Yes or No

At church during Vacation Bible School a couple weeks ago, I taught the kids a lesson during which they had to respond to several yes/no questions. The twist was they had to answer in a language other than English: oui, non, da, nyet, si, no, jah, nein. It was pretty entertaining. We sounded like a meeting of the United Nations, which was appropriate, since the theme of the week was New York City.

Well, that started me thinking about how often I have to say yes or no every day at home: No, you can't have candy for breakfast; Yes, you have to brush your teeth; Yes, flamingos stand on one leg quite often; No, you may not lick the toilet (sadly these are all actual statements overheard in my house this week).

Chris and I sometimes get so exhausted it seems like all we ever say is "no." I catch myself saying it almost out of habit, and then I stop and ask "Why not?" Is there really cause to answer with a no on this issue, or am I just tired of making decisions and cleaning up messes? Can I paint, Mommy? (Why not?) Can we have lunch on the floor in the living room like a picnic? (Why not?) Can we stay in our pjs and watch a movie this morning? (Why not?) Can we have peanut butter and sprinkles on our pancakes? (Why not?) Can I help you make the cornbread? (Why not?) Can we have a playdate tomorrow with _____ ? (Why not?)

Some people call it picking your battles, and I guess that's basically the idea. I don't want to be the "No Mom". Being a "Yes Parent" who reserves her no's for when there's a solid reason seems much more furry and cuddly, right? Is it going to hurt someone, make someone sick, show disrepect to someone, destroy something, annoy someone, or start a very bad habit? If yes, then the answer is "no." If not, then why not?

Same goes for grown-up stuff too -- why say no to something new or something that might be fun just because it might require a little extra effort on my part or it might mess with my routine a little bit? Usually, I'm glad later that I didn't dismiss the idea and just went for it instead. Why not stay an extra day, try something different on the menu, take the scenic detour, or meet back up later? Even those numerous trips, tasks, or chores that I simply don't want to do but are important to someone else and might bring them happiness -- why not?

But there is also the important art of when to own my "No".
I frequently find myself saying yes to ideas, projects, and tasks without giving them much thought at all, and then I am completely worn out from all that yes action. Is the goal something that is helpful to my family or to someone else? Is the outcome worth my time and energy? Will it be memorable or forgettable? If nobody really cares and it's just something on a guilt-soaked mental to-do list that will only drain me of energy and put me in a bad mood -- no.

I'm a work in progess, but I am close to mastering three skills involving yes and no:

1. If something will make my kids happy, help them learn something meaningful, or make memories, and there is no real reason to say no, I try to say yes. I sometimes still struggle with getting my butt in gear, though.

2. I try not to apologize or make excuses for my no's; I just say no. I'd rather be given the options and decide for myself if a or b is beneficial enough for our time.  Then I can give an honest yes or no, without all the animal dung that we usually attach to our responses.

3. I try to accept "no" as a perfectly appropriate response from other people. Do they really need a reason other than they just don't want to if the choice in question is not that important? Nope.

I guess writing a blog somehow landed on the yes list -- Oui, Da, Si, Jah!

Four Years have Flown

My sweet Ellie Marie turned 4 yesterday!

She isn't a baby any more :( Here she is at 2 trying to perform, despite a familiar soundtrack  in the background (her baby brothers). This is one of the things I love the most about my Ellie -- she finds a way to blossom in our craziness!

I would say that Ellie is:

Entertaining ~ We get to see the "Ellie Show" live every night. Lately, she gets behind a curtain and I must properly introduce her: "Ladies and Gentlemen, Boys and Girls, Children of All Ages -- Now Introducing the Amazing, the Talented, the Beautiful . . .  Ellie Marie Wilson -- Walking Like a Dog and Blowing a Whistle!" Here's the hula girl in action:

Loving~ She wants everyone to be happy, so she tries very hard to keep the peace. It hurts her feelings if the boys get into trouble or if Mama isn't feeling well. She'll whisper "Boys, don't be loud; Mommy has a headache!"

