Archive for July, 2013

Look at Her!

I couldn’t stop looking at her. Her beautiful facial features were dainty and feminine. Her thin face and mature eyes revealed a girl transforming into a lovely young lady. Her sideways glance was that of a pre-teen girl annoyed at being studied and stared at.

Her body was transforming, too. Curves and developments also gave away the secret of a girl growing up.

She was beautiful. She was changing. She was growing up.

And she was my baby.

My 11-and-a-half-year-old baby. My baby girl changing before my eyes into a young woman. It was beautiful.

And it was terrifying!!

How in the world could this be happening? When did it happen? And what in the world am I going to do about it??

I think all parents have that realization — that shocking moment when it hits them full in the face … their child turning into a grown up. I think for all parents, it causes a bit of pride at the good-looking person their child is becoming. I think for all parents, there is some surprise and some fear of what the future holds. Surely for all parents, it evokes a measure of panic — have I done enough? am I ready? is he/she ready?

But for the parent of a child with disabilities? The fear and panic is certainly magnified.

Have I explained her body’s upcoming changes in a way that she understands it? Does she have any questions or concerns? Is she excited about these changes, or is she frightened? What in the world will I do as the changes progress? I mean practically … really … what will we do to handle those things? Is she happy with the “fashion” and “style” that I’m offering her, or is she wishing she could dress in a different way? Have we talked about boys enough?

Look at her. She’s changing. And she’s beautiful. I’ve got to be ready.

These and more (lots more!!!!) are the thoughts of a mom who has a girl-becoming-woman-creature-thing living in her house. A girl-becoming-woman whom she loves incredibly deeply. A girl-becoming-woman whom she doesn’t want to disappoint or embarrass. A girl-becoming-woman who will need way more support than she knows how to give. A girl-becoming-woman whose dignity she very much wants to protect.

And the mom is terrified. And begging for tips and pointers.

Look at her. She’s absolutely beautiful ….

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What is up with DME??

DME is the only sales industry that I know of that the customer has to beg for attention and service!!

Please sell me a wheelchair! Please return my phone call! Please bring out a demo walker so that I can choose which to buy! Please call me back! Please treat me like a customer! Please, please, please! Please sell me some equipment!

Seriously! All other sales industries call you a whole lot more than you want to be called. Other sales industries show up on your doorstep even when you’d rather them not. All other sales industries act like their job and their paycheck depends on your business. Other sales industries return your calls!

Why is it then that I often change DME companies because of complete lack of attention? But then I find a different company and they treat me the exact same way??

I’m baffled.

DME stands for Durable Medical Equipment. For us, that means wheelchairs, walkers, bath seats, potty chairs, etc. I’m pretty positive that these salesmen surely work on some sort of commission. But it is so baffling to me that they can go a whole week or two without calling to give an update on whether they are going to be able to bring out a wheelchair for me to look at.

The current company I am working with is one I came to after deciding against another one that totally dropped the ball on service. Never called me back; wasted two solid months. Seriously. So I called this company looking for better service.

The thing is, we order equipment so seldomly that I forget how terrible the service is. So I enter into it thinking I’m going to be treated like a paying customer. And that’s the deal, maybe. Since Chloe has insurance and Medicaid, we actually are not paying customers. We won’t pay a dime for Chloe’s new wheelchair. But guess what? I’m the one who will make the decision and order the chair! Or not order it, if I so choose. Or switch companies again, if I so choose.

It is so aggravating.

Someone who understands this industry please explain this phenomenon to me. Why do I have to beg for service? And why does it seem to be an industry-wide problem???

I’ve been trying since before school got out for summer break to order Chloe a new wheelchair. Again this week, the current “salesman” /rep that I’m working with has waited more than a week to call me back when I believed that he was going to be bringing a wheelchair by for me to look at. Not once has this rep called me on his own accord. Seriously. I have had to call him every single time to find out what’s up. Ridiculous!!

Seriously, it kills me. Am I alone here?

 

Encouragement through friendship

We just finished a week of VBS at church. Vacation Bible School. It’s a highly energetic, very entertaining, potentially life-changing week for kids.

This year Chloe was the only one who participated. Elliot, Zippy, and I were volunteers. This particular type of volunteering proves to be extremely exhausting! But oh so worthwhile an endeavor!

On the last night of VBS, the leaders were instructed to give encouraging words to each of the kids in our group. As we spoke the words, we gave each child a glow stick as a symbol of the encouragement spoken. It was a very special experience for leaders and kids!

It was during this activity that I was surprised by a fellow adult leader on my team. She grabbed me as I went by. And with tears in her eyes she spoke an amazing encouragement to me.

