time to dream.

I had a conversation with a friend today that made me stop in my tracks. She told me she is learning it is okay to dream. Not the go to sleep and let your mind create a story kind of dream. But rather the kind of dreaming that you ask yourself who you are and what you want your future to be.
Somewhere along my journey, I stopped doing that. I have let the unknown grow bigger and stronger than who I want to be or even SHOULD be. Ouch. The honest truth is that I'm scared to dream because in the back of my mind I think, 'it's not going to come true anyway'. I don't want to set myself up for more disappointment. I have enough grief in my life.
In late October, I began my fourth clinical study at USF in Tampa, Florida. My home away from home. Every study has brought its own set of challenges but for some reason this one has been extremely difficult. Both physically and emotionally.  I've allowed the fear of "what ifs" get in the way. And more importantly, the "what ifs" in my life are immediately negative instead of viewing them as possibilities.
I returned Saturday after a week long of intense testing. So many blood draws, walking 25 feet, blood draws, attempting to ride a stationary bike, blood draws, breathing, blood draws, finger to  nose,  blood draws, EKG's and did I mention a lot of blood draws?

And to top it all off, I fell flat on my face that required a CT scan, a x-ray and a visit to a doctor not related to the study for medical clearance as I fractured my nose in the fall.

Two weeks before my visit I began a low polyunsaturated fat diet. PUFA. Who even knew that was a thing?? This low PUFA stuff is going to be the death of me. I have to journal everything I eat and the amount I consume. Extremely laborious.

Fortunately, this study is over the middle of December. I am pretty sure I will become the 400 lb. girl with FA when it's all said and done. I think the days of being gluten-free will be no longer. This girl needs to eat!!!
And I need to dream. And believe that He can make my dry bones come alive! 

I need to have hope and the confidence that this will be worth it in the end.

In the meantime, I will trust and focus on his gifts.

I leave again Sunday with the courage to dream. So tonight I will lay my head on my pillow as the tears fall and begin to rest in the dream that one day this world will be free from FA. That has to happen. It will happen.

a sacred journey of FA.

Dr. Z and me

It's not often that you hear someone say they miss being in the hospital but I kinda do. Well, probably not being IN the hospital but rather the things I thought about the ten days I spent at Tampa General Hospital.

Like passing dark hospital rooms that were filled with people whose life had stopped. The sounds of machines cascading down the hallways. The strange noise became a familiar one and even welcomed as it notified the nursing staff of an upcoming seizure a patient was about to experience. Conversations with family members on the elevator about how their 28 year old son was hit on a bike.  They had been there three weeks already. And no mention of discharge. They were just happy he was alive.  Connecting with a mom of a 21 year old son who had a heart transplant just two weeks before. It was the first time she felt fresh air since the surgery. She asked me all about Barkley. She wants her son to live for a dog like him.  It grew into a sacred time of laughter and tears reflecting on the journey we are all on. Sacred. That's it. Being in the hospital was a sacred time for me. Somehow I feel as if I attempt to describe it, the words will seem empty. I fear that my stories will rob the experience of the joy I felt. I had joy in the suffering. A peace that made it worth it. So that's what I miss about being in hospital...I was on holy ground. And I don't want to forget that gift.

My research nurse, Tara

It was a gift. In so many ways. From the flexibility of a place of work that supports me going; a friend by my side that sacrificed the demands of her life for ten days; my service dog that was phenomenal and a nursing staff that was delightful; new friends that gave in so many ways; the beautiful view we took in everyday by the water; gorgeous weather that warmed our cold bones; the constant breeze that refreshed us in the healing sun; a doctor whom I love that makes me feel like her only patient; my nurse for the research that became someone I want to hang out with outside of the study; texts from people in my corner, reminding me of their prayers; a balloon bouquet from back home that brightened the room and a Unit Tech that brought a smile to my face. But I can't forget to mention the biggest present of all, the hope of finding a cure for FA! It's all so overwhelming. This gift of FA. It's sacred. And I don't want to miss any of the lessons I am learning on this journey. This sacred adventure called life.

So yea, I miss you 9A at TGH. You'll always be a part of me. And hopefully sooner than later, my time there will help lead us to that cure. A cure for FA!

some of 9A at TGH

A different kind of Mothers Day.

