Another year, another birthday

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We celebrated baby Bette’s birthday while we were away on Spring Break. Except she is not a baby anymore. Not by a long shot. But I will let you in on a secret, if you promise not to tell anyone…. she will always be my baby.

I decided not to throw a big party this year. I didn’t want our days at the beach focused on preparing for a party. And I didn’t want to get sucked into any big craft projects and become preoccupied with getting them done. I thought we should just celebrate quietly, as a family and with a few friends who might be around.

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Of course, having a small party didn’t mean we didn’t have a lot to celebrate, because we definitely did. Bette has made astounding progress the last few months in her language development. I am continually surprised by new things she says – actual phrases and sentences. Many things she says are still unclear, but more and more of what she says makes sense. She has made leaps and bounds from where she was one year ago, when all she did was yell non-stop. There is still a good bit of yelling, but there is a great deal of talking too.

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Not having a big party gave me a chance to soak up my last few days with Bette as a two year old. Because the reality is, I may never have another two year old in my house again. I don’t know what the future holds for our family. And I don’t know how God may or may not choose to expand our brood. Being able to have more children is not guaranteed.

I may never have another two year old in my care again. I may never have another two year old to play with, cuddle up with, pull into my lap, or feel nestled into my neck. So during the last few days before Bette’s birthday, I wanted to soak all those moments up with her.

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It probably won’t surprise you that the day after Bette turned three years old, she woke up and was the exact same little girl as she was the day before. She didn’t change overnight into a completely different child. She still gives me the same hugs and kisses. She still loves the same things – dresses, shoes, baby dolls, and barbies. She is just a little older. And she is growing older, every single day.

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At times, it makes my heart hurt so much – this progression, this marching forward of time that never stops. Sometimes I have to stop and take deep breaths because I remember that my girls will actually leave home one day and that all this will be over and I have to literally fight back tears. Because despite being so spent at the end of every single day that I just want the day to be done with, the shades pulled down, the kids in bed, and the noise stopped – I will miss my babies terribly when they are gone.

 

When the most painful things are the greatest gifts of all

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Bette has been in a big girl bed.

For awhile now.

She adjusted pretty quickly.

And loves her new freedom.

 

At night, she loves for us.

To lay down with her.

After we tuck her in.

And turn the light off.

 

One night.

As I laid there next to her.

I pulled her pajama sleeve up.

And rubbed the inside of her arm.

 

Up and Down.

Back and forth.

Making sure to get the crease.

And inside of her elbow.

 

I rubbed it lightly and gently.

With the tips of my fingers and nails.

When I finished with the first arm.

Bette had me rub her other arm.

 

Then she pulled my sleeves up.

And began to rub my arm.

Trying so hard.

With her little chubby toddler fingers.

 

When she finished she pulled my sleeves down.

And we laid there.

With our heads together

And curled up.

 

I breathed her in.

I stroked her soft, silky curls.

Her head tucked under my chin.

And held her little soft body close to mine.

 

And in the silent darkness.

She was so happy.

And content.

And peaceful.

 

And as I laid there.

I was again reminded.

That the hardest things in our lives.

Are sometimes the greatest gifts.

 

A year ago.

I was at my wits end with her.

My nerves were frayed.

I was exhausted and overwhelmed.

 

But now a year later.

We are in a completely different place.

And this child who used to wear me out.

Has become something totally different.

 

She has become a gift.

One of the greatest gifts I have ever received.

In my entire life.

Deafness and all.

 

Of course.

She was always a gift.

And I knew that in my head.

As every mother does with her children.

 

But I didn’t think that in my heart.

Because my heart was tired.

And worn out.

And broken for so long.

 

You hear the parents of special needs children.

Say what a gift their child is.

And I used to not understand that.

It never looked like much of a gift.

 

From the outside in.

It looked like a lot of work.

And a lot of struggle.

And some days it is.

 

Being the mother to a deaf child.

Is the hardest thing I have ever done.

As is this journey we have taken.

From deafness to hearing.

 

But this journey.

Is also the greatest one I have ever taken.

And this precious child God has given us.

Is also one of the greatest gifts I have ever received.

 

And I am so thankful.

That sometimes in God’s economy.

The most painful events in our lives.

Can also be the greatest gift.

 

The things we think.

We will never get over.

The things we think.

Might break us in two.

 

Those are the things.

That are shrouded in the mystery of God.

But also where He is working.

The deepest in our lives.

 

We have to trust.

That God knows what He is doing.

And know that even the most heartbreaking thing.

Can turn into the greatest gift of all.

