hope with ataxia

that's where I am living these days...

www.hopewithataxia.blogspot.com

back in the saddle again.

Even as I post this photo I am laughing. I guess it's better than crying. I haven't been on a bike for over 15 years. And the saying isn't true...my body has absolutely no recollection of how I should ride a bike. I was a bit over zealous the first ride and it took about 2 hours to go 10 blocks. I have the bruises to prove it and if I could walk, I'd be bull-legged.
Sting ray handle bars and a tricycle...interesting combination.

a bit backwards...

I started a writing group this summer and now I freaked myself out to write on this blog.
Not sure that's how I thought it would work.

I also started another blog.
Not sure that's how it's suppose to work.

I am still alive and kickin'.

www.hopewithataxia.blogspot.com

Barely.

an onion?

I use to be one of her favorites. It saddens me to speak of it in the past. She use to walk to me with arms extended and be perfectly content to sit on my lap and go for a ride. I use to be able to calm her when nothing else seemed to work. Now she screams hysterically and flares her body if even the slightest move is made in my direction. My phone use to ring which ended in voice mails of her sweet innocent voice whispering, "I love you, Holly" and her mom adding that she had been talking about me all morning. Now when her mom asks if she wants to talk to me she replies "No!"
I use to be one of her favorites. When she sneezed her mom would say, "God bless you, Lauren!" and she would respond, "No momma, bless Holly!"
Her parents tell me not to take personally. They call it a phase.
I call it heartbreaking.

She did ask about me at the Farmer's Market this past Saturday. And before I hung up the phone with them, I was on my way to meet them. My secret longing was that the phase was over. However Lauren was much more into this red onion than me.
Yes, an onion.

friends and firepits

The other night I was in a "funk". I call it a funk-a-runk. These times are not fun. I don't like being me when I travel through these.
I know by now it will pass. I just need to make wise choices when I allow my feelings to control me.
So, after a day of losing the power and going down the slippery slope, I took D dog for a long walk.

It's so fun knowing God has my back when a funk-a-runk night turns into an evening among friends and fire pits. True healing.

And even more joy when I noticed Anika peaking over our heads in the photo. Hilarious.

how not to parent

We've all heard the saying or even said it ourselves..."if you can't say anything nice, than don't say anything at all."...
Not sure the mom I overheard yesterday in the hallmark shop as I was picking out a 80th birthday card was brought up with the same conviction. This is the following conversation I heard over the card display between a mom and a 4 year old son:

"Mommy, I'm hungry."

"Aaagggghh, Tommy, you are not hungry. Look at your stomach. See how fat you are?! You are NOT hungry."

I should have slipped the boy my business card. And we wonder why kids have low self-esteem.

Speaking of self-esteem, mine certainly was under attack yesterday as I trucked on down for an iced coffee after the card shopping. The following conversations happened within seconds of each other:

A boy probably 4 or 5 was walking ahead of me with his mom when he caught Delsie out of the corner of his eye. From that point on he would turn his head around attempting to maintain his walk forward. At any moment I thought the kid was going to stumble on the concrete sidewalk. The mom was oblivious to the whole thing until they reached their parked car.

"Come on, bud."

He now completely stopped and is staring at me.

"Buddy, come on!"

The mom notices he is staring at me and is obviously embarrassed.
The boy still staring and not budging, points at me with an extended arm and says loudly, "Is her legs broken?!"

Curious as to how this inattentive mom going to respond, I smile while staring back. She scoops the boy up and stuffs him in the car and quickly shuts the door while answering, "yup."

In my meek opininion, she missed two teachable moments with her son.

It's not IS her legs broken, it's ARE. Legs are plural.

hair today...and tomorrow

Seriously. My dog should be bald with the amount of hair she sheds.

And if she could talk she would tell you the same thing about me.

We are quite a team.

I snapped this photos out of disbelief of her bed the morning after I brushed her for an hour with the furminator. Yes, the furminator. One hour.

the Office: in real life.

And this is why I love J. One of the many reasons.
The following is a text he sent me on Friday:

"We have an intern who I had in his 2nd week photocopy an 800 page file. This morning, I show up and my stapler was in a jello mold."

They better hire that intern, that's all I'm sayin'.

from the mouth of a 36 yr old

Most blogs (including mine) entail quotes/conversations that are funny involving children.

