My friend Dina visited a museum with her family recently and she snapped a pic of an awesome poster that explains how we hear. (Click on it to see a larger, readable version.) Pretty cool!

Isn't it amazing how our bodies work? It is just unfathomable to me that this could all just happen randomly. God put a lot of thought into how we hear, just like I know he put a lot of thought into affecting Seth's hearing so that he could touch us and all of you like he has. What a blessing it is for us to be on this ride!

Running Behind

First off, thank you all for your kind thoughts and comments about the video. I am very happy with how it turned out, and so thankful it is over and I don't have to do it again! To those of you who have asked if you could post the video on your own blog/facebook/myspace/fill in the blank, the anwer is YES! Please do, we want to get Seth's story out to as many people as possible!

And just so it's clear, I do recognize that my children's calling may just be "Used Car Salesman." Honestly, I didn't have anything to do with that part of the video, but aren't they cute? Ava regularly talks ME into buying bracelets from her.

One of our old youth group kids (I call him old because he's in college now =P) has started a Facebook group for Seth. You can find it by searching for "Let Seth Hear" in the search bar. Come join it! Thanks, Valera!

____________________________

I didn't post yesterday because our ENTIRE day was taken up with doctors. We had an appointment in downtown Tampa, which is pretty near an hour away from us.We left a little after 10 am for an 11:30 appointment. John and I were on our way there when they called and told us the doctor was running two hours behind, and if we wanted to reschedule, we'd have to wait two weeks. So we ended up waiting it out. I stopped at the post office, shipped some bracelets, wandered around a used bookstore for a while, then we headed in.

The appointment went fine, but they said that Seth needed an MRI, and we could go right over to the MRI place that afternoon. It was 3 pm by this point, and my mom had been watching the kids all day. John had already taken off his "real" job and was due to show up at his second job at 4:30, which, conveniently, was when we were scheduled at another facility for the MRI.

He managed to get the go ahead to go into work late after a LOT of finagling, and we headed across town to the MRI facility. When we got there, Seth was STARVING, as they'd told us not to feed him so that he could be sedated. The nurse came out and told us that they don't normally sedate babies in the afternoon.

John and I stared at her. I think we were both starting to fall apart after being driving/waiting/doctoring for 6 hours. She said she needed to check with the on call doc to see if he was ok with sedating.

We waited 20 minutes.

He wasn't ok with it.

So her suggestion, since we were already there, was to go ahead with the MRI without sedation. I was skeptical, and she was, too. They have to lay completely still, and it's hard for some adults even to do.

I went ahead and nursed him, then swaddled him INSANELY tightly, and we headed into the MRI room. He got outfitted in earplus (Haha!), a velcro doohickey tying him down tothe table, and a bunch of foam things to keep his head straight. It would have freaked me out, but he seemed cool with it.

They slid him back into the chute, and started the MRI. I was able to stay with him and kind of love on his legs to try to keep him still and calm. It was SO loud! I had earplugs in and it still hurt my ears. There was a little mirror set up so I could see Seth's face, and as the magnets circled around and clanged like crazy, the point at which a lot of babies would freak, he....

Burst out lauging.

He cracked up through about two cycles of the machine, then he promptly fell asleep and allowed them to get perfect images. The tech was amazed, and told us to head out to the waiting room and he'd bring the cd of images out. John and I were beyond amazed by Seth and thrilled that he hadn't needed to be sedated...he does so badly waking up that I was thrilled to have avoided it. I breathed a big sigh of relief.

The tech came out and sat down, right next to me. Why was he sitting down? John was late for work and we needed to go!

There was no cd in his hand. He started talking, and his first word was "Unfortunately,"

That's never good. It turned out that while burning the cd, he'd accidentally deleted all the good images instead of copying them to the cd. Our choice was this: Come back on Tuesday (and find someone to pick kids up from school), sedate him, and do it all over) or try to repeat it.

We opted to repeat it then as we were already there, and once again, Seth came through. We sprinted out of their, our cd of images in hand. We sped home, stopping only to get McDonalds for the kids to make up for being gone all day.

What time did we get home?

7:40 PM. Insane. One appointment, one MRI, almost 10 hours. By the end of it all, we were so exhausted and frustrated we were both ready to sleep for days...except that John still had to go to work. I was lazy enough for both of us, though, and after putting the kids to bed, I did not get off the couch again.

I am watching through my fingers.

Some time ago, I mentioned that we were working on a short film/video to tell Seth's story. I was confused...video seemed dated, short film seemed pretentious. What to call it? Video? Short film? Dvd? Tape?

Truthfully, I don't care what you call it...but I think I'm going to call it DONE!

After way too many weeks/months, this little baby is yours for the viewing. It is a true labor of love, consisting of my dear mother's arranging, my writing, our bestie Tommy's shooting and editing, his beautiful wife Mara's child wrangling and patience with her husbands perfectonism, and God's blessing on the whole shebang.

I present you our little (big) video. It's a big story, after all. Take ten minutes out of your insanely busy schedule and get (more) acquianted with us. Love me through my strange sounding voice and facial tic, please. I swear I had no idea they existed until I saw this footage.

My Calling

When I was in college, I had no idea what I wanted to do with my life. 


 I met John when I interviewed him for a job, and he told me that very day that we would get married. I thought he was crazy, loco, and did my best to avoid him, but he was tenacious. He didn't care that my high school boyfriend had given me a train load of baggage... in his head, it didn't really matter that I was reticent. We were going to be together. 


It took a month before I caved. We went on our first date to Red Lobster, and that, as they say, was that. Not that we didn't have our ups and downs, but we've basically been together ever since. When I called my mom to tell her about him, I told her he was the kindest guy I'd met, and that was true. He would (and still does!) bend over backward for anyone, anywhere. About two weeks after we'd started dating, I had to move out of my apartment and into another, and he did it all, singlehandedly, while I was at work one day. Not long after that, my mom flew into the airport to visit me and I couldn't get out of the store, so he drove 2 1/2 hours to pick her up, even though he'd never met her, and he made conversation with his girlfriends mom the whole ride home. He went out in the middle of the night to wait in line for the newest Harry Potter book. He was attentive, sweet, and a great guitar player...is it any wonder that before I knew it, we were eloping while on vacation in Florida?