She didn’t say the usual: “I don’t know how you do it.”   She didn’t say the overused and sometimes painful: “You are a saint,”  or the eye-roll-inducing: “God will only give you what you can handle.”

She simply said that she knows my life is at times a difficult one. But she also said that my life is a blessed one. And she said that I was a blessing to people watching me live my life. And as she handed me my glow stick, she told me that I was a shining star … or light … or whatever it was that she said.

The truth is I don’t remember her exact words. But I remember the sentiment. And I remember how loved and encouraged and appreciated and noticed I felt. I felt validated and worthy. I felt a deep-heart emotion that I don’t usually let myself feel. I felt like I had a friend and that that friend understood and appreciated me.

My eyes brimmed with tears as we hugged, and I let myself receive those words. I breathed in a deep breath and accepted those words as truth.

I sometimes have a difficult time accepting close-to-the-heart, intimate, emotional words from people — especially from a new(ish) friend like this one. But I purposely let myself receive those words and be encouraged.

I felt full. Full of blessing and happiness.

And truth be known, I could’ve bawled right then and there…. But, of course, I didn’t allow that to happen!

“Therefore encourage one another and build each other up, just as in fact you are doing.”  (1 Thessalonians 4:18)

A New Horizon

I am filled with a new hope this summer.

According to Wikipedia (the world’s authority on definitions and usages these days!), “Hope is the state which promotes the belief in good outcomes related to events and circumstances in one’s life.”

Hope is so important, isn’t it? It’s hope that keeps me from complacency and stagnation. It’s hope for the future. Hope for improvement.

Life with children with disabilities can certainly be stagnant. While our children’s progression and successes are definitely successes, they are painfully slow at times.

We parents get into the monotonous routine of therapies and stretches, medicines and appointments, research and keeping records. Simply getting out the door in the morning oftentimes zaps a day’s worth of energy and stamina right from our body and soul.

Yáll know me well enough to know that I love my life just as it is. But it is a lot of work and is often difficult. Don’t ever let me paint a picture contrary.

But right now, this summer? I’m filled with a new hope. I’m hopeful for some improvements in Chloe because of some new therapies.

I opted to take a break from private speech therapy 2 years ago. It was to be just for the summer as I immediately put Chloe’s name on the wait list for a therapy center that comes to your home for therapy. (Praise God for home visits vs. driving all over town!!) I had no idea that she would be on the wait list for that long!!

But she finally is receiving speech therapy. TWICE a WEEK! Can’t remember the last time Chloe received therapy that often. And I’m in love with her new therapist. She seems really good at what she does, and she is excited to work with Chloe.

While I explained that my main goal is to get Chloe going on a device finally — school has been sooooooooo slooooooooowwwwww to get her going on anything for some reason — this new therapist really also wants to work on some articulation with her. Usually at the age of 11 1/2, therapists aren’t too gung-ho on working on articulation, but this therapist thinks that since Chloe walked so late and is still progressing orally and physically that there is a chance that she’ll gain some more articulation skills. (For those non-speech-therapy-type readers, that means that maybe there’s a chance that Chloe will use some spoken language that we can understand so the speech therapist is working on speech sounds with her.) That is exciting stuff!! And Chloe is responding beautifully to it! We can already tell a difference/improvement in some of her speech even after just a month! Yay!!

For those who may be interested in a little more detail of her artic/speech time, this therapist has pointed out the fact that Chloe can usually make one sound of a word, but she lacks the motor plan to string any sounds together. So she is working with a program that has a definite motor plan aspect to it. As Chloe makes the /e/ sound, she pushes her flat hands up beside her head as though she’s lifting a heavy trunk. As she makes the /l/ sound, she makes an L with her right hand and touches her right cheek. So every sound has a “motion” if you will; thus, helping her with the motor plan part of stringing sounds together. She loves it!!

The other therapy that gives me hope right now is Chloe’s new physical therapy. In the past year, Chloe’s gait (walking) has gotten way worse. Her knees are more bent, she’s more bent at the hips, and her bottom sticks out farther. It doesn’t matter to me if it looks nice or not, but it does matter to me if it’s functional. Her walk is definitely losing some function, and it is not easy for her to do.

She’s been on the wait list for physical therapy for 2 years, also. Crazy, right? But finally one of her wonderful neurologists made a phone call and got her moved to the top of the list for physical therapy. So now she’s in.

The part of physical therapy that I’m excited about? It’s TWICE a WEEK, too!! I’m so excited that she will surely make some great progress at that frequency! The other thing I’m excited about is that she will likely do some of this therapy in the water. This clinic has aquatic therapy which is the reason we were referred there in the first place. The therapist isn’t positive that Chloe will show enough progress in the water to justify aquatic therapy, but the opportunity is there for her. Excited!

