… let us rejoice …

August 18, 2014 Leave a Comment

Tell me more (about SB) Mondays

Psalm 118:24 This is the day that the Lord has made; let us rejoice and be glad in it.

Every day is a gift from God. I believe that. And if today is the day that happens to be the day you were born, well then you are part of the rejoicing in this day!

I don’t understand the ‘evil’ that some religions say is in celebrating birthdays. If this is the day the Lord has made (and we know that He also made ALL things – you and me as well), and we are told to rejoice and be GLAD in it – then let’s celebrate today! And if today is your birthday, let’s celebrate the birthday girl or boy!

So,

Today is my birthday!

And while I don’t usually want to be recognized with any attention or fuss at the fact that I have aged another year, I thought I would talk about birthdays and then share how great my family is and how they rejoiced and were glad for … me!

I have to first recognize my parents and how great it was to have dinner yesterday at “Three Hermanos” Yum – yes we are talking Mexican food. Thanks Mom and Pop for dinner! Like always, I ate too many chips with salsa and my dinner of spinach mushroom enchiladas were delicious. The birthday check in the birthday card was also much appreciated. (Thanks Dad, too, for the card & check.)

‘Amazon’ delivered a birthday present on Friday to me – A cookbook from Ric & Kristen! Although I DO eat meat, I prefer to eat a lot of vegetarian meals lately. I shared with Kristen the fantastic vegetarian meals I’ve been making lately from my ’emeals’ menus – but Kristen took me up a notch with Martha Stewart’s spin on meatless meals.

Monkey Amanda gave me the perfect card with the gift of a French coffee press (I think Ted helped to pick it out!)

So why a French coffee press? Ted and I have a Keurig coffee maker that we LOVE and prefer for making our morning cup(s) of coffee. However, I brought back some very fine coffee from my mission trip to Guatemala. Keurig coffee makers require K-cups and although we have the gizmo that allows you to ‘load’ your own coffee grounds into it to make a Keurig cup of coffee, it is really too much of a hassle. Fellow mission team member Fred had the same problem and recommended the French Press. Now we can drink some of the superb Guatemalan coffee. (That’s a cloth bag of some of the coffee I bought in the background)

Ted’s card made me cry:

Awww … he’d marry me all over again! It was a very sweet card.

Now to tie this all into my Monday blog theme of it being ‘Tell me more about SB Mondays’ I just want to say that each and every birthday that a person with spina bifida has is indeed a super big awesome reason to celebrate. All those extra challenges that SB throws at a person make each day more precious and special. So each passing year is an accomplishment and a reason to rejoice.

Ted’s card continued on the inside to say that if he could he’d go back to relive every happy moment because he can’t imagine anything better than that – unless it’s to look forward to all the moments that are still ahead for us.

No matter the ups and downs, the challenges, or the ways SB has affected our lives through the years … it’s all the good times that we remember and that make life so sweet. That also paves the way for the hope for the good times yet to come.

Just Laurel

Thanks for the birthday greetings everyone!

look beyond the chair

June 23, 2014 Leave a Comment

Tell me more (about SB) Mondays

Don’t stare at the chair!

C’mon people, there are a lot of people in wheelchairs these days. Many people with spina bifida use them. It’s okay – they are fine with it! In fact, there are many people with spina bifida who can walk but choose to use a wheelchair. “Why?” you may ask. Well, even though it may seem phenomenal that a person with spina bifida can WALK – sometimes it means wearing massive leg braces and holding onto crutches or a walker. The wheelchair is like freedom! Hands free! It means you can wheel around and then have hands free for picking up items, shaking hands, or eating. Hands aren’t available for those things if they are grasping tightly to crutches or a walker.

Amanda has had a wheelchair since she was three years old. It’s part of her. You don’t need to feel awkward.

In fact…

… being smaller and lower to the ground like she is, Amanda easily makes friends with other small creatures that are low to the ground.

Like … a neighbor’s puppy:

Or her sister’s cat:

Or a friend’s baby:

It does help if you can get yourself down to her level sometimes:

So throw your wheelchair paranoia out the window and look beyond the chair!

Just Laurel

And one more cartoon … rather twisted humor, but I showed Amanda and she laughed (helps to have a sense of humor!) and replied, “That’s almost funny!”

… spectrum …

June 16, 2014 Leave a Comment

Tell me more (about SB) Mondays

Spina bifida is a SPECTRUM disease.

Now when I think of spectrum, I tend to think of rainbows. Why? Because when white light is refracted it splits and disperses into all the colors of the spectrum – a rainbow.

I really really like rainbows. After a rain, I always look for the rainbow. 🙂

But how does this define spina bifida as being a spectrum disease? Well, if ‘spina bifida’ is like the white light, when it touches a human being, it reveals itself in so many color patterns … and all of them different. If the color orange, for example, represents normal pressure of the CSF fluid in the brain and spinal cord, then absence of that color means you have hydrocephalus. (I wish Amanda had that color.) And if blue represents the ability to walk, well there are lots of spina bifida people who can walk – they have lots of blue in their rainbow! No blue means they can’t walk. So even though you may know someone with spina bifida that walks and works at a regular job – well they have got a different array of colors (symptoms) then someone else with spina bifida.

People with spina bifida are born with their own rainbows. Sometimes, colors are missing or the spectrum of colors (abilities) is arranged a bit different.