My phone call with Jeremy yesterday involved such a quote worthy of blogging as well. And he is 36 years old.

Our discussion entailed his co-workers and their choices, or lack thereof, in their wardrobe. Granted, J is a metro sexual and will admit it. None the less, he knows fashion.

He was telling me he has finally developed a trusting relationship with a another guy whom he works with. Because of this, he was relieved to say the following:

"Dude, it is time for you to get shoes that you tie in the morning. Seriously."

I think I wet my pants when he told me this. And even as I write about it, I am laughing again.

I guess adults say the darnedest things too- at least J does.

this too, shall pass

"I wondered when this was going to happen. I use to drive a tiny car."
This was what the driver said to me as she seriously needed a step ladder to get out of the HUGE cab truck that innocently plowed into my mini-van. I was in a parking lot getting ready to watch Kennedy graduate from 5th grade.
No harm done. No one was hurt. Her truck showed no signs.
Here's the catch. (Which their always seems to be a "catch" in my life.)
The damage has been done to the door with the ramp. The door and ramp that gives me freedom in my life. It doesn't work. The last couple of days I made arrangements with a co-worker, neighbor, friends and even calling people in the businesses I need to visit. Like yesterday when I had to make a half hour trip that turned into a 3 hour tour (time for a GPS) for a 15 minute estimate for my insurance company.
"Can someone come out to open my door so I can get out of my van?"
I never thought those words would come out of my mouth. On multiple levels.
I am sure other words are going to seep out when this is all done.
Some days I just want a "do-over".

rings and characteristics

I don't know my life without the Hofland family and for that, I am so grateful. I wouldn't want a life without them, all of them. Including their mom and dad.

The other day, Delsie and I walked over to their house for my Hofland fix. As usual, they hopped on and we went for a "ride". Grant was sitting on my lap on this particular adventure. He noticed my hand that adorn a couple of sterling silver rings and the following conversation occurred:

Grant: Did a boy give you those rings?

Me: No. I bought them for me.

Grant: Well, I like them. They're cool.

Me: Thanks.

At this point I allowed for silence as I could feel his wheels spinning.

Grant: Will you ever get married?

Me: I'm not sure. Do you think I will?

Grant: Yea. But if you do, he better have your characteristics.

Me: What would those be?

And with that, the conversation ended. Grant was more interested in a soccer ball.

Some time later we were talking about something else that made me laugh. Without missing a beat Grant looked over at me and said, "Now THAT would be a characteristic."

And who said kids aren't wise?

You're right Grant, He better make me laugh.

choices

Our lives are full of choices. The decisions I make can effect not only me but those around me. I am keenly aware of these choices as I am reading a book by James McDonald. It has been life changing for me. As I work through discovering who I REALLY am in Christ, I say audio ably "I am choosing to believe that you love me today, God." I don't always feel Him or even trust every moment with Him. As I work through this, a friend commented that he was confident that God would show up in my obedience. Even when it hurts.


The other day I woke up with a dull ache. I was sad and couldn't even explain it. The sun was shining, my bones were thawing out from the nasty winter, trees were budding their leaves, birds were chirping, a roof over my head, food in my belly, a job to pay the bills...but the "ache" was there. "I am choosing to believe that you love me today, God."

and just like my friend said, He showed up.

This was how I found my Orchid after facilities cleaned my office early Wednesday morning:
Thanks, Celia, for allowing God to use you. And I'm not talking about vacuuming.

a moment in time.

Delsie dug a hole to China underneath my sisters tree (sorry, guys) as the rest of the family gathered around their pool. Some of my nephews and nieces braved the frigid temperature despite the difficulty in breathing after they dove in.

Oh, to be young again.

And I have a feeling Alex and Delsie agree with those sentiments as I looked over only to find the two "bonding".

A sweet memory to the end of a beautiful Memorial Day.

S-U-C-C-E-S-S!

Fun at a playground. Scootering around the block. Four square on the neighbors driveway. Drawing with chalk on the sidewalk. Talent Show. Watch a movie, "Hotel For Dogs", Lights out at 11:15 PM.
Awake at 7:30AM. Four square again. Walk to Donutville for a donut and chocolate milk. Fun at the playground. Again. Watch a movie. Again.
Ended with Mata's chocolate chip pancakes for lunch.
Another cousin night.
Another success.

anticipation...

