The Samantha Years

The Stories We Share

This week my great-uncle Glenn passed away.

He was 90. He lived an amazing life. He was healthy, and he didn’t suffer.

But that doesn’t mean I won’t miss him….

Not that I talked to Uncle Glenn everyday, every month or even once a year but I like the idea of the world with Uncle Glenn.

He was a great story teller. When my ‘Popa‘ (Glenn’s younger brother) passed away, I couldn’t make it home for the memorial service. I was crushed. I missed my Popa and I didn’t know how to say good bye. My family sent me a tape of the service. Uncle Glenn had given the eulogy and told fabulous stories of Popa…..

Popa running naked down the street at age three.

Popa destroying Grandma Chappell’s flower beds.

Popa being….Popa…and how much his brother loved him for the man he was.

I hadn’t seen Uncle Glenn in years but he had given me a treasure. He had given my stories of my Popa.

Later, Uncle Glenn wrote a book about his life; World War II, growing up as a preacher’s kid, finding his true love and the parable that accompanies living.

I am lucky enough to have a copy.

I love this book. I love the stories of my family. I love that I am related to someone small enough to be a ball turret gunner. I love the relationship he developed with his crew.

I would also like to know what beauty secret was shared in the 1930’s and 40’s because everyone, everyone in the photos is gorgeous. I’m embarrassed to say I went through the book ogling at my great-uncles thinking wow, he was quite a looker.

Priceless….this book is priceless.

I am realizing more and more the power in our stories and the beauty in a life shared. I hope someday my grand niece might be just as interested in her crazy Great Aunt Heather.

Perhaps our stories are our true legacy.

To the Simms‘…..wish we could be there tomorrow. Our thoughts and prayers are with you.

To Uncle Glenn…..Tell Popa to behave. Give Jack a kiss.

The Samantha Years

Fang I and Fang II

“Where are her teeth????”

We get this a lot. Samantha is 3 1/2 and has no teeth. She will sport you a big, toothless grin, nibble on your pinkie, but no teeth. They are hiding up in her gums but they refuse to make an appearance.

We have several theories on why….

Theory #1: Samantha is tube fed. Tube fed babies get teeth later than orally fed babies because they don’t bite or ‘gum’ food. There is nothing to push the teeth through. However, many of Samantha’s tube fed buddies now have a full set of choppers.

Theory #2: It takes a lot of energy to push teeth through your gums. As Samantha’s body is rationing how limited energy is to be spent, teething is not a priority. I agree with theory #2 but many kids with mitochondrial myopathy have teeth.

But honestly, I don’t care. I monitor seizures, infections and any other health conditions Samantha’s body throws our way. Teeth? Teeth are an after thought. We’re not trying to feed her a steak and baked potato.

A couple days ago I was brushing her gums and noticed two little front, bottom teeth poking through. They are knobby, angry, little daggers but they are right there….
Samantha’s teeth. I have named them Fang I and Fang II.

I tried to take a picture but all you see are her angry swollen little gums so we’ll wait until Fang I and II make a more pronounced debut.

For me, with my vast medical experience (HA!) it means that her body is feeling stronger. She is not fighting C-dif, MRSA, Pseudomonas, or other little beasties that like to set up residence. I guess when I put it like that, I really do care that she has teeth.

Welcome Fang I and Fang II.

The Samantha Years

Speaking from my Heart…..

It is an odd night….

And the country is divided….

And I am unsure if I should post this….

A couple days ago, I stumbled across another mom blogger Erin who is a member of the LDS church, who posted her support of gay couples and gay marriage.

It was a very brave post.

In honor of her bravery, I will post this. AND I will ask you, if you don’t agree, just (as Erin said) click away.

I am relieved tonight….congress passed health care reform. I am not happy because so many people are unhappy. But I am relieved.

We have a lot of work to do and this bill is not perfect. But as a person who spends a lot of time negotiating with insurance and hospitals, something has to change.

Two months ago I stood in line at the Children’s pharmacy. I was behind a woman who was trying to get a prescription for her daughter. It was a prescription for her daughter’s heart.

Her husband had just lost his job. They had no coverage for this prescription.

“But it’s for her heart.” The woman pleaded with the pharmacist. “I have to have it.”