Like Her Mama ~ She enjoys snuggling in and watching TV, reading a good book, having long conversations, and eating yummy food like fruits, veggies, chocolate, and cookies! She isn't too interested in hairbows or fancy clothes -- comfort is key. Poor thing even looks like me :)

Inquisitive ~ My girl loves books, playing learning games on the computer, and going to school. She asks questions about the river, the train, the birds, the flowers, the groceries we buy, and . . . air pollution? Thanks, "Sid the Science Kid."

Easy-Going ~ Ellie Marie is a happy and easy-to-please little girl. She gets excited about anything new and will pretty much go along with whatever her Daddy or her teachers come up with. She is a good listener and rarely gets into trouble, since she is kind and pretty willing to go with the flow. Flexibility is highly valuable in our home, as you can imagine. Here she is trying out her big and exciting birthday present  -- The Extreme Coaster!

Happy Birthday, Ellie Marie! You will always be my baby girl :)



The Three Seasons

In our home, we have three seasons: School, Christmas, and Summer.

Switching gears for a change in the season is always hard on little folks. They thrive in a routine and resist any change to that routine; it takes time for them to settle in. Nevertheless, here we go again because Summer is upon us. Ellie and I are both finished for the year, and the boys have four more days left in school.

Summertime is something I love and dread quite equally.
I am going to be teaching two online courses, since I can't seem to do one job at a time. But being a mostly stay-at-home mommy is job number one. The love part comes with all the extra time I get with the kids -- playing, being silly, and cuddling. The dread part comes in when I consider that it is very hard work to keep the children busy and happy at home, since they are accustomed to having lots of different playmates and plenty of changes in scenery during the school year.  To the boys, mommy is SO boring compared to having three teachers, two therapists, and eight playmates around at school. To Ellie, she just wants to GO . . . anywhere, anytime. Staying home is nice to Ellie, but not nearly as nice as checking out what everyone else is up to. Oh, and the heat -- my God the heat!

I keep asking myself, "How am I going to do this all summer?"

Plan of Attack
The plan to keep everyone active and content even in what is sure to be another long, hot Louisiana summer includes: three weeks of summer school for the boys to keep up their wheelchair skills, swimming in a big pool once a week, physical therapy twice a week for the boys, storytime at the library, arts and crafts, perhaps a playgroup once a week, swimming lessons for Ellie, and Bible school. Throw in five or six doctors' appointments already on the calendar, and it will be August before we know it and time to head back to school.

The Challenge
The challenging part is that the boys aren't quite able to get around on their own yet. They haven't mastered crawling or using their wheelchairs enough to go get what they want or to find something to do on their own. This leads, inevitably, to endless commands being hurled at me or Ellie: "Mommy, I firetruck. Ellie, I ball. NO! I that ball!" They also have two favorite activities that keep the house a mess and keep me on my toes: putting any and everything in their mouths, and throwing anything they get in their hands across the room. It's a little game to see how many items they can throw and how far they can throw them. Great fun for them; a huge pain for moi. They are also textbook two-year-olds: they pull hair, bite, knock heads, and have meltdowns over which cup you hand them or which way you turn to go to Walmart. Joy.

Secret Weapons
We have a few tricks up our sleeves, though. First, I am embarking on a three-day total home reorganization with Ellie as my assistant --  toy and art supply storage, diapering and physical therapy supplies, outdoor set-up including the little pools and outdoor toys, and summer clothes storage. I'm hoping we can set the stage for an easy transition with easy access to all things summer.

Also, in just a few weeks, Ellie is getting a very exciting present for her 4th birthday: a rollercoaster! It resides in three large boxes in my foyer right now, and she knows her present is in there, but she doesn't yet know what it is. Unlike a trampoline, a swingset, or a playhouse, all my kids can use this big toy. It will involve a lot of screams of "again" and me lifting 35 pound boys over and over, but I'm hoping it will be worth it to see their excitement. Here's what it will look like:



Do you have any other ideas for summer sanity? 

