"it's her turn now."

In a time like this, it seems better to ask for forgiveness rather than permission. This is a video I shot on our landing in Tampa. Brecken asked if landing was scary. Listen close to my sister's comforting reply, "yea." This traveling thing is not my sister's gig. She often jokes that she doesn't leave Zeeland. And it's not a joke. She doesn't. So, I commend them for doing it. They were scared beyond belief. You will notice Christy's barf bag in position. If only we were so lucky about 10 minutes prior to this video. Although Brecken enjoyed the treats we packed for the trip, her nerves did not. And the treat bag quickly became the barf bag along with Delsie's back. And all I could do was laugh and gag a little...poor Breck.

the end to the beginning.

My last visit for this clinical study was last Monday. My sister, Christy and her daughter, Brecken conquered their fear and joined me on this trip. So many memories were made and A LOT of laughter. But the question remains: now what? I am confident that this is only the beginning. A hope to find a treatment or cure has just begun. I have a peace about it. I trust Dr. Z and her team completely. I don't have the answer to what happens next because I don't know. And I am okay with that. I really am. But not knowing doesn't not equate apathy for me. I hate FA. Hate it. Especially these past couple of weeks of going backward physically. A blatant reminder that Chantix was aiding me in this fight with FA. I am aware now of how much this dumb disease has taken from me. I know I am different. We all are. But I am learning what it means to embrace the journey. In a bizarre way noticing that this difference can be a blessing. Not that I would ask for this but that I will use it. For Him and for others diagnosed with FA, for Dr. Z and the other researchers who are dedicating their time to find a treatment or cure for FA. So, yeah, I could ask for a prescription for Chantix and be done with it. But it is far from over. This is so much bigger than me. I look forward to making more memories and laughing A LOT more. I am sure there will be tears, anger, doubt and certainly questions but it's just the beginning.

barf bag, anyone?

September I embarked on a journey. A journey that was full of unknowns. Like the journey I have been on with FA. Full of unknowns. I have learned to embrace these. Sometimes with complete fear and at other times, with confidence. Strength that only comes from Him. So, being a part of this clinical study has been incredible.
I have been off Chantix for the past month. This morning was the first time I noticed the struggle of FA. I freaked a little bit as I almost fell.
Sunday I travel down to FL for my final visit. I am praying that I don't feel the finality. Hopeful that this is only the beginning. But it's unknown. The next step. The only thing I do know is that I'm not giving it up. Looking forward to my visit to USF and seeing Dr. Z and somewhat anxious for what's ahead. Probably not as anxious as my sister who is joining me on this trip. When I asked each of my sisters to join me on a trip she replied, "I don't know if I can do it, Howard. I almost barfed when I saw your photos of the plane." She can do it. God is always there in the unknowns. In FA and small planes.

on the horizon.

My mood has totally changed. I don't think it was the Chantix that made me depressed. It is the lack of sun in West Michigan. I am a therapist and have taken the liberty of diagnosing myself with SAD. Seasonal Affective Disorder.
I am completely enjoying the sun. My curtains are wide open. The sounds of birds chirping wake me up. The piles of snow melting. I think we made it!! Spring is almost here!
I can not wait for the day that this season of finding a treatment or cure for FA is over. I have been in the winter season of FA far too long. I can remember when the journey began and I was in my sisters house walking with a glass of ice water. The family was all there. I walked from the kitchen to the family room and stumbled a little; the water went flying and the tears began. I think I screamed that time. I was scared of what was ahead. We all were. My mom just held me and my sister, Christy, cried while Lo filled my cup with water. Cherie, stood there with a hand to offer me up off the ground. The awful season.
But it's a new day and the sun is shining. Spring is almost here. And just like this sunrise on my deck a few years ago, the treatment for FA or even a cure is in the horizon!
And in the meantime, God has blessed me with an amazing family and awesome friends to travel through the seasons.

the waiting room

This is an "after the action" shot. As I was waiting for my blood to be drawn at the lab last visit, I had to wait outside of the waiting room. It was packed as only two of the technicians decided to show up to work that day. I wasn't annoyed by that. I actually felt bad for them- totally out of their control. What irritated me was this man who stopped an inch away from me and Delsie and proceeded to talk to D. The whole waiting room was quiet and people were bored as they were waiting for their name to be called. So when this man started a rather loud one-sided conversation with Delsie, I knew I had to take advantage of this "teachable" moment...I had a captive crowd.
As this man made an advance toward petting Delsie, I tightened her leash toward me and said, "I'm sorry, sir, please just ignore her. She is working and can not be distracted." The entire waiting room heard me. I wasn't bashful in my response. And he wasn't bashful in his response either. He bent down to pet Delsie as he probably thought her wagging tail was an invitation. His back was to the on lookers and I noticed some were shaking their head in disbelief. I felt pressure now that I had to follow through with my original lesson. "Sir, please don't." I tugged Delsie toward me and commanded her to look at me. He stopped only because he finished telling me about how he used to have a black lab that lived to be 15 years old. By this point, I was bothered and felt bad for Delsie. My friend was in the waiting room chuckling as she tried to get the exchange on camera. Thus, the after shot.
I am very similar to this man. Although I am not distracting faithful service dogs, I must be annoying God with my ignorance to His faithfulness. I have one last clinic next Monday. No plans of a flight down there as of yet. I'm starting to panic and forget that He is faithful if I just be still and listen. Something this man wasn't very good at and something I am struggling with as well. I am not letting God do His work. Instead, I am distracting my thoughts with the negative ones and wanting my plan. You think I would have understood this by now. I have lived with FA half of my life. ( my stomach just dropped when I wrote that) I can just picture those in heavens waiting room, shaking their heads and thinking, "she doesn't get it". And I don't. Not at all. The lump in my throat is a good indication that I am sick of it. All of it.
But I must wait. Just like that day in the lab waiting room. I just hope I don't fall asleep and miss it.