I'm okay.

This past week I bumped into someone that I hadn't seen for over ten years. "HOLLY! Hi."
Uh oh- I had no idea who she was although she did look vaguely familiar. I have tried to handle these awkward situations with grace. I simply replied to her, "Help me remember our connection again?" She did and I remembered. I smiled and said, "Sure enough! How have you been?" At this moment her face dropped and she grabbed my arm, "Well, I am doing great but it doesn't look like you are doing too well."
Welcome to my life.

This morning, I had to say good-bye to Delsie. Our lives are going to be changed forever. And because of MY fear of separation, I have been struggling. I can't cry and talk and my dad has trouble hearing-not a good combination. He asked me if I wanted to say good bye to Delsie before I left for PA. Through my tears, I did it. My dad is oh so sweet for watching her for 3 weeks while I meet Barkley. Just like everyone who is encouraging me with hugs, prayers, notes, candy, texts and donations....it's so overwhelming. And so very humbling.

I wish I was quick enough to respond to my old acquaintance, "I am doing awesome. In fact, the best I've ever been." Instead, I left our conversation a bit stunned but believing in my heart without a shadow of a doubt that on the outside, I may not look okay but on the inside, my cup overflows.

2 Corinthians 4:16
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.

This time tomorrow, I'll be hugging Barkley good-night.

Yea, I'm okay.

I love and hate FA.

I love this photo about as much as I hate it. It makes me remember how hot it was this summer. I loved it. I hate that it's the past and as I pulled the hood up on my sweatshirt and turned on the heat this morning, I started thinking of the past. And then I saw this photo. I love it and hate it. I went camping this summer with my family and not just for a night- the whole entire week. 10 days. In a tent. In 90 degree weather. And Michigan humidity. With my entire family. My mom and dad. My 3 older sisters and their husbands. My 9 nephews and nieces. And Delsie. Delsie and me. I remember when I first returned as a team with D, I was determined to walk on this very beach with just her aiding me. And I did. That's my Delsie. Here I am, 10 years later making another memory with her. Maybe my last one camping with her. So I hate this photo, too. I can't rewind. FA has progressed. I can't walk. I am in a wheelchair. And now Delsie is retired. Oh, how love this photo. Oh, how I hate it.
11 more days until I meet Mr. Barkley for the very first time. It's surreal. I can't believe I am at this point. Not really knowing how to feel. One minute I am elated and so excited with the addition of Barkley. The next minute I am completely overwhelmed and totally uncertain with my decision to pursue a successor dog. This week a friend of mine told me it was probably similar to the time in her life when she was preparing for her second child. She went on to tell me the anticipation was much worse. How I hope she is right.

Then I snap out of the funk of regrets and look at photos like these of my nephews and nieces...and smile. We made a memory. Me and D. She gave me my life back that FA tried so desperately to take away from me. I won't have it. Delsie won't allow it. And now Barkley will join in the fight and tag team with us. Delsie is retired. My palms are sweating as I type those words. I can't look back. I need to look forward and trust that God has my back. Barkley is my successor dog. I have been so consumed with the preparation that in a bizarre way I forget I have FA. Seriously. That's weird, I know. But I have been carrying on as if my life is normal. And nothing about having FA is normal. I found that out Saturday morning as my forehead caught my fall on the bathroom tile. Shoot. I have FA. That's right. That's why I have been blessed with Delsie and soon, Barkley in my life. Every fall is humbling and a bit terrifying as I live this life on earth with FA. I don't pretend to get it. It hurts. A lot. Both physically and mentally.
But I crawl back in my wheelchair. Cry a bit. Shake it off. And know in spite of this love/hate relationship with FA and a goose egg on the forehead, I am not going to let it win.


Ready or not, here I come Barkley.

a letter from Delsie

My friend set this page up on facebook. I love her for loving me.
http://www.facebook.com/#!/pages/Hollys-Hope/163325103746738
T minus 36 days until I meet Barkley.
or if facebook is not your thing, here is the letter from Ddog:

Hey everyone!