Friday night.
It's cousin night.
Aunt Holly can't wait.
My nephews and nieces are a riot.
They are excited to hang with each other.
And I'm thrilled to hang with them.
Friday night.
It's cousin night.

Typically, the sleep over isn't a success without a talent show.
I am positive Danika's song is translated, "Aunt Holly is my favorite aunt!"

a "lifer".

It has been said that friends come and go. I can not remember when Jayne came into my life. Maybe over 15 years ago? But she almost "left" a few months ago. As in left this earth-almost died.
I still am processing this whole thing. Not nearly as much as she is, but none the less...working through the fact that Jayne had a brain bleed on January 31 and spent the entire month of February in the Neuro-Intensive Care Unit in Colorado.
She is the first to admit that she is a miracle. Doctors scratch and shake their heads, "you're an usual case." And we are calling this mystery, God's work.
So when Jeff and Jayne met me at JP's when they were in town for the sons graduation from college the beginning of the month, I wept when we hugged.
My friend has come and gone as she has moved to a different state. But I am so glad she didn't die.
I have a feeling that I am going to be processing this for awhile...but tonight I am going to focus on the fact that she is here. Jayne came in my life and made a huge place in my heart and I am never going to let her go. She's a friend for life.
I love you, Propane.

the 411.

Every month for the last 2 years my friends have gifted me with a therapeutic massage. This has been a HUGE help for me. I carry my stress in my neck and when I fall, that is the area of my body that suffers the most. I am so grateful for this gift...I will never be able to repay my friends who allow me to do this.
Because of the longevity of going to the same masseuse for the past two years, we have developed an awesome friendship. An added bonus. This past Friday I had an appointment- the timing was impeccable as I had fallen in the beginning of the week and as a result could barely move my neck. As she was working on my body and we were talking, she asked me where I hurt. I tried to pawn it off by grumbling and pointing to my neck. "Holly, does it hurt in your stomach or your heart or your throat...where does it hurt?" It was at that point that I realized we were doing a lot more than working the kinks out in my neck. I had to think about where I hurt and then gestured to the area of my heart as the tears began to flow. "Ah, it's your heart that hurts."
It was at that point that God used her in my life to encourage me and help me to work out the kinks not only in my neck, but the knots in my heart. And boy, are they there...
...kind of like this cop that parks in a parking lot near my house to "catch" the person who's not abiding by the speed limit.
My view of God is like this, I am ashamed to admit. He is "looming" at a distance. And I have been "caught". Now I have a choice to welcome the alert or get mad at His authority in my life. Thus, the tears. It's humbling. It's lonely. It's overwhelming. It's downright scary and painfully slow.
But God is gracious. That is what I am choosing to believe today.
And hopefully that driver that got pulled over believes, too.

life with my dog

Delsie sleeps in a toddler bed next to me. For whatever reason, I have been going through a phase of relishing who she has become in my life. This plays out with the number of photos I take of her (I have been called "mom-arrozi") or laugh hysterically when she does something funny or even shed tears when I reflect on the support she gives me in life. Last night was no exception as I tucked her in bed and said our prayers. These can be heard as something like this, "I love you, Delsiemeister. I am so glad you are in my life. (massaging her) Give mommy some lovin'. (she rolls her eyes and licks my face) Aw, thank you tootie. You love your mommy? (no response) Cuz your mommy loves you." At this point she has checked out and I plug in my chair and climb into bed. It's a ritual. And I am sure about now you are reading in disbelief and maybe chuckling while shaking your head. I am okay with that because there are things that happen in my life that cause me to react this way as well...
like the other night...
now that the weather has been nicer, Delsie and I go for a lot of walks. On this particular walk, I heard the engine of a diesel truck over my blaring iPod parked on the opposite side of the road. When Delsie and I were parallel to the truck, a slender gentleman in running shorts and a sweaty t-shirt opened the car door. He was walking towards us and because of Jack Johnson bellowing in my ears, I couldn't make out what he was saying. I stopped and removed my earphones from my ears.
"I'm sorry. I didn't hear you."
He handed me a business card that had a name (apparently his) , address, phone number-cell and home, email and fax number.
"I am not selling anything. I saw you last year and just wanted you to know you're an inspiration."
Even now, as I re-live this encounter, I am shaking my head and chuckling.

