Facing Fear

I hardly write here anymore. But old problems swell up, threatening to burst open into the comfortable life we've been living lately and when that happens, I want old faithful. This blog has been an outlet for me on some of our darkest days. I'm teetering on a nervous breakdown at the risk of sounding remorsefully weak. If you're new here, this post should give you a little background of our story with Abel. If you want to read even more, check out these posts. Abe has been through a lot. We have been through a lot. Before you start worrying (like me), I will preface this with- Abel is doing just fine. He currently has strep, but is on medication and won't be contagious soon. But what we discovered at the pediatrician yesterday sent me into a tailspin of despair. It's not terribly alarming news, it's just that I have so much PTSD associated with that time of our lives that the black cloud that has just been gathering over the years poured out all over me again when I heard it.

Lately we've noticed an odor coming from the ear that he had all that trouble with years ago. In short, he was simultaneously bilaterally implanted. He had all sorts of struggles and surgeries causing the surgeon to come to the decision to take out one of his implants nearly a year later. Months later, he was finally released from infectious disease and I never looked back. I despised Nashville and all that it represented to me. No longer was it the first place I ran the distance of a half marathon. No longer was it where I celebrated my birthdays in college. No longer was it a fun place to get away for a couple days. It was the city where I mourned so much of a normal life for my child. It felt suffocating when I drove into the awful traffic almost weekly that year. Nashville was the place we spent much of my son's early childhood in cold offices and caged hospital beds. I know this is a bit crazy, but it's how I felt. When I drove away from infectious disease that day, I knew I would only be back if I had to. Fast forward to now.

His pediatrician has cultured the bacteria in his ear and was a little concerned. The results are not back yet, but he wanted us to go ahead and get in with Abel's surgeon in Nashville to check up on him further. It might be nothing, but the fact that it could be something broke me open again. I cried all morning thinking of starting down this road again, both literally and figuratively. Over the years I've worked at trying to create happy memories of Nashville in my mind, but when I get off that exit I feel the heaviest curtain of dread fall around me. I know better, but I can't always shake it.

Tomorrow we will return to Vanderbilt to get him checked out. It's something we've needed to do for awhile now. I had pretty much laid to rest the idea of having him implanted again and so I saw no need to bring him back. I hoped to find an ENT around Knoxville who would see him, but because of his delicate history, no one was willing to take him on as a patient. Perhaps his infection is one that is easily handled. Perhaps it's not. But I'm writing here today because I know you'll join in praying for him. Thank you for allowing me to spill out my heart for all to see as dramatic as my sentiments may be. I feel better already. God is and always has been in control and He'll never leave us. He'll carry us with Him as we walk back into the doors of the Children's Hospital tomorrow and everything will be just fine. Deep breaths, Kacy.

Persistent

Grief hasn’t come to me in the traditional albeit earth shattering ways that it has to others. No one died. But I feel it just the same. Tonight, years and years passed a deafness diagnosis and much understanding and acceptance, I felt it again as I clutched a sobbing five year old. Shaking, in the fetal position on his bed, he cried.

Twenty minutes ago, my son was asking me questions but his reactions to my responses clued me in that he wasn’t hearing me. My eyes and hands reached for the processor on his head that helps him to hear and it wasn’t there. I signed to him that he needed to show me where he last saw it and he took me outside and we found it. The hearing device itself was fine, but the dog had done a number to the headpiece, a magnet that connects to another one implanted in his head three years ago. Without that magnet, that four hundred and fifty dollar piece of equipment, my son is profoundly deaf.

Am I mad or am I sad? Oh, it’s for sure both.

But right now? This moment? It’s grief.

I told him that his dog had chewed it up and that because of this, he wouldn’t be able to hear in the water anymore. His understanding is on point in this area. He knows the cost both literally and figuratively. Monetarily speaking, we are out a lot of money. But the other cost is that it’s the beginning of summer in East Tennessee and if you want to make it, you will need a giant pool of water. The other even greater cost is that Abel won’t be able to hear much of our summer vacation. Pools, lakes, splash pads, a rainy day. What previously was a great sensory experience is now diminished quite a bit for him. Not to mention, it will be a safety issue, too. Costly hearing equipment, sure. The true cost is his ability to hear, though.

That’s what will take my breath away. That’s what turns my anger into gut punching sadness. His eyes filled with tears, he took off to his room, and he laid on his bed and he cried. I went to him trying to console him as he tried to get it together. He’s tough. He willed himself to stop his body from shaking with tears, he slowly dried his eyes, and finally he stood up. He straightened up his clothes and he went outside to enjoy the rest of the evening.

He knows life doesn’t stop for him. He knows how to be persistent. He’s five years old. I was nearly thirty when I learned that lesson. It took him to make me see that. So, again I’ll take a page from Abel’s story. I will stand up from the catharsis of my keyboard, dry my eyes, and straighten out my running shorts. Life doesn’t stop. Goals aren’t reached by sitting in sadness. Get it together, Mama. You’ve got this. You are stronger than you’ve ever imagined. YOU are, too (you who are reading this).

Thanks for the lesson, Abe.

Fullness

Grief is annoying. Just when you think you can breathe again and things are going a little better, seemingly out of left field you're hit again. BAM.