I should know better than check Facebook on Mothers Day. It's an in my face "book" reminder of the life I thought I would have. A comparison between the world and myself. It makes me feel like everything I wished for has not come true. The reality of what is and what I want is so obvious. My newsfeed is full of people and their children. It is as if a sign hangs over my head that reads in neon letters, I AM DIFFERENT.
Honestly, a few years ago this day would have made me so mad. Anger would have reared its ugly head and cynicism would have taken root. I am not sure why but I am not feeling that way anymore. I am human so there is a sting of pain as I scroll through the photos. I feel sad as I reflect on what could have been if FA had not come into my world.
But this Mothers Day, I was able to experience a sense of freedom. If I haven't been faced with this life altering disease, I would have missed out on a lot. I would not have met some of the amazing people I met this past weekend. It is sad to think that I wouldn't have felt the extraordinary peace I experienced at USF during my neurology tests. I wouldn't have the gift of Wings of Mercy flying me and a friend to the appointments. My book is full of chapters of God's faithfulness in the little things. The weather was incredible. My friend, Sandy, who joined me on this trip, was so selfless.
 My story would be vastly different if all my wants came to fruition. Yes, I am sad that I am not a mom. At one time, I was convinced that I would be a wife and a mother of twins.  I hate that I didn't get the life I thought I should have. But I finally can say I am thankful for the one He is writing. So, so thankful. I can genuinely say I am grateful for that neon sign that hangs over my head. I AM DIFFERENT.
That difference has confined me to a wheelchair. It makes me uncertain of the future. I do have days that I want to stop fighting. My life can be overwhelming and frustrating. But I have gained so much more than I have lost. It forces me to trust. It makes me relax. It helps me to lean into the unknown. It encourages me to hope. It enables me to breathe God in and breathe him out. FA makes me want to be brave.
I am not a mom. I am different.
I have stopped wasting energy on what should have been and fight for what may be.
This past weekend was my final screening for a new clinical study at Tampa General Hospital. Next week I will spend 10 days in the hospital as I participate in a study that hopefully will further advance a cure for FA.
I was able to look through the photos of other moms and be okay with the story He has for me. I was even able to smirk at the different lives we all live. We all have a story. It's what we do with it that counts.

Outside the plane that took us to Tampa this weekend.

It's such a privilege being this dudes "mom".

FA or not.

The other day a friend asked me what was the hardest part of having FA. I had no idea how to answer her. Typically, I am not at a loss for words. I think I mumbled something about how this disease has been such a slow progression. I explained that I don't focus on one thing that is hard. Everything is hard. I don't have a choice. I just live life as it comes. This answer seemed to work for both of us. We moved on in the conversation. I was touched by her sincerity. At the same time, I was unnerved by my uncertainty how to answer. Honestly, I was haunted by this question. Or deeper, I felt embarrassed by the real answer. In reality, I am ashamed of the truth. Ouch.
I was talking this out with a wise friend a few days later. "I am scared that the hardest part of FA is doing it all alone." She replied gently, "Isn't that we're all afraid of, FA or not?"
So, so true. Her question engulfed my thoughts for days. Maybe forever. For now, her question has been my filter as I respond to things. Like the other day, I was with a group of friends hanging out in their living room. Barkley was restless and had difficulty relaxing. Because of this, I got out of my wheelchair to sit on the floor with him. When the night was ending and people were saying their good-byes to one another, I commanded Barkley to stand. I needed to reposition my body so I would be able to hoist myself back in the wheelchair. A friend who was sitting next to me saw what I was doing and said, "Now I know you want to do this by yourself but can I help you?" I quickly made some kind of joke as I pulled myself up. I was so relieved that I didn't fall as I declined his offer to help. I couldn't stop thinking about his disclaimer, 'I know you want to do this by yourself...' Ouch. Rewind back to the question my friend innocently asked a few days earlier, "What is the hardest part of having FA?"
This was it. I was answering it. Right there it struck me that I fight so hard that I don't need anybody. I got this. I'm fine. But the truth is, I'm scared out of my mind. I'm sad of what was and petrified of what will be. But it's in the now, the present, that I am afraid of doing life alone. And yes, for me that is a life with this dreadful disease. But it is the life I have to live. And my challenge today and tomorrow and the day after is to remember God provides people in my life at the right time. I don't need to live this life alone.
FA or not.
(click on the above sentence to listen to the song that was playing as I finished this post. Gulp.)

doing hard together.

