First Day of School

Backdated from Oct 4, 2012

Evan has wanted to be a Garbage Man since he was in Preschool. I keep waiting for his aspirations to change. This year, I told him we’ll make a sign every year on the first day of school to see how his signature changes and all the different things he decides he wants to be when he grows up. He said, “But Mom, I’ll always want to be a garbage man, because that’s what I’m going to be.”

Zion is enrolled in two different preschools this year. In the afternoons, she will be attending the same Speech preschool that she went to last year, and in the mornings she will go to the elementary school’s preschool program. She has a Fall birthday, so she barely misses the cutoff for Kindergarten. But I think she will definitely still be academically stimulated this year!

  {In keeping with the theme of her older brother and sister’s statements, Taryn first said“tractor” when I asked her what she wanted to be. But because of her poor intelligibility, I responded, “Doctor?” And she changed her mind in agreement. I decided to keep that answer. We need at least one child with some ambition.} :)

Taryn has been so excited to start preschool this year and get to ride the bus just like her big sister. She is attending the same speech program that Zion is in, but Taryn gets to go in the mornings. She’s been talking about the bus for months and months. I thought she would actually be scared to get on it though, but when the doors opened, she bounded up the steps so quickly I could barely get a picture of her.

Special

Three out of our Four children are now in Special Ed.

Not sure why, but our kids struggle with proper articulation. 

My husband just got after me for writing that they are in Special Ed – saying they won’t appreciate me saying they’re dumb when they grow up.

I am in no way saying they are dumb. On the contrary – they are all extremely bright. Top marks in every area. They each perform way above their age level.

My actual intention with writing that they are in “special ed.” is to change the stereotype of that label. And to empower other parents to feel no shame in its placement on their child.

In our neighborhood in Utah, there was a sign at the entrance to our street. It read: “Deaf Child Playing”.

It was there long before we ever moved in. For what child, I never found out. But after Taryn was born with a hearing loss, I feared everyone would think that sign was for her.

But so what if it was.

Who cares what people think? That wouldn’t make her any different than the person she already is.

I have to admit that when we first received her diagnosis, I wanted pity. For a few months or more I wanted people’s sympathies. Woe was me for having an imperfect child.

There is most definitely a legitimate period of grief when getting any kind of other-than-perfect news regarding a child. That is completely natural. But then, I kept getting people’s pity. Strangers would see the hearing aids on my beautiful little toddler, and say “Oh, that’s too bad.” And finally I would think, Shove it. You can keep your sympathies and your judgments and your pitiful remarks. I don’t need them any more. And she certainly doesn’t either.

Because she is perfect.

Each of my children are. All children are. Despite their limitations, or handicaps, or set backs. They are perfectly perfect spirits, in perhaps less than perfect bodies. It is simply a trial, be it large or small, to overcome; To look back on and think, No big deal.

Just because they are “different” doesn’t make them any less loved. Any less deserving.

I have three kids in Special Ed.

And I’m proud to say that.

Because I am proud to be their Mom.

Super Mom

I’ve had a few moments in my mothering career when I’ve felt like “SuperMom”. Like when I went grocery shopping with a newborn and two toddlers while feeding the baby a bottle, pushing the extra-long shopping cart, and sorting through coupons at the same time. I felt pretty super. Or when I had to keep a baby Taryn asleep during one of her ABR hearing tests for which she was hooked up to all sorts of machines, but she had a poopy diaper that was making her cranky, so I had to change her, while she sat in her carseat, still hooked up to all the wires and doohickies, and I did it, and kept everything in its place, and she went back to sleep and I felt super super.

Today was a super mom day.

We had the opportunity to go to the Maricopa County Fair for free through Taryn’s School for the Deaf program. This is a HUGE county fair, not like our little county fair up in Utah (where we lost Taryn last year). I wanted to take my kids. I told them all about it and we’d been looking forward to it for weeks.

But suddenly Greg had to work. Which left me a single Mom sporting three rambunctious children and a needy newborn. But I decided to be adventurous and try calling forth my super mom skills.

I was pretty nervous about it though. So before we left, I fixed little notes to the backs of each of my children’s shirts.

Just in case. :)

Well, we had a great time. The biggest trouble came with the fact that the majority of my kids were too short to ride on any of the rides. That was disappointing. But there was still lots to do once the tantrums subsided.

 

My hands got pretty full during lunchtime when I tried to feed all the kiddos, including the baby. Taryn took this opportunity to hop on stage and dance along with the live singing entertainment – crackers in hand and all. She is still, as always, our little dancer.

