Saturday, August 27, 2011

Happy Anniversary (of dx), MS

Each year at this time, I vividly recall the fear of "what if" as I uncomfortably rested in the donut tube.  I also think back to the moment I realized something was wrong, because the Tech (who happened to be a personal friend) reported back into the room to inform me that she was going to run the scan with gad.  I had said, "but the script didn't call for gad", which she affirmed, smiled, and quickly diverted.  Mind you, I didn't realize it was going to be a dx of ms, but I knew she saw something.  All I could think of was...please don't let it be fatal, please don't let it be a tumor, and please don't let it be something that affects my kids in any way.

Another thing I think of every year at this time is the way I received the news and who it was delivered by.  God certainly gave me exactly what I needed, exactly when I needed it.  I'm abundantly blessed to have friends in the medical community.  Because immediately after hearing those words, I was held through my tears and physical weakness.  She cried with me, uplifted me, and told me the exact thing I needed to hear...that ms would not change who I was as a mother.  Being a mother is first and foremost in my life.  First. Foremost.

Chris, I will never forget what you did for me.  I will never know how you brought yourself to do it.  I thank God for the strength He gave you that day, because I was able to draw from that when I had to deliver the same news to John, Mom, and Dad.  You were always there for me during the very worst of it.  Know that I love ya always, lady:-)

Which brings me to wonder, since I'm being quite sappy and all...what's the gift you give your mate on your 8th Anniversary? A simple google search tells me, "something bronze".  Well.  I do have a pretty nice tan goin' on!  That counts, right?  Yes.  I think so.

Thursday, August 25, 2011

Thinking of You, Pat Summitt

For those who don't know who Pat Summitt is, allow me to shed a small light.  In my best summary (which will not do her justice), Ms. Summitt is the Tennessee Lady Vols basketball coach.  She's pretty much the rockin'-est coach in all of women's sports.  And because I was a collegiate athlete and all...heavy emphasis on "was", I have a true respect for what she's done over the course of her career.  When she was recently dx'd with early onset dementia, I cried with sadness for her.  Then I read her interview and straightened up right quick when I saw the following statement:

"There's not going to be any pity party and I'll make sure of that"

I felt as if Coach Summitt would somehow know I was teary eyed and thereby order me to run to the water tower and back.  :::shudder:::  I suppose the mindset of an athlete never fades.  Running.  Ugh:-)

Honestly, we've all got some things in common with Coach Summitt.  Here are some of her other statements:

  • "I feel better just knowing what I'm dealing with"
  • "And as far as I'm concerned, it's not going to keep me from living my life, not going to keep me from coaching."
  • "He (her doctor) was so positive (saying) 'You can work through this.'"

She also said, in a televised interview, that she will continue in her job "as long as the good Lord is willing".

Not as if Coach Summitt would ever come across this little blog post of mine, but I'd like to thank her for her comments.  I think many of us MSers have said the same things.  But if I may be so bold, Coach, I beg your permission to speak freely.

If you ever worry?  If you ever sit up too late at night, unable to sleep, wondering what will come (we call it the What If Game here on this blog)?  If you ever feel like you have to be strong for everyone else, but wonder who will be strong for you?  If those strong, uplifting words you put out there for everyone to hear and/or read feel like simple lip service, because a smidge of doubt lies behind them?  If you ever feel alone?  Know that I've done and been all of those things.  And from the comments I've gotten from other readers, I can tell you that many of us have.  But one thing we know, without a shadow of doubt, is that the good Lord you mentioned in your interview has you in His hands.  In worry, loneliness, and doubt...He is there.  Always there.  The battle is not yours, it belongs to the Lord.

Now go out there and grab some more championships.  Guess I'll get started on that run.  I'm going to have to make it a "walk" if that's okay;-) 

Tuesday, August 23, 2011

The "A" Word ('Autoimmune', sillies!)

I took my son to the ped today for his school physical.  As I've mentioned in previous posts, he has battled some significant health issues in his infancy and early childhood.  To sum it up, it was rough going.  Very rough going.  Very glad that's over with.