This is Delsie. For the past month I've heard my mom, Holly, talk about retirement. Apparently, I no longer have to work. And rumor has it there's gonna be a new dog in town!

Along with the excitement I've seen her stress about the transition and cost involved getting Barkley, her new service dog. I'm turning 13 years old in December and looking forward to a life of luxury; ie., sleeping at home while Holly's at work, chomping on ice and soaking up the attention from you, all the while watching the new dog figure this gig out. However, the finances are the tough part. I teamed up with Holly's friend, Tiffany, and as my last heroic deed before retirement begins we need your help to raise funds for Barkley.

A service dog from Canine Partners For Life costs $24,000.00. Yes, folks, that's how much I'm worth. :) However, Holly only has to pay $2,500.00 for Barkley and the 3 weeks of training and costs associated with getting a new service dog will run about $5,000.00. You can check out the awesome organization I came from and where Barkley is at www.k94life.org.

You can be a part of this team effort to raise the needed funds to continue helping Holly fight the debilitating, life shortening and degenerative effects of Friedreich's Ataxia. Friedreichs is a neuro-muscular disorder. About 1 in 50,000.00 in the United States have FA. Most people diagnosed with FA require mobility aids such as walkers or wheelchairs or service dogs like me! Or BARKLEY!

Tiffany reassures me that my last 10 years of service has changed Holly's life, making it possible for her to live independently. As a service dog, I have kept her encouraged and motivated to do life as we fight this awful disease together. I am honored to pass the torch on to Barkley, Holly's new service dog, as I begin my retirement as her pet.

I would love to have you join me and Tiffany raise the money needed to make Holly and Barkley's partnership possible. Holly is the best mom ever! Even though I won't be able to physically help her any longer, I want to do my part. You can help!!

Here's how: Your donation can be tax deductible by writing a check to
Central Wesleyan Church by October 1, 2011
446 W. 40TH St.
Holland, MI 49423
Write "ATTENTION HOLLY LEBLANC" - make sure her name is not on the check (you can send an attachment or write it on the envelope)
*For a tax deductible receipt you must make sure the check is written out to Central Wesleyan Church*

Your support means so much to my mom. I love seeing her with her friends, like you. I can not wait to finally love on you and show my appreciation.

On behalf of her human and canine best friend, thanks for taking care of my mom.

licks-n-wags,
Delsie

any questions?

Email: tiffanymanderson@gmail.com

in just one year.

This time last year I was in the last minute preparations to attend the FARA energy ball in Tampa, FL. Just one year. A blink of an eye but what seems to be a life time ago. A weekend surrounded by people who are passionate about finding a cure for this disease. A diagnosis that causes people to wonder what is wrong with me. A disability that makes me feel alone; different. I fight against feeling pitied or patronized. 1 in 50,000 people have FA. And I am the 1.
The year brought several new lives, as my friends gave birth to healthy children. 4, to be exact. I've been to a couple of weddings and a handful of funerals. One of my friends moved to Arizona and visited after she settled in. I spoke at a Women's conference. My parents dog died. My oldest nephew got his license and drove over. I directed a play at a local high school. I bought a trike. I applied for a new service dog and have begun to retire Delsie. A good friend of mine received a new heart while another friend finds out if he is a candidate for an intestinal transplant. A year. And I have FA.
This time last year, I was on a high. I was euphoric. I believed there would be treatment or even a cure for FA in 2 years. One year passed and one more to go...life goes on.
I desire to be engulfed with this passion to find a cure. I need to be desperate. Sold out to the cause. And fight like crazy to live a full life on the hope that FA will be a thing of the past. For a year, 10 years, or for however long it takes.
Cheers to the 2011 FARA energy ball. Thank you to those who haven't lost the zeal. It is my hope that the wrath of Hurricane Irene doesn't touch you. But if it does, just as Delsie, my mom and I did when we got caught in the rain last year, may you still dance.
And while you dance, let's make it one step closer to a cure.
Next year, at this time, I can't wait to write three simple words: They found it.

bursting with 8 X 10 pride.

