Do Somethin'! Let's take this outside! You can't call me funny looking!
I won't! You're burning up! You're on fire. A funny looking baby fire.
Do Somethin'!
I won't!
Why not?
Because I want to eat my dinner and you're just a baby anyway! It's not nice to do something to babies!
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Oh, how I wish I could tell you that this argument, which was started by my 3 year old, was between him and Ava. But...that would be a lie. The cold, ugly truth is that my childish 26 year old husband is responsible for every single remark in italics. I typed them all verbatim onto my laptop as they were said. I only wish I could say that I took poetic license, but I didn't.
It's. All. True.
This is my life. My husband chooses to engage and argue with a three year old. Isn't the cardinal rule "Do NOT engage!" It's what I try to live by. This is how it would have gone if it had been me and Jace:
You're a baby!
OK. If I'm a baby I'd better stop making you dinner, because babies can't use the stove.
Oh. You're not a baby. Thanks for dinner, Mama. You're the prettiest Mama ever.*
*I may have added the part about being the prettiest. I gotta get my ego boost somewhere, even if it's from an imaginary conversation!
So yesterday. I was in the throes of screaming baby fit #42. The older kids were running around me in circles as if I were a pole in a pole bending competition. They were loud. They were dirty from playing outside,and they had watched every movie we own. Twice.
Every. Single. Time. I got Seth to calm down enough to sleep, they would whip by him so fast that the air would visibly shimmer around him, and he would startle and start screaming his head off again. I was ready to die.
My mom was there, helping, but she was trying to get something done, and I was trying to stay alive. So I decided to send them to their room for rest time. That basically means they can do whatever they want as long as I don't hear them and they stay in their room. Note those last few words...they stay IN THEIR ROOM.
Finally, I got Seth settled with a strange combination of cadenced Bum Patting, Pacifier Wiggling, and Extreme Swaddling. I sighed in relief, and tried to find a way to move away from Seth without waking him.
In the meantime, I heard it. The voice my mom never, ever uses on my kids because she's their favorite and they're always good for her.
"You guys are in SO MUCH TROUBLE! There is no way you're avoiding a spanking for this one!"
I did a double take. If my MOM is talking about spankings, they must have killed something. Or someone. She is the most anti spanking person I have ever met in my life, ever. She never even spanked me, and I was a bad kid. Well, she spanked me once, but it's because I begged her and told her all the other kids were getting them.
I was kind of afraid to get up. But how bad could it be? They probably just pulled the curtains off the wall again, like they do every week when they're standing on the windowsill naked (facing the road! We really have to work on the whole moral innocence thing).
I made it off the bed, and headed towards the kids room which is at the opposite side of the house from my room. The furthest reaches, if you will, of our 1500 square foot house. It's so far away, that many times I can't really hear what's going on in there.
When I stepped through the gate in the doorway of the room, my first thought was that someone had pee'd (peed? I don't know. We say teetee). on the floor. The carpet was...squelchy...underfoot. I yelled and tried to hop off the wet spot...
Onto a veritable puddle of standing water on their plush carpet.
My mom had the shop vac out and literally after two swipes, she had to go empty the bin. They had flooded about 1/3 of the room.
As they watched me take stock of everything, they stood frozen on their beds, waiting for me to go insane. Ava was absentmindedly reeling off possible punishments. "No trampoline, no toys, or no loveys. No food. No food for two weeks. No kisses from Daddy."
Jace was standing with one hand on his hip, being pre-emptively defiant.
Truthfully, I didn't even know what to do. What kids flood their own bedroom? Seriously. I sat down next to Ava and asked her what they had been doing. She told me that her stuffed animals needed a bath, so they gave them one. Apparently they used the cups we use to rinse their hair in the bathtub and made about 50 trips from their bathroom to get their stuffed animals sufficiently clean.
What the crap is that?!?!?! Seriously.
So, they went to bed at 4. I thought it would be the worst punishment ever. Of course it wasn't, and they just took a nap. I wish someone would send me to bed at four. Maybe I should flood my room.
Well, we made it through the day. Barely. Seth did great this morning, and although his durgery got off to a late start it went well and was over in about 20 minutes. Longest 20 minutes ever, I say!
After the surgery he had some trouble coming out of the anesthesia. He pretty much spent the entire day sleeping or screaming, and every single time he calmed down, he would cough or spit up, which would cause him to start screaming all over again. The nurses thought it might be from the pressure change of getting the tubes in, and it was causing him a lot of discomfort.