How Ellie Plays

I have an almost four-year-old on my hands! Ellie Marie is a sweet and thoughtful big sister who loves to use her imagination. Sometimes her methods of play (like most kids' her age) are mysterious and funny to boring old grown-ups. Today, the three little ones played together so well -- no fighting, fussing, or meltdowns -- for almost 2 hours! I checked in, but mostly stayed out the way and let them explore and play. This was 100% due to my needing to finish up some last minute end-of-semester grading. Here's just a little taste.

(For those who claim I seem to only post blogs about my happy, clean, and perfect homelife, be careful what you wish for!)

Why does a pig in a bathtub need to be on a piece of newspaper? Sounds like a riddle, but no; it's a real question:

A lot of Ellie's playing involves putting toys, animals, and dolls to bed. Here, we have the classic create a bed for a doggie. She has a toy cradle in her room and plenty of dolls to put to sleep in it. But, I can see why she would prefer to put one of the boys' toys to bed on a impromptu bed, can't you? 

Another popular and time-consuming playtime activity for Ellie is stacking and piling things. Anything, really. Today, it's 1. books on a chair 2. two beds' worth of bedding, a couple of yoga mats, and a few pieces of the floor mat all piled on top of her brothers.



The aftermath of a couple of hours without complete supervision. Oh, the joys of parenting. But, I'll miss this one day, or at least that's what I've heard :)

Every Six Months (lengthy post)

Every six months, Jack and Woody visit Shriners' Hospital for the Spina Bifida Clinic. It's a day-long ordeal that is always somewhat bittersweet. We receive tons of information -- much more than we can process. And we get to see spina bifida displayed right in front of us, at all ages and all levels of ability. It can be overwhelming, encouraging, terrifying, and enlightening all at the same time. Here's a peek into our day at clinic.

The Sweet

The sweetest part of clinic is connecting with other SB families. I can't really explain how great it is to talk to someone about all the stuff that our SB kids deal with and discover that they know exactly what I'm talking about -- 'cause they've been there, are there now, or will be there. This week's clinic was especially sweet because I was able finally to meet the "other twins" we have heard about since before the boys were born. The girls are 7-year-old identical twins, and they are simply amazing. They are beautiful, energetic, bright, precocious little girls who will steal your heart in 3 seconds flat. Both of the girls were born with spina bifida . . . and both of the girls ran, jumped, and explored all over the hospital, mostly without their braces! They are rockstars :) Their dad was super, and we exchanged e-mails. I am beyond happy that we finally got to meet these two sweethearts.

We also got to meet a few teenagers this time, and well, let's just say they inspired me to dig deep and decide every day to be positive, so the boys will have a shot at being confident and completely comfortable with who they are. I want them to feel blessed. (Because they are.)

Exhibit A: a young teenager who walks independently most of the time, and you'd probably never know she has a medical disability. But she is very down on herself, frightened by social interaction, and just insecure all around.  We bonded a bit because she is a big-time reader. Always something new on her Kindle. She is beautiful, intelligent, and very sweet. In her mind, though, she's just different, weird, and gross. By the way, I got to talk with her for a little while, and I started sounding like a motivational speaker. I told her that she might think everyone is focused on her difficulties with walking and with bathroom stuff, but 95% of that is just in her head. And even if people do notice her differences, that doesn't mean they couldn't be great friends and a lot of fun to hang out with. She smiled a lot and said she is scared to go to high school next year. I'll be praying for her.

Exhibit B: a sixteen-year-old girl who rolled up in her wheelchair to meet the boys. She has a big smile on her beautiful rosy face and thinks the boys are adorable (because they are . . duh!). She strikes up a conversation and says she travels from Oklahoma to come to Shriners. She's been coming since she was two and thinks of the staff as her second family. She cracks jokes, asks about me, and tells me she forced her best friend to tag along with her on the trip. Her friend teases her and they both ooh and ahh over the boys for a while. She seems to have probably never walked much, if at all; she is bubbly and very social. Since she comes off as very comfortable with who she is, her positive attitude is contagious. I wish I was sixteen again so I could be invited to her parties and we could hang out :)

