The Faces of Avelyn Monet

My beautiful firstborn and the one and only girl in our immediate family. Besides me, of course. I always thought I would only have girls, as there are very few boys in my extended family. But instead, I was blessed with just one beautiful, very dramatic, charming little girl.

A girl who just got out of bed and asked "Tomorrow, for lunch, can we have, like, Steak & Shake or something? Thanks."

Found it!

Man, there is nothing better then starting off your day by finding your camera cord, is there? Well, maybe that and finally putting blinds on your living room window, even though you've lived in your house for 18 months. Well, maybe that and your baby's physical therapist telling you your son is developing age appropriate reflexes!

In all seriousness, thanks for all of your comments on my last post. I have to admit, I was a little afraid to hit publish, as just about everyone I know in real life reads this blog. But I figured...we're all working on transparency, right? Just getting it all written out helped me a lot, and I want to thank you all for your kind words and for how many of you were kind enough to admit that life has been a struggle for you at times, too. I think it's so easy to go through life being convinced everyone has it better than you do...sometimes it's really refreshing to hear that others are struggling too, and it's totally normal to wonder what in the world God is doing with us. No one likes not knowing the plan, and it's part of our complete surrender to him to have occasional setbacks where we throw tantrums and scream "But I want to understand it all now!" It's kind of like when Ava freaks out because she doesn't want to have to sound out all the words to finish the story...she just wants me to tell her what happens, already. 

I know we'll get there, John and I, and as a friend emailed me this morning, we are very different people since Eli's death and Seth's diagnosis. They have changed us, for better or for worse, and we won't ever be the people we were again. We have to get to know each other again. 

But again, thanks for reaching out in your comments and emails. I sat up reading them last night, and I was in tears over many of the stories I read. You are all in my prayers, as well. 

Now, onto more fun things. Gala Pictures! 

Mara's 70's table. Isn't it adorable?

Tina and Me. Isn't she the cutest thing you've ever seen?

Shelley and I. No, we did not plan to match. 

John...I love this picture!

The Girls

The Guys

Pretty In Pink...the inspiration for the table. 

Ergh.

For those of you who have gone through losing a baby, or raising a kid with special/high needs, or, for that matter, raising a typical kid, have you ever found yourself just putting along, doing great, doing what you need to do to get your kid to school/therapy/doctor/surgery/playdate, secretly just thrilled with yourself for dealing with life so well? It almost gets to the point where you're patting yourself on the back, saying "look how well adjusted I am! I've taken all these lemons and I've made the best darn lemonade I've ever tasted!" There's a goal to work towards, and you're kicking a** and taking names, right?

Well, what happens when you meet that goal?

I found out first hand what happens to me. Since the new year, I've been thinking I was feeling better about Eli, feeling better about Seth and all of his issues. We were heading toward a surgery date and we had met every goal in an amazing way. Eli's birthday came, and I handled it great! We had fun, we thought about him, it was easy peasy. No crying. No freaking out. Seth's surgery came. We survived it. It sucked, blood came out of his ears and mouth and nose, but he got through it and he feels great. His surgery is over. Activation is Monday. We move on from the critical making the implants happen stage to the intensive therapy and mapping maintenance phase. While still critically important, there is not the same sense of urgency there was with getting the actual surgery done. We raised the money we needed and are blessed to have the money to cover Seth's surgery, if the hospital ever sends the freaking bill, which is another story.

All my goals have been met. Seth is poised to experience hearing in less than a week. I should be ebullient.

I am more depressed than I think I have been since Eli died.

It was like I was on autopilot for all of this time...do what we need to do. Seth survived being born, unlike Eli, but then he was very sick. In critical condition. My husband is, how do you say it...not good with stress. Neither are some others in my family. From the moment Seth was taken to the NICU, I found myself spinning everything, trying to find the silver lining. Looking back now, it shocks me to see how sick Seth actually was. He was in persistent pulmonary hypertension. He couldn't breathe on his own. His metabolic levels were all so out of whack they thought his liver was not functioning. He was sick. I never once let myself  own that.