When I got pregnant, it scared us both to death. We were 21. What the crap was I supposed to do with a baby? John and I were both retail workers AND college students...we worked insane hours, and liked it that way. What if I didn't like the baby? What if the baby didn't like me? What if I read the wrong books, not enough books, too many books, and screwed the baby up? My mom lived across the country from me.  I was pregnant, and I was a mess. No one I knew was having babies...while John and I knew we wanted babies theoretically, in practice it freaked us right out. We had only known each other a couple years, and been married an even shorter time. We were just beginning to get used to living together, after having spent over a year at colleges hours away from one another. Something had to give.


We moved to Florida 5 years ago, in the spring of 2004. I went from being a student in college and the store manager of an extremely popular and busy store in the mall with 80+ employees to being on my own, all day every day, pregnant and terrified of what exactly would be coming out of my stomach on September 11, my due date. Would it be a girl as fickle as me? A boy as absentminded as John? A hermaphrodite (I tend to focus on ridiculous fears)? What would the baby look like? I wasn't even sure I wanted kids. I was pretty certain I didn't want kids this way...me shuttled down to Florida on modified bedrest, living with my mom so she could take care of me while John finished working at his job packed up our apartment in Indiana to join me.




It was a long summer. I was on my own, thinking and eating, eating and thinking, then, without fail, throwing up what I ate. I gained a total of 15 pounds. I missed my friends, I missed my life, and no matter how much I talked, John could not grasp the concept of growing a life inside your body...I couldn't really, and it was happening to me. 


I was drifting, feeling completely without ties in the world. I had friends, I had John, I had my mom, but I was lost. I had always been okay at things...never great. I was never coordinated enough to be the most athletic, never witty enough to be the funniest, never well studied enough to be the most informed or deepest. I coasted through high school and college, bored out of my mind and unwilling to work hard, happy to get the minimum grade necessary to pass. I was lazy. I wasn't positive what the point of life was. What was I even here for? I knew it wasn't to work 18 hour days for a clothing store, or go to school for the rest of my life.


The day I was due to be induced, we stopped at McDonalds on our way into the hospital, for our last pre baby meal. When we arrived at the hospital, they hooked me up to the monitors and found that I was already contracting, unbeknownst to me. The nurse said it to me like it was an accomplishment...I was doing something right, I could tell. 


Eight hours later, Avelyn Monet was born. As I was pushing, John almost passed out, even though he was standing as far away from the danger zone as possible. He perched gingerly on the bedside table, studiously looking anywhere but where the baby was heading on out. She was born after only ten minutes of pushing, and when the nurse offered her to me, caked in vernix, I asked them to please clean her up first. While they were doing that, they all exclaimed about how efficiently I'd pushed her out, how quickly, especially considering I was a first timer. I had done something right, again. Even before they handed her to me, I began to feel a warm feeling welling up inside me. Even though I didn't know what I was doing, I was doing it right. 


As they handed her to me and John stood, whispering in my ear, telling me how well I'd done, it hit me. 


This was it. She was it. My reason, my calling, the point of it all. I felt grounded and connected in a way I'd never felt before. I had a calling, to raise this little girl up to be a good person, to hug her when she was sad and kiss her boos and teach her to go the right way. There was a point to it all!


When John held her for the first time, I could tell he felt it too. She was our reason, pulling us together, pushing us toward God and our Faith in a way nothing else ever had. A reason to believe. 


Ava turned 4 1/2 yesterday (I'm a dork...I love half birthdays), and in those years she has never stopped being that light, that reason to us. As a baby, she just drew us to her, strengthened our union in our love for her. As a toddler, she made us laugh each and every day. And now, as she finishes her last year of preschool before she heads off to big bad kindergarten, she challenges us in ways I never expected. She is extremely sensitive...she mirrors the mood of the room effortlessly, doing her best to keep everyone on an even keel,  and she has a stronger faith in God than many adults I've seen. There is not a day that goes by that she doesn't astound me with her innate knowledge of right and wrong, of God's love for all of us. 


I wasn't ready for her, but she was the best thing that has ever happened to me. She has challenged me to grow and think in ways I never though possible. She has inspired John and I to transform ourselves from a couple who loves each other and God to a couple who loves God and each other. She changed me from a person who had no real calling to a person who has the most important calling there is...that of being a mother, and, finally, of finding what I am really good at. 


I love you, Baby Girl. 

What about you? What's your calling?

A Heavy Day

Last night, I was online ordering the kids birth certificates because I was supposed to turn Ava's in at the beginning of the school year and I didn't. That's the disorganization rearing it's ugly head. I got her birth certificate once, but it's disappeared into the ether.

Anyway, as I was filling out the forms, I saw a link I've never seen before. It was a link to request a Certificate of Birth resulting in Stillbirth. That's a mouthful, but the jist of it is that it's basically a birth certificate for Eli.

A Birth Certificate. For Eli. That I was told I couldn't get.

After he was born, I asked about a Birth Certificate, and they said it would not be available for me, as he died before he was born. I was told that I didn't live in California, and therefore was out of luck.

It wasn't true.

In 2006, a law was passed that stated that parents of stillborn babies born after the 20th week of gestation were entitled to a certificate of birth for their children. The hospital, coroner, and funeral home are all supposed to inform parents of that right.

No one told us.

It males me mad.

I have spent nearly two years feeling like he somehow didn't count because no one recorded his birth. It's such a small thing, but having that piece of paper would have validated me and my feelings beyond anything I can imagine. I felt like he didn't really exist, because there was no piece of paper telling me he did.

Now I know that he and I are both entitled to a record of his birth. Problem is, they need his death certificate to issue his birth certificate. That seems ironic, huh? Of course, keeping rack of my son's death certificate was never high on my list of priorites. Looking at that thing depressed me more than I can express...second only to looking at the disc of metal that went into the crematory with him. That depresses me more. That makes me want to throw up.

I digress. In any case, I've got to find it, or pay vital statistics to find it. Then I can apply for his birth certificate.

Then I will feel like he was actually here. In a hundred years, if a genealogist is studying our family for some strange reason, Eli with be there, right along with the rest of us. The will see that he lived. They will see that he counted.