The Bitter
(Warning: mega medical mumbo jumbo ahead).
At clinic, we find out how the boys are progressing and some goals we can work toward during the next six months. And a few bits of news that can sometimes be difficult to hear. The breakdown usually includes Neuro, Uro, and Ortho at our clinic, but this time we did not meet with our neurosurgeon. We'll see him in June at his regular office. Here's the dealio:

Urology: Yes, lovely urology. For those who aren't familiar with how SB affects this system, I'll give it to you as simply as I can (because I only have a basic understanding of it myself so far). The boys do not have full  (or possibly any) control over their bladders and bowels. Also, because they don't have the right nerve impulses to empty the bladder completely, they have urinary reflux (some urine backs up toward the kidneys). Therefore, we have to keep a good eye on their kidney health. Urinary tract infections are common for these kids, but our boys have STILL not had any, so yay yay yay for that. Most people probably have no idea how big of a deal this is.

At this clinic we were told that we need to start using a catheter about once a week to check the amout of urine that is hanging out in the bladder after the boys wet their diapers. We will measure it and document that for our next clinic. At that point we will also do another urodynamics study (a video x-ray of the urinary system at work, using fluids and catheters) to determine the pressure of the bladder/kidney relationship and the exact amount of reflux they have. If they have any infections, if they have too large an amount of residual urine, or if their reflux has worsened by then, we will begin catheterizing several times a day to help the bladder empty completely and keep the kidneys healthy. This is the news I knew was coming eventually, but it seems we have been given another reprieve from cathing daily, for at least six more months. Cathing keeps the kidneys healthy and can have a very positive effect on health later in life, but to be honest, the word almost paralyzes me with fear and dread. It's a huge time-consuming inconvenience involving icky medical processes I don't feel qualified to perform (and it will be times two). At least I have a little more time to get used to the idea. And I will; I know I will.

Orthopedics: An x-ray showed that Woody has one hip out of socket. The doctor came in with this cautious look on his face like he was expecting me to burst into tears over the news, but thank you, thank you, thank you, BabyCenter Spina Bifida Kids board! I already knew that this was relatively common with SB kids and isn't exactly as devastating as it sounds. First, it doesn't hurt him, at least for now. Second, although having one hip out and one hip in is obviously not ideal, he will not have surgery right now (or possibly ever) to put it back in. If it gives him heck later when he's trying to stand and walk, we may have to go down that road. For now, since lack of muscle tone caused it to slip out, even if they put it back, it could slip out again unless he gets much stronger. So, we don't do anything. Weird, right?

Our physical therapy goals for next clinic are to increase the boys' upper body strength and increase the time they spend in their stander (a device that hold them up in a standing position so their legs can bear weight, grow, and develop correctly). Here's what theirs looks like:

They were molded for larger AFOs (Ankle-Foot Orthotic) this clinic, also. Their "boots" will be a little taller (to just a little below the knee) and offer more support. They will look a little like these, probably, but an alligator design (Jack) and a cars and trucks design (Woody):

If they are able to hold up their weight on straight arms, we could be ready to try RGO (Recipricating Gait Orthosis), which is a mega-brace that helps the boys, well, to stand and eventually practice walking using parallel bars or a walker for support! Here's what that will look like:



This would be a long (maybe years long) process that starts with 2 weeks in-patient to help us all learn the skills for using the equipment correctly. Also, they mentioned twister cables (so mechanical, right?), which I have yet to read up on, but I have heard of them. Exciting? yes. Terrifying? yes.

Overall, the bitter and the sweet made for a busy day, especially considering my sweet boys were just getting over being so sick it landed Jack in the hospital for five days with pneumonia. But Maw Maw Judy was there to help and to offer candy bribes whenever needed, so we all made it home in one piece. My guys are tough, and when I'm not, at least I know tomorrow's a brand new day.

We think we know, but . . .

we have no idea.