Then, he got better. Except, of course, he was deaf. That one threw everyone for a loop, and so I spun that, too. I threw everything I had into getting his everything sooner, faster, better than the norm. If the standard was aids by 2 months of age, I wanted them at one month. If the standard was speech therapy beginning at 6 months, I wanted it at three. I was advocating for Seth the way I never was able to for Eli, and it worked. He was aided at 6 weeks. Therapy began at 3 months. He thrived. He received implants at 8 months. He was diagnosed with hypotonia (low muscle tone) so we began therapy for that. I never stopped to think about any of it...just did what I needed to do to get Seth what he needed. In many cases, I had to push against the system. Sometimes just being nice didn't work, and I had to be a bitch.

It is only now, when we are coming out of the surgery stage and I am able to finally take a deep breath, that I realize I am falling apart. My life, my marriage, and my house are in shambles because I have been eating, drinking, and sleeping Seth and Seth's care. I miss Eli. Now that I don't feel like I am in emergency mode with Seth, Eli's loss is hitting me harder than ever, and as I talk to my husband, I realize we are speaking two very different languages. Like many people, we are stressed. At the end of our rope financially. He works to jobs, I am with the kids all day every day. It's not ideal, and of course we take it out on one another. We have dealt with Eli's loss so differently from each other that sometimes when he talks I have to shake my head, and try to remember how he was before Eli died. That he wasn't always so angry, so bitter. I understand it...I have lived it too, but I am so sad and feel so defeated that he can't find the joy that was there in Eli, too.

To be honest, my faith, keeping very busy, and Ava and Jace are the only things that kept me alive after Eli's death. Even so, I was not in a good place. I was convinced that I had singlehandedly caused his death. The guilt I felt and truthfully still feel is overwhelming. Now that I am not burning the candle at both ends, trying to get Seth what he needed, that is all crashing back down around me and I am struggling. I love God. I have been faithful. He is my redeemer and I seek to glorify him in everything I do. But can't enough be enough? Isn't losing a baby and having one with high needs enough? Why does my marriage have to be falling apart at my feet as well, in spite of my best efforts to honor it? Why do we have to be within a hairs breadth of losing everything we have every month? I know I am whining. I know I am. But how much does He want from me? I thought I had given it all to Him already, and now I feel like I'm being torn down to nothing.

I want to believe that He'll build me back up stronger than ever, but it is at this lowest point that it is so easy to let Satan in. I know I am whining. I know that it would be easier to delete all of this and write another post thanking God for testing and strengthening me, but it's important to me that everyone know that I struggle too. Having faith does not make me perfect, and I still question and rail against God in times like these. I  know how blessed I am, but it is hard to feel it right now. I am under attack, in a very real and serious way, and I would really appreciate your prayers.

Where is my camera cord???

I want to post pictures of the Gala. I really do. But my camera cord has gone MISSING! Argh!

Off to search.

It's Gala Day!

Just spent the morning getting our rockin' 80's table ready. What do you think? 

MIA- I know!

I know, I know. I have not posted for over a DAY! Completely out of character for me. My husband has unexpectedly had a few days off given to him, so we are taken advantage of it by doing all the heavy lifting spring cleaning things I can't do without him.

What was on the schedule for today? Ripping up the carpet my children poured gallons of water on the day I subsequently had to put them up for sale. But before we could do that, their beds had to be diassembled, all toys had to be removed, and we had to clean the room enough to even get to the floor. I won't lie...it was a challenge.

Because I am the person I am, I saw an opportunity to go completely crazy and, even though I have a huge Gala to prepare for on Saturday, I caught myself perusing the OOPS paint at Lowes. I am a complete sucker for OOPS paint. I think my entire house is painted in that paint. What can I say? I love me a $5 can of paint.