The first thing that goes through my mind when I think of Barkley as my service dog is, "I can't believe I am doing this." And yes, it seems lately that is how I begin my conversations with God. Seriously, I cant believe I am doing this again.
The pastor I was listening to this morning, started his sermon with Psalm 62:7-8. "My salvation and my honor depend on God; he is my mighty rock, my refuge, trust in him at all times, O people; pour out your hearts to him, for God is our refuge." The pastor went on to say this passage had nothing to do with his sermon, he just felt like he needed to share it. I am so thankful for this guys obedience because I needed to hear it.
Since the news of my match with Barkley and the confirmation of Delsie's retirement, I have been a bit nostalgic. Okay, a lot nostalgic. I know the dam of emotions is going to break any moment. This is affirmed by my friends text, phone calls and emails this week asking how I was doing.? I think I am doing okay. And this morning I was reminded that God is my refuge. I can pour out my heart to him- he gets it. Even when I don't.
I apologize if you have crossed my path this week as you quickly had to humor me with interest as I flipped through five 8 X 10 photos of Barkley I received. It is mortifying as I think back to the staff at Delsie's vet, the assistant of where I maintenance my wheelchair and the worker at the pet store- to name a few victims. "Delsie is retiring. Let me show you the photos of Barkley." Keep in mind, I hauled out five 8 X 10 photos. Seriously. Mortifying.
I find myself thinking through every situation in anticipation of Delsie's retirement and Barkley's arrival. It's overwhelming. It's a bit absurd and totally crazy.
But so is living with FA. It's a daily battle not to grow with discouragement and frustration. I force myself to choose the things I have gained through the diagnosis of FA and not the losses. Believe me, I don't always succeed with this- it can be overwhelming, a bit absurd and completely crazy. But scripture like Psalm 62:7-8 is there to get me back on track and reminds me to trust in him at all times...especially the times I can't believe I am doing this.
Ready or not, here I come, Barkley.
Did you know Delsie is retiring? Let me share some of the 8 X 10's I happen to have...

passing the torch...

I remember my sister seeing a guy in the airport using a service dog for balance and she saying to me, "Look, Howard, that might work for you too."
and boy, was she right.
Delsie helps me more than I could have ever imagined as I live with the effects of FA. Going out to train with Delsie was one of the hardest things I have ever done but the most rewarding. She has been my Christ with fur on for over 10 years. She has been so faithful and has worked so hard. Delsie is 12 1/2 and has been "telling" me in a few different ways over a few months that she would like to retire. Service dogs are expected to work 8-10 years. She has done her job. It's time for Delsie to retire.
Believe me when I tell you that this has not been an easy process. But it is all about her now. She has made it all about me for 10 years. She deserves to be pampered as a pet and hang up the harness.
And now we welcome a new member to our family. A 1 1/2 year old black lab named Barkley. Today I was informed by CPL that a match was made for me with a successor dog. In a home full of estrogen, we anticipate, a boy.
My mind is racing and my heart is overflowing with emotions. After months of the application process, I am once again fighting FA head on.
Me, Delsie and Barkley.
FA doesn't stand a chance.

Nelly, Debbie and Bertha.

This photo is random. No significance other than I love my Ddog. She makes me smile. And lately, she seems to be the only thing that makes me laugh. Delsie and Jimmy Fallon. Truth be known, I want to clone the guy. He is hilarious. But, alas, I digress.


It is pretty revealing that the first thing out of my mouth is Delsie and Jimmy Fallon. What is that verse? Matthew 15:18, "But the things that come out of the mouth come from the heart, and these make a man 'unclean.' This may be a bit of stretch but bear with me...


Lately, I have been Negative Nelly. Debbie Downer. Boring Bertha. If your name happens to be Nelly, Debbie or Bertha take no offense. I am the one who is adorning the adjective. Me, "Happy" Holly.


I tend to go through seasons. And although I LOVE -with a capital L. O. V. E.- this season in the weather, my attitude could use some adjustment. I fully acknowledge it but can't seem to snap out of this one. So, I ride the wave of discontent and hope it crashes into the shore soon.