Feels good.

Future Basketball Star

Look at Jace...he can slam dunk already! Can you say "Full Ride to College!"? I figure with having more than the average number of kids, we need to start them early and get them to be sports prodigies asap. They have to get a higher education somehow, right? Atta Boy!

Technical Mumbo Jumbo

On Wednesday, John and I headed down to the Children's Hospital in a nearby City to visit one of our favorite Audiologists. It had been a couple of months since he'd been in the booth, and since he has this tricky thing called Auditory Neuropathy , we have to do frequent hearing rechecks to see where he's at.

I've never really explained Auditory Neuropathy here, because, well, truthfully, it's a very confusing disorder that not many people understand. But I've received emails from a few other mom's of AN kids who have tracked me down from the approximately 10 words I have said about Auditory Neuropathy with questions, and I figure...you guys are smart. Let's talk about it.

Seth was only recently officially diagnosed with AN. I'm not going to go into all the scientific explanations of what it is, because we'd be here all night, and truthfully, it's a relatively new diagnosis and there are only a few experts on it in the first place. But here is the absolute best layman's explanation of Auditory Neuropathy/Dys-synchrony. It's from a book called Choices in Deafness . If you have a child with hearing loss, it is a must have book. MUST HAVE, I tell you. It is an amazing introduction into both different types of hearing loss and several different educational options.

In the first paragraph of their chapter on AN, they describe the disorder this way:

Have you ever tried to tune into a distant radio station, but you just can't pick up the signal properly? You know it's there- in between the static, you might make out the occasional word or phrase. But with the sound going in and out, you can't tell what the DJ  is talking about. Turning up the volume on your radio makes the sound louder, but no less distorted. Playing with the bass and treble controls doesn't help either. If a clear signal isn't reaching your radio, you're to hear mostly noise, rather than speech.

That's essentially the same problem a child with Auditory Neuropathy faces- his ear picks up the sound waves, but the signals are distorted before they reach his brain.

What does that mean for Seth? Well, it means that he has "good" hearing days and "bad" hearing days. There are days when he functions just like a profoundly deaf kid and never responds to anything at all. There are days when he whips his head around to sounds he should not be able to hear at all. The part of AN that is really rough, though, is this. Even when he is having a good hearing day, the sounds he is hearing don't sound like words or language, they sound like static or white noise.

Because Seth does not have a "traditional" form of hearing loss (only about 1% of babies born have some form of hearing loss, and of those, 10% have AN. That doesn't leave a lot of kids to compare to ), we have to keep very close tabs on his language and his residual hearing.

So Wednesday, we headed back to re-evaluate his hearing and check out how his hearing aids are working for him. Two months ago, his aids were giving him almost no benefit. This time around, he was more cooperative and his audiogram showed that with his hearing aids in, he was responding to sounds in the severe hearing loss range. While I was pretty impressed by that, it is very hard for a prelingually deaf baby to learn to speak when they can only hear sounds louder than 60dB.

I'll be honest here. Seth is pretty responsive at home, one on one. I was thinking I might see an improvement in his booth test without his aids in. But he's still testing as a profoundly deaf baby. He was responding to sounds in the 90-120 dB range, and profound hearing loss is classified as anything louder than 90dB. So we're still on track. His aids are helping, but not enough. The only way to replace the "bad" signal Seth is getting is to create a "good" signal with a cochlear implant.

We've been on an implant track for a long time, but the AN diagnosis threw us for a loop, and it's taken a while to readjust our expectations. Now we have a deaf baby who can hear us, sometimes. It's a very surreal experience, I have to tell you. There have been many times I've been on my knees, praying to God, and I've said "Please, can we go back to when he was 'just' deaf?" Fact is, there is nothing that can freak you out more than when your baby who is supposed to hear nothing turns his head when you speak. I was a mess on Wednesday morning, afraid that the results would be mixed or ambiguous, that we would need to spend months waiting for more testing to be positive he needed the implants. There is no doubt in my mind that Seth offering us such a clear, profound audiogram is a God thing. Sometimes, when we most need clarity, he gives it to us, and I am so thankful for that! He works in mysterious ways sometimes, but every once in a while he offers us big flashing signs, and for me this was one of them.

So John and I and the rest of Seth's team were satisfied that between his audiogram and the hearing aid trial he is completing, CI's are still the way to go, and we are submitting for insurance approval.

Now that's a whole 'nother bag of worms!

Dear Seth

Dear Seth,

You are seven months old, and the light of all of our lives. Not a day goes by that I don't have to  pinch myself because I can't believe you are really here and really ours! When I was pregnant with you, I never in a million years thought I would get to bring you home.

I am not the only one who is in love with you...in the past few weeks you and your brother Jace have really started to bond. I was driving in the van the other day and Jace was telling a story with silly faces and gestures, and out of nowhere I heard something that I didn't know I'd ever hear...you, giggling at your brother's story. You were watching him and he was making you laugh. I almost lost it right there. This is Jace's first experience with a little brother...he never got a chance to meet your big brother Eli, even though he talks about him all the time. 

We can't forget about your big sister Ava, though. She is a great big sister. She has taken it upon herself to be "in charge" of watching you when you sleep. She doesn't really approve of the fact that when you nap I will leave the room and work on house stuff, and I will often find her parked next to your bassinet (which we are still shoving you into), playing her Leapster and keeping an eye on you. 

You are so blessed to have the brothers and sister you have! I think you already know that, though. As soon as they walk through the door, you smile and wave your arms at them wildly. You don't have a whole lot of muscle tone in your arms and shoulders yet, so you have learned the best chance you have a hitting your target is to flail your arms around enthusiastically and indiscriminately. It works, although you also smack yourself in the face regularly. It reminds me of when I was a kid and my cousin would grab hold of my wrist, wave my arm in my face and yell "Stop hitting yourself!" Yes, make note. Older cousins can be mean.

At seven months, you are finally rolling over consistently and you can finally sit in the Bumbo seat! You are learning to work your ab muscles and sit up when pushing off toys. Thank goodness for Physical Therapy! Speaking of therapy, your speech therapist is AMAZING. You love her and you wave your arms in the air (see the pattern), and reach out for her. Speech is one of your favorite parts of the week. The other day you were babbling wildly and when you decided she wasn't paying enough attention to you, you frowned seriously and smacked her in the shoe. 