He finally turned a corner this evening and is feeling good now. And by good I mean that he'll sit quietly and maybe crack a smile as long as no one thinks about setting him down. We're about to attempt putting him down to bed.
At least it's over! Here are some snapshots of our day.
Seth looks a little underwhelmed by our early wake up call. I can see the judgement in his eyes.
He's a trooper. I forgot to bring socks for him. I completely forgot about the hospital gown thing and thought he'd be in his sleeper. Besides, we do live in Florida and we don't believe in socks.
I had to hold him facing out, otherwise he'd go in for the kill, even through three layers of clothing. Kid was hungry!
Chillaxin with Daddy while waiting for the nurse to come take him away. That was the hardest part! We both teared up like big old babies when they took him. I am thinking we will need a LOT of distractions when it's time for his implant surgeries. They're LONG.
So in the midst of dealing with my screaming, freaking out baby, the older kids decided to take advantage of my distraction and go insane and do an insane, stupid thing. It is bad! Bad! SO bad. In fact, it was bad enough that they were sent to bed for the evening at 4 pm. Oh yeah. It was ugly. But that's another story for another day. Hopefully tomorrow!
We got the call today to be at the children's hospital downtown at 6:30 am tomorrow (Wednesday) for Seth's surgery to place the tubes in his ears. We should be there about four hours or so altogether, and it is a very minor surgery, but Seth is still my baby and I'm nervous! So if you could all keep us in your prayers I would greatly, greatly appreciate it!
Please pray that he wakes up quick and feels like this:
After you lose a baby, no matter whether you miscarried, lost your baby at birth, or lost them during infancy or childhood, it, basically, totally sucks. I know that's kind of crass wording, but in all we have gone through, I've yet to find something that hits the nail on the head more for me.
After Eli died, we read some books...we received a lot in the mail. I probably need to go back and read them again, because I have no real recollection of them in the haze that was my life at the time. But while I always knew where Eli was: heaven, I don't know if I would have been able to defend myself with scripture if someone had challenged me on that. Luckily, that never happened, and I've never wavered on that point...Eli is in heaven, happy and healthy and whole.
So when a reader (Thanks so much, Vanessa!) sent me a book recently, I picked it up, turned it over, and looked at the title. "Safe in the arms of God" by John MacArthur.
Well, yeah, I thought....of course he is!
But then as I was feeding Seth, I picked it and opened it, and I didn't put it back down again until I was finished.
I wanted to write about it because I know there are a lot of you who read here who have also lost babies, or had miscarriages, or lost a child. To me, this book, while not earth shattering, was comforting in a massive way to me. The book is scripturally based, and proves without a doubt, from many different biblical verses and references, God's heart for children. Finally, I found all the scriptures that had been floating around in my head but that I couldn't place or that I kept forgetting to go hunt for.
This book also speaks very strongly on the side of "personhood" for miscarried and aborted babies as well as full term infants and children who die, which I thought was awesome. It touches on several issues that have bugged me over the past couple of years, and lays scripture out right in the open so you can go to the source, so to speak. It also has some amazing testimonies from parents who have suffered loss.
It is definitely worth reading, if you have suffered a loss or even if you are trying to better understand the mindset of someone who has lost a child. I am so glad I didn't put it down!
Ahh, my oldest children. 12 months apart, they have the strangest relationship. Currently, they have shut themselves into my closet and they are fighting over who is in whose (whoms?) personal dark space. They fight like crasy, but they refuse to seperate. They can't sleep unless the other is in the same room, when I pick one up from school they must know where the other is, and I've caught them cuddling when they didn't think I was watching before. Of course, they also hit each other a lot. We're working on that.
It's been so cool having siblings close together...I love their age gap! It was so much easier on us than on a lot of our friends who had a 2 or 2 1/2 year age gap...Ava literally cannot remember life before Jace. Good thing, because with the housing market in Florida right now, they will be sharing a room until they move out!
Happy Saturday to everyone...we are off to the post office to mail a second batch of bracelets out. As yours start rolling in, please let us know! I have to get off the computer and close my ears now, because Ava and Jace are saying a secret pledge that I am not allowed to hear. It is TOP Secret!
