Sunday, October 21, 2012

Hope

Hi! It’s been over a year since I’ve written here. Most of my writing has been going to ksl.com but I really needed to write this essay knowing only close friends and those who know our lives would read it.

I find great comfort and relief in writing and I really, really needed to get this out about a recent doctor’s visit/expedition. Talking about it just wasn’t bringing the closure I needed and I knew instinctively that I needed to write. It’s not the best piece with grammar, tense, etc. but this was more for content and reflection.

I don’t expect to have this amount of time for therapy writing soon but every now and again I might.

Thanks for reading anyway.

Most days I forget how the world sees my daughter: a cute eight-year-old who walks with a strange gait, who most-often is drooling and who uses a communication device to speak. I forget that she resembles a broken marionette that has snipped her strings and says so much with a smile. Yes, she is beautiful but she’s is more, so so much more.

While meeting with an orthopedic surgeon recently he explains to me that kids will walk when their brain is ready. Physical Therapy is helpful  but you can’t teach a child to walk. All kids with Cerebral Palsy have delays and what we parents think is a miraculous cure because of all the hours of PT and home therapy is really just a brain that will tell the child to walk when it’s good a ready—and not a year earlier. He also, in his opinion, says if a child hasn’t walked by the time they are eight, they won’t.

At the time I just nodded because it all seemed so sure and clear coming from him. It wasn’t until later on the long ride home that it hit me. As the tears began to drip off my chin I kept picturing all those hours, days, months, years of working with her. On everything. Everything! About the only thing that came easy to her was smiling. Nursing was a nightmare, eating included aspirating; even holding her head up was exhausting for her.

You can’t teach a child to walk? Really? Because it really felt like we did.

I remember with her first walker all she could do was move both feet, barely pick them up and push her toes back to move a few inches. It was horrible to watch and I remember with great clarity surveying her arduous progress down the sidewalk thinking, “This will never happen. She will never walk. Why are we doing this to her?”

And yet, five years later she walks, runs and can kick a ball. Her endurance continues to surprise us all. She is miracle.

Can it really be her brain was just on slow-mo and would have eventually gotten there all on its own? Could I truly have just sat back and watched her struggle waiting for her brain to eventually get there? Was it all a waste, those (not kidding) thousands of hours I spent helping hold her head up, to sit, then transition to side-sitting, then to holding up on hands and knees, to crawling a centimeter at a time, to pulling-to stand one rung of a chair at a time, to learning to stand up without falling, bribing her with snacks to cruise down the couch, having three different walkers until finally at the age of four she left it behind to walk on her own? I mention this grueling list because it was. It was a sacrifice—a great one. Over many years and it’s not over.

This doctor with his off-the-cuff diatribe about brain and motor development honestly made me feel like a fool. I kept repeating in my head, “All that time! All that time!”

Was it all a waste? And even if I could go back in time, would I change anything? If a doctor had told me that back then would I have been content to sit on the couch and keep telling the therapists that if she was going to walk, she would? And if she was going to crawl, she could?

I just wonder why it has to be so hard! Do doctors, insurance companies, special need product vendors, and even therapists really get how hard it is? It’s not like we are all standing in line jumping up and shouting “Oooh, oooh, pick me, pick me!” Yes we love our kids, yes we fight and advocate for them but would it be too hard, take too much thought and time to make it a little easier?

To clarify that you don’t have a wheelchair purchasing program BEFORE someone drives 300 odd miles with four small children to only leave with no promise of help and even worse, a little bit less hope then she came in with?

Perhaps I’m being dramatic. I may even be over-reacting. It wasn’t a heartbreaking appointment. We weren’t told our child is dying, or sicker than we thought. She left the same as she came in and though her mother was fighting back tears we were intact. But it was definitely heart pausing.

Driving the seven hours home I was grateful for the darkness and the music on the CD player to distract the children from the fact that I was grieving. Grieving all over again for her. For us. For me.

How can I forget that she has a disability? But I honestly do. It’s just the way it is. The way she is. The way our family is—we don’t know any different.

Sure, we have three other “typical” kids but having a wheelchair van, therapy appointments and lots of weird eating utensils lying around is our normal.

Months will go by (and sometimes years) when I forget how others see her. Because what I see is a strong, capable, intelligent, goofy and amazing child who inspires everyone around her. She has a special spark—a bit of God’s love in her that lightens up hearts and communities that are blessed to know her. She IS a miracle. What she has accomplished is nothing short of miraculous and I will not let a well-meaning and well-educated doctor take that away.