That's what happened today at just before 8am this morning. I start my day at 5:30, slowly waking to have my coffee, let the dog out (yes, we got a dog), and try to pry open my eyes from yet another night of sporadic sleep. Every morning, I try to cling to that joy that's there (Psalm 30:5). The little people do not yet grasp this joy and so they very begrudgingly and painfully slowly rise up and start their day. I try not to let it get to me, but sometimes it does. Sometimes I herd them into school like cats and wish the other two that are clinging to my legs and hips could stay, too. Other days, I want to keep every single one of my arrows (Psalm 127:4) home with me so we can sit on Chip and JoJo chairs in our hypothetical library with the puppy in our laps and learn Spanish like all those perfect homeschool mamas on Instagram. But this is real life and we're late.

I buckle my little loves into their chairs and hand them an array of breakfast items that will inevitably end up on the floorboards and in their ears. I don't know why either. 

Abel got a new ear two weeks ago. I don't think I've talked about it here, but it's not a new processor per se; there was not another surgery. Instead, his cochlear implant company came out with a device called the CROS link system that takes sound information gathered from his unimplanted side and sends it to the implanted side so he has access to more language and sound. It's about the size of a hearing aid so it's tiny and made for adults primarily. In other words, it's not Abel proof. In two weeks, he has already broken it once. Yesterday, he didn't want to wear it after school so I put it in a very specific spot in my car so that I would know exactly where it was this morning for school. He goes in waves. Sometimes he wants to wear it all the time. Other times, he doesn't want to wear it at all. After testing in the sound booth on Monday, we know it is helping his hearing tremendously so obviously we want him to bond with it and become responsible with it like he is with his processor. But with all things new, it's a process. I went to grab his CROS link this morning and it was gone. It's not about the money. It's a two thousand dollar device once you pay for it and all the appointments that are required to program and set it up. Most insurance companies consider hearing devices a cosmetic expense and won't pay anything on them. So we put two thousand of our eggs into this basket, but who's counting? Anyway, I just want him to have the best opportunities he can. I don't want him to cry in gym because it's too loud and the language isn't clear. I don't want him to sign "mama" in large crowds. I don't want him to wake up in the middle of the night and not be able to hear a fire alarm like his siblings. I don't want him to have to rely on power, a charger, just to be able to use a sense that most of us take for granted every hour. I don't want him to have this deafness. I want it. I want to take it from him.

Most days, I see the blessing of his deafness. I see the incredible opportunity Abe has to work hard and defy statistics. I dream of him being an interpreter, trilingual, an etymologist, in communications, a musician, or anything his heart desires. I can also recognize all the amazing people that were brought into our lives with his diagnosis years ago. I see how it's molding my other kids and how I hope they'll be more accepting of differences in their classmates because of it. Just the other day, they were playing that they met a kid on the playground who was deaf and they began signing to one another and purposing to "help" him find his mom. I mean, there are endless things to be thankful for.

But for five minutes in the car, I let myself be sad again. I think that's okay. 

The truth is that he is deaf and THRIVING.

HE CAN DO ANYTHING.

Even teach his old mom to ponder on that joy that comes in the morning. To soak it in. To remember that the God in Heaven made all things, to include my sweet second born, and he made them perfectly. He is in the details of our lives. He loves us unconditionally, perfectly, wholly, supernaturally.

"And I pray that you being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge--that you may be filled to the measure of all the fullness of God."

Ephesians 3:17-19

Abel is full. I'm full. Through HIM, we are full. Thanks be to God.

A day in the life

Because why wouldn't you wake up bright and early, go find the hot sauce and empty over half of it into a glass of sparkling water and on your little brother? I mean why not? It's like this every day, every hour that I'm with my dear second born. I think he is the reason I feel stretched to my limit every single day. And sometimes it just all gets to me. Yesterday was that day. I have to have one of those every once in awhile I guess. I'm sitting here with my second cup of coffee and despite the laundry and dishes piling up, I feel the need to write. My blog has become a place for Abel updates when I used to talk about our latest adventures all over the country. I know it's not exciting but it keeps my sanity and provides a record when my brain is foggy and I feel like he isn't progressing at all. Thank you to those of you who still check in with us despite my lack of exciting updates.
I tried to be in a good mood yesterday. I woke up and read my bible and the promises of to whom I belong. I was feeling humbled and good. I went to get dressed and ended up spending an embarrassingly long time trying to get ready, all with four children vying for my attention. It took so long because I was feeling really down about my postpartum body. My old clothes don't fit and my pregnancy ones don't either. With everything going on around me, I just wanted to feel confident in my appearance but everything I put on whispered that I was just another mom who has let herself go. One who hardly gets to shower because she's so focused on her little ones. One who doesn't know what an acceptable price is for mascara because who has time to buy/apply it anyway? One who doesn't have a life outside of her 24/7 job of raising kids. One who isn't so good at raising kids anyway. I mean, why is it so difficult to potty train a three (nearing four) year old? Why is it that the same child thought it was okay to bite his friend at school over a toy the day before? He's three. He should not be biting...or pooping himself...or struggling with speaking phrases. He should be speaking in sentences.
Obviously, my thoughts aren't entirely sensible right now but they carry much truth, too. I'm exhausted by his disability. I feel really alone. I don't know anyone who is in my position- caring for a bunch of small children, one of which has a cochlear implant and is still significantly behind his peers in language, communication, behavior, and motor skills. In a few months, we'll be celebrating his two year hearing birthday and while he has definitely made progress, his cochlear implant peers are leaps and bounds ahead of him. I see it twice weekly. When he goes to group therapy, there's a room beside his with a window and speaker that I can watch the session from. As I walk him in, I greet his peers with a "Hi! How are you today?" and you know what? They respond. "I'm good." They don't have to be told to say it. They know what I'm asking. Abel still stares blankly when he is asked questions by most people. It makes me want to cry because I'm doing everything I can do for him and I just feel tapped out.
I'm not writing for pity. I certainly don't need that. I have a beautiful, healthy, spunky boy who is very loving to his mama. He is the first one to require a hug, stroke my hair and pull my cheek to his lips for a kiss. I'm his person and I love him more than I could ever say...but caring for him day in and day out is physical and mentally draining me. I want to be better for him, but I feel like my hands are tied.
Yesterday as I was battling these thoughts, I was also on my way to therapy. I got in the car to find my gas light on and my tire pressure light lit up. I drove to the nearest gas station despite having no time built into my schedule to do that. I pulled up to fill the tank and my card was declined twice so I picked another card and made a mental note to find out why. As I was getting gas, I found a dollar for the air machine (Score!) but I knew I needed quarters. I began asking the folks around me for change but no one had enough quarters. They said I could just have the ones they did have but I didn't want to do that so I began unloading the kids so I could go inside the gas station to get the change I needed. Finally, with fifteen minutes before I had to be at his first appointment in Knoxville, I pulled up to the air machine and guess what? They had changed it from $1.00 to $1.50 because of course they did. I drove to OT with a deflating tire and a deflating positive outlook.
By the way, the reason my card was declined was because someone stole my info and bought $720 worth of school supplies. Which is so poetic, right? Someone with 85 kids apparently is sending them  all away on my dime. The stay-at-home mom who can't wait to usher her brood of kids into the hands of more capable teachers than herself. Ha! What a freakin' day.