Before I knew it, I was a taping maniac, taking the kids room in a whole new direction. Of course, as I went off in that direction while the kids were at school and Seth was napping, John went off to his second job and the kids got home and Seth woke up, leaving  me in the middle of the tornado that is the random debris and detritus that comes along with a  good idea that leaves you single mindedly unaware of the mess you are leaving in your wake.

So, our house is trashed, the kids room is only half done, and they are sleeping on a Dora pull out bed in Seth's room.

Why do I let myself have ideas?

Compare and Contrast

Because I have a terrible memory after the whole 4 pregnancies and babies in 4 years thing, I have forgotten what my children looked like when they were babies. So I thought a little compare and contrast was in order. Here they are...Ava, Jace, and Seth at 9 months.

Ava: At 9 months of age, she was 23 pounds and 30" tall. (Above the 95th percentile for height & weight)

Jace: At 9 months of age, he was 26 pounds and 32" tall. (Above the 95th percentile for height & weight)

Seth: At 9 months of age, he is 18 pounds and 30" tall. (10th percentile for weight, 90th percentile for height)

Who do you think he looks like? It's so funny that he's so much lighter weight than they both were...I guess not eating will do that. It's not because he's a preemie, either...Jace was a 35 weeker who had is very own NICU stint, so he and Seth are on even ground in that regard. Oh well...I'm off to eat some cheesecake...we'll see if it will help fatten Seth up! 

Monday

I haven't written a Not Me Monday post since Stellan went into the hospital. Partly because it just didn't seem as fun to play without MckMama, but also because things here were getting very intense leading up to Seth's surgery, and afterwards his recovery was a little rough. I'm out of practice, I guess.

This morning, I slept in with Seth and then spent all morning running around searching for 1980's items for the Gala. I spent this evening having a long talk with my neighbor and good friend about...well, I'm not sure what it was actually about. It started out being a conversation about our youth group and morphed, as many conversations with friends do, into a long, drawn out talk about 14 unrelated things. But one big topic was prayer.

Prayer is such a powerful tool. Sometimes, when all seems lost, when there's nothing else we can physically do in a situation to fix it or make it better, we can forget that prayer doesn't just help the person or situation we're praying for, it also helps us. It can help us come to terms with something we're unhappy with, even help us find joy where before we'd only seen sorrow.

Yes, our prayers can be answered, and they are answered, every day. But beyond that, prayer is our ticket to a personal relationship with Jesus Christ. Life gets busy, and it's easy to forget to take the time to pray. But Jesus calls us to pray unceasingly, and there's a reason for that beyond those we're praying for. When I try to pray unceasingly, it draws me closer to God. I feel like I am considering Him in my decisions, that He is there with me, supporting me throughout my day.

When I forget to talk to my husband at night, because I'm too tired, or too busy, or just plain don't feel like it for whatever reason, we both feel disconnected the next day. When I take the time to listen to him or to tell him about what my day was like, it helps us remain close to one another. The longer we go without talking, the less we talk. It's a vicious cycle.

That's how prayer is for me. When I'm praying regularly, I pray more. Praying is on my mind, and I do it more often. I have a running conversation with God. When I don't take the time to pray, I feel as though I am distancing myself from God, and the longer I do that, the easier it gets.

Tomorrow, or possibly even tonight, Stellan is going to have surgery. I know you're all praying for him already, but please hit your knees a little more than usual. I know what it's like to fear the unknown, and a lot of times, that's worse than reality ever could be. I have been blessed to be able to count Jennifer as a good friend for quite some time. My heart goes out to her, and without a doubt, she is being tested. We all know she will pass, that her faith is great, but she needs to be lifted up just as much as Stellan does.

But I promise you, spending time in prayer for Stellan and Jennifer will not just help them, it will help you, too.

Profound Sounds: A Pictorial Post

The Benefit Concert last night was amazing! We had a great turn out- well over 200 people were there, and the music, food, and prizes were just great. I was completely overwhelmed and spent the whole night wishing  I could spend more time talking to more people, but Seth was a rockstar and he powered right through the evening with a smile on his face most of the time.