Excited!

And hopeful! Yes!

The unspoken part of this is that our schedule just got a lot busier!! But the hope outweighs my messy calendar! I look forward to giving you updates on Chloe’s progress!

Adopted?? Really??

A pet peeve of mine.

I know that surprises you that someone as un-opinionated as I am would even have a pet peeve. Ha.

But, yes, this is a huge, ginormous pet peeve of the worst kind.

It is again a word choice issue.

I am an English major. I taught English for 6 years. I like words. But I also very much understand the power of words. And I know that words can oftentimes be hurtful and misunderstood.

Today’s pet peeve is the overuse and misuse of the word adoption.

These days people adopt a highway, adopt a pet, adopt a school, and adopt a family for Christmas. I hate it.

Companies or families that adopt a highway or a school can do so and never really even do anything of worth to benefit said highway or school, and guess what? The next year they may change their mind and adopt a different part of the highway or a different school. They may decide to just not adopt anything this year. Maybe the budget won’t allow it. Maybe their mission has switched its focus.

Families adopt a pet and then change their mind a year later when the dog is not the cute puppy it was a year ago. Or if it doesn’t work out, if the dog bites a family member, then the family gets rid of the dog. See ya.

A class or a church may adopt a family for Christmas one year and lavish them with fine gifts and a meal for the holiday. But guess what? There’s no guarantee that that class or church will show up the next time Christmas rolls around.

These examples of “adoption” send the wrong –absolute wrong meaning of the word to my adopted child, his siblings, and his friends. How confusing to him when we had to get rid of the dog we adopted because we were unable to train him. How confusing to see 2 dozen signs on the highway saying this section adopted by Such n Such Company. Adopted? Really?

I know the English language well enough to know that adoption is not the only word with multiple meanings and uses. I know that.

But something as precious and sensitive and personal as adoption should have its own word. Its own word to clear up any misconception.

It’s important to me that my son understand that adoption is forever. It’s important that he know that even if he growls at a family member or destroys a prized possession, he is still forever mine. It’s important that he know that even if there’s more trash strewn alongside his median than we had planned for, we will continue to care for him. It’s important for him to know that his name isn’t going to go back “into the pot” when we’re done with him.

A pet peeve? Yes. Yes, it is.

One that I’m willing to fight for and shout out against in hopes of change? No. I think my audience would not be very sympathetic to my pleas.

But you can be sure that I won’t use the word in those other contexts. And you can be sure that if you use the word in those contexts, I will surely cringe and silently wish that you’d used a different word.  That’s all.

Thoughts?

But the Stench!

Warning: This posts discusses bodily functions in a very boyish way …. You’ve been warned.

For those who do not live at high altitudes but have visited high altitudes, you may be familiar with the term “equalizing” when it comes to your body acclimating to the high altitude. It seems that according to some male species, your body must equalize through the rear end in order to regulate at a higher altitude.

In other words, there was recently a lot of tooting going on, and it was often blamed on the process of “equalizing.”

We were in Colorado and stayed in Colorado Springs and then in Mt. Crested Butte. Both are much higher altitudes than Fort Worth, TX. So, yes, we had some equalizing to do apparently.

But it wasn’t just us. It was apparent that lots of folks were doing some equalizing of their own in the week that we spent in Colorado. Not to mention any names, but the man sitting next to me on the cog railway to Pikes Peak was certainly equalizing. But if my boys are correct, it really can’t be helped — we were covering some major elevation in a quick time. Bless his little equalizing heart.

Not only the equalizing but other bodily functions took on exaggerated forms, apparently. Common conversation in our family consisted of describing the smells that were encountered in the restrooms in Colorado.

No need to send this one to the jury — poop is definitely stinkier in Colorado! Hook, line, and sinker! Or floater…whatever the case may be. They all stink!

While we camped, Elliot described the shower smell as an awful mix of toothpaste and morning poop. (Not just any poop, but morning poop! Yikes!) One morning the showers smelled of shampoo and poo poo. The shampoo, toothpaste, and deodorant just couldn’t compete with the strong unpleasant smells surrounding those showers.

I agreed that the bathroom smells were so much worse there on the mountain than in TX. How in the world could that be? Weird. But true. Very unpleasantly true. I would’ve loved to have a gas mask on several occasions.

And it’s probably all too personal to be discussing on the world-wide web. But that’s just how we roll.

So, do any of you have boys that you’ve traveled to high altitudes with and had similar conversations? Or am I the only lucky one?

Now, where’s the air freshener?

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