My friend Chayil came over the other day to take some pictures of Seth. She is an awesome photographer and she was kind enough to donate her time and the photos she took to Seth's fundraiser! Here are a few she sent me.
This is going to be a short one, as we had youth group at our place tonight and the kids just left after we sat around telling silly video game stories for a while after we were done with our study, and I am tired! I'm too old to be staying up late, I tell you!
I do need some advice. Seth's GI doc wants him starting solids because his weight gain has slowed down quite a bit. Well, Seth is not getting on board. He's 6 months actual age, 4.5 months adjusted. He doesn't want anything to do with cereal. We've tried that several times, mixed with breastmilk. Tonight I tried avacado, because of the high calories. No go. He's not just having trouble eating, or dealing with a tongue thrust reflex, he is REFUSING to eat, period. I need to find something he'll eat, and I really don't want to add formula to up his calories. If anyone has a suggestion, PLEASE let me know! I make all the babies' food, so we don't do jarred food. I have tried both thin and thick consistencies, mixed with breast milk, etc. He is not having any of it. I am tired and out of ideas.
Now, onto a happier topic....these beautiful pictures!
A friend that I am very blessed to have took a hard look at me the other day. She looked at me, as I was rambling on and on about how overwhelmed I am with doctors and therapies and appointments and how it just all seems a bit much and that maybe I'm being punished for something. She looked at me, and she said "When it all gets to be too much, you just have to remember the basics."
I looked at her, my face totally blank, no idea where she was heading with that.
"The Basics?" I asked her.
She smiled and signed "Jesus Loves You." to me. (She's my good friend and my sign language teacher, by the way).
"Ellyn," She said, "The bottom line is that Jesus loves you. If you believed that, you'd understand that God isn't punishing you for anything. God loves you. He knows you better than anyone and he loves you and he is using you for a great purpose. We just don't know what it is yet."
Throughout our conversation, we kept circling back around to that. The basics. She will never know what a blessing she was to me that day...I have been in bad shape lately. Sometimes, I don't want to be refined. I don't want to be used for anyone's purposes but my own. I want Eli to be alive, and I want Seth to hear, and I want to have lots of money and get to go shopping every day.
But if each of those things were true, I would not be who I am. If Eli had not died, John and I would not have realized how ridiculously blessed our lives were. I would not have realized what an amazing church family we have. I would not take the time to be silly and laugh and play with the kids I have even if it means the house stays a mess because I know that this time with them is fleeting.
If Seth could hear, I would never have learned to take every single second to hold him and love on him and show him I love him in every tangible, tactile way. I would not have had the chance to meet all the wonderful people who have come into my life since Seth's diagnosis, the women who have become my go to gals for what to talk to and what to do, to call so that I can laugh or cry over what's happening. I have never before felt so instantly bonded to people like Andrea and Courtney, Sarah and Erin and many others who are on Team Seth, who have emailed or called just to tell me that Seth mattered to them.
If we had lots of money, I would never have learned what it feels like for groceries to show up on our doorstep, or, on a bad month, someone offering to cover Ava's tuition. It has taught me what a church family should be. A few years ago, we were on the other end, we helped and gave and I love being on that side. But being on that side does not humble you, and I know now, after all of this humbling, I will be able to be a truly selfless giver when it is our turn again.
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Man, look at me spin that stuff! Believe me, I don't always see the bright side.
On Sunday night, we had an all church worship night. The idea is that everyone comes...babies, kids, parents, teens, everyone. That means there's no childcare. John was working. I decided to go anyway, and I am so glad I did. The older kids immediately ran off with the neighbor kids, and Seth and I settled in for some worship, which is my absolute favorite thing ever. More than sermons, more than anything. Singing songs to praise God is when I feel the closest to him.
Since Eli died, I have been craving worship but pretty much unable to participate in it. Every week for months I would to to church, step into service, the band would start to play, I would start to sing...and I would completely break down and run out of church. It felt so hard to be praising God, telling him he could fix ANYTHING, when he didn't fix Eli and I didn't feel like he was fixing me.
After that had happened enough times, I stopped going into service. I volunteered instead, I was all over the place and always there but never in the service during worhsip. It was painful...I wanted to be able to sing praises more than anything, but they would not come out of my mouth. It was not until John started playing with the youth praise band that I started to enjoy worship again, and to be able to get through a few songs without completely losing it. Wednesday nights, in our youth room, I felt like I could finally sing.