Lately, I have had no motivation or passion. I feel as though I am just taking up space. I retreat in my home after work and go for walks with Delsie. The good thing is that my feet aren't freezing! I am not part of anything to find a cure for FA and it's killing me. Literally. It's not often that sentence can have double meaning.


This weekend I thought I would listen to what I tell my clients and force myself to do things. A hard place to be when you don't feel like it.


Friday I hung out with a good friend all day. Totally what the soul needed. As part of my many errands that day, I stopped to get Delsie weighed and nails trimmed at her vet. One of the staff members asked me if I was Holly. I am sure she was looking for Happy Holly. For a brief moment I thought about responding, "These days it's Nelly, Debbie or Bertha depending on my mood." Instead, I nodded and given my attitude, I didn't want to have a conversation. Before I knew it, the staffer went on to thank me for speaking at an event her daughter was a part of. I had no idea what she was referring to but as she went on she got all choked up and had a hard time talking. "My daughter will remember your story forever. When she told me about it, I could tell she'd been changed. And when she talked about Delsie, I knew it had to be you. Thank you for telling your story."


Wow. Negative Nelly can make a difference?


Saturday was another gorgeous, hot day. My sisters are camping at the beach all week. Although every ounce of me wanted to veg on my couch all day, I knew it would be best for Debbie Downer to be with the family. They love me for who I am, right? One of my sisters and I decided to lay out and read by the pier. So, with her weener dog, Libby, and my black lab, Delsie, in tow we made our way to the perfect spot. Walking on sand with FA is a little bit of a challenge. Because it was the beach and hot, Delsie didn't have the walking harness on. No sooner did my sister and I take a wobbly step, did a guy dressed in Sunday attire come. He gently offered assistance and ran off. Not a big deal to him but such a blessing to us. As we were leaving an older gentleman in a cherokee jeep was watching my efforts getting back to my wheelchair. After I plopped down and began moving, he yelled out the window to Debbie Downer, "Keep it up!" with his fist gesturing in the air.

Sunday, I met some friends for lunch at a restaurant not far from my house. I decided we would walk as temperatures like that are few and far between in Michigan. On my way home I caught a SUV out of the corner of my eye, pull in an empty parking lot next to my route. I confess I turned the volume on my ipod louder and stayed focused on the sidewalk ahead. "Please don't talk to me, please don't talk to me..." I caught a lady running after my chair with a Bible in hand. Uh oh. I stopped for fear of her passing out and took out my ear buds. Shamefully, I think I inhaled. "I can't remember your name but I read about you in the paper." Should I tell her it's Boring Bertha? "I'm Holly." By this time she was crying and must have been nervous as she was shaking. "I have to be obedient and tell you this. Some people may think you are handicapped but you are not." She squatted down to awkwardly find something to write on as she had a pen. The only thing she had was a napkin as she pulled it out, another one flew across the parking lot. Her hands were still shaking and she opened her Bible. She wrote on the crumpled napkin Psalm 84:11b.
The napkin is sitting on my table. And I have read that verse every day since I met Ann. When I opened up my Bible, that is the only verse highlighted on the page.
I long for my walk to be blameless and my adjective to be Happy again. Oh yea, and a clone to Jimmy Fallon knocking on my door, would be great.

the ying and yang of life.

I always find it a bit ironic when I read a previous post en light of a recent event. And this is no exception. "Time heals all wounds"...it's been just short of 3 weeks that we had to say good-bye to my parents dog, Jasper. The wound is still there and time keeps passing. I am sure my wound is not as deep as my parents. None the less, Jasper is gone. And it hurts. Like crazy.
This photo was taken just an hour before she died. Jasper had quickly developed a tumor in her stomach. In a week time span she went from a "frisky" 12 year old to acting like a sick 84 year old. She was miserable. Couldn't eat and rapidly declined. It was time to say good-bye.
I am not sure why but I have a much easier time knowing a humans dies than a dog. It's weird, I know. But so very true.
Delsie and Jasper are the same age. So every step Delsie makes, I am thankful. I usually plug Delsie's ears when I say this but Jasper may have been smarter than Ddog. She would have made a phenomenal service dog. My parents spoiled her rotten. She was a high maintenance dog. And beautiful.
It's now time for me to end this post. I feel an ugly cry coming on and it won't be pretty. I can't talk about Jas to long without losing it.
Time. It's a strange thing. Hated and loved the same.
Just like FA.
You were loved, Jasper. Heaven has a good one.

anesthesia and cliches.

