What a Butterfly Taught Me About Living with a Disability

We had a pretty bad windstorm in our small town this week. Limbs were down, and pine needles stuck straight into my window screens. We saw trampolines and trash cans out of their designated spots all around the neighborhood.

Just after the storm, I got out in the back yard to sweep up, pick up, and blow away the leaves and small branches that had fallen, and I spotted a butterfly (looked it up -- it was a Red Admiral Butterfly). It was hurt; one wing was broken. and it was unable to fly. It jumped a foot or so at a time, but as hard she tried, she couldn't quite lift up off of the ground. 

Now, I am pretty much an expert on saving creatures in the wild. Put them in a thing. Give them food and water, and release them when they are all better. Yep, I'm a regular veterinarian. Baby birds fall from trees and kittens get lost and such. But can you nurse a butterfly back to health? I wondered.

Once a delicate little wing is broken, can this butter ever fly? (Sorry). My kids had decorated a mason jar at Bible school, so I decided to launch a rescue mission. I scooped up the little butterfly with the jar, which already had woven paper with nice air holes across its top. My husband Chris remembered that the butterflies at the Insectarium in New Orleans liked bananas, so after I placed a damp paper towel in the jar, he added a slice of banana later that night. 

And I guess it was resting. Eating through it's freaky little tongue-straw. Frantically trying to escape through the top of the jar. 

We left her alone for a couple of days. And the wing was still broken. It looked as though our little friend was permanently disabled. What could we do? Like, can you buy prosthetic butterfly wings on eBay? Is that a thing? How freaking cute would that be? Somebody get on that.

Can a butterfly with a disability survive in the wild? Wouldn't she just get eaten immediately by the first bird that spotted her, despite her efforts to hide the bright orange on her wings and display only the leafy gray and brown of the underside?  

Our family knows a thing or two about disabilities. Our twin sons, Jack and Woody, were born with Spina Bifida, which is a permanent physical disability that has partially paralyzed them and has made getting around very challenging, among other things. 

It was impossible for me to watch this broken little butterfly in the jar and not reflect on the nature of disabilities. They suck. They suck for the people who have them, and they can suck for the caregivers. It just is what it is. 

My son Woody wants to carry his backpack on his back, not on the back of his wheelchair or strapped to his chest. Jack wants to jump off the diving board like the other kids do, not from a seated position. And all we can say to them is: "Well, we can either do it a little differently, or not at all. Letting it get us down won't help anything, so let's just figure it out!" 

I decided to let the butterfly go this morning. And let me tell you, not everyone would agree with this decision. Some might say, "But it will just get hurt, stepped on, or eaten! Keep it in the jar. Maybe it can live longer at least. Maybe it can get used to life in a jar. It'll be safe." 

I am not confident that I did the right thing, but as a mother of two boys who are disabled (not a bad word), I simply felt like she needed to get out. Screw being safe. Life in a jar is poo.

People with disabilities just want to get out -- to play, to work, to travel, to live life. It might take them a while to get where they are going or to do what they want to do, but shouldn't we let them try? Should we stick them in a separate place only for fragile people because it is inconvenient for us to have them around or because it gives us the heebie-jeebies?

Our butterfly was thrilled to leave the jar even though she had everything she needed to survive. Because she didn't have what she really wanted: the freedom to hop clumsily around my back yard and just be a butterfly. 

To be free.

Love It!

I am really missing my three littles, who have spent two nights away from us; I'm about to run out pick them up from their Maw Maw and Paw Paw's house. Since I have a rare moment of solitude after work, I decided to scribble about a few simple little things I am loving right now! 

1. Our new large capacity washer/dryer set has changed my life. All of our clothes are clean right now. All of them. What the?! And they even give you the time left in the cycle -- I have an unhealthy love for these machines. Some things in life are worth spending money on, and the timing was also ideal. The washer pump just went out, and the dryer was on its last leg. Meanwhile, the set I liked happened to be on sale. It's the little things, dude. Just in case anyone reading this happens to be in the market, ours is a 4.5 cu.ft. washer capacity Whirlpool Cabrio set. LOVE it.

2. The Wii Mario Kart game, our newest toy. Woody and Ellie are having so much fun with this. Jack is too wack-a-doo busy to sit still that long, but he has started helping me with laundry and supper while the other two play, which is pretty hilarious. Woody can even drive while he is standing up with his big boots on, which encourages him to work on his balance! A friend of Chris's let us borrow the game and the controls for it -- people are awesome.

3. Why did I not know about crowder peas? We cook a pound of beans or peas at least once a week, so I picked these up this time. So good. Mom says I've had them, but she makes stuff up all the time.

4. Ellie's adorable voice while toothless! She lost her two front teeth, and I just can't take out cute she sounds: "Mith Johnthon thaid we are going on a field thwip to the movieths!" Ahh!