He likes to email people so I would be happy to pass on your email address to him if he should stop me again.

...you can stop chuckling now...

let summer begin

work day is not official until Dickie adorns his "onsie".

Sometimes in life I need to take a breath and inhale deeply, taking it all in. And today was one of those days even though I had to set my alarm for 6:15 AM. It was worth lack of sleep and getting dressed in the dark, as once again, my parents small group invested in the community wide "Plunge" at my house for four hours. From painting walls, doors;cleaning windows; hauling out my deck furniture; trimming bushes; placing my flower box and cleaning my garage...my cup overflows.

he's some dad...

We are all someones child. Facts like this one are simple yet universal. We all come from a mom and a dad. Stop and think about it. It's rather bizarre. And this "simple" fact makes us all quite complicated, suffice it to say, a bit messed up. No one is spared from this. It's true. All of us have a dad.

And my dad turned 70 yesterday. 7-0. Typing those numbers made me shudder a bit. 70 is old. But my dad isn't. He never will be.

Today we had a surprise party for him with our family at McDonalds playland. You would have thought he entered the gates of heaven when he opened the door to find us all adorned with party hats and blowers. I, personally, would describe this with another word that starts with "H" but it warmed this southern mans heart.

As I think on my circle of friends, I know part of their story includes their dad. Some died way too soon, some are making poor choices, some are rejecting them, some are loving them, some are just angry, some are fighting cancer, some are working a lot, some are married over and over, some are not even known and some just turned 70.

Happy Birthday, Dad.

You are loved.

"I'll get you my pretty!"

I pride myself on having a brain. I love to be challenged in my thinking. I am one of those weird people who enjoyed school. Not the demands and pressures of studying for tests but the way it made me process. It made my brain work. My friend Jeremy has decided to go back to school and I often feel jealous that he is writing a paper or even studying. He has a goal. He is challenged. He is hopeful for a good grade. He is in company with scholars. I just listen and recognize my brain is turning to mush. It’s much simpler to turn the power button on the remote control for the TV or stuff my ears with my iPod earphones while relating to the scarecrow from The Wizard of Oz, “If I Only Had a Brain”.

We often hear the expression, “three times and you’re out!”I have had my fair share of attempts at a good swing these past few days and my plastic bat is not even hitting the wiffle ball.

Yesterday in church I was catching up with a friend. I was asking how his wife is feeling as he told me she is hopeful to give birth the second week of May.

“Oh, that’s so exciting!”

“Yea, but we’re thinking she is going to go early.”

“Really?”

“Yea, we’re shootin’ for a Cinco De Mayo baby.”

“Oh yea, when’s that?” said with a straight face, mind you.

Strike One!

My friend Jo and I were riding in an elevator. This is a necessity at times when you're wheelchair bound. After the doors closed shut, we were both staring at the buttons trying to figure out what floor we were on and which one we had to move to.

Jo asked, “What does the star mean that is by this number?”

I replied (again, with a straight face), “It tells us what floor you’re on.”

Strike Two!

This morning as I was getting ready for work, I almost finished my morning ritual. A couple of squirts of my favorite perfume that a friend gave me, completes my routine. I typically head out to the kitchen to let Delsie outside. That is, if I am pointing the nozzle of the perfume to squirt on my neck and not directly in my left eye!

Strike Three!

So, the scarecrow and I have more in common than just difficulty in walking. Not a whole lot going on in that “noggin’” of mine these days. Maybe I should attempt to study for a PhD…”If I Only Had a Brain.”

ants in my pants.

The sun is deceiving today. It produced this anxiousness in me to get outside with a longing for the warmth of the sun to penetrate in my stiff, cold bones. It didn't happen. I jumped the gun.

Kind of like the time in LA when visiting my friend, Tiffany. We were excited to visit her favorite coffee shop one day. In LA, locations are never a hop-skip-and a jump away and this cute hangout was no exception.

Our anxiousness was a detour ant as we realized once we found a parking spot across the street and unloaded the scooter(a pleasant gift trying to park in California) that we had forgotten the key to get the scooter to move.

