Happy Birthday, Delsie

Pretty Girl. D-Dog. Toots. Tootie. Delsiemeister.

9 years ago this beautiful, black lab came into my life. And changed it. For the better. Forever. I wouldn't even be involved in this study if it weren't for her. She is my Christ with fur on.

Today is her 11th birthday.

Every night when she hops onto her toddler bed for the night, I sing to her. "You are My Sunshine". And she is. Happy Birthday, Delsie.

I love you further than to the moon and back.

My best friend, Tiffany, wrote this essay for a contest describing her excellence as a service dog. It honors Delsie so well and worth sharing:

Blue skies. It's what I think of when I see her face. I have this photo of her standing on the Santa Monica Pier looking out into the blue horizon (or at least looking at a seagull perched on a pole- what do I know?) Her black shiny fur glistening in the sun, her long pink tongue peeking through a strong set of white canine teeth. She is panting from the heat but is utterly content with her mom by her side. Her mom is holding onto the leather harness, that is strapped to her lean and muscular back, steadying herself for the picture. Funny. They are both smiling. Who says a dog can't smile? And who would have thought a dog, this dog, had the power to heal, to change a life? This life. Her life.
The day Delsie came into Holly's life she rolled back the dark clouds of Friedrich's Ataxia. Friedrich's Ataxia is a degenerative disease that disables fluidity of movement, balance and muscle control. The ability to walk becomes a major undertaking. Simple daily routines require effort beyond belief. But not beyond Delsie's belief nor beyond her scope of support.

Delsie is trained to provide support and balance for Holly. The excellence she displays in patience and loyalty alone surpasses anything a human could provide. She is trained in many daily life skills to help Holly face each day with courage and independence; opening and closing doors, pushing elevator buttons, retrieving household items like the phone, a dropped pen or cup, a book across the room and the list goes on. She even knows how to pull clothes out of the dryer and how to go stealth in restaurants and movie theaters (you should see the way people jump when she comes out from under a table or when she makes her way out of a theater isle!) She is trained to help Holly stand if she happens to fall. And one of her specialties is knowing how to lick away tears of frustration and sadness after bad days and long nights. For the last eight years Delsie has served faithfully with nothing but love and devotion. While all these things are amazing accomplishments for a canine partner, I have to confess, it's the deeper level of her support that blows me away.
We enter this life with hopes and dreams. When we are young the world and all it's glory is at our fingertips. We anxiously plunge toward independence never once imagining the very freedom we live and breath can be taken away in just a moment, a dark moment, in time. But it's amazing how in Holly's life what was taken has been handed back with the help of an amazing dog. This amazing dog. Delsie. The hope and independence, the courage and the comfort, the companionship and peace that comes from this four legged friend makes Holly's independent life beautifully possible.
Blue skies. That's what I think of... when I see her face.

committed.

The dreams are back. I'm on the real deal. I finally made it down to clinic for my December visit and it was well worth the wait. My sister, Lo, and her oldest son joined me this time. The jet that took us through Wings of Mercy was unbelievable.
I stood on my own again for over a minute and walked down the hallway. When I crossed over the finish line I asked for my time. "Holly, you walked and now you're concerned with how long it took you?!" Maintain perspective and dream big! Just gotta figure out the balance with the two.
We joined a few doctors on the elevator to the clinic. One of the doctors said, "you're back already?" It took me by surprise as I didn't recognize him. "Let me guess" I replied sheepishly, "you were in the hallway when I bawled?"
"We all did", he said.
And that is one of the many reasons I am so glad I am part of this study.
I'm not a number. I'm a person. Someone who has FA. Hoping to find a cure.
They are committed to me and a cure.
I am on Chantix now. For the next four months.

almost out of letters

Still planning. Flights postponed. Schedules rearranged. Again. I'm having an "I can't do this anymore" moment. Tears are flowing and my patience is running thin. I copied part of a devotional down the other day from James McDonald. When I read it, the words practically jumped off the page...