He may have 20 years of clinical experience dealing with children like Katie but he has no more than 20 minutes of experience with Katie. I wish I could show him a DVD of her life so he could see the marvelous progression she has made and how many people have been awed by her smile and determination.

I wish all health care professionals would pause and remember that you are not only to “do no harm” but also to not take away hope and faith in the future.

If that is how they see her past (a hodge-podge at best attempt to cure something un-curable) then how do they see her future? Do they see my hopes and dreams of her living independently and attending college as a sweet rose-tinted wish that will never happen?

What is their idea of her future? And why do I care?

And that’s where I pause once again.

I do this all because I care.

I care so much that I would drive 5,000 miles if needed, if that’s what she needed. And most mothers would do the same.

Not because we get awards for it. (We don’t). Not even for our children to thank us one day. (The never do). But because we can’t not help our children succeed and live the fullest life they possibly can. It’s our calling, our duty and our burden.

God called me to teach, protect and raise this child and if it takes wasted miles, time and money every once in a while then I guess that’s got to be expected.

And if it requires me to sob and turn to God often, then it might not be so bad.

Some may see her as “broken” but to me and all those lucky enough to earn her trust and love, she is the expert and I am in the front row with pencil ready for all she has to teach me.

Tuesday, October 11, 2011

I Will Survive

Yes, yes. Hold the applause please.

If I were Lindsay Lohan, y’alled be thrilled to have me back from re-hab. Again.

If I were Barbara Streisand, you’d be paying a pretty penny.

And

If I were the Beatles reunion tour, you’d be in some quasi-half-heaven-half-earth arena and probably the age of my parents.

But lucky for all of you I am not stoned, not a diva and decidedly not dead. Or even quasi-dead. Though sometimes the bags under my eyes speak otherwise.

But I am back.

Believe it or look the other way, but I have been working on this post off and on for weeks. It was sorta like staring at the box or computer files of un-scrapbooked and unprinted photos of all my children since Hannah was born.

A bit of overwhelment and wishing I could just start from today.

But I persevered, and unlike my children’s scrapbooks, here is…

My advice on how to travel

rest of summer trip 2011 156

Solo.

For thousands of miles.

For a month.

With four children under the age of 10.

One who screams and specializes in loud opinions.

One who needs a wheelchair and a bib.

One who thinks she does everything and gets nothing in return.

And one who is sure every object or digit can be turned into a gun.

I’m positive this type of travel is not recommended by AAA or even my mother and has never been articulated in a travel magazine, but out of necessity it was our best option to get us from Point A (Montana) to Point B (North Carolina) via point Q, F, W, and K. With a short jaunt on the south side of sanity.

rest of summer trip 2011 006

I would forewarn you to not attempt a trip like this if you:

  • look at children breathing and you feel completely stressed out
  • don’t enjoy hearing children’s music/movies/books for 10 hours a day
  • don’t like viewing agriculture whiz by at 75 mph or if seeing a truck loaded with pathetic turkeys growing more nekkid by the minute makes you want to gag or go vegan
  • think your children are even slightly inflexible about where they sleep, who they slobber next to or if they even get a bed.rest of summer trip 2011 004
  • really think if you pray hard enough, God will miraculously pick you up car, junk food and all and transport you 500 miles to your next destination.  It probably won’t happen. I’ve tried. And I’ve had faith to move vans before.

So, before you even go and you’ve decided you don’t meet any of the above criteria, here are the Good Ideas:

  1. Check the seats. Seriously. Have you looked at the measly 1/4” cushion some of these car seats and boosters have? It’s pathetic. And if I wanted to NOT hear “my bottom hurts” 5 gagillion times, it was well worth the pesos to go to JoAnn’s and get some foam, cut it into rudimentary cushion inserts and stuff ‘em in there. I know, I know—it’s a V-8 moment for all of us.
  2. Pack like a pro.IMG_1443 Like my friend Deborah who learned me how to pack by days and not by child.
    1. Step 1: go to Dollar Store and buy ziploc bags large enough to hold a yak.
    2. Step 2: Wash all the clothes and don’t let them wear anything cute for a  week.
    3. Step 3: Pack clothes on one bag for everything you will need in a day: PJs, day clothes, underwear for you and the children.  This was especially helpful when I would roll into a hotel at 9pm and I’d grab the rolling suitcase encasing one yak-sized Ziploc bag with toiletries and be done.
  3. Bring your own laundry detergent especially if you have kids with allergies/eczema like we do.
  4. rest of summer trip 2011 007If you have room, pack a baby potty for those inopportune moments when the toddler just fell asleep or you are on a mountain switchback with no facilities within a state line. I also line it with a plastic store sack to ease the clean up. (I must interject here that the south and mid-west had rest stops exactly every two hours. And for some reason Hannah had to use them every. single. time.)You laugh, but one day you will leave me millions. Don’t forget—leave me millions. And not millions of potties—dollars people. Dollars, and lots of them. rest of summer trip 2011 016
  5. If you know you will be travelling through toll country get a roll or quarters and don’t let your kids by candy with it because somewhere down the line there my a be an instance when you will be 50c short and it will be for the grace of all things good that the toll lady lets you hand in your last penny and gum wrapper and kindly tells you to stop soon to get more change because there’s another toll gate ahead. I seriously wanted to kiss her forehead and bless her womb. Or something.