  Our newest addition was a perfect little angel and slept through all the noise and bumpy stroller rides and screaming and mooing and cockadoodledooing, only to wake up just in time for lunch and then go right back to Havenous dreaming.

And our oldest somehow decided that being tall enough for a ride meant he was also big enough to put his arms up in the air on the downhills. Where did he learn that from? 

The adventure ended without incident and with a smile on everyone’s face. They all fell asleep in the car on the way home, so it must have been an exciting activity.

I sure felt pretty Super.

And tired too.

Perspective

Spent the day at Primary Children’s Medical Center.

Nothing like spending some time there to make you count your blessings.

Watched baby girl’s eyes roll back from the sedatives for her CT scan.

Not a pretty picture.

But glad that was all we were there for.

Feeling so blessed to have such healthy, alert, and active children.

 

 

More on the long and winding trip to come, when I have some time and energy to sit down and write.

Aids All Around

What does Crayola Model Magic and little bit of pipe-cleaner get you?

A matching family of hearing aid wearers.

Can't see Greg's very well? Well that is because his are the real deal and very discreet. He has had a hearing loss since childhood. We are confident that Taryn's loss is similar to her Dad's and shouldn't affect her too profoundly because of Greg's experience. But it is still very apparent after asking people to repeat themselves on a daily basis that Greg could benefit from his own set of hearing aids.

When he came home sporting his goods, the other kids wanted their own too.

Now Evan says he can't hear without them. :)

This is HUGE!

It may seem like a small feat, but I guarantee you that this is HUGE, and very exciting.

Taryn went the entire day without a hat to guard her hearing aids from her hands and mouth. We even went on a field trip to the Children's Museum where there was a lot of running around to be done and plenty of opportunities for little hearing aids to fall out. At one point, one aid did come out from behind her ear, but she came right to me, showed me the problem, and stood so still while I fixed it for her. She is such a big girl!

We are done with hats! I'm afraid most people in our neighborhood think she doesn't have any hair because of them. Now I get to show off her natural curls and not have to worry about outfits that match the few hats we have. Hallelujah!

Baby Signs

Because of Taryn's hearing loss, we have the opportunity to participate in the Utah School for the Deaf Services. While we know Taryn will function perfectly as a normal hearing child, we have decided to use the services for which we qualify to give Taryn every advantage we can during this age of rapid growth and development.

So each week we have two service workers come to our home. The first is a hearing specialist that teaches us about her hearing loss, how to maintain her hearing aids, how to decipher an audiogram, how to teach her to listen, and also how to use ASL with her. Her name is Paula, and we love her very much. The second worker that comes each week is our deaf mentor. Her name is Jen and she is amazing. She has been deaf since she was a toddler and she teaches us how to communicate in ASL.

Learning a new a language is at times overwhelming. We know that Taryn will not need ASL in order to communicate, and sometimes it feels like we are wasting our time. But we feel that we were given this opportunity for a reason and that ASL will enhance her language. It has helped tremendously in our communication with eachother.

She is 19 months old and already says and signs over 50 words! I couldn't believe her progress until I started writing down each word she says. I was astounded.

Here are some photos of a few of her signs. Capturing a baby sign on a less-than-high-tech camera is pretty difficult, so the images are understandably not very clear. I took these a while ago and have tried to take more on a day when she is actually wearing her hearing aids so I don't look like such an irresponsible mother, but after this photo shoot she has refused to do any sign language for me while a camera is pressed to my face. She is a stubborn one, that's for sure! But pretty darn cute and super darn smart. (I can say that cause I'm her mother.) :)

Good News is Bad and Vice Versa

The Results are In.

Taryn's Middle Ear structure is Perfect!

Good News right?

I suppose.

But at the same time, I was hoping to hear that she had a malformation. Something obvious that, with a little surgery, could be repaired and thereby restore her hearing.

It's a strange feeling to want bad news.

Now, we are left with one more possibility of hope. In order to more exactly see the tiny little bones in her tiny little ear, we can elect to have her undergo an exploratory surgery. But this can't be done for about five more years. Which, in a way, is fine with me. I can do without seeing my little one sedated and knocked out again. Those images prior to her MRI still give me nightmares.

We have a while before we have to cross that road. I suppose I should just get comfortable and settle in. I wasn't expecting this ride. I'm not sure where the ticket we were given will take us. But I am sure I can find joy in the journey. If not, then what is the point?

Improved Hearing Tests

Her hearing is what it is. It is what it always was. But as she gets older, the tests become more accurate. It's not that her hearing is getting better, she is just getting better at responding because of her age.