You still acompany me to work on Saturdays, and all of my families remember you and want to love on you when I am helping them choose and install their carseats. You are a great model and you have single handedly sold many baby carriers and slings, strollers, and carseats. You should have asked for commission!

You are the most joyful baby I've ever been around. There's nothing and no one you won't smile for, and there are several Mama's I know lining their baby girls up to marry you. I'm making you wait to pick a girl, though...I want to keep you all to myself for now! You are a little ray of sunshine.

I love you, little boy. You will never know how much joy and healing you have brought to my heart.  I know I might lose track of that every now and again when the pressure of all your therapies, audiology, GI, cardiology, running your fundraiser, preparing for your surgery, and being a wife, and mother to all three (four) of you get to feel like to much. But at the end of the day, when I fall into bed and listen to you breathing in your bassinet next to me, I know that this is nothing but a season, and in a few years I will miss these precious days. 

Happy seven months, beautiful boy. I love you. 

Love, Mama

Seth, and other news

Wow, I am two days late posting for Seth's 7 month birthday. That's what happens when your baby decides to spike a 105 degree fever out of nowhere on you. Thanks for the emails...we are alive. Generally, if I don't post for longer than usual, I will twitter with the reason why, so check the left sidebar or follow me on twitter if it worries you when I don't make an appearance. =)

We just spent two hours in Urgent Care, which was not fun. They wanted to do a white cell count and apparently all his veins are still a mess from the NICU. They finally got a blood sample on the 5th try. Poor baby was feeling so bad that even when they were digging around for a vein, all he did was whine quietly. No screaming at all. After all of that we are home. Seth is currently breathing about 70 breaths per minute and his his heartrate is running at about 170 (resting), which we are hoping will come down as his fever does. Prayer would help, I'm sure!

In some good news, we had a weight check today, and Seth GAINED! He went from 17 lb 2 oz last week to 17 lb 8 oz this week! 5 ounces! I'll take it! This means that he is getting enough from me to grow appropriately and I can shelve the formula discussion, at least for now. Yay!

We had Seth back in the soundbooth to do some more testing for his hearing loss. After the latest results (hearing loss ranging from 90-120 dB or so) we are officially submitting everything to the insurance company for approval for his surgery in MAY. The insurance company doesn't have to say yes to a surgery date in MAY because the federal guideline is 12 months, which would be July. But we firmly believe as does his surgeon that implanting at 10 months is appropriate and important, so I would love prayers for the insurance company to come back with a YES even though it is not policy. God is bigger than the Ins. Co! Other companies have approved surgeries prior to 12 months, so it has been done.

Are any of you good at coming up with catchy titles for things? If so, please email me! I am working on a BIG BIG project for next month and I am coming up empty in regards to a name for it. I need help!

Bouncing Baby Boy!

UPDATE:  The vast majority of you were right! You guys are so smart! Seth is beginning to sit on his own for milliseconds at a time! I have very good timing with the camera.=)  What you didn't see is him rolling backwards immediately after this picture was taken. Oops! Hopefully he'll repeat this tomorrow morning in PT so he can get credit. 

Bible Study (Beth Moore's Esther!) took up my afternoon and Youth Group took up my evening, but an actual post is coming at some point soon. =)

A real post is in the works, but in the meantime, anyone notice anything new and exciting about this picture? Tell me tell me! 

Organization, or the lack thereof.

I am very organized, efficient, and punctual.

.......

Hang on, I'm just waiting for my bff Kara to stop laughing.

......

Done, K?

......

OK, just a minute more.

Alright. I'm not organized, punctual, or efficient.. But I mean to be! I always mean to be on time places, but I'm not. I mean to keep the house organized, but I don't. I buy lots of organizational things, but they never seem to work the same way they do in the store. To be honest, life with me is a huge fly by the seat of your pants ride to who knows where. I like to think my friends look at it as being a part of my quirky charm.

Or, you know, just put up with it because they love me through it.

My husband, John, is also not organized, punctual, or efficient.

Do you see how this could be a bad combination? Every school morning is spent with us yelling across the house at each other "You're supposed to leave with him in ten minutes!" "Yeah, you were supposed to leave with her five minutes ago!" as both of the big kids run around searching for lost socks and hairbrushes and we pack lunches at the last possible second and Seth gets buckled into his carseat in last night's pajamas.

So, knowing this about us, it won't be surprising to you what happened at my house today.

Seth has physical therapy early in the morning on Mondays, and my mom was watching the big kids at home while I took him. It didn't take long to learn that nothing go done in therapy with a 31/2 and 4 1/2 year old there. On my way back from therapy, John called me and told me that the cable guy was coming to the house.

I was confused, as I'm sure you can understand, because we don't actually have cable. We cancelled it a few months ago, and apparently when John called a few weeks back to talk to them about returning the equipment, they offered him a some deal of the century. Sidenote about John: all you have to do is tell him something is a good deal and he'll bend over backwards to buy it. I have no idea how he makes it as a salesman. He put them off and said that he needed to talk to me before he scheduled them to re-install.

He forgot to tell me about that entire conversation until today. The cable company apparently thought when he didn't call back that he wanted them to come out, so he had a voicemail this morning saying that the cable guy would be out today.

As he was telling me all of this, I was picturing my trashed out house. I looked up and saw a cable van in front of me. There's no way, right? But they turned on my street. I sped around them, pulled into the driveway, jumped out, and waved at the cable guy while still talking to John on the phone. "Hi! Hi! My husband didn't tell me you were coming at all, and I just found out and I don't even know what you're installing!"

He was very friendly, sooo friendly, and even though I wanted to say "No, we don't need cable, we're doing fine!" I have been getting tired of having to sit very still in one spot to get the internet, and I am completely incapable of saying no to people, pretty much, especially when they're standing right in front of me. So instead of saying no, I just held up one finger, said "Just give me one minute!" before I sprinted into the house. Before I could make it inside, Jace came racing out the front door, wearing a Thomas the Tank Engine pajama top and....of course...nothing on the bottom.He was leaping and jumping around like crazy, and so was everything else, if you know what I mean.  At all. The cable guy almost fell out of his truck laughing. I almost died of embarrassment and chased Jace inside.