What if she's deaf? Thoughts on Baby #4

I'm five weeks or less from meeting my newest little gift from above and I haven't even considered my thoughts on if she'll be deaf or not. That is definitely uncharacteristic of me, but I think it probably has everything to do with the power of God inside me. He hasn't let me worry about that. I've had so much going on, so many other thoughts to attend to.

I'm thinking about it now, though-- and it sort of seems like it's just another pondering. Will she have curly hair? Will she even have hair? What will her nose look like? Will she be hearing or deaf? Five weeks out and I think I'm okay. I haven't worried about it. It's incredible. Of course, this could change between now and then. I know I'll be so nervous during the hearing test. And truly, I don't want her to have hearing loss because I believe life is easier without having that hurdle, but I hope if I hear those words again, "Your baby is deaf" that I will be at ease, happy even because I finally have a little girl in my arms that God created perfectly.

When I had Merit, we were two weeks away from having Abel implanted with bi-lateral cochlear implants. The weight of the world was on my shoulders and all the hearing tests, surgeries, ear infections, hearing aids, and therapies were fresh on my mind. When the lady took him away to do the hearing test, I had told her about Abel and she could likely feel my anxiety. When she brought my sweet boy back to me she did so with a smile and an encouraging word that he probably only failed because he had so much fluid still in his little head from coming so quickly into this world. My heart ached for him as I stared at his perfect, tiny little newborn head and thought about them cutting into it. Other hearing tests were set up and I tried to push it from my mind. I began to notice him startling at sounds and my hope was restored a bit as we geared up for a very long surgery for my (less than) two year old. As you probably know, it turned out that Merit could hear. The point is that there was a tinge of doubt and fear. With baby #4, I have much more peace. Still there are thoughts surfacing. Even now as I type I'm hoping this blog post isn't some foreshadowing of what's to come in our lives. But what I feel right now is comfort in God's plan for her. I'm excited to meet her and find out more about her and who she'll become.

This weekend as I've watched my deaf child seem more and more like a happy, "normal" child and multiple friends have commented this week that they can see a marked difference in his progress, I've been able to see past the struggles we've had over the last three years. Abel is waking up and conversing with his older brother, playing, and laughing like he gets to grow up with his best friend. Can I tell you how incredible it makes this mama feel? I used to worry so much about his relationship to his brothers. I didn't want him to lack communication in any way, but instead I think he's teaching us so much more than we are teaching him.

It is well with my soul.

Kinley Jordan- 2011

Abel Elias- 2012

Merit Kimsey- 2014

"For God did not give us a spirit of fear, but of power, love, and self-discipline."

1 Timothy 1:7

What's New?

Top of the Monday mornin' to ya, friends! I hope your day is starting off as fabulous as mine (or better). I mean, I didn't wake up at the beach so there's room for improvement. Still, it has been a good morning. Jordan was around so I didn't have to wake up Merit to take the other two boys to school, meaning that I also didn't have to throw my back out of line as I hobbled across two parking lots with a baby on my hip and two other little goons tugging on my other hand. Isn't it amazing how not having just one of your kids with you makes everything seem so much easier? I bet once Saylor arrives, I'll be feeling like three out in town is a breeze. Because Merit slept in (10am!!), I got a lot done.
Dishes are clean, laundry has been started, and I'm about 4,000 steps into my day. In addition, I've been plugging away on the nursery.