It's gotten better for me. I can go to service, I can sing the praise songs. But all church worship is my favorite. People really let go and get into praising God, and I wanted that and needed it this week. Bad.
We sang tons of amazing songs, but the one that is still in my head is called "Healer" The lyrics are below. In the song, the lyrics praise God for walking through fire, healing disease, and being everything we need.
On the surface, the words annoy me. I mean, Eli wasn't healed, and I feel like I need him.
But in the song, it's different. There is a section that says that "Nothing is impossible for you...you hold my world in my hands."
I kind of lost it at that point. Through God, everything is possible. He holds each and every one of our little, tiny worlds in his hands. They are his to bless, his to bring pain or trial or joy. Nothing is impossible through God, and yet when I begged him to save my son, for some reason, his answer was No.
I don't get that. I still struggle with it, every day. But there is no doubt in my mind that even though he said no, it was still in his power to say yes. It is not my job to know or understand why. It's my job to remember the basics. He loves me. He does not cause me pain lightly. I am being fitted for a purpose, and although he said no, he never left me to deal with it alone.
He walked with me through fire these past two years. Losing my son, stepping out in faith and getting pregnant again even though all the doctors said that there was a good chance we could go through it all again, seeing Seth born alive and then watching yet again as they took him away, too. Watching him fight to live, then sitting, listening to the audiologist tell me that "He's not hearing."
Sometimes I feel like it's too much to live through. On the bad days, I am still in danger of being sucked under the surface and never coming up. But I keep coming back to the basics. Jesus loves me.
He proves it in the moments of pure, unadulterated joy when I am holding Seth and singing and he laughs joyfully, or when my kids tell me they love me unprompted. Seeing them growing and reaching for their own personal relationship with Christ. It makes it all worth it. I don't know what is going to happen in our family, I don't know if I'll ever be over losing Eli. I don't know if Seth will ever hear the way I want him to. But what I do know is that God is working in me, working in him, and hopefully working in everyone who reads this post.
This is my hundredth post, and I wanted it to be important, to touch someone who maybe has been craving God like I have, who needs that extra push. Take it. He is there, waiting for you. He never left. Just reach out.
The lyrics and the video of the song Healer are below...it has literally been in my head since Sunday night.
HEALER
You hold my every moment
You calm my raging seas
You walk with me through fire
And heal all my disease
I trust in You
I trust in You
I believe You're my Healer
I believe You are All I need
I believe You're my Portion
I believe You're more than enough for me
Jesus You're All I need
(More than enough for me)
Nothing is impossible for You
Nothing is impossible
Nothing is impossible for You
You hold my world in Your Hands
So, my plan for tonight's post was a video I made of Ava singing a song she "wrote". She has been "Writing and illustrating" (Her words) a lot of stuff lately, and she made up a song about the hours in a day and all the things she wanted to do.
BUT.
Vimeo is being silly and making me wait 110 minutes to post the video, so...I have to be flexible. I can be flexible! I can! I....think I can.
So instead, I'm going to tell you the tale of Seth's room. To really get it, you have to understand that when I was pregnant with Seth, I got this vision. It was a vision of what I wanted his room to look like. I wanted it to be calm and soothing, and not too cutesy. Lots of texture, but not busy.
Problem was, we hadn't planned on giving him a room of his own. But if you've known me any time at all, you know that when I get an idea, I MUST follow through. So Ava was kicked out of her room and into Jace's before she had time to turn around, and I began explaining my plans to John.
Of course, my vision was not simple. The flooring in the room just didn't fit my idea, and I didn't like the baseboards. So instead of just being happy with painting, I sweetly (Hah!) talked him into doing new flooring, new baseboards, paint, and a chair rail. It just wouldnt be a baby's room without a chair rail! But should the chair rail be on the wall just above the dresser, or should the dresser butt up against the chair rail? I knew if I made the wrong choice, ALL WOULD BE LOST.
It started out simply enough. I made him match the color exactly to a blue that was in my head. But I didn't want it to be blue everywhere, of course. Just on the top half. The bottom had to be this special tan that was unlike any tan that had ever existed before. I had it specially mixed. Then, after it was on the wall, we realized that it was the same color as our living room paint, which we still have 5 gallons of. Yeah, that was a little embarassing.
