Thursday, December 4, 2014

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.

Tuesday, December 2, 2014

Serenity Now!

Allow me to tell you what lead me to a crying fit in the parking lot of speech therapy today. I woke up feeling quite ill so I decided to skip the workout I had planned (almost always a mistake). Not having that time to myself set the tone for the day, I think. As always, Abel had a few engagements we had to attend. His case worker and therapist lady (for lack of better terminology) were set to come over. I'll just let your minds wander to the chaos that ensued that had me yelling (literally) half way through the appointment "Serenity now!"
I doubt either of them are Seinfeld fans so they probably just think I'm nuts and well, I guess I am.

Kids fighting. Abel taking off his ears. Pulling off ornaments. Bumping into Christmas trees. Merit crying. Refusing to eat. All of them. Whining. It was just another day in the life, really.

Then J calls me to say he won't be taking Abel to his appointments tomorrow (which means, of course, I will be driving at least 6 hours tomorrow with at least two kids who don't particularly care to be left in a car seat that long...AGAIN).

I briefly consider jumping off a bridge. Try to pump instead. Only got one ounce.

I drive to speech. In the rain. With puke on my pants.

Afterwards, there's a party for all the kiddos in speech therapy. I thought it started at 3, though. It did not. I decided to wait for it to start until Abel decided he'd had enough and started throwing a toddler tantrum on the floor as I attempted to call Vandy to reschedule the appointments because HELLO-HOW-CAN-I-TALK-TO-DOCTORS-WITH-TWO-UNHAPPY-BABIES?! I can't even talk on the phone with one. The girl on the other end of the line tells me that the doctor we need to see is only there two days a week...and by the way, he won't be there at all next week. How do people with jobs do this? No, seriously...I want to know. I can barely keep my head above water. Because she has no appointments, I decide I just have to suck it up and go because Abel is still in pain. He cries for long stretches at night and in the car. He pulls at his ears that are red hot. And my happy child has been grumpy for a long time now. I hate it.

I hung up the phone and high tailed it to the car. I push the button to start it. I'd just have to make my apologies later for missing the party....but what do ya know? Key not detected. Jordan stopped by earlier to bring me a rescue coke and attend speech with us and accidentally took my key home with him in his pocket.

Cue tears.

How was your Tuesday?

Friday, November 21, 2014

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.

Thursday, November 20, 2014

3 Month Letter

Dear Sweet Merit,


Happy 3 months to you. I suppose I should start with thank you! Thank you for being such a good, happy boy. You've made the transition from two small kids to three much more manageable than I ever expected. I'm delighted to celebrate three months with you on the outside and in my life officially. From the moment you were born, I've been smitten. You've been a wonderful blessing to me and I'm so thankful that thus far you've been an easy going child. You've been smiling a lot more this month. It's not so hard to make happen. I simply get close to your face and start talking and you are quickly "talking" back and grinning. I love it. You've been grabbing on to toys that dangle above you when we lay you on your play mat or in your bouncy chair. You will also explore by rolling on your side, but that's as far as you care to get. You hate tummy time (so do I!) and you come by that honestly because you're brothers weren't too fond of it either. They are pretty good to you. They are jealous at times, but both quick to help you with your paci or pat your sweet little head. We all love you so much! Daddy keeps telling me how you two have bonded this month and every time it's time for you to go to bed, he says, "He is a cute one, isn't he?" You are. The cutest.

Love you to the moon and back,
Mama

P.S. You were adorable last month, too. I just never wrote you a letter to tell ya!


Sunday, November 9, 2014

Tender, Tough, and Strong


It seems like there's hardly time to stop and write here. When I think about what keeps me grounded most, it's time in God's word, exercise, and creating. Usually that creating is writing. I need it in my life. There has been a lot of stress this past year and the busier I get, the more out of my control everything feels. The kids are at trying ages. Abel is in that wild stage of the terrible twos and Kinley is a strong willed, whiny three year old. I love them and they're fun, but they also have a way of making me want to pull all my hair out. Merit is still at the sweet baby stage that makes me think I could have a few more kids if they were all like him. I know I'll be singing a different tune in about a year! Anyway, these days are long and I often feel hopeless....like I'm bad at my role as Mom.

But I know I'm not. 