If you know me at all, you know one of my passions is the theatre. (I hope you said that in your best Shakespearean accent) I was bit by the acting bug when I was in elementary school. My parents enrolled me and my best friend in an acting class offered through our city's rec department. I still haven't talked with my mom about why they did this. Perhaps she needed to get the number four child out of the house for a few hours a week. But it worked. I fell in love with all things theater. The opportunity to channel my energy to something that was outside of the normal felt good. It wasn't until my sophomore year of high school when my English teacher, who happened to be a family friend as well, dared me to audition for the musical play that year. Yes, I said musical. I was sixteen and invincible. It wasn't as if my life revolved around acting now that I had a couple of elementary plays under my belt. But for some odd reason, I took on the dare. I decided that day to show up for auditions. No preparation. No change of outfit. No monologue to perform or song to sing. I just showed up. In a maroon Harvard sweatshirt that was my sisters; ripped Coca Cola faded jeans. And really big hair. I think I did a cold reading of something because the director felt obligated as he knew Mrs. Feenstra sent me to the audition without a prepared monologue. I am sure he rolled his eyes as he asked me to sing my song that I had. "I don't have a song but I could sing The Star Spangled Banner!" Oh my. I am old enough now to know that this song is hard to sing with accompaniment but A cappella?!? I was up for a challenge and way too confident. I bellowed that song as my voice bounced off the walls of the empty theater. I stood on that stage and felt right at home. I was bit by the acting bug. There was no turning back. That dare turned into the lead of a musical, "No, No, A Million Times No." Not only did the role in the play that year land me a solo but it introduced me to relationships that would last a life time.

me as "Birdie Seed"

Jen as "Emmaline" (center stage)

One of those friendships was with Jennifer. She was a year older than me. We cheered together. We acted together. She, too, had a role in the play as my daughter, Emmaline. We were Catholic together. And we laughed together. A lot. I loved hanging out with Jennifer.
Unfortunately, we lost track of each other. She graduated and went off to college. I had another year of high school to complete and we didn't stay connected.
About six years ago, I was having lunch with a friend at a local restaurant and Jennifer came over to my table. It was great to see her but I was in a wheelchair and had a service dog now. I felt odd. Did she know my story? We exchanged pleasantries, laughed away the awkwardness and she left. I thought it would be rare to ever see her again. Then, the week before Christmas this year, Jen messaged me on Facebook and told me she has been diagnosed with a brain tumor and would like to get together. Gulp.
Now we're doing hard together.
We made plans for this Saturday. When we met up, it was as if we were going to cheer and have rehearsal for the play. Twenty three years have passed. Life has been lived. A lot of it. There were stories to tell. A lot of them. And this brain tumor.

In a Jen kind of way, she entered  my story about FA with such grace. Total acceptance. And major love. I can only hope that I can be in her corner while she fights this tumor, as she is in mine as I fight FA.  We decided to grab something to eat downtown at Crane's. Neither one of us had ever been there for lunch. Our conversation continued as we ate our soup and salad. A hour had quickly passed and out of the corner of my eye I could see two college aged girls walking toward our table. I immediately became annoyed as I thought they were going to ask about my service dog, Barkley. I wasn't in the mood to be interrupted.  Couldn't they see we were in a deep conversation?! I continued to focus on Jen, secretly hoping that would will their curiosity away. Jen made eye contact with them. I took a deep breath and resolved myself to the politeness that needed to follow after they asked me about Barkley.
"Excuse me", one of the girls said to Jen,"we're from Hope College and we were wondering if there is something you are facing that we can pray about?"
WHAT???!!
I looked up from my salad and looked at Jen. I need to be honest and tell you my cynicism kicked in. This is weird, I thought to myself but I'll play along. Not knowing if Jen would want to share, I looked at her and said, "Are you okay with telling them?" "Absolutely!" She proceeded to introduce us and told them we were good friends in high school but we haven't gotten together in over 20 years. She said she has been recently diagnosed with a brain tumor. "Holly has a diagnosis of Freidriech's Ataxia and I wanted to get together with her. So here we are!"
"Why us?" I asked. One of the girls pulled out a piece of paper and showed us what she had written on it.  "We were at the school asking God who He wanted us to pray for and encourage. For some reason, I wrote the name Jenny. Do people call you Jenny?" she looked up at Jen.
Jen laughed, nodded and said, "Yea! So why did you come here?"
The other girl sheepishly got her paper out and said she kept sensing the word 'pie'. "The only thing we could think was that He wanted us to go to Crane's."
This was bizarre but my heart was softening and my eyes growing a bit misty. "Can we get our friends who came with us and pray for you?" one of the smiley, soft- spoken girl asked.
Jen welcomed them over and we made introductions again. One of the girls shared our story to the other two friends and the guy who joined us quietly said, "He just showed me a blond girl so that's why we came over here." Jen invited him to sit at our table and he did so with his piece of paper.
By this time, I had full blown tears. Those four college students surrounded us with such love as they prayed words of God's grace and healing over our lives. I thanked them for their courage and asked them if they were nervous to approach us. "You have no idea!" one of the girls replied.
And she's spot-on. I have no idea.
Twenty four years ago "Birdie Seed" and "Emmaline" had no idea what "they" were going to face. But He did. And He chose to remind us that He knows what Jen and I are facing. He does. He was with us back then, He is with us now and He will be with us in the future.