Then I found tile that was the right shade of brown. I even found caulk that matched! John was so patient while I spent an hour choosing caulk! He knew that there was a huge difference between off white and bone, let me TELL you. He and my mom laid the tile over a weekend and I didn't cry when they had to lay it straight instead of diagonally, the way it was in my vision. I am very understanding, and I don't get upset when things don't go my way. (Wow, apparently I'm channeling Not Me Monday a day early. lol)
So while he was working on the room, I started working on the artwork I saw in my head. I ended up finding animal shapes and frames I liked, then using different fabrics to matte the homeade "prints." I wanted to use fabric to make it more textured. I used burlap. Did you know burlap can give you something very similar to paper cuts? Well, it can. But it was worth it. It was part of the VISION!
John was painting. I was torn. Did I want the ceiling to be white, or did I want it to be blue to match the walls? I had a very specific idea in mind, and if I screwed it up, obviously life would be over.
I also fell in love with a certain rug and I couldn't live without it. Luckily, my mom came through and got it for my shower, which occurred just 5 days before Seth was born. I am pretty sure he waited to be born because he didn't want to enter his room before it was PERFECTION.
Just as the room was getting finished, I had a burst of inspiration. The baseboards and chair rail looked amazing! I knew just what would make it perfect. CROWN MOLDING! Nevermind that John had never installed crown molding before, I had. to. have. it. Even though it was late at night we were on the way to Home Depot. Most pregnant gals get craving for pickles and ice cream, but not me! I apparently crave expensive, complicated home remodels.
Poor John. By the end of it, I think he was ready to leave me.
Finally, the room was finished. Here it is, for your viewing enjoyment, Seth's safari/zoo/serenity room.
This is a shelf just about his changing table/dresser. The Seth frame on the top was made by my bestest friend from highschool, and the photo in the Little Rock Star frame is of Ava, me (and Eli) the day before he died. It's kind of like his last picture. There is also a tiny scrapbook of thoughts for Seth from my shower, and my baby shower invite up there. And, of course, a stethoscope! Everyone's got one of those at home, right?
Here is a shot of the artwork I made for the walls. And Seth's legs in the crib. Well, I mean, his whole body is in there, not just his legs. But his legs are sticking up. You'll notice there are no crib bumpers...SIDS risk! And you save a ton of money when you don't buy the bedding sets. We have a breathable bumper, but I won't put it in, because it doesn't match.
Here is the rug! I think it's supposed to be a zebra. Over on the right, you'll see what Jace calls it's penis, but I think it's where the head would be. Don't worry, it's synthetic. I wouldn't put a real zebra rug in my kids room! Unless I had a vision about it, then I might.
Seth's mini chair and the curtains. Also, you can see the corner where I shoved all the clutter so I could take pictures of his room. Oops!
Here's a shot of his dresser/changing table and shelving. Ava made that cross in preschool two years ago and it has been in each house we've lived in. Aren't those baskets awesome? I heart them. My friend Shelley got them for me, because she's very cool.
Gratuitous crown molding shot. Because John spent so much sweat and so many tears on this, it's the first thing we show people when they come to our house. We run to the baby's room and say "John did that all by himself! What a big boy he is!" OK, not really. But sort of. Also, you'll note the blue ceiling. Some people think it's tackly to paint the ceiling. I find it cozy.
This is kind of washed out, but it says "Let Him Sleep, for when wakes, he will move mountains." I found it on clearance at Target (I am in love with Target, btw), and I had to buy it even though it meant I had less money to feed my kids with that week.
My friend Tonya got Seth this Zebra. Notice his leg...that's Seth's hospital bracelet. What a tiny guy he was! Next to that is the hand made baby shower invite...it says "heaven sent" on it.
This, believe it or not, is my favorite thing in Seth's room. My best friend Mara made it for Seth. It is several scriptures that we relied heavily on throughout his pregnancy that are personalized with his name. How awesome is that? She rocks.
So there's his room. Blood, sweat, and tears, y'all. The tears were mine, the blood and the sweat were John's. Although he might have cried some about what a demanding wife he had. Luckily, he loves me, and he puts up with me with a smile.
Ready for the punchline?
That picture you saw of him in the crib? That was the first time he'd been in his room for longer than 30 seconds.
I think it's funny. John...well, his sense of humor is not as well developed as mine.
Six months ago today, at this very moment, I was laying in the hospital with my mom, John, and Ava, and two of my best friends, watching So You Think You Can Dance. I was in a ton of pain due to a non-working epidural and convinced that I was going to be 5 centimeters dialated for the rest of my life.