"God did not cause the horrible events in your life, but you need to embrace the fact that He allowed them. God could not make a world in which we are free and at the same time guarantee that everyone would choose Him. So the world is broken and bad things happen. But God promises that He will be with those who love Him. He will bring us through the fire, and we will come forth as gold."
Don't misunderstand me. Running into hiccups with flights down to Florida for this clinic would not be classified as horrible. I get that. Hopefully I can keep perspective. But, at times such as these, I feel like having FA is horrible. And I am sick of it. So weary.

I am purging today. My selfishness. It's selfish, I know. The "why me?!" moment. This, too, shall pass. I know that. Even if I have to hitch hike.

plan ?...

I think I am working with plan "L" now. Plan B was a week ago. But God is still working. Disappointments and all. I am suppose to be on my way to clinic. To begin the drug of Chantix. Instead, I am hunkering down in the blizzard of 2009. The pilot has kindly offered to fly me Sunday and as usual USF, was more than accommodating to see me Monday.
"I'm Leaving on a Jet Plane"...soon. Just not today.
It's a snow day.

falls.

I am not sure why I use to take photos after a fall. I have a lot of them. I fell quite a bit. There was a time that the staff at the ER knew me by name and loved it when Delsie would visit. There were a lot of ER visits. Staples, X-rays, broken bones, bruising...it comes with the territory. It accompanies the diagnosis of FA. I hate it. But at the same time, I marvel at the resilience of my body. I always seem to bounce back. My body does at least. Kind of. The progression of this disability has been so gradual. The subtle loss of things is tormenting.
I had forgotten what it feels like to feel stable. Stable enough to get out of bed without falling. The balance to transfer in the bathroom without crashing on the bathroom tile. The ability to not have to think about the placement of my feet or the formation of words are foreign to me. Life was exhausting. I felt like I would be a "shut-in" in my 30's.
How quickly we adapt to things. After I fell in the bathroom yesterday, I was acutely aware of how my body was improving, slowly yet gradual. The war wound from yesterdays fall was minimal. It won't be noticed by those who pass. But I cried. I always do after a fall. Except the wailing was different. Normally my screams are motivated by utter despair, anger and a feeling of hopelessness. Followed by a towel to wipe off the blood or ice pack to soothe the broken bones. The fall yesterday came with screams and plenty of tears. But this time, my crying was filled with hope. And the only desperation I felt was the urgency to get back on the drug. There is hope. I can feel it. Physically and emotionally.

never fails.

My sister is excellent at finding the deals when it comes to cheap flights. After receiving my email plea for help, she came to the rescue. As well as the flexibility of my other sister who is scheduled to join me this trip. And the support of my parents forking over their credit card for a "loan" for a commercial flight. It is obvious that God has opened to many doors for me to be involved in this study-I'm not quitting. So through the support of my family and friends ONCE AGAIN and a little more planning, plan B has formulated.
In the past I would have lost a little sleep over this- who am I kidding?- I normally would have been up all night but my fight to sleep was credited to Phoebe, my kitten and not the lack of transportation to clinic next week. Instead, I had a calmness about it and was confident God would provide.
And He did.
He always does.
Just like He did when my 5 year old niece started asking God that her Aunt Holly could walk again.
I sent my family an elated email after my third trip to the clinic in which I walked 50 feet and stood on my own for over a minute. I attempted to describe the feeling and was in awe of the miracle that took place. My sister read the email out loud as my niece listened.
Without hesitation my niece replied, "Our prayers work, mom."
They sure are.
They always do.
Even in plan "B".

gulp.

Yesterday was my first day to not take any pills. For two weeks. Until I return for clinic on the 10th of December. Until I received this email from Wings of Mercy today:

Dear Holly,

I may not be able to fill Dec or Jan. We had to suspend fuel reimbursement until the FAA gives us our ruling, which looks really good, in 60 or so days, but until then it’s a no for giving pilots that $ back.I wanted to give you a heads up in case you need to buy plane tickets. This time of year can be so costly.

Guess it's plan "B".
I just wish I knew what that was...

Memorizing Romans 15:13 this week- "May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit."

Go figure.