 There were several other CI kids there, which was awesome, and I think the coolest part of the entire night was when the kids were up singing and dancing and our friends' son, a 1 year old with a cochlear implant that was just activated a few months ago, came up to dance. He grinned hugely at me, pointed at his ear, then to the speaker the music was coming out of.  (In our speech therapy, the kids are taught to put a finger to their ear when they hear someting) Then he just started boogying down. It was the cutest thing I've ever seen, and I can't wait until Seth is out their dancing with them! 15 days til activation!

Ava with her serious face.

Seth

"Sisters for Seth" performing their great percussion number!

Me talking as usual and Seth hamming it up. I'm not talking to myself, I promise.

My friend Tonya sneaking some Seth time. 

Our friends' daughter Avery, who started dancing right after this was taken. 

My best buddy, Fisher

The kids rocking out to some music.

Me talking, more.

Ava being a tour guide.

Greg West!!

Heather of Heather's Place! She just got married on the same day Seth had surgery!

Ava showing off her face painting thanks to Mrs. Stratemeyer. 

My mom, Ava, Seth, and me

Brothers

Rob & Rebekah with my Mom sitting in on keyboard. 

All of us in one picture! Crazy!

Thanks to everyone who came...we had a blast and hope you did too! Thanks for supporting Seth. 

Dear Seth - 9 months

Dear Seth,

Last night, I was sitting with you at Panera and a woman walked by, stopped in her tracks, and said "You are the cutest baby I have ever seen! You look just like my Bubby when he was your age!" She cooed over you for a few minutes, and then went on her way.

I took two things from that interaction. One, that way more people than I ever thought possible call their little boys some variation of "Bubba" or "Bubby", which is just weird. Weird, but true. We call you and Jace both Bubby ALL THE TIME and our next door neighbors call their son Bubby Lastname on a very regular basis. Before I had kids, that is one of the things that I would have thought was made up.

The second thing I gathered is that you really are the cutest baby ever. OK, I'll admit I'm biased, but seriously, you are the most beautiful little boy.

You're my fourth child and the first one to have my coloring. I was a blond baby with blue eyes, and when I married an Irishman with black hair and dark eyes, I thought it was all over for my recessive genes, but you have renewed hope in me that when people look at all my children, then won't turn to me and ask if I'm sure they belong to me.

Today, you're nine months old. You should be seven and a half months old today. A week ago yesterday, you were going through surgery to receive two of your very own cochlear implants, something that we didn't think would happen for you for a long time. Today, I was eating lunch with your great grandmother and talking about how I was so amazed by the greatness of God and the generosity of others in making your surgery a reality for us, and she looked at me and said "When Seth was first diagnosed, did you ever think that you'd get this far?" I thought about it, and I answered her truthfully, "Yes." From the very moment that the audiologist told me that you couldn't hear, I felt relieved. Relieved that I wasn't making it up, wasn't crazy. Relieved that you were just deaf. Happy that of all the things they said were wrong with you during your NICU stay (basically, everything), that we were making it out of there alive, with only hearing loss.

I started researching like crazy. Do we sign? Do we immerse you in Deaf Culture? Do we skip signing and go for cochlear implants? If we do that, do we go for two or settle for one? Those are very controversial questions for parents in our situation. But for me, I felt a great peace. We didn't need to choose a side...you didn't have to be Deaf or deaf, a signing kid or a CI kid. You have always been Seth to me, and I'll use whatever tools in the toolbox work for you. I decided very early on that I wanted all the tools, and I set out to get them for you, just in case you needed them.