Little did I know, just over one hour later, at 10:35 PM, this baby boy would decide to grace us with his presence after only two pushes. He took his own sweet time to cry, and I can remember all of us, every person in the room waiting with bated breath, as Seth finally cried out. I think it may be the best sound I've ever heard.
That one cry set us all laughing and crying and I started to believe for the first time that I might be getting to bring a baby home. Of course, things took a turn for the worse very quickly, and my baby faced issue after issue.
That time in the NICU feels like it was both yesterday and a lifetime ago, and Seth has had plenty of issues even since he got to come home. We don't seem to go a week without something happening. But God has been there every step of the way, picking us up when we couldn't make it another step, strengthening us beyond our normal limits, giving us patience and perseverence to deal with Seth's many specialists and diagnoses. God has specially equipped us to parent this very special baby. It has been an awesome blessing to watch him grow...from that from critically ill preemie into this beautiful boy.
This has been the best 6 months of my life. Seeing Ava and Jace grow into thoughtful, kind siblings, seeing Seth grow healthier each day, finally having this baby come after his brothers death and begin to heal all of our old hurts. We will never stop missing Eli, we will love him right up until we see him again, but we can't tangibly love on him...we appreciate now how amazing it is to be able to love your baby, to kiss them each morning and night and every moment in between.
With Seth, we have learned what it is to feel blessed. Not that we weren't blessed before, because we were, by our finding one another and by Ava and Jace and Eli...but before loss, you don't feel as blessed by the good times...even though we shouldn't, we kind of expect things to go well. We were self centered and always thought "That will never happen to us." Well, things have happened to us now. Things don't always go the way we want and, it seems even more amazing when they do go right.
And man, have they ever gone right with our sweet baby boy, and to God be the glory! I know that even more awesome things are in store for Seth in the next 6 months!
First order of business: Thanks to everyone who has donated and ordered bracelets/wristbands! (If you can't tell, I am having a hard time committing to a title. Committing always was an issue of mine. They are being packed up and sent out tomorrow, so get ready to sport yours! If you guys take pictures of yourselves wearing Seth's bracelets, I'll put them in his baby book, and one day when he's a little more cognitively aware, he'll thank you.
Seriously, though, it has been a huge blessing to us that you all care about our baby boy and are helping to give him the chance to hear! As I was reading the notes in some of the donations, I was just bawling like a baby. It's a very special thing to feel so blessed after the past couple of years we've had.
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I've got a bad headache today and I was experiencing some shooting pains in my neck/ear/back of my head area. I get migraines all the time, so it's not a huge thing, but the kids and I decided to stick close to home today. John is off working all day long, and so I am on my own. I am also lazy, so it will not surprise you that I ordered pizza for lunch because I couldn't be bothered. I figured the kids could even eat it for two meals, if I supplemented with fruit and things like that.
Or not. I ate two pieces, and the kids ate the ENTIRE pizza. Now I have to think of something to make for dinner. The best laid plans...
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I am trying to get Seth's room organized today as he has a very fancy and special photoshoot Monday morning. A friend (and awesome photographer) from church offered to do photos of Seth for the fundraiser, and she likes to shoot where he'd be the most comfortable. I told her that he's only 6 months old and I think he'd be really comfortable posing in a nicer house than ours, and then passing it off like it really is our house, considering he's never actually slept in his own bedroom, but we're doing it here anyway. The best laid plans...
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Seth had some testing done yesterday that necessitated him being sedated. They described the medicine as super strong benadryl, and said that he'd be groggy for a few hours after the procedure.
HAH!
When they said "Groggy" I'm sure it was some special kind of nurse short hand for "your baby will go insane and sleep hard, wake up screaming, be inconsolable, then fall asleep again, as long as you never ever put him down. This cycle will repeat itself all day long. Then, when you finally fall asleep at midnight, he will wake up and demand to eat, even though he just finished eating. He will wake up about 20 more times in the night to eat, even though he has been sleeping through the night consistently for 3 months."
Yeah. I'm sure that's what they meant. For future reference, this sucks. I was praying a good carrier would appear on my doorstep in the midst of my 12 hour baby holding session yesterday, but it didn't happen, so I had to break down and beg a sweet mama on the FSOT board on the Baby Wearer to sell me hers and send it asap, even though she had already agreed to trade with someone else. I was desperate. Seth has gotten too heavy to be comfortably carried for long periods in a sling, and I hate my Bjorn with a passion. Seth has a surgery coming up in less than two weeks and if the sedation effects are at all similar, I will be praising God for the pretty Beco that Seth will be living in.