As he sat upon today's tissue paper covered, squeaky, vinyl table, I couldn't help but replay some of those moments in my mind.  I was enjoying the dialogue between him and the doctor, feeling more than blessed to have been brought through that fire of old, thankful for the charismatic little guy he's become.  A few of her inquiries struck me odd and I couldn't help but wonder where she was going with some of them, but hey, this is the 1st ped I've ever trusted.  I should know...I've been tossed out of 3 major practices prior to finding this amazing doctor;-)  She respects his history and treats him accordingly.  So when she ever-so-gently said, "I'd like to run his TSH", I finally understood, in that very instance, why she was asking those intriguing questions.  Ruling out hypothyroidism.  I was fine with that word.  And then she said, "often, when a child is gluten intolerant, or has celiac's, or, ya know, other autoimmune disease..."

Yep, she lost me when she said the "A" word.  Immediately, I felt the equivalent of a punch in the stomach.  See, I have an uncanny ability in times of high stakes discussions to make full eye contact with someone who's speaking to me, yet hear absolutely nothing they say.  I'm about 452 miles ahead of them in my mind.  So whatever she said after "autoimmune" wasn't properly digested.  Because what do we pray for daily on behalf of our kids, MS Moms?  All together now!    ...HEALTH!  Just health.  Please and thank you. 

Rather than allow myself to worry, I will continue to pray my simple prayer for my children.  I know that these kids are God's first, given to my husband and I as a special blessing.  This is all just precautionary on her part, because he can't digest gluten or dairy, and he's the smallest guy in his class, despite being one of the oldest, and there's a family history of autoimmune...hey!  That's pre-existing condition profiling!  Anyway.  No, I will not worry.

What I'll do instead is wake him first thing in the morning, when the lab opens, so we can get in there for this test.  But no, I will not worry...

Saturday, August 20, 2011

Saturday Morning Emo - As Written By My Dogs.

Daddy ties his workboots.  We smell the coffee that he's made for himself and Mommy.  She smells it, too...because she clomps and cracks her way down the stairs, smiling at him.  Oh, wait a second.  Put your biscuits away, guys.  He's meeting her at the bottom, which nullifies the 10:1 odds of her walking into something.  You'll have to place your bets tomorrow.  He gives her a hug and kisses her on top of her head.  She forces a smile and looks away from him.

She makes her way to the food room in search of a cookie.  Great.  She's too emo to lift a frying pan onto the stove and make herself a real breakfast.  She's already missing him and he hasn't left yet.  There's no sense in us setting up a begging perimeter and subsequently staring her down, because there will be no eggs.

He takes a moment to notice and says, "all you're having is a cookie?  Really?" to which she responds, in her 'talk show guest' fashion..."and?"

Silly Daddy, he never realizes that she misses him when he goes to work on the weekends.  Nor that we are left picking up the pieces until the little people wake up.  Something about them forces her to get over herself.  Why must you sleep late, little people?  Why???

He coasts down the road in his noisy truck.  Mommy once told us he doesn't have something called "mufflers".  Unless we can eat them, we really couldn't care less.  We just enjoy the ability to hear him prior to actually seeing him.

Mommy goes to the box of light and makes a face.  As a mechanism of support for her, we all attempt to make the same face.  Except for Fred, who sleeps.  Mommy asks us what's wrong and proceeds to answer for us.  Obviously, her question was rhetorical.  She informs us that we should not be sad, that Daddy will be home in about 9hrs and 20mins.  We wish we could make her understand that we have no concept of time.  Every minute is a full 24hrs to us.  See you tomorrow, Daddy...

She takes pictures of us in what she refers to as "our sadness".   

She says she tells herself that, "all of this is just for a season", and that she feels guilty for these moments of sadness.  We are confused.  She wipes her eyes and blows her nose...thankfully, in that order.  She says she knows what a blessing it is to have 1 job, much less several, and that she thanks God for His provisions and for Daddy's willingness.  Because someday, they'll get through 'this' and will have appreciated the journey.  Blessings in trials, or raindrops, whichever.  We remain confused, but are seriously trying to be supportive.  All we can focus on is the fact that she couldn't scramble a few eggs.  The eggs are in the cold box.  We saw them.  We aren't getting any younger, here.