I think back to the first set of comprehensive tests we did. She was only two months old. A moderate/severe loss. She won't be able to hear any speech. The devastation I felt. The questions. The unknowns. There are still a lot of those questions and unknowns, but the future is looking much brighter and not nearly so unpredictable.

Last month I took her in to a new audiologist. The waiting list to get in with her was quite long, and we had been anxious for this for a few months. I held Taryn on my lap as I have for the others and I would beam my proud smile when she would respond to the sounds I could hear. But then, just like always, there were some she couldn't hear. And I wanted so badly to squeeze her hand to get her to turn her head to the speaker from which the sound was coming. But I held back. Sometimes we have to do that as parents. I am learning that earlier with this one than with my others.

The results of the test came back slightly better than the last one we did. So her hearing aids were adjusted and I noticed her eye-squinting from loud sounds go away. I was glad the volume was finally more comfortable for her.

A few weeks later I took her in for a follow-up. This time they tested her in the sound booth with her hearing aids on to make sure they were adjusted appropriately. And this time, my proud and beaming smile was pasted on my lips the entire test. And there was never even a temptation to squeeze her hand. She did perfectly! Even at only 5 decibals (a super soft whisper), she turned her head to the sound.

The audiologist was very impressed.

Of course, when I called my husband after the test to tell him the good news, he gave a response like, duh, that's what the hearing aids are for. Yes, of course, but that isn't very often the case.

Everyone's successes are measured differently - depending on the subject and depending on the adminstrator. I'm learning that.

Next is Taryn's MRI. We've been waiting for this since June. It was supposed to be the end of Sep, but she apparently got something last minute that looked like measles (though I don't think it actually was), so we had to postpone it a month. Oct 25th. Let's hope she stays spot free.

Many more of our questions should be answered after that date.

Hiatus

Time to just sit down and write.

There's been a lot on my mind. I just haven't written. And now I can't believe that September completely escaped me, and to tell you the truth, most of the summer.

I was spent. Emotionally, physically, spiritually. Just done. I didn't want to add anything else. Even if it was writing. Something I love to do. Something that frees me. I play the martyr a lot. Women are good at the. I'm good at that. And I didn't think I even deserved to be freed. Even by a few minutes of pleasurable happenings or necessary venting. I was down. That place I go to every now and then - isolating, empty, emotionless.

I've shied away from other people's blogs and lives and have been a terrible blog friend as well as real one. So for anyone that has been disappointed in me the last few months - I am sorry.

I started a handful of entries throughout these months that just never got completed. And I composed dozens more in my mind. None of which I can even remember now.

But I can't just jump right back in. It won't feel right without documenting at least a little of what's been going on the few months I've been on hiatus. The good and bad.

8 lb weight gain
jealousy - consuming jealousy
soaking up the sun
moving house or not
feeling numb
empty
nothing to give
wanting to go back to work
almost applying for a job then feeling selfish
demanding
family problems
my Dad, siblings
Mom's birthday
future baby planning
trying to enjoy the now
choirs
finding time
spread thin
Labor Day with family
activities
DI date resulting in strip battleship
using time wisely
fear of a better life
wiping bums all day long - nearly even wiped my husband's during a brief moment of rote insanity
improved hearing tests
bout of measles possibly
rescheduled MRI
auditioning for and making new choir {barely}
Brigham City Peach Days
realizing I need to change my attitude - about music, about callings, about talents
school starting - two kids gone
being spoiled
more piano students
Constitution choir performance
weight loss challenge
Fall drive up to Logan temple
piano students moving
inadequacies
wanting to be involved
elected Head Start Vice-Chair
feeling unintelligent
wanting to give and do more
running here there and everywhere
my oldest is only 4!
what is in store for the future...

---------------------------------------

These are obviously very brief descriptions as I try to get caught up, but if there is something anyone wants details on, I will gladly expound.

I've done enough procrastinating. Even if I don't feel like my life is worth documenting, my children's lives are. They deserve that.

Hopefully now I can begin again.

How is this Possible?

One year already.

What a year it's been. So many changes. So many ups and downs. You've tried us, and strengthened us, and made our hearts soar.

I've never been one to put a label on a baby's personality. There is so much time, so much development yet to occur before speculation as to what a child might be like when they grow up can accurately be assessed. So I bite my tongue or chuckle silently when I hear other mom's brag about how smart their newborn is or that their 18 month old is most certainly going to be a teacher when she grows up. {smirk and sigh} Just let them be what they are - babies. That should be their label. Leave the judgments and the dreams of professions for the future. Enjoy the now.

Well, that's what I used to think. Until I met you.