BTW, Thanks Melissa! Can't wait for my Beco!
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January is drawing to a close...(ok, not really, but I count in a weird way that means a month is basically over as soon as it begins). Before we know it, it will be February. That means it's basically March. Eli's second birthday is coming up and I can't seem to stop it from sneaking up on me all the time. I made some mention of his birthday the other day, and Ava said "Which birthday will it be?" I told her it will bs his second birthday, and her jaw just dropped.
"You mean Eli is ONE right now?" She exclaimed. "No one told me that! One is big! Just think of all the things he is doing!"
She was just so excited to realize that he has grown into a one year old, and she proceeded to tell me all the things that one year olds can do. They can walk, and play, and eat food. Most importantly, according to her, they can hug you and kiss you, and some one year olds can even say "I love you."
Seeing it through her eyes has made me realize it all over again, even though I thought I was hyper aware of his absence. I have missed so many milestones. First smile, first hug, first kiss, first word, even the first tantrum. He would be old enough now to climb into my lap and tell me he loves me. I would have a baby calling me "Mama" and not "Mom!" Some days, I wonder if I'll ever hear another baby call me Mama. When they told me Seth was deaf, that was one of my first thoughts, that I would never hear him call out to me and say my name.
I just miss my almost two year old with all of my might, and while I know that God is working in us, refining us every day, that Eli and Seth are being used by God to make us into people who can be Christ to others, and even more importantly bring Christ to others, it still doesn't mean that it doesn't really suck sometimes.
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Also, my leg still aches! What causes that? It can't be growing pains. I'm 26 years old. I hope I'm done growing. I'm tall enough already!
UPDATE: We are no longer fundraising for Seth. He received his implants in April of 2009. Thank you all for your donations and prayers!
You know you've seen them around and wished you could have them. They're very trendy, after all. But not everyone can pull this look off.
No, you're eyes are not deceiving you! It is the super special, limited edition Profoundly Seth wristband (or bracelet, we're not picky about labels).
They read "Let Him Hear!" (An excerpt from Matthew 11:15) on one side and have the website address on the other. They're a teal/medium blue/aqua-ey color that's pretty cool!
Our model would like us to state for the record that these bracelets are not for human consumption. They don't really taste that great. I mean, look at him. He obviously wishes he'd stopped after eating the third or fourth bracelet. Serious indigestion.
In all seriousness, most of you know why we've decided to offer these bracelets. (If you don't, please check out the "Why I'm writing" links on the left). Seth was diagnosed with a profound hearing loss shortly after birth, and has recently been diagnosed with Auditory Neuropathy. The only way for him to learn to listen and speak is with something called a cochlear implant, which will bypass the bad signal his brain is currently giving him and give him a clear signal so that he can learn to listen and speak.
Having neuropathy means that two implants (one in each ear) are very important for him to hear well, and our insurance only covers a portion of the surgery, and we have an insanely high deductible. Getting implants by (but optimally before) one year of age means that he has a very good chance of being "caught up" to his hearing peers by kindergarten and will be able to attend a mainstream school with few, if any, accomodations for his hearing loss. It will give him the chance to be independent and will open a lot of doors for him.
We don't have the luxury of waiting to give him this surgery, as it does not generally have as successful an outcome with older children.
After praying a lot about what we would do in order to get Seth this surgery, an awesome door opened for us in that one of the companies John works with donated us all of these bracelets, so that we could do a fundraiser for Seth. We wanted to do something where a lot of people could give a little to Seth, without making it a hardship for anyone.
We have had an amazing number of people want to help Seth get his chance to hear, so this seemed like a perfect solution for everyone! You get bracelets that can be conversation starters to spread the word about Seth, his story, and MUCH more importantly, how God has worked in our lives! Seth gets a fundraiser to get him headed toward surgery in May.
Seth and I are cozied up at my very favorite Borders this morning, on our fun appointment free day. As a bonus, this morning as I was rushing around after oversleeping, getting the kids ready to go to school, my next door neighbor, who also conveniently happens to be Ava's teacher, offered to take her to school for me. Score! It's cold out today!
