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.