And Taryn, while I don't know what you will be when you grow up, I do know that you can be anything you want. And you will succeed. For such a tiny little pumpkin, you are strong. So strong. And determined. And dare I say, defiant. And I am certain that those qualities will help you accomplish any goal you set for yourself.

And if I were to just put one tiny little label on you, then I will indulge myself with the thought that you will be a dancer. You can find the beat in the tiniest of sounds and your shoulders immediately sway and shimy. Be it a simple melody whistled unknowingly by a passerby, or the sound of your brother counting to 30 during time-out, or the hum of the roaring waters in the dishwasher, or the click and squeak of our rocking chair, you dance to it. And your sensitivity to rhythm has opened my eyes to the music that constantly surrounds us. The world is more beautiful because of it.

The world is more beautiful because of you.

Happy Birthday Taryn!

{your very lucky Mommy}

Second Opinions

I had thought Second Opinions were for people who were High Maintenance. I'm glad I'm High Maintenance.

Taryn's audiology results came back much more consistent with our own intuition.

A mild loss.

Now that makes sense.

Poor little thing has been living in a rock concert the past few months, with her amps turned up so loud.

Now what we need to look into {that even baffled the much-more-experienced audiologist we went to see for a second opinion} is that the results from testing Taryn's cochlea came back completely normal. So that means there is something wrong in her middle ear that is distorting the sound before it reaches the cochlea and is then transmitted to the brain. Perhaps this "something" is even fixable.

"Fixable" is a very HOPEFUL word...

A Mother's Instincts

My head has been swimming.

Friday night we went to a "Town Hall" meeting for the School for the Deaf. A new Program Director has been hired and a lot of changes are in place to make Utah's program - that many parents considered to be the best in the nation - to be one that parent's are at an uproar about and most staff members no longer want to be a part of.

It was intense.

You see, they are narrowing the choices of techniques for teaching our children from eight, to two. And the technique we had chosen carefully to learn and use with Taryn, is being eliminated.

Some parents were crying from frustration, some were yelling, some interrupting. The deaf parents were signing with hard deliberate strokes and hand slapping to portray the hostility in their words, the Director was defensive, most were confused, and I sat brimming with an animocity and anger I didn't know I possessed. It was foreign to me. But afterward I put a finger on it...

MOTHER BEAR

... It was my mother bear instinct. It was coming out in me, just as it was in all the parents sitting in that room. And we were ferocious.

I would not have wanted to be the one in the Hot Seat. She looked scared.

The rights we have as parents were being stripped away from us. The rights we have to provide what is best for our child. What is in their best insterest. The best education.

And while the malice I felt was uncomfortable and alarming, it was not misplaced. The words of every other parent in the room confirmed to me that it was relevant and even necessary.

And our opinions were voiced. But I don't know that they were heard.

The meeting was adjourned unresolved. And I left feeling very confused.

So my head has been swimming.

What's a mother bear to do?

Hopes

I had my hopes up. I didn't know I did, until I got the news.

There was so much anticipation leading up to her next hearing test. It was the first since she was a newborn, and they would test her hearing in a sound booth where she could turn to the sounds on her own, instead of being hooked up to machines to test it. I had been waiting for this test. But the day before it, she got her double ear infection. And for four weeks after that, she still had fluid in her ears. So, for those four weeks (not to mention the four months before that) I got more and more anxious.

She didn't wear her hearing aids for those four weeks. So I tried to pay attention. She would turn her head to her siblings' yelling. She would turn her head to a dog barking. She would turn her head to the garbage truck outside. Would she turn her head to the gently spoken sound of her name? The flash of her bright blue eyes confirmed she could hear it.

This hearing stuff must just be a bunch of malarky, I cautiously thought to myself - for I knew I did not want to get my hopes up. Sometimes hope can be inspiring. But sometimes it can be dangerous. I already knew that.

But then I met someone that dared me to hope. We were at the zoo and Taryn was finally better. Her hearing test was in two days. She had her hearing aids on with a little bonnet to hold them in. A mother approached me and asked if my baby wore hearing aids. Her one-year-old daughter did as well. But just yesterday she had a hearing test, which she passed!* So she didn't have to wear her hearing aids any more. Really? My daughter has her's in two days. Maybe that will happen to us too, because I swear she can hear just fine.

Two days later I confidently held Taryn on my lap in that sound booth. I beamed with each turn of her head. But sometimes she didn't turn. I already knew that wasn't the only thing audiologists look for during a hearing test. If she blinks her eyes or in any way changes what she was doing, then that is a sign of hearing something. She was on my lap so I couldn't see her eyes. Did they blink?