Last week, I bravely moved my two oldest into a room together and that has been...well...going. Anyway, I was determined to have a little room for our newest addition coming soon. Kinley had a room set up about a week before he arrived due to a move shortly before my due date. My other kids didn't have rooms until they were closer to one. It's not a big deal, but since this is my last babe I figure there's some room to spoil her (and me!). I just think a girl needs some room for her clothes! :) I don't have money to make this room the Pinterest perfect place, but I do have some mediocre skills that will improve the look of Abel's bland, tiny old room. When Jordan left on business, I set to work. In a week, I have moved out furniture, moved more in, set the crib up, and painted. Additionally, my dear husband humored me this weekend when he got back and hung some crown molding for me. I'm getting excited to finish cosmetic issues and start decorating. I'll show you more later.
We survived the first week of J being gone. We had some rough moments, but they were made better by friends and family who stopped by to provide a smidge of sanity for me. My in-laws brought over dinner for the boys and girl scout cookies for me and told me to leave and go to the grocery store alone! It was so nice to have an hour. The week went well. Abe had his first appointment with his occupational therapist. By the end of the week, I had noted that he said two new phrases: "It worked!" and "Do it again!"Merit is growing and changing so much, too. This past week he learned to climb up to the top of their outdoor play set by himself and slide down. Big boys.

I'm 27 weeks now. 

Baby is the size of a: cucumber or lantern

Weight: 140

Cravings: Nothing to write home about

Stretch Marks: I think I see a new one every six minutes. Kidding, but yeah...I'm trying to keep them under control. 

Exercise: I haven't been to the gym in weeks. My back pain is awful. I finally broke down and bought a pregnancy belt yesterday. It does seem to help, but the pain is still there and knocks me off my feet at times. I'm a little worried because I have a 5K coming up and it really hurts to run.

New Things: Does a feeling count? I just feel so much more pregnant than I actually am and it gives me this uneasy feeling that she might be early. Watch her come at 43 weeks now that I said that! :/ Anyway, I think that's why I've been wanting to get things in order. Nesting in full effect. I also got her car seat yesterday!

What's going on with her? She's about two pounds and if she's hearing, she probably is starting to recognize Mama's voice.

What I miss: sushi, running, climbing stairs without breathing heavy....you know, the good life.

What I'm looking forward to: Never being pregnant again.

Sleepless in Tennessee

Historically, when I'm awake in the middle of the night blogging, I'm in active labor and don't quite know it. Let's hope that's not the case here. I just was tossing and turning in bed after Abel screaming for the last few hours and decided my thoughts couldn't turn back off until I got this off my chest. It doesn't matter that I'm tired on every level. Exhausted physically and especially mentally. I have to write through this tonight because I feel so desperate for respite for me and this family.

As Abe gets older he's becoming more challenging. He is 3.5 years old now and should be gaining vocabulary and communication skills. His hearing age is 18 months and he communicates on that level. Sometimes he seems to be slightly behind that level. Merit (19 months old) has begun to surpass him in spoken and receptive language and maybe this is why this is bothering me so much lately. It's in my face every day. I see it. Can't ignore it. I have twins-- twenty months apart.

It was at this age with Kinley that I started to see the light at the end of the tunnel in regard to explosive tantrums, behavioral issues, and regulating his frustrations. Sure, he has his days but with an expanding vocabulary, it became easier for him to express himself more appropriately. Abel seems to be headed in the opposite direction. His fits are almost a personality trait at this point and I spend my days at the end of my rope. He can be perfectly happy and raging mad in the same 15 second time span. It's as if he forgets that he can choose a word, a gesture, or anything to help get his point across. He resorts to bulging eyes, immediate tears, flailing on the ground kicking and screaming. All in a matter of seconds. His screams are all day long for me and they filter into the night, too. He can't stay asleep and he wakes up crying frequently. He vacillates between screaming and moaning in the middle of the night and we are all left in a sleep deprived state throughout the week. Nothing seems to comfort him at night. There's nothing we can do. He just cries. Of course, to me, this is so stressful. I hear it all the time. It also leaves me with plenty of time to think about what else might be going on in his little body and mind. My heart aches for one thing, ANY thing to be easy for him, but right now all I can see is the struggle. 

You know what strangers see? They see another child who can't behave. They see another lazy parent who can't control her children. I see it all over their faces when we go out to eat. I see their eye rolls, their whispers, their stares. My reaction goes one of two ways. The stress of the day (this life) closes in on me and I lose it in a puddle of tears OR I plaster my game face on with a smile and try to ignore the helplessness I feel in all of this. Is excessive crying a form of torture training? If so, I have a lot of experience. A lot.

I'm so tired and in desperate need of your prayers for him, for me, for this family. Thanks again for listening. I think I wanted to write this out for catharsis, but also for documentary purposes and in the chance that another cochlear implant preschooler parent happens this way to my corner of the web and finds a commonality here. I haven't lost hope that this is just another phase. I still cling to the notion that one day, Abel's struggles will be that the girl he wants to date is uninterested or he didn't make the varsity basketball team... and his lack of speech, sleep problems, and health concerns will all be a distant memory.