I know I'm not because I think about it all the time. Is this what God wants me to do with my children? Is this how I'm supposed to treat them? Reprimand them? Should I teach them this? Or that? Or both? 

How, how, how do I do this? No, really- HOW?


I look back to life with one and it makes me smile. I thought Kinley was a difficult baby (he was!) but I had no idea what was headed my way. Handling three babes three and under is a whole new adventure that I felt ill prepared for. Now that I'm in the trenches, there is some clarity that one day the pitter patter of little toddler feet on the hardwood or the newborn cries of my youngest won't wake me up in the morning. I know I'll miss hearing Abel jumping in his crib in the early morning and then giggling in his room all by himself. These boys are my life.

They are. I don't care if I've lost a little of myself because I'm pouring as much of me as I can into them. I'm trying to use a strainer, though. A little of this patience and none of that anger. It's such a hard, thankless job raising kids and I know as a sinner I'm bound to screw up daily. But just as God picks me up, forgives me, and loves me when I veer off in the wrong direction, I'm the same with the boys. I put them down at night and feel totally and completely emotionally tapped out. I can still easily recall all the  mischievous happenings of the day yet as I watch them sleep there's so much love in my body for them. I can't explain it. They make me want to be better for them. 

I was reminded of this song when I saw it on Good Morning America last week. The guy who wrote it performed it in my hometown and dedicated it to me when I was pregnant with Kinley. I think it means even more to me now that I know how incredible it is to be mama to three wonderful little boys.

Cue more tears. 

Thanks for listening, y'all. I know there's more of you out there who feel like I do. I make it a point not to sugarcoat how tough this job is because so many of us pretend to have it all together. I promise not to do that. Is being a parent difficult? Yes-in so many ways. It's difficult if you care...and I do. But these three boys have changed me, God is changing me, and in that regard, I couldn't be happier. I never knew I could love like this.

 "Hush now baby. Don't you cry. Because there's someone down there waiting whose only goal in life is making sure you're always gonna be alright- a loving angel, tender, tough and strong. It's almost time to go and meet your mom."

Sunday, November 2, 2014

Halloween 2014

Typically, I'm a bonafide Halloween nutcase. Elaborate costumes are planned months in advance and I spend time carefully selecting and making all garments and props. This year? Well, I had another kid to think about--making the number of costumes to create climb to FIVE. I started feeling as if I shouldn't go all out because we didn't have the money to spend on such things. I was getting a bit down because I love Halloween so much. I always have. But I started thinking maybe it's time for me to grow up.

I quickly came to my senses and reminded myself that, of course, I was going trick or treating with my kiddos. It's quite possibly my favorite day of the year and I didn't want to miss it just because I was having a hard time managing to get my act together. I decided I wasn't SuperMom, but I could totally be her for Halloween. I thought, "How perfect would it be to all be superheroes in honor of Abel's first hearing Halloween?" I set to work making SuperK and Bionic Boy costumes.

I made them masks, capes, and shirts but of course it didn't all get worn. There's always someone mad on October 31st and it's almost always a toddler. This year I have two toddler/preschool aged crazy people so they took turns refusing garments, pictures, and/or having to {gasp} walk to retrieve their candy. It's a hard life, you know?
Anyway, we had a great evening. Perhaps my favorite costume this year that I threw together at the last minute was baby Merit's. He made the cutest Superman.

Jordan pulled off a spectacular superhero last minute costume, too. I thought my SuperMom threads looked pretty dang good, too. Total cost for this entire family of five costumes? Less than $20. I hope I never buy store bought costumes.


The boys' babysitter joined us in our trick-or-treating. I just love her. She's wonderful with the kids and I feel like I can just sit and talk to her like a friend. I know God blessed us when He sent us her. I was glad to have her helping hands, too when Abel decided that all he wanted to do was plop down on the road and dig into the chocolate. It proved to be quite a task to carry Abel on my hip while wearing Merit on my front. Jordan was busy chasing after Kinley who was excitedly running house to house and thanking all our neighbors for their generous candy donations. Then it started raining. That cold rain, you know? We hurried home after hitting a few houses and built a fire and ordered takeout.
It was a great day.
 
What costumes did you come up with this year?

Friday, October 24, 2014

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

 
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