In my search for the tools for your toolbox, we began to meet the people that would change our lives, and yours. Erin, our sweet audiologist who opens her arms to you every times she sees you as if you were her own child. Barbara, the intern who has been there at almost every juncture of your journey from the very first ABR to your implant consult. Shelly, the amazing CI Audiologist who has been a shoulder for me more times than I can count. Your Early Steps coordinator, your pediatrician who came rushing out into the waiting room on you first post NICU visit, shouting "Where's my baby?" happily. Rosa and Nancy, our ASL instructors. The families from the support group that started just after your diagnosis, who have become like family to us, the people we can speak CI shorthand with. Andrea, Jillian, Dave, Debe, Randy, Jenny. Sarah, your amazing  speech therapist. Steve and Karin, the parents of your friend Summer, who I literally don't go a day without emailing about something or other. I'm forgetting others, I know.

All the people that we'd never met before you were born have become the figurative tools in your toolbox of life. That's not even counting the family and friends we already had...our immediate family, who never batted an eye at your deafness, who never once let it be anything negative. Our lovely friends, who immediately, moments after your diagnosis, began learning sign language and teaching it to their children so that by the time  you were signing, they'd be waiting to talk to you.

Then there was this blog. The people that have come together to lift you up has been amazing. I have gotten countless emails offering prayers, help, a shoulder to cry on or a brain to pick, Families who have been there. Families who are there. Families who might be heading where we have been that we can, in turn, help.

I could list your milestones at nine months. I could tell you about how you now have 4 teeth (2 on top, 2 on bottom), that you're sitting up unassisted, that you are so clingy that you resemble a Koala Bear attached to my hip. I could tell you that you weigh 18 pounds and that you are saying "Mama" to me, which I love. I could tell you that you have 17 days to go until your activation day.

But, while those are important things that I want to remember, there is something bigger still. I want you to remember the people you have in your life at 9 months of age. The people who have, in different ways and various capacities, come together to offer you the biggest and best toolbox imaginable. There is nothing we won't be able to offer you, if you need it. Because of the grace of God and a lot of effort on the parts of your family and all of the people I've mentioned here, you have received a huge gift, months early. The opportunity to hear. In both ears.

You are one blessed little boy, and man, do I ever love you.

Tomorrow, all the friends we know that live are able to come are going to join together to celebrate you and the awesomeness that is the ride we're all privileged enough to be on with you. It's going to be great.

I love you, Bubby.

Mama

Gotta Bounce

These pictures are from the night before Seth's surgery...this is the first toy that Seth will allow me to put him down in! I love it simply for that reason.

'80s, anyone?

Ava's school is holding their annual Gala in a couple of weeks, and I am hosting a table at the dinner and silent auction. I was planning to opt out of decorating in the event's theme, which is Decades (The school is celebrating their 10th anniversary). 

However, today I was hanging out with the ladies who make up 1/2 of the couples who will be joining us at our table for the Gala, and they completely flipped for the chance to theme it up. 

The decade we chose? The 80's. 

We've got several ideas going, and I have more than a few hideous dresses saved in my ebay auctions that I'll have to choose from, but I want more input! If you were dressing the part (cocktail wear) and decorating a table in an 80's theme, what would you do?

A Real Baby

Ahh, Validation. 

It feels so good. 

Now, because we have requested and received his birth certificate, his birth is a matter of public record, which it was not until now. If someone researches our family tree in 50 years and looks up our kids, Eli will be there, recorded right along with the other kids. Just like them. Because he is just like them. Loved like them, cherished like them, wanted like them. 

He'll be there, for anyone who wants to look. Our third child and second son, born on a Wednesday at 5:35 pm. March 28th, 2007. He weighed 6 pounds 6 ounces and was 18 inches long. He had black, curly hair, and long fingers and big feet. He was a baby. He was our baby. He was and is and will always be part of our family, and I can't tell you how great it feels to know that I have proof of his existence. As time goes by, sometimes I think I will forget what it felt like to touch his silky hair, to hold him in my arms. Before, I felt like my memories of him were the only proof of his existence, and if I couldn't remember what he was like then it would be like he was never here. 

But he was here. He was a real baby, and he counted.