Explant

It's funny what you do when you're avoiding packing a little boy's hospital bag. Paint your nails. Scrub the floor. Unnecessary activities. Whatever takes your mind away from lovingly choosing suitable hospital toys or folding tiny, fresh smelling t-shirts that you might not even ever put on him because his head dressing will be so big and his head so sore due to the surgery he will be there to have. I don't ever want to get used to this feeling. I don't want to have to do this anymore- sending my baby off into the hands of mostly strangers. If we have spoken in the last few days, I'm sure you could tell my thoughts are everywhere. The one thing that bothers me most about this surgery as opposed to all the others is that there is seemingly nothing happy about it. Hope is powerful and all the other surgeries provided that. Hopefully he can hear. Hopefully his nerve isn't damaged. Hopefully he is a candidate for cochlear implants. Hopefully the surgery goes well and he can start his hearing journey. Hopefully this infection will clear up. Hopefully they'll save the implant. The hope in regard to his hearing is gone with this surgery today. When he comes out of surgery, he will have been drilled on, poked, and prodded and for what? The hope is that the infection can have a chance to heal when the implant is out. The surgeon disclosed today that he fears the nerve is too damaged to reimplant again. He could try and he wants to do so, but we won't know if it worked until after a new implant is put in his perfect little head. Another surgery potentially. One that might not work. Our case is the cochlear implant community's worst nightmare and I'm sick thinking of that sweet, curly headed little kid having more hurdles to climb. He's a climber, though unlike his mama. I wish you could have seen him scaling his hospital crib while we were waiting on the OR to open up. I've never seen anything like it. My two year old was climbing better than I ever could. We need to get this boy in a climbing gym! I'm left in the waiting room now with my thoughts of him. I know God has his hand on him. I feel your prayers. I'll check in soon.

The Lord is good to all {an update of Abel's Ears}

The bible verse I've been working on helping Kinley to learn this week is Psalm 145:9-

"The Lord is good to all..." 

The way I get a three year old to memorize scripture is repetition. Over and over, we both recite it. The Lord is good to all. The Lord is good to all. The Lord is good to all. Even to me when I don't deserve it. Even to my family. Even to my sweet middle child. Even when it doesn't feel like it. The Lord is good to all.

I'm glad I had that truth fresh in my heart and mind. Yesterday, I had an appointment at Vandy again as a follow up for Abel. Infections, hospitalizations, and trouble just weren't on my mind. I was having faith and truly believing he would be released. Finally. After ten months.

Instead, after ten months of struggling with this aggressive infection, the surgeon has decided to take his implant out. Obviously, this is nightmare scenario in the cochlear implant community. As he told me the news, doctors gathered in the room with somber faces expecting to console, I suppose. I held it together. Inside my heart, it feels like a devastating blow, though. How silly it is to mourn a foreign object placed into my child's head! It isn't even working. Why should it matter? It's just the point of it all. Another surgery is on the horizon. My child has been put under more times than all of my extended family members put together. More than I can count on two hands. I've gotten to know the back of his precious little head as I strap him into the small umbrella stroller and push him from appointment to appointment. I know his curly tendrils and how they curve around the cords and headpieces he wears daily to help him hear. His head has two "ears" not one. Still, soon he will go under anesthesia again and his right cochlear implant will be removed along with his adenoids and (Lord willing) this nasty infection.

A thousand thoughts go through my mind every day. I wish we had never put it in. I'm so glad we had this surgery. I need more chocolate. Et cetera. I never quite considered how I would feel with this news. The answer is sad, but focused on the future. It's a setback, for sure. The surgeon says the infection seems to be nestled in the internal piece of equipment. He is hoping the nerve is not damaged so that once this infection is history, he can re-implant making him bi-lateral again. I don't even want to think about that right now.

I appreciate your prayers for him. Despite this ever-present problem, he is doing well. His left "ear" is working great allowing him to pick up much language. Lately, I've noticed him stringing words together into phrases. "What's that? Who is that? I don't know. Brother, no!" You know, the basics ;) Receptively, he's a rockstar. He knows what I'm requesting most of the time. His language is coming and I hope it continues to do so. On top of everything else, his early intervention program stopped paying for his speech therapy. We have begun to appeal to insurance in hopes they will start footing the bill as it is roughly $250 a week. A lot has been going on. For those of you who donated or bought items helping with "Abel to Hear", I thank you from the bottom of my heart. Because of the excess money we raised, I had enough for two aqua ears instead of one. This possibility was on the horizon so I only purchased one aqua capability. The rest of the money I put towards his hospital bills. Please know how much that meant to us. Thank you. It's because of people like you that I can see God's hand in all of this. Thank you for supporting us, for giving, for sharing in our excitement and setbacks, and for praying for my baby.

The Lord is good to all.

Kids, man.

Kids, man. They'll kill ya. At least it feels like that tonight.

This morning I listened as my girlfriend told me, "You know, when you're pregnant, you wait for the day that the little person will call you 'Mommy' and then a few years later when you hear it yelled in the car, in the house, on the way into the store...you get to the point where you hate it." She laughed as she
said it, but I knew what she meant. It's so hard when you stay home with your children 24/7. There's no break.

The move has been hard, too. Each move we've done gets progressively more difficult, even though each time we've moved the distance gets smaller and smaller. We're finally home, but because we have three children now who were very much accustomed to their schedules in Cleveland, it has been difficult to find a groove here this week. We are staying at a home my parents own. It is a two bedroom. The oldest two are learning to share a room and that has been awful to put it nicely. I guess I didn't come here to complain, though. I have a glass of wine, three-ok four- Dove chocolates nearby, Big Daddy Weave in my headphones and my keyboard in a desperate attempt to not curl up in the fetal position and die tonight. I just had to start writing because as I was attempting to catch up on my emails, I had to stop. Abel's new speech therapist wrote to me and suggested some mother's day out programs and preschools that we could take him to so that he is around much more language than he encounters here between Kinley and me. I started researching the schools and I was overcome with the urge to cry because as much as I want to pull all my hair out during the day (and most of the night), I can't bear the thought of other people getting to see him (them!) the majority of the time. They tell me socialization and school is what is best for him as a cochlear implant recipient, but as his mama, I just want him with me. But then I think back to him opening the fridge eleventy billion times today after I asked him not to and it's a little easier. Not much, though. Look, I know my identity is wrapped up in these kids. I love them fiercely and the reason I get so upset when they're naughty is because I do care so much about them and the young men they grow up to be. I want to be the one who shows them Jesus. I want so desperately to be a good mom.

