until then...

Seriously, where does the time go? I have no legitimate reason for not posting. I would only be making excuses. But this week I have been challenged to take some intense inventory as I was scheduled to speak Wednesday for the youth group and then again this morning. Nothing like being held accountable for what I believe.
It is clear that I am a huge procrastinator or struggling with the winter blahs. Honestly, I think it's both. Procrastination and the blahs- not a good equation to offer teens hope in this crazy world. But I did it. I hope. No pun intended.
On Wednesday, the topic was belonging. Having this disability presents some challenges when I want to feel like I belong. I don't want my life to entail all things disabled. Yet I don't truly fit in an able world. A tricky fate, for sure. And one that I thought I would never be up against. The truth is that I am disabled. So this morning I focused on James 1:2- "consider it pure joy, my brothers, when you face trials of many kinds..."
FA is a trial while I navigate this life. I don't want it to define me, however. I long to count it joy. It may seem unrealistic when I hit my face AGAIN on a tile floor. At that moment, besides the urge to throw up from the concussion, I have a choice to figure out the joy in that situation. Faith not feelings. Faith not feelings. Faith not feelings...
The purple has faded and the bruising is gone.

The heart will always ache. Ache for a cure. Until then, I consider it pure joy to be surrounded by two amazing dogs, encouraging friends and an incredible family.
Until then...Delsie seems to be enjoying her retirement and Barkley feels as if he has always been a part of me.

2012, let's begin.

It's the first day of 2012. There is something about the new year that sounds enticing. The possibilities seem endless. Life appears approachable. I feel a little more courageous to face what is ahead. I welcome change instead of run from it. I long to be closer to the One who created me...it all equals HOPE.

...and then FA enters the picture. Shamefully, 2012 quickly loses its appeal. I am consumed by its uncertainty. Fear muffles any form of courage I muster and change means progression of this stupid disability. I shy away from Him. The One who is everything. The Alpha and Omega, the beginning and the end.

Last night I was surrounded by friends who allow me to be me and more importantly, love Him. So refreshing and so fulfilling. Without them knowing, they made FA smaller and helped me look to the new year with excitement.

FA is in my viewfinder but it's not the only subject in my snapshot of this life here on earth. 2012 is here and so is FA. But it's not forever.

"Do not despise these small beginnings, for the Lord rejoices to see the work begin"...Zechariah 4:10

2012, let's begin.

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...