It’s okay. All people have abilities and deficits that set them apart from one another and make them unique. Maybe that’s what they mean when people talk about ‘showing your true colors’ – showing people what you DO have.

The impressive thing about spina bifida people is that, even though they are born with a different color palate, it rarely stops them. They tend to take what they CAN do – work with the colors they have – and make the very best of it.

(Yeah – I get angry when I see colors missing from Amanda’s rainbow – darn that spina bifida – but she still has lots of colors!)

So, spina bifida or not, we all need to be the best we can be with what God has blessed us with.

I never saw a rainbow I didn’t like. They’re all beautiful.

Just Laurel

strength

June 2, 2014 Leave a Comment

Tell me more (about SB) Mondays.

Spina bifida parents are strong people! We encourage, fight, motivate, persist, explore, sacrifice, endure, cheer, and never stop when it comes to helping our children become the best they can be. Of course, these are things that ALL parents do … but SB parents sometimes have to come up with extra doses.

One of my favorite online groups associated with the SB community is the Facebook page, “Take That! Spina Bifida”. Their purpose is: “Celebrating the everyday victories. This group is a place to post photos, videos, or updates when you or your child do something they were never supposed to be able to do.”

The other day, someone on the page asked the question, “What quotes/mottos do people live by on here regarding living with SB?” The resulting answers were inspiring to say the least! I had to share them with you.

Here’s a generous dose of inspiration and motivation for all:

For every mountain, there is a miracle.

Nothing is impossible with Him.

Words mean more than what is set down on paper. It takes the human voice to infuse them with deeper meaning.
Maya Angelou

All great achievements require time.
Maya Angelou

We may encounter many defeats but we must not be defeated.
Maya Angelou

Can’t never did a damned thing, unless, until he tried.

I’m through accepting limits because someone says they’re so. Some things I cannot change but ‘til I try I’ll never know.

A real friend is one who walks in when the rest of the world walks out…
Walter Winchel

“Alone we can do so little; together we can do so much.”
Helen Keller

“Whining is only acceptable when you’re whining to someone who can make a diﬀerence.”
Marilyn Hamilton, the creator of Quickie Wheelchairs

“Let’s stop “tolerating” or “accepting” difference, as if we’re so much better for not being different in the first place. Instead, let’s celebrate difference, because in this world it takes a lot of guts to be different.”
Kate Bornstein

“Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.”
Neil Marcus

“The only disability in life is a bad attitude.”
Scott Hamilton

“It was ability that mattered, not disability, which is a word I’m not crazy about using.”
Marlee Matlin

I don’t have a dis-ability, I have a different-ability.
Robert Michael Hensel

When everyone else says you can’t, determination says,”YES YOU CAN.”
Robert M. Hensel

I never said it would be easy I only said it would be worth it.

“Rejoice in HOPE, be patient in tribulation, be constant in prayer.” Romans 12:12

“If you can dream it, you can do it!” and
“It’s kind of fun to do the impossible.”
Walt Disney

No matter how bad my situation someone always has things worse.

Proverb 3 5-6 Trust in The Lord with all thine heart lean not to thine own understanding in all thy ways acknowledge him and he shall direct thy paths

Improvise. Adapt. Overcome.

Born to be weird….

The sky is the limit.

Oz never gave nothing to the Tin Man that he didn’t already have.

Psalm 139:14, “I will praise you for I am fearfully and wonderfully made.” I also like life is not a sprint, it is a marathon.

Philippians 4:13 — I can do all things through Christ who strengthens me.

just Laurel

defects and decorations

May 26, 2014 Leave a Comment

Tell me more (about SB) Mondays.

How far back can we find cases of spina bifida? Is it a relatively newer birth defect? I thought I’d do some investigating.

I was stunned!

Didja know ….

… that in the tomb of King Tut, there was discovered a wooden box with 2 small mummified fetuses? Some historians believe that young King Tut had no children – but he was certainly old enough to sire children and indeed had a wife. But the fact is there WERE two fetuses discovered and whether they were Tut’s children or not is beside the point. The point is … they were there and radiography strongly suggested that one of the children “had a condition known as Sprengel’s deformity, with congenitally high right scapula, spina bifida and scoliosis.” Read more: http://www.touregypt.net/featurestories/tutchildren.htm#ixzz32p467ZkE

A little more google searching gave me some more limited information. The actual first recorded case of spina bifida was in Arabia in the year 1085 AD. The name was given to the condition by a Dutchman named Nicolaas Tulgius in the year 1637. And the final fact I could scrounge up was that a fetus found in 1881 showed that spina bifida occurs in the first month of pregnancy. (uh … they ‘found’ it? Too many unanswered questions here!)

So there you have it – a bit of spina bifida trivia.

I feel it more important to share with you some trivia Fox News had today – to recognize it being Memorial Day.

Didja know …

The first Memorial Day was celebrated in 1868 – after the Civil War ended. It was created as a special day where the graves of those who gave their lives for their country would be recognized by placing flowers on their graves. It was the day you were supposed to decorate the graves – hence its original name of Decoration Day.

Now here’s the stunner.

The Fox News correspondent gave us 3 numbers to pick from that was the amount of lives given for our freedom. They ranged from 300,000 to 1.3 million. And the answer is …

1.3 million.

So many lives given. For us.

Please remember those who gave their lives so that we may live freely in the great United States of America. Count your blessings folks.

Just Laurel

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