Truth is, I'm just as human as they are. I never struggled with anger until I had children. There are days when I raise my voice until I'm unrecognizable. There are more days than not I am mad, so mad, that Abel is deaf. I'm selfish. I say things I don't mean. I'm just a big child, a sinner. "For what I want to do I do not do, but what I hate I do" (Romans 7:15). I am in a constant state of asking for forgiveness, for help, for guidance. And it makes me wonder- is this just how it is?

I can't help but believe it's not supposed to be like this, but then I hear Kinley having a pleasant, warm, intelligent conversation with someone and I know I must be doing something right. I watch as Abel, my deaf son, responds to situations with words- "Uh-oh!", he says as his younger brother drops a toy. "No!", he says, as his other brother does something to provoke him. I can't help but feel a little pride because I'm working so hard with him. I want him to talk and so I work with him, I take him to all his appointments, I try. And I think I must be doing something right. Then I look at Merit and kiss his sweet cheeks over and over and he giggles as his face breaks out into the most perfect grin and I know I'm doing something right. I think that one thing I might be doing right is that I'm desperately running, chasing after a relationship with my Heavenly Father. He is the only thing that is unchanging. He is the only one who can make me new. Through Him, I will keep pouring myself into my children even if it kills me. They're worth it. Every day.

"She speaks with wisdom, and faithful instruction is on her tongue. She watches over the affairs of her household and does not eat the bread of idleness. Her children arise and call her blessed; her husband also, and he praises her; "Many women do noble things, but you surpass them all." Charm is deceptive and beauty is fleeting; but a woman who fears the Lord is to be praised. Honor her for all that her hands  have done, and let her works bring her praise at the city gate." Proverbs 31: 26-31

Once Upon A Time

What a week. This year has started off with a bang. In just a months time, we've learned a lot of new things:

1. We are moving. Again. Just down the road about an hour, but still. It will be good, but I'm sad. I don't want to leave my church, my friends, my gym, my babysitter, or Abel's speech therapist. Move number seven in five years. It's coming. And the pity party is already here. But I'm trying to be positive, too. The struggle. It's real.

Home is where they are, though.

2. Abe's ears aren't working on some level. I just need to say that out loud. You know, I've felt like something has been wrong from day one and this last trip to Nashville didn't bring the best of news. It was leaps and bounds better than the time before that, though. THAT time brought puke, holding down of crazy toddler while they cleaned his ears out and the baby screamed bloody murder, and news of more surgeries to come. This time, however, I just learned that Abel is still not responding much on the right side with his cochlear implants. The odd thing is, there's something malfunctioning but only sometimes. I'll not try to recall the technical term the audiologists told me and I'd be no good at describing what's happening, but just know that it involved a phone call to the company who makes his implants. Said phone call ended with an agreement that his situation was very bizarre and rare. Because of course. Anyway, they assured me again that they didn't think that the internal portion was failing and that isn't what I should worry about at this point. I'm not sure if I told you before, but he recently had a CT scan that showed all the electrodes to be in the right place. I really don't know what to take from the latest appointment, but we are just going to keep trying. Keep on truckin'. My little man is good at that.

Hotel Breakfast in Nashville

The good news? Nearly optimal hearing on the left side. God is good!

3. I have great friends near and far. About a week ago, I arrived at the airport to pick up a friend I met when I lived in Alaska. I hadn't seen her in years and when she showed up, I noticed she had a pal with her. Upon closer observation, I realized it was another one of my friends who showed up to surprise me. It was awesome. These women have no reason to show up and do nice things for me, but they just did. From the tone of my posts, they knew I was having a hard time with life and they swooped in with great company, cooking, cleaning, and helping with my kids. I don't deserve the friendships I have in life, but I'm ever grateful God blessed me with them. And can I just include y'all on that, too? I have so many wonderful friends whose friendship with me began online.

4. If J goes out of town, all the children will get sick. I can't even go into detail without getting super annoyed. But we've been hit hard with ear and sinus infections, croup, and stomach bugs. It has been pretty miserable. Looking forward to warmer weather, fresh air, and less of this sickly feeling floating around. But three cheers for early bath/beds and footie pjs!

Just livin' the fairytale over here, folks ;) Looking forward to a new week with my wild boys and another chance at being a happy, peaceful, godly, and disciplined mom to my little crew.