I flew into my bedroom, shoving things under the bed and into the closet (our desktop computer is in the bedroom, and our bedroom is the room I always shove all the extra stuff I can't find a place for). It will be really hard to do our taxes, because I distinctly remember shoving our w-2s into some stack and shoving that stack into the closet, which is kind of like no-man's land. Before I knew it, the cable guy was standing there next to me and I was ready to melt into the floor. He must be used to trashed rooms though, because his reaction to the mess was much less than his reaction to Jace's lack of pants.

Before I knew it, it was all over and we had cable again. The kids were beyond excited, and immediately asked to watch Noggin, even though they never once whined about not having tv while it was gone. I'm not sure how I feel about it. I mean, I'm ok with it for now...A new Dancing with the Stars is about to start, and I do often fantasize about being on it, even though I am neither a dancer nor a star. But I don't think I would have reordered it if the cable guy had not shown up today. John totally owes me for blindsiding me with this!

I think we need someone to come hypnotize us and tweak our organizational skills. Do people do that? I definitely need that.

"Valentine's Day is for loving people."

Happy Valentine's Day from Avelyn Monet!

I had to recycle a picture from 2005 because I didn't get a cute one taken this year. =) So here is Ava at 6 months of age, on 2/14/05. As she told me, Valentine's Day is for loving people! So get on out there and love somebody today!

His Way

It's 12:03 am and I am sitting here rocking Seth. He's become completely spoiled and we will never be able to move him into a crib because he requires very vigorous rocking to fall asleep. It's a little disturbing. If I am trying to get him to fall asleep when he is not in something that rocks, I have to jiggle his whole body back and forth to trick him into thinking he's rocking.

Anyway. I'm rocking I'm thinking. I'm thinking I should apologize because this is going to be a serious one. Two in a row! What am I thinking? I hope you can forgive me...it's all weighing so heavy tonight. Anyway, I'm thinking. Jace got up tonight...woke up and crawled onto my lap as we were watching tv, cuddled up on my chest like a big 42 pound baby, his curls in a disheveled mop on his head. Seth was right next to him. Jace was making faces and Seth was laughing at him...one of their first true brotherly moments

I was thinking, as March looms...I am beginning to think that March is always going to loom for me...I am always going to cringe away from it, like when you're playing Operation and you try your hardest to pick out the body part with the tweezers without touching the metal edges, try your best to avoid that harsh BUZZ. Those edges are still raw for me, two years later, those tweezers BUZZING me all over, and what did Eli do to deserve to die, anyway?

Well, he did the same thing we all did. We all deserve death. We all deserve to die for the sins we're born with. We just happen to be blessed enough to have Jesus, who took our place, who died for us all.His grace and mercy have set us all free, as long as we believe. Because he died, I don't have to wonder where Eli is. Because He died, I know that one day, I am going to be in heaven, and I am going to see a tall, lean man with black curls walking towards me and I am going to know, then, there he is! There is my boy. Look how he grew!

There are things I'll never experience with Eli. I will never watch him learn to walk, to run, to talk. I will never teach him to read. I will never watch him play soccer or go on his first date. I will never help him choose a corsage for the girl he takes to prom. These are things I lost when he died. I did not just lose the newborn. I lost the toddler, the 5 year old, the youth, and the man.

But what an amazing thing to go straight from the womb to God's arms. He never had to witness anything bad, anything sad or scary. He never had to see me lose my temper. He never got turned down for a job, and he never got picked last for a team. Instead, he is in heaven, learned and wise, worshiping at the feet of God. What a blessed life, huh? He is not impatient for me, or sad and missing me. Rather, he is content and fulfilled. But what joy when I finally get to meet him! I imagine it will be so exciting that all the why's that plague me now will disappear, just cease to matter. All this anger, bitterness and sadness, it just won't be a big deal anymore.

But I can't and I won't wish my life away, or the lives of the kids I have here. So I will have to wait until it's my time to meet him again. And that's ok. Because boy, do I have my hands full with the kids I've got down here! Every day is just another test of my faith, how much I can let go and let God, and some days I fail miserably, and other's I get a solid "C". But I'm getting there. Losing Eli was not my choice...I fought it kicking and screaming. But being the parent of a child who has died is my reality, whether I chose it or not. It is part of my waking and sleeping, and every moment in between. I can never look at my stairsteps without noticing the missing stair. Never forget what it's like. Always wonder if it'll happen again. Never, ever forget, because I don't want to .

And while I'm not forgetting Eli, I will remember to remember Ava, and Jace, and Seth, and love them through all the ups and downs of life. To take the extra time to read one more book, to jump on the trampoline with them, even if I pee my pants in the process. To remember that they are worth celebrating, too.

Or, you know, I'll do all those things on the days they aren't driving me insane. So, I'll do it every once in a while.

For our family, this is the season of Seth and Eli. We are still mourning Eli, and Seth needs so much right now. After this season of planning for and waiting on this surgery that will give him the chance to hear, then I will be able to thank my two older kids for being so patient, for loving us and their brothers enough to understand why we let them watch a lot of tv for a few years, to thank them for never once showing an ounce of jealousy or resentment. The amount of compassion they have learned from their brothers' is truly remarkable, and I know that they are going to be better people for knowing both Eli and Seth.

March is looming. I am not ready, and I am so ready. But this year, I want to give back. To let families know they're not alone, whether they have a baby that died or they have a baby that is challenging them to embrace a new normal, both of which can feel like the worst thing in the world, depending on the day. Nothing has come in my timing. Not a single one of my kids. Not Seth. Not Ava. Not Jace. Not Eli. I tried to plan and my plans failed. Why? Because it is His plan that matters! They all came in His timing, and His timing is perfect.

We are squarely in New Normal territory. We meant to go somewhere else, as the poem says. But instead, here we are, right where God always meant us to be. Where every one of our days is numbered according to His plan, not ours. I thought I was in control, and I got thrown off my own track, but I am on His, and I am thanking him for every second of this ride.