I have made a lot of friends online who share a very specific life experience with us -- the day we found out our kids would have the permanent disability called spina bifida. Most of us heard the news while pregnant and sitting in a doctor's office after a high-resolution ultrasound. Our stories all have different details, but the overwhelming majority were given the option to terminate. Don't worry; this isn't a rant about that, but oh boy, could I go there. My boys had SB before we had even named them: baby A and baby B were going to face some pretty enormous difficulties in life, and at that time, we didn't know exactly what those would be.

That day, our doctor made one specific argument for termination that has always bugged me, and honestly, it still does: "Think about what you will be doing to your little girl if you have these babies." Ellie Marie was about 18 months old when we received the boys' diagnosis. She would be 22 months old when they were born. This was the first day we had heard this heart-wrenching news and he had the nerve to tell me to think about Ellie? He had never met Ellie! He didn't know me. He had no idea what kind of family we were. Did he think I hadn't considered that having two physically challenged brothers might make Ellie's life a little tougher?

Of course, we knew that Ellie would be fine -- she has always been a trooper and honestly, it didn't matter. We didn't have a choice to make; God had already made it when he gave us the boys (it was done deal already; seemed crazy to me that this doctor thought we had a say so). But I guess I still think about what the doctor said and wonder what Ellie thinks about our family and all the craziness that is our life.

This brings me to the story I sat down to write today:

I was a little sad when we found out Ellie had to get glasses at 3 years old; I'm not sure why, but it was probably about not wanting to cover up her sweet little face. I worried about her not adjusting well to them or getting teased when she got older. Well, turns out she doesn't mind them at all. We also get to go up to Shreveport every 2 months for an ophthalmology check-up since she is using an eye patch to strengthen her weak eye. She used to hate doctors but doesn't mind this one (no shots). PLUS, I was thinking that this gave her a mommy day without her brothers; they were usually the ones I had to take to Shreveport while she was in school, since ALL our docs are there.

I was very excited that this past visit was early enough for us to play around in town afterwards -- just Ellie and me! And boy, did we! We shopped, we rode the trolley and the carousel, we played at the playground and ate popcorn shrimp at Joe's Crab Shack -- and she even had a sip or two of Coke (big deal when someone other than a grandparent lets her do that!). I sat there at lunch thinking she must think it is such a relief not to wait around for us to load wheelchairs, change diapers, fill sippy cups, help the boys slide, stop them from eating the rocks, and all that stuff. Instead, she looked up from her bucket 'o shrimp and exclaimed, "Mommy, we need to come back here, but we need to bring the boys next time! They would  really like that trolley, and they could watch me climb on the playground. They like doing that. And you and Daddy could hold them on the horsies at the carousel, too!"

I'm such an idiot. That girl missed her brothers. She is not just alright with them being in her life; she's blessed. She's not even 4 yet, and she gets it. She knows that when you love someone, you don't mind the inconveniences that come along with the deal. You still miss them when they're not here. I'm so thankful that our boys are here.

And that doctor doesn't know jack. Or Woody. Or Ellie.

God Bless Elmo

I am thankful for a lot of things: love, life, health, forgiveness, my home, my family, my job, joy, peace -- all that stuff.

and ELMO.

I could kiss that little red muppet. I want to shout it from the rooftops: "God Bless You, Elmo!"

"Elmo's World" aires for the last 20 minutes of Sesame Street, and for about 20 minutes, all three of my little ones will sit nicely and watch educational TV. Lately, my two-year-old boys will bite, hit, and pull hair if they are within arm's reach of one another (or not, in Jack's case, as he's rolling and scooting all over the place now). And there aren't too many things that 2 year-olds and an almost 4 year-old have in common. And then there was Elmo recorded on the DVR and ready for quick access.

We reserve Elmo for those emergenecy times when we can't have our eyes directly on the kids for whatever reason, or maybe I just need a few minutes to do A, B, or C without the disruption of fighting, whining, or unexpected messes. And yes; almost every day there is an appropriate occasion for the use of Elmo -- oh who am I kidding: every day.

You have come to my rescue and salvaged what was left of my sanity on many an afternoon, Elmo, and today, I salute you.