 

Monday Morning Hilarity

Hello friends! Not to much to report from here. Except that it is Valentine’s Day week and we are rolling toward it. Lilla informed me today that we had better get going and decorate the house (decorate the house?) and make some cards. I am not sure who we are making cards for since the number of kids in her class equal the grand total of 1.

It sounds like I am going to have set aside my phobia of all things craft and get into the spirit of things. I might even have to enter that circle of hell I like to refer to as Michael’s.

Please. Pray for me.

But I did want to leave you with one little piece of hilarity that took place over the weekend.

The time: Saturday night.

The setting: our favorite Mexican restaurant – the one I swore I would never again take my kids to again after our last nightmare visit for fear of being banned.

The purpose: to eat some really good food – because for the past two weeks Jay and I have been following the South Beach diet and we were starving and absolutely could not eat one more piece of plain protein. Our hunger overpowered our reason and critical thinking skills.

The result: we had a really delicious dinner and the girls were surprisingly good. Except that Bette did get her first taste of restaurant salsa. Which was apparently very hot and spicy. And she had quite the reaction.

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Wait, what is this I am eating? I am not sure I like it.

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This is kind of spicy.

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Crap! I hate this stuff!

She was fine once she chased the salsa down with her milk. But she had had her fill. She didn’t go anywhere near that bowl of salsa the rest of the night.

Happy Monday!

Praying in Circles

I realized the other day that we are almost there. Not quite. But almost.

Bette’s hair is almost entirely, just about, give it a few more months, covering her cochlear implants.

Which is not something I have been impatiently waiting on. I knew it would take a long time. I mean, she was practically bald until she was 15 months old.

But when we made the decision to get her implants, it was comforting to know that one day, because she is a girl, they would be undetectable.

Boys don’t have that luxury. Their cochlear implants are always visible. If I had a boy, I would probably give in and let him shave his head or get a mohawk so he could look fierce and other-worldly in his implants. If you can’t hide them, you might as well have some fun with them.

But with girls, once their hair has grown over them, you would never even know they were there. And pretty soon, people won’t be able to see the white magnets on her head. Or the pink covers tucked behind her ears. And they won’t be able to see the blinking green light that indicates her implants are on and working. Which I swear to God makes her look like Lando Calriziani’s mute assistant with his blinking green headgear in the Emprie Strikes Back. Especially in the dark.

Which makes me so glad for her. Because it is hard being different. All kids want is to blend in with the crowd. Particularly in junior high. No one wants to stand out. Because if you stand out, you invite ridicule. And no one wants to be ridiculed.

I am glad that when she gets older, if she wants her implants to be hidden, she will be able to make them disappear under her hair. If she doesn’t want to stand out, if she doesn’t want people to stare at her, if she doesn’t want to be the one in the crowd who is different, she can make her implants invisible.

But one of the deepest desires of my heart for her, as she grows and learns to navigate life, is that she cares not one bit that she is different. I pray it makes absolutely no difference to her all.

I am praying already that she would grow into a tween and teenager completely comfortable with who she is. I pray that her deafness does not bother her. And I pray that she is secure in knowing that God created her perfectly just the way she is.

And I am praying that God instills in her a spirit of supernatural invulnerability to the ugliness and unkindness of others. No matter what other people say, or how rude they are, or insensitive, it just rolls off her back.

It is a tall order. It would be nothing short of a miracle. I can’t even think of a single tween or teenager I know, who doesn’t have a disability, that is quite as secure as I am hoping Bette will be.

But we have a great big God. And a loving Savior. So I am going to pray big things. Anything less would be an insult to Him, I think.

I am going to circle Bette in prayer, for days and months and years, and then wait expectantly to see what the Lord does.

Because He is always good. And He is always faithful. And He loves my sweet precious girl even more than I do.

 

A Good Ole Throw Down

Sweet Bette has been in school for about six weeks now. And people have kindly been asking us, How is she doing? How is it going?

And the simple answer is that things are going great. Bette is doing so well. And we are so pleased with the progress she is making with her language.

But that was not the case at the beginning. In the beginning, we were not pleased. And we were not happy. And it started on the very first day of school.

I took her the first day school full of hope and optimism. After six long months of being stuck at home with a child who yelled all the time, we had made it. She was finally in school – exactly where she needed to be – with other deaf children her age – who were all learning to hear and speak together. And she would be in school most mornings, giving Lilla and I plenty of time each day to get her work completed and out of the way.