rest of summer trip 2011 011

Bad Ideas

  1. Flarp. Good for 7 and up. Bad for little people who leave it on seats, clothing or just plain old whatever is on the top layer.
  2. Felt board or magnetic board kits—great until the kid drops it or loses whatever pieces everyone else wants.rest of summer trip 2011 020
  3. Telling your children all about the crappy hotel you bid for on Priceline by accident and that you will be staying in. Your 10 year old may be terrified to sleep and clings to you all. night. long because someone at any time could break in and murder us all.
  4. Not remembering exactly how many hours were between each stop, running late in Colorado and thinking it was a 4-6 hour drive to Wichita, KS. Think more like 10 and we arrived at 2am. Fun. Times.rest of summer trip 2011 084
  5. Thinking that the Worlds Largest Aquarium in Atlanta, GA would not be busy on a Tuesday. When you hear “World’s Largest” think “The whole world will be there.” Because they will.rest of summer trip 2011 107

Next time,  I will tell all the juicy details of my relationship with Jane, my GPS. I’ll tell you everything she is great at, everything that annoyed me and all the times I wanted to run over her with my Montana-sized tires.

I will also reveal my two favorite city names we drove through, the shmanciest rest stop you’ve ever peed at and links, photos and reviews of all the places we visited across 20 states.

Thanks for hanging in there and if you’d like for volunteer to scrapbook my children’s lives, please contact my agent.

Tuesday, September 13, 2011

Really

I really want to write a post tonight.

Really, I do.

I also really need to fold laundry, do some PTA emails and try to sew buttons on bibs.

I really would love if this season in my life had ample time for blogging and writing, but it just seems like it doesn’t.

I think I’ve written this twice before that I’m slowing down on blogging down to the point that it’s every Wednesday, but it seems be morphing into something a little more sporadic.

So, feel free to subscribe via email (see right) so you’ll get the full 411 (I’m so 90’s hip) or check back however often you fancy.

I’d really love to say I’m sorry but I’m not. I do the best I can when I can and right now I need to not be stressed.

I know you all have lives and I know I’m not destined to be a famous blogger, so thanks for taking me and liking me even if I’m a tad flaky and unpredictable.

Just call me a biscuit from a can.

And thanks.

Really, thanks for reading. I promise it won’t last forever and know I appreciate all your comments and encouragement.

Really.

Tuesday, September 6, 2011

Digits

Yes, Elvis is back!

(Sha-pung)

***sound of spotlight***, duh.

Except I have no flashy jumpsuit and I don’t look bloated and haven’t had anyone throw their underwear at me…

uh…this is getting weird.

But, hey—thanks for hanging in there and checking back when I faltered to return to bloggy-land on time.

I won’t bore you with all my life goings-on like making new bib/shirts for Katie, prepping kids for school and deciding I was spending way to much time checking email and removed myself from at least 15 blog and business email subscriptions--

Oops…I think I just bored you with the details.

I will, however, share nitty gritty stories, hilarious photos and goofy insights on America and travelling next week, but here is our trip by the numbers:

  • 5 million bugs were killed on the windshield, hood and grill of our van—I’m pretty sure gnats are on the endangered insect list now
  • 5,803 miles driven (give or take a couple hundred)
  • 621 photos taken
  • # of states driven through: 20  MT, UT, ID, CO, KS, OK, AR, TN, KY, MS, AL, GA, SC, NC MO, IL, IA, NE, SD, WY if you were wondering. And all you IA-ites we drove on the far western edge of the state, but wish, wish, wish we could have headed east!
  • 43 lbs. of snacks spilled
  • 100 (including children) people visited or bonded with (Thanks to all who laughed at all my lame jokes!)
  • 12 beds slept in (thank you to all our hosts!)
  • re-packed van/bags 5 times
  • 4 kids (ages 9 1/2, 7, 5, and almost 3)
  • 2 pages of scribbled notes taken while driving
  • 1 me with now slightly more grey hair.

