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.

My Daybook

Outside my window ~ a little cooler and breezy after the rain last night. Birds. Sunshine. Perfect.

Around the house ~ it's a mess, but I can hear the washer working and I plan to pick up the randomly distributed toys, jackets, shoes, and piles of stuff later today before I go get the kids.

I am thankful for ~ all my kids' wonderful teachers who make me feel at ease while my treasures are away from me

Pondering these words ~  Hosea 2:15 "I will [ . . .] transform the Valley of Trouble into a gateway of hope." Love that.

I am remembering~ Ms. Dee, one of my other mothers who was gone too soon.

Looking forward to ~ the boys' 2nd birthday party next weekend :)

I am noticing ~ that I will do just about anything to avoid grading essays -- cleaning, blogging . . .

I am thinking ~ I wish Chris was free more often to play music gigs and jam with his friends. We have this habit of tying him down. Here he is playing in Alexandria last weekend:

From the kitchen ~ not too much excitement. Shepherd's Pie is the go-to supper around here. I was excited that the boys ate their chicken quesadillas on wheat tortillas really well the other night. If only I could hide veggies in there.

I am going ~ to look for my next flea market chair today, hopefully. More living room seating? Here's my last find (after a quick fabric change):

I am hoping ~ that I can figure out how to get in all the exercise and therapy the boys need each week. time in the stander, belly work, trunk strengthening. I would be proud and very fulfilled to work it all in each day.

One of my favorite things ~ This is random, but I just discovered instant hashbrowns. They are in a little carton and you rehydrate them: bam -- hashbrowns with no mess and no thaw time! It's the little things sometimes.

I am reading ~ A Separate Peace (teaching it, so re-reading it) and the study for my Sunday School class, The Call to Follow Christ

I just saw this online (I added this one) ~ bath seats I want to try for the boys -- might allow us to extend bath time and let them play together. I hope the seats can handle the weight of my wittle chunkies:

A picture thought to share ~

Ellie before glasses:

Ellie with glasses:

Doesn't she look so incredibly grown up? I can't get over it!

A tiny life. A tremendous purpose.

Every life is valuable. There is a larger purpose to our lives beyond the here and now. Our physical existence is secondary to our eternal significance.

I believe these statements; I think I always have. But I am learning how incredibly true they are right now.

My friend lost her sweet baby girl this week. Anne had special medical needs, and she experienced a lot of suffering in her short life. Too much. But her life was no less valuable than any of ours -- she had a special purpose during her short stay here in our world. She fulfilled it.

Who else can bind our hearts together, can make us see the world in a completely different light, can cause us to appreciate those small graces all around us, can teach us real compassion, can make us overlook the insignificant annoyances, can inspire us to fight, can teach us that every breath is a miracle, can remind us of the very, very few things in life that matter at all . . .

only Anne.

Only sweet little Anne and kids like her, who were dealt what we see as an unfair hand. But she touched more lives and fulfilled a greater eternal purpose than most of us will ever dream of. Our hearts might be broken, but hers isn't any more.

Her little life, from its very beginning, mattered. I just believe that.

"If we had no winter, the spring would not be so pleasant."

We're in a bit of a winter fog around here. Our home has been a little down and sort of stalled out, especially in the fun department, for the last couple of weeks. A stomach bug x3 followed immediately by another fever virus x2 landed us into a few doctors' offices (of course, in the end for no reason, since it all ended being viral). But it's also just the cold weather -- the kids are stuck inside, much to their oft-expressed dismay. But my experience-soaked discovery about these undesirable periods of life:

It really is just a phase; things will eventually get better.

In other words, "This too shall pass." It is trite, but no less true.

Lately:

But Ellie will be rockin' and rollin' with her brothers again very soon:

Happy Winter!

Holiday-ed Out

Our family has been busy enjoying the holidays -- traveling, visiting, eating, playing, singing, buying, praying, giving, all that. We survived celebrated Christmas for a few weeks, including 5 family get-togethers! And now we've rung in the new year here at home. 

I love to look back at my blog and see how far we've come and how much we have all grown and changed over the year, mostly for the better. I didn't get to sit down at the computer very much last year, but here's our first blog of the new year, with more to follow, I hope:

Christmas and I have a love/hate thing going on:

I LOVE to see family and friends and visit with them all. They're so mean for ever leaving.

I LOVE seeing kids get excited over the box rather than the fancy gift inside. :)

I LOVE thinking about Christ -- love and peace and perfection. He came to rescue us when we were just in a mess. I hope I can do the same (well, not the SAME, but I know what I mean) for someone else.

I LOVE the music, good grief how I love the music! "Ring, Christmas Bells", "Carol of the Bells", bells bells bells, bells!

I HATE the expense, well, the wasted expense. What ever happened to "I picked up a little something that made me think of you?" We always have to over-do it.

I HATE the traveling. We are exhausted, and we didn't even go very far. I thought about sleeping in the van rather than unpacking when we got home.

I HATE the sweets everywhere I turn. Cut me some slack, Jack. I can't keep buying bigger pants!

I HATE the have-tos -- what we have to bake, give, buy, attend, and decorate. Nobody cares if we spent our savings or put 1,000 tiny lights on our house if we grumble about it and don't even enjoy it. Sheesh. Bro. Easley always said to turn those got-tos into get-tos.

Having little ones made this Christmas buckets of fun, though -- Ellie, Jack, and Woody believe in magic and they love so purely. Everything is new and exciting to them, and it really does make me remember those times. Anything seemed possible, didn't it? Well, if Jesus's mama taught us anything, it's that "Nothing is impossible with God." I'll try to remember that more this year.