What are your big plans for the week?

another saga for Abel's ears

I think I'm mostly writing this for documentary purposes or perhaps as a way of updating family all at once, but it might be a little bit because I feel like I need to talk about it. I've tried looking at the bright side of the last few months- my deaf child now hears! But because we've had our share of problems since the surgery, there has been a black cloud above it all (a small one, but one just the same). For months, Abel has battled ear infections, Bell's Palsy, balance issues, the flu, and more. This was a happy child. This was a healthy child.
I think his medical professional team is finally starting to listen to me, to my gut, that something is wrong. He has been on every antibiotic known to man. He's taken steroids, ear drops, and tylenol for days because he is so often in pain. I despise pumping all this medicine in him and not ever seeing much improvement. I hate seeing him uncomfortable.
Yesterday was interesting. I loaded up three small boys and drove for at least six hours. I sat through two appointments and an hour and a half break in between. It was miserable, really. What I learned was even more upsetting. Still, Abel has fluid despite the ear tubes. Furthermore, he is no longer responding to most sound on the right side. This was tested in a sound proof booth. His left side remains very consistent, but he may have heard one prompt with the right side processor at the very loudest level. There were no responses after that. Then when he was hooked up to testing equipment, it was revealed that the nerves aren't being activated. His audiologist called me today to tell me that she has never seen much of a response in that test on that side. She said she had hoped it was due to the infection (and she still does), but -knowing the answer -I asked her what the worst case scenario was and she said, "It could be that the implant is failing and needs to be replaced."
Obviously, that's the last thing I want. (*She did add that she didn't think I should worry about that just yet)
His speech therapist received the information from the audiologist and decided to test it in Abe's session this morning. Sure enough, he seemed to hear some things, but he was much less consistent on that side. She is hoping it was an issue with the processor (outside portion) that was set to be replaced anyway because of a broken ear piece. We received the new one today and his speech therapist said she would come by tomorrow to work with him some more after she got off work to see if it was any better.
Meanwhile, I got a call from the surgeon. That's when this all started to sink in for me. He ordered more medicine and broke the news that Abel had to have yet another procedure that requires anesthesia. Yesterday was his second birthday. Christmas is coming soon. I hoped so badly that his recent ear tube re-insertion was the last surgery of the year. He will soon be sedated for a CT scan to look around at the infection site and to make sure the implant hasn't moved. I'm so sad for him.
I hope that one day I can look back on this as most cochlear implant parents have told me and say that it was all worth it. I have faith that I will, but right now my little man is going through so much and I wish he wasn't hurting.
Despite his hurdles, he is still doing great with what he is hearing. Just today, he said "ow ow" (for out. out!) and "mo" for more. It's incredible to hear a deaf child begin to speak using words appropriately and not simply repeating. There was a time that I hardly thought this day would come.

Thank you for praying with us. If you could specifically pray that the infection and fluid would go away, that the implant is in the right spot, and that my sweet Abel starts feeling better I would appreciate it so much.

A year ago today, I was blissfully unaware of what the following year would bring. I was amazed that I had a one year old and a two year old. I had no idea I was pregnant with our third. It hadn't crossed my mind that Abel was deaf. I didn't know how hard this first year would be, but God has brought us through it so far and I'm grateful. I believe He is teaching all of us different lessons. I trust Him. I do.

Thanksgiving {on Abel's deafness}

This year, man. It's been a tough one. I can't say that it has been totally awful because I got to welcome the sweetest surprise baby into my life and I love him deeply. We sure have much to be thankful for. Still, I strive to be honest here and this year has not been the walk in the park we expected when we finally got to move home to East Tennessee. Looking back, I can see God's hand in all of it and his divine plan is truly what I want.

I don't know why Abel is deaf. He's not broken, but I still grieve for his "normal" life from time to time. It hits me like a ton of bricks. It comes at me when I least expect it. 'Sorry, we can't go to the park right now. We have to go to an appointment.' Little things like that get me. He's (almost) two. Now's the time to play. Instead, we spend a lot of time driving and waiting. Waiting for an appointment to start. Waiting for some other problem to arise. Waiting on him to hear consistently. Waiting on him to try to talk. Waiting for me to feel okay about this decision we made to get him cochlear implants. That's what this is about, really.

The truth is, I've never felt completely confident that this is the route we should have taken. Sure, the surgery is in and out for most kids, but my curly headed middle child has had more than his share of hiccups already. It has been roughly three months since his surgery. Since then, he has dealt with constant ear infections because the surgeon removed his tubes during the procedure. While many babes are up and running around within a few days, our post surgery days looked more like this:

He couldn't move his head off the pillow. Then when he finally did a day or two later, he was very off balance. That comes and goes. This past week, he started having symptoms of Bell's Palsy on top of the ear infections. His immune system has been compromised and now he has come down with the flu. And I can't help but think it's my fault that he's dealing with any of it. What if I had just developed my sign language more fully? What if we sent him to the deaf school so he could be around that language? What if I hadn't allowed the cochlear implants to be put in his head, would he still be having all these health problems?

There's the other side of it, too though. What if he resented me for not taking advantage of the window of time as a baby that is best for success with CIs? What if he felt disconnected from his family or his brothers because our sign language skills lacked? What if he never heard his child's voice thirty years down the road and he wondered why I let him miss out on that opportunity?

I could go on forever. Back and forth. Back and forth. I'm not called to do that, though.

In the book of Luke, it says: "Who of you can add an hour to your life by worrying?" Still, I tell myself that I will go into each situation with a positive attitude and I keep up the facade (fake it til ya make it!) for as long as I can muster and eventually end up in a puddle of tears.

