#2's and wrappers

We were well into the leg of our journey on our trip home from Florida last week when my friend began pointing at my neck. "You have something in your hair, Holly." Immediately I regressed back to my high school days and remembered the times that my "so called" friends would sit behind me in class and see how many #2 pencils they could hide in my afro. It wouldn't be until I laid my head on my pillow for the night did I discover them. I would laugh and shake my head, knowing this game was providing entertainment for a rather boring Civic class. Quite frankly, I was happy to be of service. This kit kat wrapper had wedged itself into a lock of curl on my head and as I attempted to dislodge it from the bomb of frizz (no small task, especially with FA!) I thought back to when I ate the candy bar 3 hours earlier! It was there that long.
Yesterday was my last day to stop the drug Chantix. I have to admit I am rather leary of what that will mean. Although it is nice to not endure the nausea and bizarre dreams, I am scared for the future of finding a treatment or cure for FA. I am fighting internally with my thoughts of finality.
But just like back in high school, I need to trust that He has some #2 pencils tucked away. And just like the wrapper from my favorite candy bar, His plan of a treatment or cure of FA is adhering itself to the right people and both will be displayed at the right time!
The ride may be long and the "game" may not be quite so entertaining like 6th hour Civic class but we will get there with His grace.
I believe it. I have to.
and so thankful I can be of service...

basking

My pastor always ends his sermons by quoting Ephesians 3:20-21 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at within us, to him be glory in the church in Christ Jesus throughout all generation, for ever and ever! Amen!"
Gulp. Reading these words and thinking about these past seven months, I would never imagined my life at this point. But that's just it- I can't imagine, God totally can. As this study is nearing the end, I was fretting over the completion and panicking that this would be all in vain. I feared that my passion in finding a treatment or cure for this stupid disease would wain and my life would go back to "ho-hum". But God is the one to make it happen, I am along for the ride. For three days, I was letting Him know my concern and basically questioning his plan. No answer. That is until the phone rang from Ohio University. They are doing a 5 year clinical study on the heart and FA patients and asked me if I would be willing to be a part of it!
Listening to the details, I was a bit speechless but agreed to be a participant. My first visit will be in April. The words MRI, IV contrast and 4 minute racing of the heart were thrown around. In my mind, all I could think of was "wow, God, you do more than I ask..."
Admittedly, I have been freaked out with the news about my heart as I discovered from Dr. Z the urgency in protecting it from the damage in the progression of FA. But according to His power He gets it. Why can't I and trust His plan is amazing and far greater than I could ask for?.
Mom and dad, if you're not keeping up with my blog, a stranger in cyberspace may know this before you, I realize that. I've been trying to process it all and attempt to keep up with God! It's always better when I do. I'll just sit back and soak up the "son".

while I'm waiting...

This is the view from my family room window. Delsie and I are going nuts. Honestly, Delsie seems content, it's me- I'm trying to be patient. For what? The hope of waking up to the sound of birds chirping and the smell of fresh cut grass. I can't wait. Fresh air. Neighbors. Beams of sun. Reading a book outside. Breathing. Feeling my toes again. Taking a shower to cool off. Sprinklers. Flowers. Bare feet. This, too, shall pass. My mantra.
Patience. Am I peaceful in the waiting?
I am scheduled to speak at a women's conference entitled, "In the Spirit of Peace" at the end of this month. Pressures on and time is ticking away. My prayers begin with a plea for God's direction and then end with ways He could provide hope for me. Me, me, me....wahhhhhh.
Wow- selfish. But He is so patient. Just waiting for me to get it.
I have a LONG ways to go but I do know having FA has forced me to be patient in areas I know I would have taken for granted in the past. I live life in slow-mo compared to the "norm" and yet, this way of doing life is normal for me.
I am not sure where this study will bring me or the hope of finding a treatment or cure for FA. The fight is not over. In some ways, it has just begun. There are days that life seems to be in slow-mo. Freezing. Grey. Numb. Drab. Boring. Winter.
But there is hope. Spring is around the corner. A treatment or cure for FA is rounding the bend too. I can't give up. So I prepare for my next visit to FL this weekend. After that, I taper off the drug. I am dreading it but I must be patient.
He always is.
and He will help me find the peace in PAtiEnCE.