For Eli

"For I know the plans I have for you" DECLARES the LORD. "Plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

If you're here from MckMama's blog, thanks for visiting! Please feel free to take some time and read our story, posted in the nav bar above, or click on Eli's name in my post categories to learn more about him.

Since I'm sure many of you are coming because of MckMama's menton of Eli, I wanted to introduce you to our son. He was born on March 28th, 2007, and there is not a day that goes by that I do not miss him and wish he was here with me.

We don't know why Eli died...he was a completely healthy baby who died mere hours before he was born. If I had gotten to the hospital moments sooner, chances are he would be here today.My biggest goal since his death is to glorify God through his memory and leave a lasting legacy for him. If you have gone through or are going through anything similar, please email me! If I have learned anything in the almost two years since Eli's death, it is that we need each other. The grief of losing a child is so great, you cannot hold it all inside.

What I do know is that he is just as important, as life changing, to us, as any one of our other children, and that no matter what happens, he is and was a person. He had likes and dislikes, he might have been funny like my son Jace or cuddly like my daughter Ava. We'll just never know this side of heaven. But the biggest thing is that God is bigger than Eli's loss. He knew that he was going to take Eli, just like he knew that he was going to give Stellan back. I don't understand it, but that's not my job. My job is to do the best with what I've been given, and although I don't always do that, I try my best, and that's what He asks of us. I miss Eli so much that it's like a physical ache in my chest. Even in the midst of that aching, I know that people and lives have been changed because of our son, and I thank and praise God every day for the 8 months I got with him.

We were blessed to get time. Not enough time, but more time that lots of people get. Time to marvel over his huge feet. Time to wash his curly black hair. Time to kiss him all over his face and body, just as we would over any other baby. Time to sing him all the lullabies I could remember. Eli changed our life, and I don't ever want to go back the the way it was, the oblivious way we lived like we were entitled to a healthy child. No one is entitled to anything, and I will never take one second of my beautiful, blessed life for granted again.

Thanks for letting us share Eli with you, and please consider sticking around...we have something very big planned for his birthday next month and I can't wait to tell you all about it!

Trust Issues

 Seth has some issues, sure. He was early. He can't hear. He has sucky muscle tone and he is developmentally delayed. But he's a happy baby! He's healthy, overall. I have worked hard to keep him that way. I have exclusively nursed him for almost seven months, my kids aren't allowed to touch him becaust they are germy time bombs of sickness, and I work hard to keep strangers from squeezing his cheeks. That last one is hard to do. 

We've been having food issues. Serious, baby screaming, Mama crying food issues. He's getting bigger and older and he needs additional calories from food...he's hungry. It's time for solids. He's having none of it, with the exception of a marshmallow, a twizzler, and a spoonful of tomato soup. He doesn't want solids. As a result, he is starving all of the time. He is waking up two and three times a night to nurse (He has been sleeping through the night since three months, so that's big). 

It's getting ugly. 

I have been trying to up my supply. It's not working. It might be working a bit, but his needs have increased exponentially. I figure I'm tired, but it's worth it to avoid formula. (Disclaimer: I don't think formula is bad, per se, but in this situation with a preemie with a weak immune system, breastmilk is superior to formula. Plus, in my own experience, starting formula has led to the end of the breastfeeding relationship with both of the older kids.) I figured I could deal with lack of sleep if it meant he was ngetting the calories he needed to grow (If you haven't yet figured it out, I like to play the martyr). 

That dream of myself smiling modestly and saying "It was all worth it to continue exclusively breastfeeding him! I can sleep when I'm dead, afterall." was shattered today, when I found out that he has either lost weight or failed to gain any in the past week. We can't really tell which as he was weighed on two different scales, so there is bound to be some difference. Bottom line is he is not gaining as he should be, and I feel like the biggest failure in the word. First, my uterus failed him by evicting him before he was ready. Now, my body is failing to make enough milk for him to thrive. 

Now, to be fair, he's not cooperating, either. If he would just EAT SOLIDS ALREADY, we could make up some of his calories that way and avoid supplementing with formula. But he's not, so I am stuck. I thought his doctor would push for shoving a bottle in his mouth immediately, but she is willing to wait it out. Although he is in the 26th percentile for weight and the 91st for height (unadjusted), he doesn't LOOK as thin as that sounds, and he is happy and peeing, so he's not dehydrated. She's reticent to start him on formula while RSV season is still going strong. So we've got a week, then we go back for a weigh in. 

Part of me wishes she'd forced the formula on me. I feel so much pressure to perform right now it's ridiculous. I can feel my mammary glands cowering from stage fright. They don't like to perform for an audience! They've broken my trust. 

Seriously. Seriously. Seriously. I need this kid to start eating solids and give me a break. Give me a break...hey! Wonder if he'll eat a Kit Kat Bar?

Food.

I love food. I should rephrase that. I love meals. There is nothing that can cheer me up more than going out for  dinner. You can always tell how much fast food I've been eating lately by how depressed I am. Not that it's not great to have junky food every so often, but it's the experience of it all, the good food. Sitting down, relaxing and talking while someone else brings you things.

In high school, I can remember every meal out with my friends. I can remember milestones of John's and my dating relationship by the restaurants we were in when they happened. First date? Red Lobster. second date where I heard embarassing childhood stories? Rally's, on the trunk of my convertible. First time meeting his family? A frightening Chinese joint. Late night breakfasts after work? IHOP, of course. I could eat a lot...I had the appetite of a high school boy, as my mom always said.

We were in college, and I had discretionary income, as I was a manager of a retail store in the mall. I didn't cook, and I was never home anyway, so whenever John was in town, we went out to eat. For the record, I always paid, because I'm the one who had money. John was in college on a scholarship and he never had extra money. I didn't mind paying because I would have rather paid for the both of us than sit in his dorm and eat Ramen Noodles with him.

After we got married, we were still so into food. Good food! Finding the best restaurants, the best crabcakes. The best pasta. When we moved to Florida and there was no Texas Roadhouse in the area, I literally cried and we started sampling all the steak houses in the city, trying to find a substitute. When we couldn't we drove to Orlando just to eat there. In Las Vegas, we made a trip specifically to eat at my favorite taco place, Del Taco. I am almost never happier than when I am eating out. Restaurants are a happy place to me. I have no idea why I am this way, but I am.