All in all with all jokes aside (hey, that’s 3 “alls” in 7 words!—now 4!) it really was a wonderful and memorable trip.

The kids did really well and I actually, shockingly returned home rested and refreshed. In all honesty there were a few times when I saw the merit in spanking children but I refrained. There were also a few times when I wished I hired a nanny, a masseuse and had a zip-line installed on the ceiling.

Join me next week for some tips on travelling with young children and my thoughts on America (or the almost half that I drove through).

Oh, and pictures—lots of pictures!

And funny stories—lots of funny stories!

And door prizes—lots of…wha?

See you next Wednesday!

Tuesday, July 5, 2011

Trying

I’ve tried. I really have. To plan. To prepare. To make everyone happy.

But I can’t.

So, let me give you the truth.

I’m leaving.

Just for a while. Call it a sabbatical if you will.

The children and I are travelling through 19 states and will be gone from Montana soil for exactly one month.

It will be an adventure.

Or suicide-by-road trip, one or the other.

We have many things planned, many people to see and many miles to drive.

And before I can leave I have to pack the commodities of the free world, make one years worth of bib-kerchiefs, trim hair, teach Mary Greek and be emotionally healthy for the days ahead.

All this, plus the fact that I don’t have a laptop, means you won’t be hearing from me until late-ish August.

I know it’s not really a big deal—it’s not like I make money off my blog or have the hugest following, but I enjoy it and I know a few of you enjoy chuckling and crying along with me and I love that.  It still is surreal knowing that someone else reads what gushes out of my little noggin.

So, have a wonderful summer. Spend less time online or with your nose glued to some electronic device. Get outside. Get messy. Enjoy your family.

Plan your own adventures.

And pray for mine.

Bon voyage!

P.S. It’s my 35th Birthday in August. Sometime between now and then will you just leave a teensy comment about what you like about my blog, any suggestions or thoughts about what you’d like to see more of?

If you haven’t commented before, I’d love it if you did!

And if you’re lucky, I’ll do a little gift basket from our trip!

Thanks!

Elizabeth

Tuesday, June 28, 2011

High School

Ever watched the “Behind the Scenes” under the subheading “Extras” in High School Musical Tres?

Of course, you haven’t. 

If you have, you must have been looking through our living room window a few weeks ago and you are a low-life creep. Get some help, why doncha? And don’t tell anyone what I look like with nappy hair, popcorn peppering my shirt and children laying on my every appendage like the papasan section at Ikea.

For the rest of you non-delinquents, it went a little something like this:

Fade into closing shot with the six very rich teen stars jumping in the air with their graduation gowns.

Fade out.

Cue crying.

Cue hugging.

Cue sappy expressions sobbed into shoulders like, “I can’t believe it’s over! We’re really growing up! It’s been so amazing!”

Interview each cast member about how much they will miss this crew, this cast, this, well, everything.

And that’s pretty much all I can remember because it so did not affect my life.

However, it did give me pause to remember my own feelings when I graduated from High School um…somewhere along the lines of…um…sdlfjsdfjsdkaf17sdlfjasdfjaskd years ago.

Actually graduation wasn’t that emotional. But my last choir concert made me feel like I’d just been ejected from a plane and landed on my tippy-toes teetering on the lip of an active volcano.

The active volcano was named “Life After High School” which is really an unusual name, but scientists are kind of weird that way.

While I found myself staring into this strangely named fireball/ science project gone wrong, I was swamped with questions: What would college be like? Can I do it? Will I ever learn to open a box of macaroni? Will I ever meet awesome friends again? Will I ever have a date for crying out loud? What does the future hold?

And other such blatherings…

And so, here you have my letter from me (at the age of sadfjsdklfjasdf34djfasdfa;sdf) to me at the age of almost 18.

Dear Elizabeth,

Wow! You are so young. I mean, you are just SO YOUNG! Just look at you! No pizza dough tummy, muffin top or jiggle. Wow—you are insanely YOUNG!

Sorry. That probably comes across a tad condescending. You really are a great almost woman person.

You’ve been through a lot and have a good head on your shoulders. You know what’s important and how you want to live your life.

However.