The test was done. I sat down with our audiologist for the results. With her hearing aids on, Taryn can hear just at the lower end of normal. So in a few more months we may want to turn the volume on them up a bit. Without her hearing aids, the results are basically where they were when she had her Auditory Brainstem Response Test. A moderate hearing loss.

I listened. Not too surprised. This is what I expected to hear. But as I drove away, the realization set in that it was not at all what I had hoped to hear. I wanted that miracle. The one that the other mother got. I wanted the worry and the unknowns and the tests and the appointments and the weird looks and the pity and the struggles and the stress and most of all the worry of what my daughter's future holds, to be gone.

I wanted the easier route. The familiar one. Then I realized that this route is not that much different from the one I've already known. My worries for Taryn are the same as any parent's for any child. Will she have friends? Will she be made fun of? Will she have developmental delays? Will she be successful? Have a good self-esteem? Be confident? Be a good example? Obedient? Likeable? Make good choices? Will she know that she is beautiful? Will she know she is loved? Will she know that she is in every way a perfect, and perfectly loved, daughter of God? And will she believe it?

I have already asked myself these questions. Already had these worries. Still have these worries. They're the same ones I have for all my children.

And just as my worries are the same, so are my hopes.

Mr. Reeve, our dear Superman says, "Once you choose hope, anything is possible."

Maybe hope isn't such a bad thing after all.

* After talking to our hearing specialist that comes to our home for weekly visits with Taryn, I learned that the cases of a child's hearing actually improving are extremely rare. The little girl I met had other developmental handicaps (it was something similar to down syndrome). In a case like that, her hearing loss was caused by a delay in the development of her central nervous system and the brain's ability to process sound. In that case, it is not uncommon for a child to gain her hearing. It was never lost. Just needed to be developed. I wish I had known that before my thoughts got away from me. But it made me extremely happy for that other mother. One victory in her war that is sure to have many battles.

New Discoveries

So here are some new discoveries we've made in the last couple days:

Taryn loves to hear. She has an uncomfortably happy look on her face when we are fumbling to get the hearing aids in. But she is just so happy about it. So wide-eyed. And something she never knew before - her baby toys actually make noise when you shake them. Who knew!?

The first day when Greg would be playing with her, she would occasionally burst into screams of terror for no apparent reason. After a few times of this, we realized that whenever Greg speaks to her in a low voice she becomes terrified. So funny. I guess she's not used to that frequency.

Her right hearing aid squeals - so annoying. But she doesn't seem to mind. In fact, I have noticed that she has started to try and match her own squeals with that of the hearing aid. We're getting that fixed today though. It's driving me crazy.

When we were told a couple months ago that she could not hear any speech, I was skeptical. I knew that whenever I talked to her, she would coo and gurgle right back and seemed to hear exactly what I was babling at her. The audiologist said that is normal behavior for any happy baby regardless if they can hear, but that they eventually out grow it. I was still skeptical. But I've noticed that just within the last three weeks she has stopped babbling and cooing. She did still make playful squeals, but she didn't gurgle and coo back at us like she used to. Guess whose cooing again now? Yup, our dear little hearing girlie.

She has become very skittish and it's hard to keep her attention. Her head is constantly bobbling this way and that to follow and find all the different sounds she hears. And believe you me, our house has a lot of sounds. It's loud over here.

I asked our audiologist what the percentage is that Taryn can hear on her own. I have heard of others having 50% or 25% hearing losses, but I had never been told a number like that. The audiologist said she didn't like to use numbers. Percentages relate to how much speech someone can hear. In Taryn's case, she can't hear any speech, so it would be a 100% hearing loss. But then that gives an inaccurate measurement, because she doesn't have a 100% loss, she just can't hear speech. Holy Smokes! I was glad she hadn't given me that percentage at the beginning. A "moderate hearing loss" sounds much more hopeful than a 100% hearing loss.

FYI about her hearing aids - The mold is clear with silver and pink sparkles. The aid itself we will be changing to a baby pink in a couple weeks. (They don't offer flesh-colored for some reason. But we decided a soft pink would look less conspicuous than silver. It's a hard decision to make because it is something she will potentially have for ten years!) The mold will be changed every 3-4 months as she grows and hearing tests will continue to be performed every six months to determine if her loss is degenerative or not.

So the best part of it all?

Watching her captivated face as I sang her lullaby and she heard it for the first time.

Absolutely magical.

The Deaf Can Hear

***pictures courtesy of Elisa Mikkelsen. Thanks Elisa!

Anticipation

Tomorrow she will hear my voice for the first time
And I am so excited!