I want a "How To" book. One that tells me exactly how to mother my kid. One that tells me exactly which things Ellie can control and which things are just part of her CP. One that tells me how hard to push. One that tells me why. And how. And what to do about it.
Yesterday, after reading Ellie's school journal and finding out that she did something that she shouldn't have (don't want to get into details on this public blog....despite what many of you may think, I actually *do* have some awareness of privacy. Occasionally.), I actually, with raised voiced said,
"Do OTHER kids in your class do this Ellie? No? Then WHY did you?"
In my head, I wanted to conclude the statement with, "Why can't you just act like the other kids in your class? Why, Ellie? Why?"
Ellie cried. And said, "I'm sorry" about 20 times. I, of course, felt like a terrible mom.
Once the shock and frustration had subsided, I started asking myself over and over again, "How am I ever supposed to know what Ellie's body can or can't control?" And how do I discipline effectively while not knowing? I always want to give her the benefit of the doubt and assume she CAN do something. But what if she really CAN'T? And what if the behavior (which, in this case was both physical and psychological) that I'm chastising can't be helped?
There are thousands of parenting books out there. I order them for my library often. But none are applicable to me. None answer these questions.
It's lonely out here today.
I wish I had more time to expand, but there's this thing called "Intellectual Freedom Case Research Paper That's Worth 30% of My Final Mark" needing my attention. Which isn't all bad. Cuz, you know what? There are lots of books out there on THAT topic.
“Mom!My toe feels
better today!Thank you so much for
praying for me.”
Write a 5-page essay on this quote.Examine each word and consider the
source.Once completed, publish to
blogger.Due October 13.
Oh, wait.This isn’t
The dumb thing is, I could do it.Three short sentences.So much meaning.
The source?My sweet
Ellie.From her mouth.The mouth that wasn’t “supposed” to spew out
words.I’ll never forget the day Ellie’s
speech therapist stood in our living room and told us that he’d bring some
augmentative communication devices during his next visit.Because Ellie would probably need help
expressing herself.Sometimes, I like to
remember those early predictions because they help me see how far Ellie has
come.And how people, even those with
graduate and medical degrees, aren’t God.They can predict the future, but not ensure it.
The toe issue?I’ll
spare you the gruesome details (and won’t post a pic!), but let’s just say that
Ellie’s got some serious toe nail issues.Because she drags her feet when she walks and crawls.She’s got layer upon layer of toenail,
because she’s constantly damaging it.I’ve
often thought that her toes MUST hurt, but the girl rarely complains about
it.It could be because the pain is less
important than the independent mobility.Every book I’ve read about CP includes information about pain, and
explains that as affected bodies age, the pain gets worse.It hurts my heart.I wish I could take it from her.I pray for grace.That Ellie will deal with her pain with grace
and composure.And that God would be
gracious and take it away.
“Thank you so much for praying for me.”Oh, Ellie.If she only knew.Perhaps one day
she WILL know.Maybe there will be a day
when she prays for her kids and she’ll understand it.It’s the only thing I know to do.I feel so helpless so much of the time, the
only thing that is assured is prayer.Not assured to be answered the exact way I ask, but assured to be
heard.I think Ellie’s starting to, in
her seven-year-old brain, understand a bit of that.She’s starting to comprehend that while
praying “to feel better” doesn’t mean that her sickness or pain will be
immediately (or ever) healed, talking to God brings comfort.It’s amazing to see.It is the sweetest sound.It is humbling.
“Mom”.I know there
are many of you reading this blog who want nothing more than to hear that
word.I don’t take it for granted.
One line.So much
(Aren’t you glad that I didn’t actually write five pages
It's like the friend who, without reason or warrant, you never called back. And then it gets to be 14 months since you've talked, and you feel too stupid to pick up the phone.
But, you miss her and kinda really wanna talk to her. And write again.
To break the ice, perhaps this post should be a catch-up of sorts.
I am mom to a seven year old. SEVEN! Ellie is so pretty. And fabulously funny. And a fantastic first grade student. Because she's the veteran of the bunch. As Richard and I explained to Ellie in summer: she did such a great job at being a first grade student last year, we thought she should stay in grade one another year to show the other kids how it's done. We didn't mention how difficult a decision it was, keeping her back. Thankfully, this new school year, with Ellie modeling stellar first grade behavior, has left us without any doubt that we made the right decision. She's made new friends and is academically at grade-level. School life is good.
Ellie was a flower girl at my cousin's wedding in June. Precious? Um, yes.