One of us has to end this and start up the howling brigade.  Howling wakes the little people, little people make Mommy smile, and...hey wait a second...little people make Mommy get frying pans out!  What hath taken us so long to recall this essential detail???

Commence howling in 3...2...

Friday, August 19, 2011

Blessings Through Raindrops

My son must adhere to a gluten and dairy free diet.  His body doesn't break down casein, nor properly digest gluten.  Mind you, this diet has gained popularity over the years and foods of a more tasty variety have come on the market since he was younger, but plainly and simply?  It can be a real bummer at times.  There are no drive thru runs for fast food, no pizza nights, and heaven help him if he drops his pre-packed lunch at school...'cause he's got to locate his mother, who must then drive home to gather replacement food.  Thankfully, his mother is the most understanding, compassionate, approachable person I know.  (ahem...)  Okay, that's probably more descriptive of his grandmother.

A local specialty dessert shop recently started making GF cupcakes and my son has literally been counting down to WHEN he could PLEASE try a "fancy cupcake" like everyone else.  Today was that day.  And he loved it.  It was, by all intents and purposes, worth the wait and the 40+ minute, one-way drive.

After carefully savoring each bite of his cupcake, his face began to fall.  His understanding, compassionate, approachable mother (ahem...) asked, "hey bud?  What's up?"  That prompted the following discussion:

Son: "Will I always be like this?"
UCA Mom: "I dunno, it's like I've always said.  You could outgrow this whole thing, or maybe at least outgrow one part of it...or maybe not.  Nobody knows but God."
Son (with tears in eyes):  "People told me I'll never outgrow it.  That I'll always be like this."
UCA Mom: "Well I don't know who your 'people' are, but..."
Son (tears falling): "They've said it a lot."

Turns out that "people" and "they" is one kid who just likes to repeat himself, but it really is something how someone's words can hold us down.  Because my son's a walking testimony.

So my response was to remind him of everything he has come through and conquered, and how people will say what they want, no matter how stupid it is (c'mon, I had to make him smile:-)...but only God dictates our course.  I was sure he'd give me the generic, plastic mom smile.  But he didn't.  He actually recalled the times I came home from numerous neurologist appointments and trips to clinics and hospitals, ranting over what "people" said.  Here are a few of my favorites:

"If you don't get on a medicine, you will most likely not be walking by the time you're 10yrs into your disease."
"Your days of multitasking are over."
"You should probably quit working."
"You obviously have not come to grips with the fact that you have a lifelong, debilitating disease."

Here I am, 12 years later.  I wasn't able to take the medicine.  I wasn't able to find a profession that gave me one task at a time to complete, nor would I have wanted one.  I wasn't able to quit working.  And I wasn't able to spend a great deal of time crying over the fact that I have ms.  That would have interefered with what I AM able to do.  And that's being a loving wife (though I sometimes must remind myself), raising my kids, contributing to our finances, and serving others. 

Praise God for the fact that His still, small voice can be heard over everyone else's...when I'm listening for it;-)  And praise God that my kids can learn something of value from my life with ms.  Blessings really do come through raindrops.

Saturday, August 13, 2011

What I Did All Morning...

The answer to the question, "what did you do all morning?" is NOT:

  • laundering of clothes
  • mowing of lawn
  • washing of dishes

The answer IS:

  • drinking of coffee!
  • making of slideshow! 

This, after I was clearing pictures from my phone and, I certainly do have more than a few.  And wow, isn't God good?  So I said, "Self?  Let's put them to music and call it a slideshow!"  And myself said, "why yes!  Yes I shall!"  It's a beautiful reminder of just how blessed I am:-)

*Disclaimers (like those I've seen on other websites):  I don't own the song, but I did purchase it.  I don't own the clouds, the sun, the moon, the sky, or the water, but I do own the free phone that took the pictures.  I don't own the boats we rode in, but did rent them.  The kids who make intermittent cameo appearances?  Yeah, they belong to me:-)

Tuesday, August 9, 2011

When Naps Become Comas

My mother has often said that I was born with insomnia.

I did not sleep through the night.  I did not require a nap.  But don't take my word for it, I've actually found a piece of photographic evidence.