5. Our yard and back patio, and even the driveway. For our family, flat surfaces are a thing of beauty -- the boys rely on wheels to get around, so hills, rocks, sand, and grass are frustrating. Our little flat fenced-in yard lets us get outside because we can roll right out and enjoy it, during these few times of year when the weather is so yummy. The boys' new electric four-wheelers -- lots of birthday money well spent -- also let them explore beyond the pavement. Hard to describe ow huge that is. Our friends and family are to thank for that one. Love. 

Lots more simple loves to share, but alas, mommyhood calls. 

I Must Have Done Something Good.

Last night, after getting the kids home from school and doing all the stuff it takes to get everyone settled and happy for a bit, I cooked a little supper (lentil tacos and spicy honey roasted corn kernels and hominy -- mmmm). I am trying to learn to cook meatless more often, and it turns out that I don't miss meat all that much, at least for a few nights each week. After Chris made it home and we had eaten, I started in on the dishes. Worst part of cooking, hands down. Boo!

But then, I watched what unfolded, and I immediately paused to say a little prayer of thanks. Here's what I saw: 

Chris saw me head to the sink and he simply started getting the kids ready for bed; all the steps involved take quite a while, and he knew that if he waited, bedtime would get later and later, which would set us up for a tougher time tomorrow. So, he helped everyone get clean, use the restroom-- more complicated than it sounds for a kid with SB -- take their medicine and breathing treatments, get in their pajamas, and settle down on the couch.

Not even a hiccup. He didn't stop to question whether this was a man's work or even his responsibility. Two jobs needed to be done. And there are two of us. So, duh.

Sadly, I know that this act of partnership is not so commonplace in many families, and I am sometimes smart enough to be thankful for it.

The night went on, and while I was exhausted and had kissed everyone goodnight, he said their prayers with them all, tucked in the boys, and helped Ellie with her devotional Bible reading, while I took a hot bath.

Dude, do I have it good! 

He poked his head into the bathroom to say, "I noticed the grocery list is getting a little long. I will run to Walmart while you relax. Love you."

All this, after he's worked all day, and driven an hour one way to do so.

All this, while also being a model of health and an active lifestyle for our family. He is teaching our kids to take good care of their bodies, so they will take care of them later in life. He even went running in the cold, muddy weather on his lunch break that day. Yes, he did it barefooted, which is just eww. But still!

All this, after 11 years of marriage. We celebrated our anniversary last week, and I totally get it now when people say sappily, "I love him even more today."

All this, when a lot of dads would be watching TV, fiddling in the garage, planning their next hunting trip, or just doing their own thing.

He is my partner. He knows we are a team.

Without a husband, it would be very difficult to manage parenting and working outside of the home. But I also shudder to think of doing this with a husband who, unlike Chris, is not as invested in the lives of our children and the making of our home as I am.

It seems common sense, and it should be. I am so very thankful that I have a partner in life, who respects and loves me. Who gets it. Who knows that no matter what others believe about gender roles and chains of command and all of that nonsense, when the going gets tough, tough guys can change a diaper, do the shopping, bathe a wriggly toddler, unload the dishwasher, or paint toenails with the best of 'em.

All this, and good-looking, too! 

All this, and he keeps us laughing along the way.

Last night, I felt like Maria, singing to Captain Von Trapp in the garden: 

"Somewhere in my wicked, miserable past, There must have been a moment of truth. For here you are, standing there, loving me, whether or not you should. So, somewhere in my youth or childhood, I must have done something good!"

My Three Little Birds

This kid-ified version of the wonderful Bob Marley song "Three Little Birds" plays on our Pandora in the van all the time, and I find myself incredibly moved by it. Something about those little kid voices singing about life being all right (not just alright) simply destroys me. And encourages me. And transports me. 

It goes: 

Rise up this mornin',
Smile with the risin' sun,
Three little birds
Each by my doorstep
Singin' sweet songs
Of melodies pure and true,
Sayin', ("This is my message to you-ou-ou: ")

Singin': "Don't worry 'bout a thing,
'Cause every little thing gonna be all right."
Singin': "Don't worry (don't worry) 'bout a thing,
'Cause every little thing gonna be all right! "

I guess it's because I have days when I rise up and start the day worried and exhausted, and then I see my "three little birds." They sing sweet songs over me -- so pure and true. They have a message for me, that every little thing really will be all right. 

They fill me with hope. I am so freaking blessed. 

Three Empty Books

My kids' baby memory books are empty. 

All three. I don't remember any of the details requested in these books. When did Ellie first eat solid food? No clue. What was Jack's favorite toy when he was a one-year-old? Um. . . drawing a blank. Woody's first haircut? Like, a while ago? 

But I can always explore my Facebook to see how far we've come. 

I opened that account while I was pregnant with Ellie, about 6 years ago. I also started this blog right after the boys were born -- almost 4 years ago -- in order to sort of blab about what I was thinking, experiencing, and feeling as a new mom of three, two of whom have physical challenges.

The blog has collected dust over the years, but I'm glad I can always open it up to look back at what was on in my mind at different points of the journey, which is wonderful. 