Poor Tiff made the commute back home in LA traffic to pick up the key we left behind on the kitchen counter.

In hopes of reminding myself of the warmth of the California sun after returning from a brisk walk in Michigan this afternoon, I scrolled through my photos of LA.

I laughed at this memory but acknowledged my tendency to jump the gun in my life when things don't seem to be happening the way I want them too. It is obvious that I am anxious waiting for His plan to be revealed in my life- not my plan.

Psalm 25:3 "No one whose hope is in you will ever be put to shame, but they will be put to shame who are treacherous without excuse."

There is no excuse when I "jump the gun."

Ready. Set. WAIT.

strangers.

We were complete strangers. That is, until this weird, invasive and all encompassing thing called Ataxia entered our lives. (Which, by the way, was not invited.) We all wanted this "guest" to know that although it had invaded our lives, it was not going to control us. It is strange how something so awful, so obtrusive can be the very thing that "ties the bind". (I seriously have no idea what that expression means but it sounds right) Ataxia is a common thread in our lives but it is not who we are. Ironically, without the diagnosis, I would never have loved Becky and Deb like I do now. We wouldn't talk for hours over decaf coffee or order KFC and eat at the beach, laugh at our failed attempts at love or cry together knowing this intruder of Ataxia robbed the life of someone we loved.

All of us were strangers.

Or what about the stranger who saw me stuck in my driveway during one of the many blizzards this winter when I attempted to roll my trash can out to the curb? He must have spotted me and turned his truck around, only to push my 300 lb. wheelchair in the garage. I hardly uttered the words "thank-you" when he hopped back in the cab of his truck and drove off.

He was a stranger to me.

Last month I attended a funeral of an older man, Fred, who died of cancer. Fred touched my life. He loved Jesus and everyone who knew him, knew that. We shared many conversations on the phone, some that lasted more than an hour, before he died. I grew from Fred's wisdom and admired his faith. I miss our talks. I sat in the back pew in the chapel for his funeral. I sat next to a lady I had never met before. Fred's songs he chose to be sung at his funeral hit me hard. I wept. I couldn't control it. The lady next to me gently placed her hand on top of mine and squeezed some love into me, reminding me it was going to be okay.

She was a stranger.

I flew out to California last month. And my flight out there was delayed. This made my layover in the Minnesota airport a total of 5 minutes. No small feat for a girl on a scooter that has speed of a tortoise, with a service dog that poops in the carpeted terminal and has to go the distance from gate A to gate Z. Fortunately, the plane waited for us. The ENTIRE 757. I discovered that my seat was GA- the middle of the aircraft. It was at that point when a man seated in the aisle seat of first class tapped me on the shoulder and said, "have my seat, I'll take yours." He wouldn't take no for an answer and proceeded down the airplane. Miles down to seat GA. So there I sat in first class and treated like a queen.

A gift from a stranger.

So maybe my life is filled with unique situations but I am not convinced, as I once was, that we are surrounded by strangers. These people tell me otherwise, in those divine moments, they became my friends.

...because.

I have neglected my blog for an entire month. There is no excuse or nothing that has occupied my time as a distraction to not journal during February. I am sure, like the rest of you who live in the North, I could spend ample time complaining about the winter and how the cold and grey lent itself to my lack of motivation, but I will refrain. We all know how awful it was without me dwelling on the negative. So, I will press on.
Just like this note that was included with this flower on my front step...it's a reminder of the "because" in my life. We all have them. Because I am single, I can sleep in whenever I want. (then why was I up at 6:48 AM?!) Because, I love hard, I hurt hard. Because I love to laugh, I choose to hang out with funny people. Because where I live has no sun, I tan in a machine. Because I have a disability, I have a service dog. Because I have nine nieces and nephews, I am an aunt. Because I love Jesus, I belong.

This gift this winter was my "because". I'll keep going. Because of the "be causes". They may not make sense, some feel good, some hurt...a lot. But I'll keep going...just because.

from the inside.

So, it's not all ugly. This winter stuff. I am sure my friend in LA doesn't have icicles like these hanging from her house. Okay, either do my friends here because they probably have insulation.

Attempting to focus on the beauty...I am sure it's in LA, too. And their toes aren't frozen.