Everything started out completely normal. I dropped Bette off in her new classroom, met her teachers, and then went to what I knew would be a lengthy parent meeting. At one point, a microphone was passed around so each of the one hundred parents in the room could recap their summer. The thought of standing up in front of all those people terrified me. So I escaped to the bathroom and stayed there as long as I could. After 20 minutes of hiding out, I figured my turn had passed and it was safe to head back.

On my way, I ran into another mother, whose child I thought would be in Bette’s class this year. But her daughter moved up to the full time program. And she was so glad her daughter would be in six hours of school a day instead of two hours. Um, excuse me? How long is the class Bette is in?  Two hours. Are you sure? Pretty sure. It is only two hours? Yes.

I almost threw up. Because I was absolutely sure, without a shadow of a doubt, her school day was a full three hours. Her camp this summer was three hours a day – 15 hours a week – so I assumed school was the same.

And just so you don’t think we are totally stupid, the hours were never written down anywhere. Definitely not on the contract we signed last spring. We have a copy. We checked.

I excused myself and headed straight to the administrators office. It only seemed fair to double check that this new information was correct before I flipped out. The secretary confirmed yes, her school day is only two hours.

I walked outside to playground and called Jay. I tried to not get upset. I tried to hold it in. I didn’t want to overreact. And I didn’t want to cry. Because it is obvious for hours afterward when I have been crying. I get red and blotchy and puffy. It is not a pretty sight. I didn’t want all the other parents to see me have a meltdown during hour two of day one of the new school year.

As soon as I began telling Jay the whole story, I started bawling. On the playground. At Bette’s school. On the first day. It was ridiculous.

I felt like the wind had been knocked out of me. Because for six months, I had been holding on. Holding on until Bette started school. Not to mention, I had created an extensive homeschooling plan around Bette’s school hours. And I structured all our activities around when Bette would be in school.

And in the first hour, of the first day, it was all shot to hell. My grand plan completely fell apart.

Jay was not happy with the news, but did his best to calm me down. Once my borderline hysteria subsided, we agreed to look at everything, all the numbers and the hours and the cost, that night. And I made it through the remaining time at school without blubbering like an idiot.

I cried a lot for the rest of the day. Once I stopped crying, I was just mad. Really, really mad. Partly because Bette’s stupid school hours were never written anywhere for us too see. Partly because I wasn’t sure we were getting a good value for our money. But mostly, I felt like Bette was getting ripped off. She wasn’t getting enough hours she needed for speech therapy.

That night, we talked for a long time, about what we should do, and would doing anything even make a difference? Jay didn’t think it would. He knew from a business standpoint that the school’s budgets and schedules were set.

But I was adamant. We were going to raise a ruckus. This needed to be addressed and we were going to address it.

So we came up with a plan of attack. Jay would deal with the business office and I would talk with the director of Bette’s school.

I almost felt bad for them. Because if there was going to be any resistance on their part, it could only be because they didn’t yet understand who they were dealing with.

Me. A mom. A mom willing to take on, or take down, anything, if it was the right thing for her sweet, special baby, who also happens to have some extra needs.

I went to the director’s office first thing the next morning. After a few brief pleasantries, I said, Okay, we are unhappy, and I am going to give it to you straight.

And to her eternal credit, she took everything that tumbled out of my mouth really well. She could not have been kinder. She understood exactly where we were coming from. And she said she would figure something out to make sure Bette was getting what she needed.

I was so relieved. I didn’t walk out of her office with any solid answers or a solid plan for Bette, but I felt so much better. Because after talking with her, I knew she was on our side. Or more accurately, I knew she was on Bette’s side. And that was all that mattered to me.

Since then, a plan has slowly developed. Bette is now spending a significant chunk of her time at school in an older class. She is being exposed to higher language and working in more intense therapy groups. And hopefully soon, she will be able to go earlier or stay later each day, so that she is in school closer to 15 hours a week.

Looking back, it would have been so easy to just let the whole thing go. Because Jay was right, the business office was not helpful. They were nice. But not helpful.

But we couldn’t let it go. Because Bette is a special needs child. And at the end of the day, our job is to be advocates for Bette. We have to stand in the gap for her. No one else is going to do that. Other people may try to help and have good intentions, but really, it is up to us to make sure she is getting everything she needs.

God gave her to us. He entrusted her, a beautiful little girl who can’t hear a thing, into our care. And it is our job to love her, help her and even fight for her when necessary.

This is probably not the last time we will find ourselves in a situation like this. I imagine there will plenty of incidents down the road. And it is probably good that God made both Bette and I fairly feisty.

It will definitely serve her well in the future that neither of us are scared of a good throw down.