A few of my friends have resolved to blog more in this new year, and while I probably never will be a faithful blogger, I am inspired to keep this terribly designed and frequently cheesy blog up and running, since the baby books won't start filling themselves up. This'll hafta do. :)

Our 2012 Memory Book (According to Facebook)

-- Woody ate his very first and only piece of fruit, a chunk of banana. Newsworthy. 

-- We were reading the Hunger Games and desperately seeking to borrow the second and third books (thanks Angela!). 

-- Playing the kids' (including the boys') favorite board game, "Pretty, Pretty Princess."

-- Woody and Jack rode the trolley all around Natchitoches at their birthday party. A 3-year-old boy's dream come true.

-- Watched Chris finish his first 10K with his brother Scott, who had just returned from a deployment in Kuwait. 

 

-- I was terrified thrilled to read poems alongside Julie Kane "and friends" at the Tom Peyton Memorial Arts Festival in Alexandria, LA. 

-- Spending Easter with family in New Orleans and visiting City Park.

-- Quick trip to Tyler, TX to look at wheelchair vans and visit the zoo.









-- Chris began a string of work trips to California, and I had an opportunity to see how much he does for the kids when he's home . . .

-- Jack asking for a "blesshue" when he sneezed!

-- Welcoming a new cousin, Brenyn, into the world.







-- Celebrating Ellie's 5th birthday. She puts the sparkle in our family.

-- Jack calling the UPS truck a chocolate milk truck. Woody telling us not the let the baseballs bite when we go to bed. So cute it hurts.

-- My big boys got their new big braces (HKAFOs) to help them stand. Overjoyed to see them filled with pride.

-- Asking Ellie what I would do without her, and her replying, "Well, you would have to go get stuff yourself."

-- Chris reading The Foolish Tortoise to the kids in a British accent. So lucky to have him.

-- Still having three kids who nap at the same time and give their Mama a much-needed break during the long, hot summer.

-- Surprise 65th birthday party for Maw Maw Judy, at her own house. I gave her a huge Medicare card to commemorate -- because I am goofy!

-- Finally getting to announce that Nene was expecting a baby!

-- After fighting through her terrible stage fright, Ellie went on stage to perform a musical for Summer Music Camp in Fairview! She was so proud of her first performance, and so were we, of course.

-- My birthday visit from Sissy and Maw Maw Judy and the lights went out -- how exciting!

-- We finally have a wheelchair lift on the big Nissan van -- woohoo!

-- Ellie singing "Woah, woah, woah your boat, gently down the stweam. Melanie, Melanie, Melanie, Melanie. Like a pot of stweam." I can still hear her sweet little voice.







-- My little girl starts Kindergarten. No way!









-- We were sad to leave Ms. Paula when the boys moved to a new school, but overjoyed that the boys' fantastic new teacher, Ms. KimberLeigh, wasn't moving, and they could keep her all year! 

-- Checking out the NSU football game from the good seats with Bill and Phyllis was lots of fun. Thank you!

-- Riding in the big van to Florien, LA  each week with our friends Michelle and Phoenix to read books with families was always an adventure.

-- Taking a big family picture is a great excuse to visit with plenty of aunts, uncles, and cousins. 














-- Thanksgiving fun at Sissy's and with the New Orleans cousins, aunts, and uncles.

-- Baby Shower season began for Nene and her soon-to-be adorably rotten Isabel.

-- Flu x 3 kids= missing out on a little  of the Christmas fun, but enjoying a quiet day with Maw Maw Sheryl, Paw Paw Travis, and Maw Maw Frances in Zwolle when they were finally fever free was a Christmas miracle!







-- Just after Christmas #2 in Covington, we got to meet the best gift for the new year -- baby Isabel!

Wilson Summer Olympics

Our friends, the Terrells, set up a super cool backyard slip-and-slide for a birthday party and church party.  They also graciously allowed us to try it out as a family. Hilarity ensued -- safe and almost 100% accessible hilarity. If only we had a little hill in our backyard! 

First up is Ellie: 

Perfect belly form and extra points for distance -- a Gold Medal! 

Next, Jack: 

The sitting slide attempt is very risky, but it pays off with a great distance! The commentator is cracking up! Jack wins Gold! 

 And finally, Woody: 

Woody enters the team event with his partner, Daddy! He has three position changes and sticks the face-landing! Gold  Medal for Technical Merit! 

Why Not?

"No, Jack, don't shove a DVD into the VCR!" (true story); "No, Woody, don't dump your milk on your head!"; "No, you can't have candy for breakfast, Ellie!"

But in those it's-really-not-such-a big-deal cases, I try to ask, "Why Not?"

Why not play in the dirt?

Why not dress up as Hollywood Horse, Boy Princess, and Flying Cat?

Why not go to the dollar movie to see Elmo? Well, I could think of a few reasons; still . . .

Why not have a tea party lunch?

And finally, why not play in the rain?

Trying to be a "why not" mama takes a lot of energy! Painting, play-dohing (new word! bonus.) cooking, pretending, and making daily messes seems crazy, but from what I've heard, one day soon, my three littles won't care to do any of that stuff any more. So, I'm trying to carpe the heck out of this stinkin' diem. 

Happy Summer :)