attitude of gratitude

People come and go in our lives. For some, that is okay. And others, we miss. These three people entered my life and more importantly, have a place in my heart. Every month I look forward to seeing them. I enjoy hearing about their lives. Each time I learn something new about them as people. I like them.They are passionate about their job. Committed to find a cure for this Ataxia thing. I am still working through my disappointment that they didn't include me in the memo about wearing black and white last month. This is a photo of my team at USF for the clinical study during my fifth visit. (from left to right) Kelly, Dr. Z and Laurie. I can call them friends now.
Another "blessing" during this dreadful disease. A little nugget of gratitude that God gave me in this journey. Gifts, like friendships, are all around. I just have to choose to look at them. At times, it seems so much easier to go down the slippery slope and focus on the bad. But in the end, that causes more harm than good.
On my last visit, Dr. Z ran into the room where I was being tested and gave me a big 'ole hug. She has an ability to make me feel cool that I have FA when she goes though the neurological tests and we chatted like I was her only patient. After Dr. Z left, I said to Laurie, "Wow. She spent a lot of time just talking to me!"
Without hesitation, she replied, "Well, she likes you a lot."
The feeling is mutual. She's not just my doc, she's my friend.
Despite the fact I wasn't included in the memo.

no place like home

USF. I never knew this place existed seven months ago and now it's a part of me. A big part of me. A huge chapter in my story.
Kind of like Freidriech's Ataxia. I had no idea this disease existed until my diagnosis at age 20. And now, I wouldn't know life with out it. Mind boggling.
Having a disability has taught me to live in the moment. I haven't always succeeded at it. Especially these past couple of weeks as I am anticipating "the end."
The end of this study. The end of private planes. The end of memories made with family and friends. The end of improving physically. Worse yet, the end of the hope of finding a cure or a treatment for FA?!
"Thanks for participating in the study, Holly. Good luck in the future."
Then USF, Dr. Z and this clinical study escapes my life as quickly as it invaded it?
Chapter done. Book closed.
The thought sends chills down my spine and my heart drops to the floor with disappointment. I am scared this book will just sit on the shelf and collect dust.
This month is my 2nd to the last visit to USF. I am in a rhythm of taking Chantix that is common ground. So common that I can even forget to take the pill. I am losing sight of the big picture. Collecting dust.
I need to regroup and "keep my eye on the prize", as they say. I have no idea what that looks like. But that is when I need to remember that I had no idea what this study would look like and now it feels like home.
God is writing my next chapter. The book isn't closed. I just have to be obedient and turn the page.
There was hope...there is hope.
And it feels like home.

bittersweet

I am surrounded by things that don't make sense. Life hurts. Many, many things that I can't wrap my mind around. Tears that fall and no one to catch them. Questions that are asked and shoulders are shrugged. Prayers that are made and just silence is heard. That's life. And in a bizarre way, I think that's what makes it so bittersweet.
I have been told a lot that I am going to have a lot to talk to God about when I see Jesus face to face. I just shake my head and smile, "I don't think it will matter." I won't feel the bitter. It will be sweet.
But now I live with the bittersweet of Friedreich's Ataxia. And this visit I heard some sweet news. I hope D. Z doesn't read this blog. This neurological thing is beyond me so I will attempt to describe how I understand it. FA is a progressive disease. It moves from the spine into then into the cerebellum. Although I detest the progression, I am thankful for the timing of it all. Through this study, it has been determined that Chantix is proving to be beneficial for those in a certain window. If I would have been "new" with FA, I probably wouldn't have noticed a change while taking the drug. If I had progressed with the FA, I more than likely would have been too late to feel any benefits. I am in the window! I am responding to Chantix.
This study is way beyond my intelligence to wrap my mind around but my tears are caught and the prayers are heard.
A reminder that it's all in His timing. The window. How sweet it is.