Physically, there hasn't been a huge amount of progress lately. I'm sure that's a post (or ten) for a different day. Ellie's growing up. She's getting bigger and with that, some things are easier and a lot of things are harder. She's tall enough to get onto her bed and most chairs by herself. She uses her walker to scooch onto the bed or seat and can pull herself back. We hardly ever lift her anymore. Thank You Jesus! 'Course, with each growth spurt, Ellie's muscles get a little tighter, which sucks. She's in her wheelchair a lot more, which is also good-and-bad. She loves to "work" at her desk and can spend hours in her wheelchair, filling her sticker books and doing her "homework". With that, however, comes the replacement of mobility aids. She'd always choose wheelchair over walker and would NEVER volunteer to use her canes. Is life in a wheelchair horrible? No. Especially if she's able to transfer herself. We're re-focusing a bit. It's not about the walking as much as the independence. The i word. I'm sure it will come up many times in blog posts.
Beachin' It 2012
I am married. Even better than that? I'm happily married. And y'all know I'm not taking that one for granted.
Richie and I took a little trip this spring...
I am a librarian. HEAD librarian. Eeek! I was promoted in July, when my boss retired. I love my job. I mean, LOVE my job. Granted, had this post been written a month ago, I may not have used the word "love", but I got through the this-is-completely-wacked-insane-busy month and now it's smooth sailing. Or, at least that's what I'm telling myself.
I am a student. But, but! Wait for a it: I am a student at the UNIVERSITY OF ALABAMA! Livin' the dream, peeps. Except, it hasn't felt all that dreamy. Sigh. It's been a lot of work and a lot of reading and a lot of second-guessing myself. Ten years out of school feels like a lot. I've forgotten a lot of stuff. I need a lot more sleep than I did in undergrad. However, I've now received a couple graded assignments back, and I'm feeling quite a bit better about things. I've found a groove and I'm sticking in it.
And for those of you who think Library Science is boring....it is. Useful to the boring aspects of my career, sure, but I've gotta admit that my classes are on the same level as NASCAR on the "interesting" thermometer. But, I love my job, so I will conquer through. And, once my pre-reqs are done, I get to go outside my field and take courses in theology and political science and history, oh my!
I am living in my wonderfully wheelchair accessible house.
I am learning about the goodness of God every.single.day. I could not have come out of the snake-infested valley were it not for His leading and hand-holding. I'm not doing this life without Him. Ever.
Well, at least it will be a swimming pool for a few more days...and then it turns into my BASEMENT! That's right, folks, the house-building has begun! I told Richard that he now officially could NOT lose his job, ha!
It's been a bit of a rough week on the house-building front. We were hoping to start construction at the beginning of June, but were delayed by the "City" (it's still ironic to me that our town of 13,000 people is considered a city...). Our contractor called us up late last week and started the conversation with these words:
I've got some bad news. The City doesn't like your blueprints.
Long story short (read: I don't understand half of this, since it has to do with numbers and math) is that our yard has to drain back to front, instead of front to back, as we first thought. In order for the correct drainage to happen, we had to change the grade and slope of our lot.
Seems like a simple fix, right?
Sure, if you're building a normal house. The kind of house that EVERYBODY ELSE can build. A house with no wheelchair ramp.
But, that's not us, is it? And the slope of the garage is a HUGE deal for the wheelchair ramp. Every inch of slope requires a certain amount of ramp-length. In order to fit the ramp into our garage with the new slope, the ramp would have to extend OUTSIDE. I am not going to make my kid walk outside in the snow and minus 40 degree weather in order to get to the 17-mile long wheelchair ramp.
We tried and tried to come up with a viable ramp solution, but given the fact that our house is pushing all size limits of our lot (we REALLY like our location...which happens to come with a small(er) lot), it just couldn't be done.
So, now, instead of a ramp in the garage, we have a wheelchair LIFT. Ellie will walk or wheel her way to the house door, get onto a lift, push the button, and be hoisted up to the door level (it's a mini-elevator). It's a perfectly fine solution and may even be easier and quicker than a wheelchair ramp.
But, at $10,500, it's a heckuva lot more expensive.
You read that right: over TEN GRAND.
These are the moments where my head and heart wage war. In my head, I know that I should be thankful that Richard and I have jobs, that we live in a country where wheelchair lifts are available, that we've been blessed with the financial ability to build a new house, etc, etc. But, in my heart, I just want to scream, "Why does everyone else get to just build a house?"
Just build a house...
And not worry about wheelchair ramps. And not worry about where the controls on the oven are, in hopes that Ellie will one day be able to make her own Kraft Dinner. And not worry about the threshold dimensions into the accessible shower. And not worry about the diameters of doorways and hallways. And not worry about how their child(ren) will get down to the rec room in the basement. And not worry about the occupational therapist looking at every single revision of the blueprint, to make triple-sure that the house is as accessible as possible.