So you can imagine the shock I went through when I was pregnant with Eli and I found out at 26 weeks I had gestational diabetes.

There was almost nothing in a restaurant I could eat. Every single time we went out to eat my blood sugar sky rocketed! It was depressing. Even when it was a food choice that should have been fine, many times just the way it was cooked would affect the meals carb counts.

It was one of the most depressing times ever. I was on bedrest, diabetic, and I couldn't go out to eat or even get CARRY OUT? I love dessert. It almost killed me. I still remember the day I was admitted to the hospital at 30 weeks for pre term labor. As they were hooking up the magnesium sulfate, they ordered me lunch and someone forgot to use the diabetic menu. The chicken strips and fries that showed up in front of me may have been the best meal I'd ever had.

I made it through that pregnancy and controlled the GD completely with diet. It severely limited what I could eat. I remember when we were in NYC a few days after Eli died, I kept forgetting I could eat what I wanted. It was one of the most bittersweet moments...I could eat whatever carbs, sugar, fats I felt like eating. I wasn't pregnant, and I wasn't nursing. Finally, I could eat, but I didn't want to. I lived on the roasted almonds they sold on every street corner. They were literally all I could eat.

It was months before I had an appetite again. So long, that if you ask my friends who live in Florida, they'll tell you I don't eat much. They can't remember a time when I did. If you ask my friends from high school and college, they'll tell you I never stopped eating. Truthfully, it was probably not until I was pregnant with Seth that food started to sound appealing again. Then, from the very beginning, I wanted steak. All the time, with tons of seasoning.

This time, I was only 18 weeks along when I found out I had Gestational Diabetes. But this time, no matter how much I limited my choices, no matter how closely I followed the nutritionists guidelines, I could not get my blood sugars to be low enough. I went on insulin, and gave myself a shot 2 or 3 times a day. I tested my blood sugar 7 times a day. I went in for deep muscle injections for pre term labor once a week. I was a pin cushion. I had to carry smarties (Thanks Windy!) in my bag all the time because if I didn't eat enough, my blood sugar would plummet thanks to the insulin. I sometimes woke up sweating, my blood sugar in the 40's.
I was consumed by food, because I could never keep track of what I was eating. I was distracted by my kids, by my worries, by my confidence that Seth would die, too. Food was at the bottom of the list, but I could not stop thinking about it.

My doctor was convinced that since I had GD repeatedly and with such an early onset that I would probably not "snap out of it." after my pregnancy. Thank God I did, and my A1C's are back to normal! But still, my appetite has been off since Seth was born, very similarly to the way it was after Eli's death. It is a struggle to me to eat what I know that I need to eat to continue taking care of myself and Seth. What used to be one of my favorite things is now something I forget to do and avoid if possible. I would feel hungry, but as soon as I began to eat I would forget why I wanted what I had made/ordered. The food, no matter what it was, tasted sickening to me.

The other night when we went out to eat with our neighbor, I was starving. I ordered a meal and an extra side. I finished every bite, and we ordered dessert. It was amazing.

It sounds so silly, but I hope that this means things are getting better.

When Seth Attacks

Seth is a delightful kid to be around. But he is beginning to be very interested in the things around him. Food, cell phones, other people's hair and clothing. He has a very tight grip and razor sharp fingernails. John was playing with him the other night and was trying to get some video of how vocal Seth is, and somewhere in the midst of it all, Seth captured the phone in his hot little hands. 

Observe, and please forgive the grainy quality. Hearing him giggle is worth it, believe me!

When Seth Attacks from Ellyn McCall on Vimeo.

Not Me! Monday

Head on over to MckMama's!

Ba-da ba-da-da-da
Ba-da ba-da-da-da
Ba-da ba-da-da-da

Monday, monday (ba-da ba-da-da-da)
So good to me (ba-da ba-da-da-da)
Monday mornin, I love to start the day with Not Me's.. 
Oh monday mornin, monday mornin couldnt guarantee (ba-da ba-da-da-da)
That I would be first on MckMama's Mr. Link-eee. .

Monday, monday, cant trust that day
Monday, monday, sometimes I get swept away
Oh monday mornin you gave me no warnin of what time it would be
 I've been  up waiting to post my link since half past three

Every other day (every other day), every other day
Every other day of the week is fine, yeah
But whenever monday comes, but whenever monday comes
A-you can find me cryin cuz I'm sleep deprived

Monday, monday (ba-da ba-da-da-da)
Free therapy (ba-da ba-da-da-da)
Monday mornin, love to see that it's not just me
On monday mornin, monday mornin we can agree
That our kids (don't) drive us all a little batty

Every other day, every other day
Every other day of the week is fine, yeah
But whenever monday comes, but whenever monday comes
You can find me laughing so hard I cry

Monday, monday (ba-da ba-da-da-da)
Listen to me (ba-da ba-da-da-da)
Monday mornin, I love to start off reading Not Me's
Oh monday mornin, monday mornin I feel so carefree (ba-da ba-da-da-da)
That I am not the only one who's going crazy

Every other day, every other day
Every other day of the week is fine, yeah
But whenever monday comes, but whenever monday comes
You can find me (not) lyin all of the time

Monday, monday (ba-da ba-da-da-da)
Cant trust that day (ba-da ba-da-da-da)
Monday, monday (ba-da ba-da-da-da)
Sometimes MckMama posts on Sunday (ba-da ba-da-da-da)
Whoa, monday, monday, wont go away (ba-da ba-da-da-da)
Not Me Monday, its here to stay (ba-da ba-da-da-da)
Oh monday, monday (ba-da ba-da-da-da)
Oh monday, monday (ba-da ba-da-da-da)

Wow, yet another week has gone by! That is insane. Also insane is that I (did not) just spend half an hour singing the above song in an nonexistent key to John and begging him without actually coming right out and asking to tell me it was good in a passive agressive, needy way that I have perfected.

So Seth has been having eating issues. He is getting referred for feeding therapy, and I am not happy about it. I mean, I am not not happy about it. Whatever way of writing that sentence means that I am frankly annoyed at the thought of therapy, that's what I meant. 