Today was no different. Because he has all the issues going on, they wanted to put his ear tubes back in immediately. That procedure is pretty standard. But what was planting itself in the back of my mind was that he had the flu and is having a hard time breathing. It turned out to be a problem with the anesthesiologist, too and he refused to do the surgery. The surgeon was persistent saying that he had to have them (which gave me more to worry about in the back of my mind) and the two of them went toe to toe eventually settling on having the surgery today. I stayed back with the baby because he seems to be developing a cold and I'm nursing. I also needed to be here to get the oldest kiddo, too. During these heated conversations with the doctors helping our boy, I didn't hear from Jordan. After multiple calls and texts went unanswered, I called my sister in a panic attack. I couldn't breathe. I was crying hysterically. I just knew something bad had happened because it always seems to this time of year. I have so many people tell me I'm strong, but these moments remind me I have a long way to go. I think maybe God is slowly peeling back all the layers. Guilt, be gone. Worry, be gone. Trust in ME. I hear it, but I'm like Paul in Romans

"I do not understand what I do. For what I want to do I do not do, but what I hate I do." (Romans 7:15)

So while this may not seem like a typical Thanksgiving post, it's mine. I'm thankful that God is still working on me, that He hasn't given up on me, that He won't. I'm thankful that He is authoring Abel's life. I'm thankful for this amazing opportunity for my boy to have cochlear implants. I'm thankful for his deafness....and I hope he will be, too.

Learning to Listen

Most of you know, my middle child is deaf. I will use this blog partially as a journal for his progress because I know so many of my extended family members, friends, and even strangers are praying for him and invested in this as we are. I have felt your prayers over the last few months. As you may or may not recall, the first time he heard our voices, he was terrified.

But after the initial shock of finally hearing what was coming out of all these moving mouths, he began to react much differently to his new "ears". For about a week after activation, every time we put the processors on his head he became very still and would sit and listen to everything for the first few minutes. Now, he even asks for his "ears" to be put on by handing them to my husband or me OR he will point to the magnet if it falls off his head and he needs it re-attached. It makes me so happy to see him wanting to hear. That was one of my biggest fears during this whole process. I was afraid he would  not want this sense and for the first few years I'd have to force it on him. Thankfully, this is not the case at the moment and I'm counting that as a major blessing to us.

People often think that cochlear implants are a miracle. I agree partly. It's completely amazing that my deaf son now reacts to his name occasionally. He dances to music. He will turn when I clap! I used to bang on the walls or clap when I would try to get his attention before we knew the degree of hearing loss he had (bilateral profound) and it's a hard habit to break. Now, Abel will clap at us when he's trying to tell us something. Ha! I love this technology, but the truth is it's not just a simple flip of the switch and his deafness is "cured". Not at all actually.  With this miracle technology comes years and years of therapy. At this point, my two month old is more familiar with sound and language patterns than Abel is. He has been hearing since 20 weeks in the womb! Abel has only been hearing for a month.

The area of Tennessee that we're in is not great for hearing impaired folks who want to be aided. We LOVE his speech therapist. She's great, but she's one of the only ones in the area. It's why she chose to come here. I'm so thankful she is here, but I've spent much of the last few months worried that I wouldn't be able to provide for him the help he needs to make this new access to sound work for him. I fretted over not having an auditory verbal preschool to take advantage of. Of course as his mother, I want to do all that I can. I just find myself torn between focusing on him/playing with him to facilitate listening skills and teach language development and attending to my other small children and making them feel equally loved. It's a lot to juggle. As of now, Abel goes to speech therapy twice a week for an hour at a time. He enjoys his time there. There are so many toys that he gets to play with without other little hands grabbing at them, too. He also gets praised and lots of attention when he acknowledges hearing or attempts to speak. That hour is HIS time and he likes being the center of attention there.

Sometimes doubt creeps in and I feel as if his hearing is inconsistent, but the past week has given me renewed hope. Some days he responds to environmental noise all day and seems to ignore all spoken sounds. Then other days, he'll flip flop it and do the opposite. We are beginning to think he just is bored  with our games some days! This week he started imitating noises in a sing songy fashion so when he repeats what I just said in the same rhythm, I go crazy with pride for him. He's hearing, he's listening, and he's trying to talk! That's more than I can ask for at one month post activation.

In addition, he has said or attempted to say some words. You know I'm going to list them now. I've been waiting for so long to say that Abel's first words were x, y, and z. As parents of his peers began proclaiming their child's newest word, I always grieved a bit for the words Abe wasn't saying. He has come a long way and I know this because this week alone he has said (or attempted to say): Mama, hi, bye, up, off, and on. Incredible progress.

I'm going to call his updates "hearing stories" because we have so many throughout the day that I always want to share. Just yesterday, he began to choose the item that goes with the corresponding sound. I'll show you if you promise to ignore the powerade all over his face and my messy kitchen counter-

We're so proud of him and we're hoping to have more stories to share with you all soon!

In the mean time, we are going to keep plugging away- working with him. Two hours at therapy over the course of a week is not enough for language development. A huge part of auditory verbal therapy is parental involvement. As I mentioned before, I try to have focused play with him throughout the day but it's hard when there's another toddler vying for attention and a new baby asking to be fed. This is why I decided to create an area in his room that is just for him. I scoured the house for appropriate toys and took a trip to the dollar store for cheap play things. We've already had our first therapy session there! Kinley likes to help when he isn't feeling jealous or telling us he's "so deaf". He will make the LING sounds and prompt Abel to do the same.

As a family, we are invested in this sweet little guy. I know he will overcome his obstacles.

"In the middle of difficulty lies opportunity." - Albert Einstein