So now Ava is off until 3, Jace is at his school til 1:30, and Seth is in my lap getting in the way of my keyboard and trying to chew on the computer cord. Nice! A little electric shock never hurt anyone, right? Right? Joking. I stopped him from chewing on the computer cord and now he's moved on the diaper bag strap.
Seth has really turned into a baby the past week or so, rather than a newborn. Yes, he stayed newbornish much longer than a lot of babies, but it's over now. He's stull super easy going, but he's not happy to chill out and watch any more...he wants to be part of the action!
This amazing doctor has agreed to consult on Seth's case and we are sitting at Borders, where I have a steady internet connection, waitingo to her what his opinion of Seth's condition is. You see, Seth has turned into a little bit of a medical mystery. He's still testing in the profound loss range, but he has also started to respond to sounds he shouldn't be able to hear. Then, the next day, he'll be completely unresponsive to a sound he could hear the day before. That, apparently is a hallmark of neuropathy...being really confusing. All of his doctors are shrugging, and saying "We're just along for the ride until Seth shows us what's going on!" But Seth and I know who's really going to show us what's going on, and I'm trying to be patient and let God make it clear. In the meantime, he is still in need of an implant, unless something else changes. Even though he's hearing sounds, he's not hearing well enough to discern speech.
So, we're in a wait and see pattern...just like always! I hate this part. =)
So due to his reflux, we're starting Seth on solids a little sooner than we had planned. My mom recorded his first meal on her Blackberry, and it is so much a typical night in our family that I had to post it, even though the quality is not great, it cracks me up.
Warning: It is long. Like, 10 minutes. But if you soldier through, you'll get to see an adorable smile at the end! Also, the background noise is what will really give you a glimpse into life at our house. =) And yes, Ava is experimenting with nudity.
So if you have some time to kill and you want to feel like you were really there for Seth's first solid meal, enjoy!
So, my four year old? You know, the cute one, the only girl, the one who is supposed to be with me in my old age when the boys have abandoned me for their wives? The one who curls up with me and says "Mama, I want you!"
I think she needs a little reprogramming, or I may need to sell her.
Her age is...not right. She may be 4 technically, but I fear she is approaching that age...you know, where all kids go crazy. 13...14...15...I had always planned on sending my kids to boarding school during those years. Do they have boarding school for kindergarteners?
First of all, she says "like" all the time. Like, a lot. It's all "It's like, well, like a little yellow but then there's like, a little red, and you know I was all like, screaming when the roller coaster went down that hill and it was like, crazy!" (Direct Quote).
Or:
"I have a great idea for crazy hair day, Mom. On one side, we'll, like, straighten it, and on the other side there'll be, like, curls, and then we'll spray glitter too. Ok Mom?"
Yeah. She calls me "Mom" now. Ridiculous.
Then, when I told her she needed to be in bed last night, she looked at me, cocked her head to the side, and said "Okay okay OKAY, MOM!"
As if that's not enough, I caught her air kissing Troy Bolton yesterday.
Maybe she doesn't realize she's only four. Maybe she needs a brain transplant. Maybe we need to get TV again so she has less time to think of weird things to say.
Me? My name is Ellyn.
. I love God, my kids, and my family. I also like to read, a lot. And shop. I am creative but not crafty. Also sarcastic, although I would prefer the term witty. I'm also a fan of texting. I'm a huge procrastinator, and I'm almost never on time. I'm doing my best to navigate my life with laughter and grace as it takes several unexpected twists and turns. I have 6 awesome kids.
. Dramatic. Theatric. Operatic. Wants to be an Archaeologist. Currently living life as a musical.
. All green, all the time. Very Brave. Official bug-killer in our house. Wants to be a Knight when he grows up.
Greatly loved, and so, so greatly missed, Eli would be . He was stillborn into our waiting arms and born ALIVE into the arms of our Savior.
Our answered prayer and a miracle in his own right, Seth is . He came early and his list of issues was long, but he has stormed through every difficulty with the grace of God. He was diagnosed as profoundly deaf as an infant, and he received bilateral cochlear implants at 8 months of age. After seeing the character of our son, we say he is PROFOUNDLY SETH.
Evany, , is the fifth piece in our family puzzle. She entertains us all daily and is an immeasurable blessing to our home.
Coen Rhys McCall is and is quickly learning to hold his own with his siblings! He's pretty great.