They went back and forth. I was about to pull out my credit card to pay for this prescription….how much could it be? , I thought.

$600 for a ten day bottle.

Sadly, I put my credit card back.

The woman went up to talk to the doctors to see what could be done. She left without the heart medication.

My heart broke.

You may have laughed at my last post about waiting 18 months for a bed. But the truth is….we’re still waiting.

1.85 million Americans will go bankrupt this year due to medical bills.

In the end, we are all people just trying to live a good life and insure our children will also live a good life. I hope we all remember this in the days to come.

P.S…..laughing at the last post was a good thing 🙂

The Samantha Years

What is the protocol on this one?

I love good customer service….

Ask me how my day was, thank me for my business, return my calls and I am putty in your paws.

Ever since Samantha, companies have to follow through on what they promise. It’s a matter of her health, her livelihood, and in some cases the difference between being at home and a hospital stay.

One time a company delivered 30 blood-glucose monitoring kits instead of 30 cans of ketogenic formula. I was panicked and quite unhappy. In retaliation, I learned how to make our own ketogenic formula.

We have ordered a hospital bed for Samantha. She needs to have her upper body elevated at night and as she gets bigger I need to have a bed we can raise and lower.

We have been working with insurance and a DME (durable medical equipment) company for 18 months to get said hospital bed.

I am not a patient woman by trade…but I am trying. Really…..

A couple months ago I called the DME company to see what the status was. Our rep…Mr. L, was not in so I left a message.

A week later, I never got a return call so I left another message…waited….no return…another message…waited…no return….you see a pattern here don’t you?

Every message I left got a little snippier. I tried to keep my cool but really, we’re waiting 18 months on a bed and our rep doesn’t return my calls?

After three weeks of one-way phone tag, I called and asked to speak to the manager.

“Yes, I’m trying to get the status of our bed order. I’ve left numerous messages for Mr. L. and he hasn’t returned my calls. Frankly, I’m getting a little tired of this.”

“Oh,” said Miss Manager. There was a long pause on the other side. “I am so very sorry. Um….Mr. L died three weeks ago.”

Died?

My heart stopped. All those messages I left; those snippy messages….talking about the importance of good customer service….Mr. L. had died.

I felt like an ass. Should I feel like an ass? I didn’t know. What is customer service protocol when someone dies?

I took a deep breath and a step back from the situation. “I am so very, very sorry.”

We talked about Mr. L and what had happened. We talked about how awful I felt leaving messages. Finally, I had the nerve to say it…..

“You know….it’s been three weeks, perhaps you should forward his phone so people won’t leave messages expecting to get a call back.”

“Yes, I know. We need to do something but we’re just so sad.”

I never knew Mr. L personally….only a phone call or two but I felt like I should send flowers or something.

I did abandon my original plans to pull the order all together. So, they still have my business and we still wait for the bed.

Some things you just have to let go. Rest in peace Mr. L.

The Samantha Years

Write as Rain

The next couple weeks are a little exciting….

For ME!

When I started this whole writing ‘thing’ I said I would not spend money on my writing until I made money with my writing.

Three years later, I made money! Chicken Soup published the Blessing Bowl and I am proud to announce that they accepted another story to be released in April.

Here’s the book:

Pick it up to read the latest antics of my father. He’s not quite sure what to think of his new-found celebrity 🙂

These two publications and the babysitting efforts of Grandma Judi have enabled me to attend a writers conference next weekend and pitch to an agent….really an agent???

Wish me luck.

In honor of my new found ‘profession’ here, is why I write….

I am a writer….

I am a writer….

I am a writer….

It took me a while to get used to saying this. Even now when I proclaim my new profession, I feel like someone is going to peek from around the corner and call me a phony.

But I’ve started to say it anyway.

I write.

I keep a blog.

I started blogging because we have a severely disabled daughter who ends up in the hospital quite often. The blog started as a way to keep family and friends informed of her variable condition. Surprisingly, my audience has grown and I am proud to say I have met wonderful, supportive people through this network.

But that’s not why I write.

I am a bit of an egomaniac. Okay, quite an egomaniac. I love it when someone reads one of my essays as says “Hey, that was good. I liked it.”

You like me? You really, really like me?