Two things happened to me this week that would have freaked me right out if Seth was my first kid instead of my fourth. One, He snatched a marshmallow out of a kid's hand and proceeded to lick it desperately, as if that marshmallow was the one thing he'd been waiting for his whole life. Two, he grabbed a piece of licorice right out of Ava's hand in 2.2 seconds and had it in his mouth before any of us could do anything but stare. 

When I witnessed both of these occurences, I did not watch him thoughtfully for a moment, considering whether high fructose corn syrup and sugar could possibly fill the void left by his refusal to eat any healthy food I have offered him. I was not more than a little miffed that the kid had refused my organic, homemade cereal, avacado, pears, apples, and bananas, but was slavering like a three year old on a sugar high over a piece of licorice. 

After I took the offending items away, Seth did not haul off and smack me in the head with his entire flaily arm. I did not excitedly call my mom over to witness his efforts, remarking on the extension of his arm and how we'd been working on that in therapy. I did not write the encounter down in his baby book as a marker of one of his milestones.

Speaking of milestones, Seth did not hit another one this morning. We have been dealing with a bit of a supply/demand problem, as he is currenly seeming to demand a bit more than I am supplying. This morning, he did not feel the need to let me know that I wasn't measuring up by taking a big bite with his sharp teeth while nursing. I did not scream like a girl. John did not think it was hilarious.

That song wore me out, guys. I think I've given you all I've got for this week. Happy Not Me's!

They're Animals!

I have a sneaking suspicion my son may be a raccoon.

He spent his entire meal

dipping pieces of food into the water.

Then eating said pieces of food.

All gone!

He's very strange. 

Steve the Fox

Our lovely deaf mentor was over this morning and since all the kids were actually paying attention to her, she decided to tell them a story. Seth was awake and paying lots of attention, Ava and Jace were actually being attentive and sitting quietly, and she sat and told them the story of Steve the fox. 

This is an illustration of why we never get to the end of stories in our house. 

DISCLAIMER: This story was told in ASL, so it was much better before I tried to type it out. =)

"Once upon a time there was a fox named Steve."

Steve? Why was his name Steve? Who named him Steve?

"Steve saw a bottle of milk sitting out on someone's porch and he drank it and fell asleep. An old woman came out and saw that Steve had drank all of her milk and she was upset."

Did she spank him? He should have gotten a spanking for that, right?

"Steve woke up and apologized for drinking the old woman's milk, but he didn't have any money to pay her back, so he promised to replace her milk."

So did he get a spanking or what?

"Steve walked and walked and walked, wondering how he could find milk to replace the milk he drank. Finally, he came upon a cow, who was looking for grass to eat. He asked the cow if he could have some milk, and the cow said yes, if only Steve would find him some grass to eat first."

Can I be the cow? I want to be the cow. If I'm the cow, I should take off my pants, because cow's do NOT wear clothes. 

"Steve agreed and went looking for grass. Finally, he found a patch of brown grass. He explained to the grass how he drank the old woman's milk and needed to replace it, and that he had found a cow who would give him milk if Steve brought him grass to eat. The grass agreed, on the condition that steve would water the grass to make it green so that the cow could eat it. "

The grass is ok with the cow eating it? That's crazy! I'm the grass, ok? I'm the grass, and I am NOT ok with a cow eating me! 

You have to be! I'm the cow and I am going to eat you whether you like it or not!

"Steve went searching for water to pour onto the grass so that it would become green. After he walked for a long time, he found a stream and told the stream his story. The stream offered him water, but Steve had nothing to carry the water in. He had to go find a jug."

Foxes don't even have hands. He can't carry a jug! How will he even get it to the grass? And how will he get the grass to the cow when the grass doesn't want to be eaten and how will he get the milk to the woman? This is taking so long she's probably not even THIRSTY anymore! 

I'm thirsty. We're going to get some milk. 

The story originaly went through several other animals and people to get everything Steve needed to get the old woman her milk. But as you can see, my kids are so insanely easy to distract that the main thing they took from the story was wanting milk. Weirdos. 

My daughter, the teenager

Ava is 4 and a half years old. Most of the time, she's very sweet and loving. Not right now, of course...at the moment, I can hear her arguing with her brother from across the house, her voice permeated with an annoying edge of certainty that has to come from me.

The girl thinks she knows everything. It's unbelievable, really, how she can tell you with complete confidence that she has never before and will never eat avacado, when I know for certain that it was her first food and she loved it. She has this little head flip and "Mo-om!" intonation that can drive me crazy in ten seconds flat.

So maybe that's why our discipleship group last night flipped me right out. The upperclass girls were meeting with the 8th grade girls and we were discussing authority. Who has authority in our lives? Do we give authority to people that shouldn't have it? Do we avoid obeying those in our lives who should have authority over us?

It sparked interesting conversation. Two things that jumped out of the discussion right into my lap were these:
Almost every girl in the room thought her parents were lame, and many of them valued the opinion of their friends/boyfriends more than that of their parents.

Maybe I was like that when I was younger. I don't think I was, but I can't rule it out completely. But it scared me to death to think that my little girl, who I pour my life into every day in order to teach her about Faith and glorifying God, could, in just a few years, turn into a girl that has very little use for me.

I don't want her to think I'm lame! But I know a lot of parents of our girls, and their parents aren't lame! They're all pretty cool! I'm scared. It looks like, no matter what I do, I am going to be irrelevant in the eyes of my daughter at some point in her life. I mean, that's ok. It hurts my ego, and I want to be the cool mom, of course, but she's not in charge, and if I have to be "uncool" to teach her the correct values, to guide her faith, to teach her morals, I am ready to embrace that perceived lameness in the hopes that one day she'll realize the value of being her parent and not her friend.

It scares me to death. It's part of the reason I was so worried about having a girl. There's something about girls...they can just hurt you more. I love my boys to death and they are the apple of my eye, but they are boys, and while they have their challenges, I don't foresee this issue with them. Of course, I could be completely wrong and they could all think I'm boring, lame, and irrelevant at some point in time. Let's go for a three-fer!

Or...I know, I know...

Jesus, could you please come back here before my kids get to that age, while they still adore me? That would be great. I'm sure you already know this, but I think my time might be running out. Ava is 4 going on 14.