And spend $10,500 on 3 separate trips to the Caribbean instead of on a blasted wheelchair lift.
It's frustrating. And, yet, as soon as the thoughts are spewed from my brain, I realize that I am being selfish and ungrateful. I want to consider it a blessing and honor to do this for Ellie, who is so worth it. I don't ever want her to feel as if she is to "blame".
Sometimes, though, it's a struggle to think of this as a blessing. Sometimes, I wish we were like everybody else.
But, hey, everybody else doesn't have such a cool-lookin' swimming pool, do they?!
So. Richard and I went away with our youth group this weekend. Every other (Canadian) May Long weekend, our church denomination holds a national youth conference, “Abundant Springs”, in Saskatchewan. Sixteen hours of bus-riding craziness with 20 of our beloved teeny-boppers, and 3 full days of rockin’ and praisin’ and playin’. Good times.
When I was in high school, I went to Abundant Springs. And rocked it up hard. I mean HARD. I have some amazing memories from those long weekends. And, I apologize profusely to my youth leaders, who had to deal with my blatant immaturity and not-quite-as-funny-to-them antics. Now I’M the youth leader, and my heart bursts with happiness when I watch my “kids” making similar memories. (Except the ones that are made after 2am. Those aren’t quite as heart warming.)
I often joke that I’m putting in my time as a youth leader so that *my* kids can pay it back by being Ellie’s sponsor. You know, when Ellie’s rockin’ it up at youth group.
When ELLIE’S rockin’ it up at youth group.
Ellie? At youth?
It’s going to happen. And I thought about that a lot this weekend.
Will Ellie be able to stay in dorm with all her friends? Will she be able to navigate herself to the bathroom without help? Will there be a wheelchair or walker accessible shower in her dorm? What will she do when it’s time to play the “big game” on Sunday? Will the kids want her on their team? Will she even be able to GET to all the stations, with her wheelchair? How will she get on the bus? Will I have to drive her separately? Will her friends wait for her when she takes longer to get places? Will she have friends?
My heart feels panic when I process all these questions.
Because I want this for her. SO MUCH. I want her to love being a teenager as much as I did. I want her to feel safe and secure within her youth group. I want her to have BFFs that love her and love Jesus. Like mine did…STILL DO! I want her to giggle in her dorm room, as she tells her girlfriends about the guy she has a crush on (who, of course, will also love Jesus and won’t ever hurt Ellie’s heart. Right?!).
It’s just so hard to imagine. Because of all the questions. All the “what if’s?” All the unknowns.
But, there is something I know without a shadow of a doubt: If Ellie wants to go to Abundant Springs 2021, I will move the Saskatchewan Prairies to get her there.
According to our conversation in the car this morning, there will be some prairie-moving to do:
“I wish I could go to Sassassawan, Mom.”
“Well, you’ll get to when you’re older.”
“Old like you?”
“No, not *that* old. When you’re Shane’s age.” (Shane is one of our youth kids, and Ellie adores him.)
“When will I be Shane’s age?”
“In 11 years.”
“And when I get to go to Sassassawan, will you and Daddy be there too?”
“No, I don’t think you’ll want Daddy and me there. You’ll want to be there with your friends. And your youth leaders. Maybe Shane will be there as your youth leader!”
“Because you and Daddy will be too old?”
“And because when I’m Shane’s age, then I won’t need you and Daddy to be there?”
“But you and Daddy will come pick me up when the bus comes back to the church?”
“Oooh, I can’t wait till I’m Shane’s age! It’s going to be so much fun!”
Yes, sweet Ellie. It will be so much fun. And Daddy and I will be there to pick you up, anxiously waiting for all the stories that you probably won’t want to tell us until you’ve had a good night sleep. And when you say, “I love you, Mom, but I’d rather be back at Abundant Springs, hanging out with my friends,” I won’t feel one bit of sadness.
I'm posting this on both blogs. It's just too good to leave it on just one.
I was nervous yesterday. Not nervous for Ellie, but for me. And then, of course, I felt guilty for being so selfish. I was nervous about people looking at Ellie. Not because she was breathtakingly pretty. Not because her smile was radiant. But, because of her...uniqueness.
But, then Ellie came on stage and the only emotions I felt were sheer joy and pride. I mean, LOOK AT HER. She just breathes life. Life to the fullest. Unabashed happiness. Because, as Ellie would say of herself, "God made me special and I'm a princess!"