Time heals all wounds. I never say this cliche. It's a lie. One of those statements that place an unnecessary amount of pressure on someone who is grieving.
And in grieving I mean, a broken heart, a gut-wrenching pain that you can't explain. A hard core kick in the stomach that leaves you speechless but an ability to cry at the drop of a hat. And yes, I am talking out of my experiences.
A friend who died of a brain tumor; another one lost a brother to cancer; a classmate who was involved in a freak accident and as a result is now unable to walk as over 90% of his body suffered third degree burns; a boyfriend that was suppose to be forever, ended the relationship; a mom diagnosed with breast cancer; a couple loses their 2nd child because she fell 2 weeks before her due date; and just yesterday, I attended a memorial service for a friend that I knew since 7th grade. He committed suicide. He was only 38.
FA? Really?
So, yea, I don't say time heal all wounds. Because when you're the one doing the grieving, time feels like your enemy. I would love to "pause" the happy times and simply press "fast forward" during the times that hurt like crazy.

Time does help move you toward a new normal, though. This is the case with my snoz. Time did foster the healing. I am on the other side of the surgery. Yep, I was right, the crack I heard required surgery. And today, I was able to sneeze and not feel like I would pass out from the pain.
I am able to laugh as I go through the photos and even take pride in one of my mantras-this, too, shall pass- and it did.

I was a little baffled when this photo, along with MANY others, showed up on my camera. "Mom, why did you take all these? I look ridiculous!" My sweet mom replied, "You kept asking me to take photos." I have absolutely no memory of this. It's a good thing that I have proof that I did get dressed before I left the hospital. Some of the photos show me that one of my sisters stopped in. And that night my other sister and her family brought over Chinese to celebrate my dads 72nd birthday. Otherwise, I would not have believed it. Those were some good drugs.


It's true, my nose healed but the urgency to find a cure for Freidriech's Ataxia remains. There are times that I do so desperately wish I could press the fast forward button and skip the pain this disability brings but then I would miss the times I want to press pause to inhale the joy...just like the anesthesia.

He chose me.

First things first. I'm still here. And I still have Friedreich's Ataxia. FA took the back burner these past few months- and I LOVED every minute of it. This past weekend, it got sick of being ignored and made its presence known. FA is still here. And still very much despised.

I had the honor of directing a play for a local high school. Another thing to scratch off my bucket list. Believe me, I was in over my head from the moment I agreed to the job but as with absolutely everything in my life, God provided over and over. I wish I had the time during the grueling time up to the production, to brag on Him for His faithfulness. He was there. Big time. And it was a blast to be a part of it. I still can't believe He chose me. The students certainly made me proud, I hope I made Him proud.

And yes, whether I like it or not, He chose me for this dumb disability. After a couple of weeks of trying to recover from my obsession with this show, I fell. Hard. In my bathroom. And broke my nose. I think. I heard it crack.

My friend who was waiting for me didn't realize she was waiting to accompany me to the ER that evening. Three hours later and four stitches on the snoz, I was sent home to wait for 5-7 days for the ENT to determine surgery. I think the surgery part is inevitable. Did I mention that I heard it crack?

So instead of my new favorite appetizer plate at New Holland Brewery, we settled for Chinese take out on the way home while picking up my prescriptions and the movie, 127 hours. Which help put my pain in perspective, I might add.

As my friend helped me back in my chair and wiped the blood she said, "I don't know how you do this, Holly."

He chose me. I have to remind myself. That doesn't mean I like it. Or even understand it. I hate it and don't get it. But thankfully what I do love and overwhelmingly comprehend is that He chose me and therefore provides friends who pick me back up and wipe up the blood.