Well, I liked your article.

But that’s not why I write.

I write because I have to. I write because crazy ideas get caught in my head and clog up my brain. These ideas take too much room and then I can no longer remember where I put my car keys. I walk out of the house with two different shoes.

I write for the preservation and proper functioning of my head. Once finger meets keyboard, once I have purged my literary impediment, my brain can then remember to buy milk at the grocery store, brush my teeth and be pleasant to my husband. If I don’t write, the entire household is literally, screwed.

My writing now includes working on a book….a memoir. A Memoir… this sounds quite self-indulgent to me.

Well yes, I am working on a book about my life. You will love it…because you will find me quite fascinating.

Honestly, I think my life is a little boring but this book idea came up and I’m running with it. Okay, maybe not running. I’m on year three of the book project and it’s still not done.

Recently at a writer’s luncheon, I sat next a man who just published his third book. I mentioned I’m still working on my first.

“How long have you been working on it?”

“Three years.” I replied quietly with a sheepish grin.

“It took me seven years to complete my first book. I loved the process. No agent deadlines, no editor timelines, just me and my book. We bonded; my book and I. After seven years, it was like a good friend. I was a little sad when I finished it.” He sipped his tea and looked a little dreamy.

Hmmmm…To become a companion with your thoughts. A friend to your stories….that sounds quite nice……perhaps, perhaps that is why I write.

The Samantha Years

Paralympics

Impossible is Just Another Word- Jim Furlong

Alexi Salamone was born with deformed legs as a result of the Chernobyl nuclear disaster. He was adopted, grew up in the States and is now on the US Sled Hockey Team.

Heath Calhoun lost his legs in Iraq. He is on the U.S ski team and was the flag bearer for the opening ceremonies.

A couple years ago, a teenager was struck by car a couple miles from our house. Nikko Landerros lost his legs in the accident. He is now on the sled hockey team.

Caitie Sarubbi is a freshman at Harvard and ski races full time. She also has a rare genetic syndrome that only 13 other people in the world have. She’s had over 56 surgeries and is visually impaired.

Samantha’s mother is sitting on the couch eating Reese’s peanut butter eggs, with Kleenex in hand. She in complete awe of the human spirit.

Have you ever skied with your eyes closed? I can’t ski with my eyes closed. During an instructor training, a friend of mine tried to demonstrate skiing with their eyes closed, he ended up in a net on the side of the hill….a big skiing tuna.

I have also never skied without my arms, or my legs. I’ve tried to ski on one leg but I don’t do it very well.

And I just can’t skate…..

At one point in time these people may have thought their life was over….their legs were gone, their spine was severed….the person they were had been altered.

At look at them now…..






A shout out to Samantha’s Pops and Nonnie who are at the Paralympics. Pops is treasurer for a non-profit called No Excuses. No Excuses supports disabled skiers; helping them with training, development and funding. Thanks Pops!

I have a dream that someday Samantha will join us on the slopes.

Impossible is just another word.

The Samantha Years

And now we must beat her…..

After a lovely birthday lunch with Aunt T, we went to see Dr. E about Samantha’s junky lungs.

They have been ‘junky‘ for two months. For most it’s not a big deal, just a winter cold. But Samantha doesn’t have the strength to cough up what lands in her lungs.

And that could lead to pneumonia. We don’t like pneumonia.

Dr. E was concerned that the lower lobes of her lungs sound a bit ‘crackly’. So she ordered rubber cups for her chest. The new protocol is that we lightly beat her chest with the rubber cups for ten minutes twice a day….this breaks up the goo that settles in her lower lungs. The rubber-cup-chest-beating is followed by suctioning.

“I hate suctioning.” I told our respiratory therapist.

“Yeah, I’ve been doing this for 20 years and I still don’t like to suction kiddos,” he said.

I told him this bit of information didn’t make me feel any better.

Dr. E and I met Maria for a coffee after our appointment. It’s crazy and so comforting to have such a group at TCH.

Tonight we beat Samantha’s chest for ten minutes. I tired to come up with some sort of rhythmic song to sing but I got nothin‘. She actually liked the chest pounding….I think it kind of tickled….the suctioning? Not so much.

Still no seizures since the fat increase….crazy.

Happy Weekend!