Exhibit A
 Here I am, relegated to my playpen with a box of toys to entertain myself with.  Not an ounce of tired in that face.  Mom was lucky if I allowed her to sleep more than 3 hrs in a night.  She needed to utilize creativity in order to maintain some level of sanity.  I think the purpose of the photo was to be able to later proclaim, "I survived her early childhood", sort of how folks purchase t-shirts after riding horrific roller coasters.  Between you and I, maybe if I didn't have that freaky monkey-with-cymbals toy, I would've had more restful sleep?  Just sayin'.  Also, the Curious George book was a nice touch.  What was I supposed to do, read it to myself?  Really?  (I'm so going to be in trouble when Mom sees this post...)

Light sleeper, never napped, mind racing at 200mph. 

Who remembers mandatory naptime in kindergarten?  I remember it well and NOT fondly, thank you.  My teacher happened to graduate hs with my mother, and I was well aware that she would have no qualms in picking up the phone to advise of any poor behavior on my part.  Whatever I got at school...would be twice as bad at home.  So I'd lay there, eyes open, staring in annoyance at the others who followed the rules.  Sheep.  I used to think to myself, "if we all refused...if we all got up and ran out to the playground at once...what could she really do?  She can't possibly catch all of us.  Some of us will make it.  I could make it."  Yes, those were the thoughts I had when I was 5.  Come on, no one was catching short, linebacker-esque me in those trak shoes...

Exhibit B

I'm still a light sleeper and my mind still races at 200mph, but I've traded naps in for grade I comas.  How can I be certain?  Well, I simply can't qualify laying down in my bed, pulling the sheets up to my chin, closing my eyes, and regaining consciousness 3-4hrs later as a nap.  The definition of "nap" is "a period of short, light sleep".  Coma = the "prolonged state of deep unconsciousness".  By definition, I nap overnight and slip into a coma come late afternoon. 

It appears as if I'll need to resume that daily 3pm coffee infusion.  Clearly, this is not something a Crisco box full of miscellaneous items will address.  And don't even get me started on that cymbal clashing monkey...


Sunday, August 7, 2011

MS Goes To Camp

My kids and I volunteered to serve at a Christian camp for children this past week.  My job title?  "Cook".  Ok, so I technically didn't cook much of anything, but boy did I ever cut a bunch of stuff up, carry it around, and serve it!

Aside from slightly misjudging the proximity of myself in space (resulting in knicking myself with a knife on 5 separate occasions), experiencing some left eye floaters and blurriness (resulting in awkward blinking), screaming legs and feet from the 16+hrs of standing (resulting in a Herman Munster gait) and tremors in my right hand (resulting in throwing a child's sausage on the floor instead of his tray, and I wish I were kidding), ms was fairly silent. 

Either that or I was too busy enjoying myself to pay it much mind... 

It's funny how, back when we were able to take family vacations, I used to feel as if laying on the beach for a week was the only proper method of escape from the working world...and the only way my kids could possibly consider their summer a success.  When that ability left the building, I threw an only child, internal tantrum and longed for what used to be.  Since I'm confessing tantrums for yesteryear, I'll share that I've spent more time than I'd like to admit longing for my pre-ms days.

Coincidence that the topic of our morning devotionals at camp included the following scripture?

Ecc 7:10,14
Do not say, “Why were the old days better than these?”
For it is not wise to ask such questions...
When times are good, be happy;
but when times are bad, consider this:
God has made the one as well as the other...

A great reminder to me that there's no use looking back and missing the old days, because there were as many challenges and stressors then as there are now, just in different flavors.  Each day really is a gift, and that doesn't change according to how I may be feeling, what I may be feeling...what I may not be feeling.   (Shout out to paraesthesia!  Woo!) 

It's funny.  I spent 7 days pushing myself beyond my physical limits, yet returned home feeling more uplifted and refreshed than I can ever recall after any previous vacation.  My kids can't stop talking about the new friends they made and all the fun they had in serving the campers.  With the exception of a few sodas and a $1 car magnet, we didn't spend a dime.  And there was no need to swing by the car wash to vacuum 20lbs of beach sand out of my car! 

Call me crazy, but I think the term "winning!" has just been redefined ;-)