Earlier that day, Mary Jo and I spontaneously found "Terratrikes" in Kentwood that I have been researching and dreaming about when I think about riding a trike. It was a riot. And a complete success of a trip. I found the trike I want. With the smell of Spring in the air, I amready to build my leg muscles. And I can even do that with a broken snoz.

FA is relentless. I found out Saturday night when I slipped and cracked my forehead open. With a broken nose. Seriously?! Thanks to my sister who came over and cleaned the "crime scene" and victim up and spent the night, FA is finding its place again. On the back burner. This chic says, bring it on. I ain't going down with out a fight.

But at least wait until my nose is healed and the lightening bolt on my forehead closes up...

In the meantime, I wait. I wait for a cure for FA.

The swelling to go down.

The black and blue bruising to begin.

And I won't give up.

"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up" Galatians 6:9

not long now...

I think we made it. The worst part of winter hopefully is over. My friends facebook status' are filled with comments about the snow melting and photos of the sun that was missing the past couple of months. The last few days I ventured out without a coat and just the six layers of clothing. I have even gone without my gloves and my hands did not suffer from hypothermia. I can not wait for the sound of the birds chirping outside my bedroom window. Soon, this dreadful winter will be a thing of the past.
And someday that will be said of this dreaded disease. FA will be a thing of the past. I have to believe it. I can feel it in my bones. Just like the promises of Spring.
Winter is hard. A challenge for the able-body. But for someone like me with FA, it's next to impossible. Parking in snow covered parking lots are a nightmare if you depend on that open space to lower a ramp for a wheelchair. If parking is possible the prayer is that the sidewalk to the door is shoveled. Once you enter the destination, the fear of the door to the van doesn't freeze shut while you're inside. If all of this is accomplished, it is guaranteed that your limbs have froze due to the lack of circulation in a wheelchair. The joys of winter.
I looked forward to a new wheelchair. Once again, winter has won that battle. After getting stuck twice in my new duds, I gave up and plopped in my old chair... until the birds begin to sing.
So, I will wait. Again. Always. I will wait...
This photo was shot before the major snow fell. Me and my chair. And a co-worker attempting to be funny. And Delsie? Just waiting patiently, as always.
I should take lessons from her on waiting. You think I would have this whole waiting thing down pat. I don't. I'm not very good at it.
These long winter months are proof of that...not long now...
Spring and a cure- how cool would that be?!

the new.

Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!

2 Corinthians 5:17

Happy New Year. A fresh start. A different beginning. A hopeful perspective. A clean slate. Promises made. Goals set. Looking ahead. A new year.

I have never been one for resolutions. I honestly can not think of one resolution I made for my life. Don't misunderstand me, I am a HUGE proponent of striving for accomplishments. I love when I discover change in my life that only injects a healthy dose of reality. I like new. In fact, I welcome it.

A new coat of paint. A new candle scent. A new book. A new layer of snow. (did I just say that?) A new hair style. A new puppy. A new coat. A new address. A new dollar bill .

A new wheelchair.

Yup, it has been five years. And my insurance affords me the opportunity for a new wheelchair.

Let's be honest. I have mixed emotions.

It will be "fun" to sport the new wheels. I will enjoy the better shock system. The blue color will provide a sense of freshness. I look forward to a "clean" chair. The horn will hopefully be a bit more intimidating than this poor excuse of a sound. I am confident that this change will prompt less visits to Harry, my wheelchair mechanic. And I welcome the change.

A new wheelchair. That means it has been five years.

That's the part that is painful. I have been in a wheelchair for five years. I have lived with FA for over fifteen years. It's ever changing. Both physically and emotionally. And they have been dramatic changes. Physically and emotionally.

It is easy for all the "fun" of the new wheels to be tainted by the irritation of doing life in a wheelchair. Of living with FA.

And this defeats the happiness of the new year. So instead I will focus on the possibilities that this new year brings. I gaze upon this photo that my friend Becky took shortly after the clinical study with Chantix and I smile.

It reminds me that there will be a cure soon. It is a photo that shows me that soon, that wheelchair will be left in the dust, for good.

...the old has gone, the new has come.

Until then, look out for my sporty new chair. It just may come with a fog horn.