the days listening to Eli's heart rolic along smoothly. He never had one single deceleration or irregularity. In the 160's, all day long, all night long. I spaced my day out with my boring, diabetic meals, thinking for hours about what tasteless sugar free dessert I would order with my next meal. I tested my bloodsugar seven times a day. I looked forward to the times Ava and Jace would come visit, and once they were there, slightly uncomfortable, afraid of all the tubes and wired, I looked forward to them leaving and going back to their regular life at home with my mom. Just a few more weeks, and we'd be home free. I just had to make it to 35 weeks and they'd let me deliver. I was already 5 cm dialated. 

They sent me home from the hospital the day I was 33 weeks. I spent the next two weeks home on bedrest, just waiting for the 35 week mark. I went into labor again twice, the last time when I was 34 weeks 6 days. The nurse said she had to give me terbutaline...I was 24 hours too early. She gave me 6 shots of terb throughout the night, then they sent me home. I was so tired, too tired to fight it, to question anything. 

I was finally 35 weeks. I felt like shouting for joy. I saw Eli on an ultrasound, kicking, doing practice breaths. My doctor smiled at me and said "His non stress test is perfect! You're free and clear! I know it's been hard, but it's worth it!"

I went home, and by late that night, I was in labor. In the early morning my water broke, and I took a shower. Eli kicked, on the left side of my stomach, under my right hand. We left, stopped to get the nurses special donuts, and drove five minutes to the hospital. 

He was gone. As soon as the nurses put the monitors on, I knew. I have never heard nothingness echo so loudly. I didn't even need the image of him, so unnaturally still, on the ultrasound machine they brought up. It was over. I couldn't wrap my brain around it, and no one would say the words. They offered to give us time, and I remember shouting "Time for what? You have to tell me!" Not even my doctor would say it, make it real. Finally I said "Just tell me he's dead. Someone has to say it." The doctor said "Well, he's not alive."

I hate March. What a useless month. All that work, all that waiting, for nothing. 

(Yes, I know that was a melodramatic entry. I'm in a melodramatic mood tonight.)