May I never forget that.

A selfie with our new friends

And may I never forget this.

one day...

I don't get it. This life is a mess. I don't fit in. I don't want to waste my energy to try to figure it out. I want to be okay with the grey, the ugly. Life can't fit into a box. There is no correct way from A to Z. My path is not straight. It never will  be nor do I want it to be neat. I don't want to fit into this life. It hurts. It's ugly. It's confusing. It's lonely. This life. The one I have been given to live with Friedreich's Ataxia.
Ataxia.  A disease that I am not very thankful for. A  disability that robs me of so much. A diagnosis that has changed the course of my life. It's so messy. And FA makes me feel all of those things and much more that only God and my dog knows.
But tonight I am so grateful Ataxia became a part of me. Because of this dreadful disease, I met the Veldink family. And if you are blessed to know them like me, you know what a gift you have been given. Two of their three girls have been diagnosed with AT, another form of ataxia. Today, Olivia, entered the arms of Jesus.
Every fiber of my being is screaming NOOOOOOOOOOOOOOOOOOOOOOOO! It's not fair. Livi can't be gone from this life. She was only in seventh grade. My heart aches for her older sisters, Abby and Kate. I weep for her parents Dave and Mary.
But I trust  that Livi is okay. She is more than okay. She is experiencing beauty for the first time.  Beauty so crisp and  vibrant and clean. It's no longer grey for Liv. It's bright. I believe it all makes sense to her.
So tonight I cry. Tears stream down my cheek because I am still in this life. But I am thankful for Ataxia. That sounds weird, I know. Almost fake. Trite. But nothing about AT or FA is false. Olivia, Kate and myself know that firsthand. Along with Veldinks and countless others, we are fighting like mad to eliminate this awful thing called Ataxia.
And one day, we will join Liv and tell her thank you for really living in this messy, ugly, unfair world. Your sweet smile and priceless giggle will keep us going. You will never be forgotten Olivia.

left to right: Olivia, me and Kate

And hopefully one day, Ataxia will be...I'll see you soon, Liv.
Meet the Veldink's: click here.

writing why I don't write.

I was out with a friend the other day and she told me I needed to write. She followed up her instruction with my next blog entry,"You need to write why you aren't writing."
 "Okay." I replied sheepishly. I even proceeded to get out my phone. I pretended I was putting it in my notes app to save as a reminder. I totally didn't. Honestly, I blew the idea off. In a second I decided that I don't write because I have nothing to say. Duh. However, as quickly as I formed this answer in my mind she blurted out, "Holly, you have something to say." Gulp. I didn't ask her if she was a mind reader. I just gave her a half smile and shrugged my shoulders.
Since our conversation, I had some of these excuses run through my head, 'It's not that I say anything that hasn't been said before., I am not some profound writer with a fan club who hangs on my every word., Writing is hard... BUT she is right. I do have something to say. Not because of me. Because of Him. God. This story is not mine to keep. He is the one working in me to give me the grace to live. It's hard. Very overwhelming. Completely lonely. Somewhat confusing. Absolutely exacerbating. I'm desperate. For Him. And that's right where he wants me.
I owe it to Him to put my raw feelings on paper. It isn't my story. Yes, I'm living it. My body is the one afflicted with FA. My butt is the one stuck in this wheelchair. It's my decision to rely on a service dog to help me get around. I am the one that falls if I don't concentrate or even if I concentrate. BUT it's my soul that longs to be at peace with Him. And I mean, really at peace. Content. And all of this is only temporary.
I don't write because the majority of time I don't feel that way. I don't. This momentary life feels like it will last forever. I listen to my negative voice a lot. I fake a smile quite a bit. My laughter sometimes is used as a way of redirecting the moment of truth.
At the core of who I am, I love God. That's weird, I know. I am motivated by the one who could heal me in a second. Yep, I am.
And so I don't write because I put down on paper words like that. I am fearful of being misunderstood. I am scared of being patronized. And these words make me accountable to be real in my faith.
I love what Bob Goff tweeted this morning. "We keep asking for more proof; God keeps saying our lives are more proof."   And I adore Goff's response when a follower asked him if he was speaking of existential or empirical proof? And here was Bob Goff's reply, "Oh my, I don't even know what that means...just enjoying God this morning. Hope you have a terrific weekend."
Absolutely hilarious. And so profound. I just need to enjoy God. I think for me, that means I need to write. Not just when it's easy or convenient. In the mess, too.
Life is messy. And beautiful.
Yes, even with FA.

There, Jo, I said it.
Therefore, I wrote it.

Posting this photo may teach Jo to think twice before she speaks into my life again. :) 

 

Love you, Jo!