HOWEVER.

There are a few things that might prove useful to know and tuck away in your teal luggage that your Mom bought you at JC Penney.

In bullet form since I like bullets, but not guns:

  • Ok, B.N.F. (Bad News First): acne doesn’t go away. I’m sorry to break it to ya. It comes and goes depending on hormones, hygiene and sweltering places you live. I’m really sorry, it really is terrible……..I’ll give you a minute to grieve.

  • Ok, better now? Did you wipe your nose with a noncomedogenic tissue? Kidding. You don’t even know what that means, do you? And that’s ok because I can’t even pronounce it. And neither can the rest of you out there, right? If you can, say it 10 times fast. See? We’re all weird and a smidgen pathetic, so don’t feel bad!
  • Those people you’re hugging and crying over? The friends you hung out in hallways with during musical rehearsals, travelled to NYC and vocal competitions with? They are wonderful people but a large majority of them (like 90%) you will barely have contact with until the invention of Facebook 16 years down the road. But that comes after the life-altering World Wide Web and and email. Don’t ask—even now, I still don’t really understand how it works. But believe you me you have been blessed with great friends and you will continue to be bonded with awesome folk.
  • You will shockingly graduate from your dream school (after attending two others) and you will have an inordinate amount of fun. Like gobs. On top of gobs. You don’t even ever lower your standards—it’s all sober and clean! You will make so many friends and laugh so much that you will 15 years later have permanent laugh lines.
  • Did I say permanent, because I really mean Per. Ma. Nent.
  • Also too, you will have a perma-wrinkle because you are forever losing your sunglasses. Buy stock. Buy many. If nothing else, remember this. BEWARE THE PERMA-WRINKLE!
  • Student loans are real. You will be paying them back for years and years and years to come.
  • You’ll never be a guy-magnet dating phenom—it’s just not in the cards. You’re cute, but not that cute. You’re funny, but not that funny. You’re smart, but not that smart. And you are among the lowest ranks of flirters. You are quite abysmal at it. If you were in a locked room with 20 eligible bachelors for an hour, you would make them feel like they were hanging out with their little sister and as they exit, you would be passing out your friends' phone numbers that would be perfect for each of them.
  • You will only kiss two more men in your life—the last being your husband. But don’t worry, you will have many guy friends. You probably would have had more kissers if you’d met your fashion-adept roommate earlier and she had been able to school you on the faux pas of combining flannel and sweats with the floppy pony-tail bun. But it did keep you in the single queue long enough to meet your husband.
  • No, he won’t be tall and blond. Or speak fluent girl-eze. But he is handsome and very kind. And he thinks you are hysterical. (Right, Jeremy? Right?)He will be a great Dad and he’s perfect for you.
  • Oh, and all those crazy names you’ve concocted over the last few years for your future children like Dannon Yoplait and Escondido Ballentine are a no-go. Thankfully you got married at 24 instead of 19 and your future children were spared the embarrassment of not fitting their name into the 7 squares provided for standardized tests (you’d think you’d know better, Elizabe) and were given very sensible names that wouldn’t get them shoved in a locker in 6th grade.
  • Don’t worry so much about money, which guy is “the one” or what people think about you.
  • Lastly, you know how you gained much fame and had much revelry showing everyone in High School your dolphin, weasel and car alarm impressions? Stop. Please stop. It really is unattractive and not as funny as you think.

Maybe I shouldn’t even tell you all this. You do pretty well despite the poor choice in clothing, the acne, the lack of flirt-ability and the car alarm side show.

Despite all that, life’s turned out pretty well. So far.

Not perfect. Not painless. But good. Great, even. I have the peace in knowing that God loves me. I have the knowledge that He has a plan for me. And I am surrounded by wonderful people who put up with my antics, my drama and my still-in-learning-mode-ness.

So, maybe forget all that lecturing, get as many laugh and sun-wrinkles as you want. Play pranks, goof off, work hard, serve others, make people laugh, and just have fun.

I know you will.

Love,

Elizabeth

How ‘bout y’all? What would you tell yourself on your High School Graduation day?

 

Tuesday, June 21, 2011

It’s comin’…

Hey, y’all.

I’m working on a letter to myself on my High School Graduation Day. It’s deep and weepy and highly educational which is more than you can say for most entertainment these days. So, just hold your horses and I’ll have it up next week.

Thanks for being patient (as if you have a choice) while I enjoy my children (and their fighting) being home this summer.

While you’re waiting read

That’s enough lettering for now.

Over and out.

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