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.