you can't have one without the other.

This past week I had the privilege of speaking to the men and women's golf team at Hope College. I was asked not because I am a golfer (obviously) or an alumni of Hope College (which I am) but because I have a story. I know, we all do. Trust me, my self doubt and insecurities did not let me forget that. But my story is not one to keep to myself. It is filled with His promises. His patience. And His presence.

I am beginning to piece this all together. The doubt, the fear, the anger; they were a huge part of my story. I painfully admit, they still play a role. Thankfully, they aren't the lead characters anymore. God is.

As I worked through my story, I realized the two can co-exist. For so long, I thought I shouldn't hurt if I really had hope. I know that sounds silly.  Even writing it, I can't believe I was believing that lie.

I face timed one of my sisters to go over what I had prepared to share at Hope. I have three older sisters. She and I have been pegged as the emotional ones in the family. I like to think she is more sappy then me but if I'm honest, we both can hold our own in the "wear our emotions on our sleeve department" pretty evenly.

I thought I had practiced enough on my own. I felt prepared for the parts of the talk that would hurt and cause me to be a bit more emotional. What I didn't plan for was the two of us getting hit with raw feelings.  Man, did we cry. I can't speak for her but I was surprised with the part of my story that hurt so bad. It really hurt. The difference for me this time is I believe beyond a shadow of a doubt, I still have hope.

Yes, a hope of a cure, for sure. But finally I have a hope of His promises. A hope of His patience. And a hope of His presence. It's so freeing to say that. It's even more liberating to believe it. Finally, the freedom to trust in Him.

Don't be disillusioned in thinking I have arrived. That couldn't be further from the truth. But those college kids made me realize that hurt and hope can co-exist. Actually, there has to be both to search for the purpose to the pain.

Thanks, Hope College men and women golf teams, for challenging me in my journey and allowing me to share my story. I believe we were all made for something more.

It Takes Hope

Two words. Look beyond. 

I've been repeating them. Over and over. It took me a long time to be able to really do this. Those two words freaked. me. out.The thought of my future was scary, overwhelming and unknown. It still can be. But I no longer want to vomit when I hear those words. I don't know or even want to know what's ahead. When I was first aware that my body was becoming my enemy, I tried desperately to hang on to my faith. I had no idea what that looked like but it sure sounded good. In the back of my mind I remember wanting so badly to have the faith of a giant but truly feeling the size of a Nat when it came to expectations of my future. I needed to look beyond.

I often tell my clients that the head and the heart are only 12 inches away. But my heart is  miles and miles away from what I know to be true. Facts verses feelings. FAITH. Besides being a lot of "F" words, I desired to be filled with hope and not fear.

Years ago, the acronym of FA-ITH  (It Takes Hope) began and I didn't even know it. All these years, my heart was catching up with my head.

This entry doesn't mean I have arrived. Far from it. But it does mean that on my good days I am able to look beyond. And thankfully, I am in a chapter in my story that the good days are outweighing the bad ones. I'm looking beyond with expectations.

In order for me to hope for the future, I scroll through my photos and remember where I've been. And this one reminds me that it will be worth it. If not today, the end of my story.

About a year ago, a friend of mine created a logo that I had printed on t-shirts and hoodies. It was my intention to raise awareness for this rare disease and in the process donate the money earned to FARA. (Friedreich's Ataxia Research Alliance)  The first campaign was embraced by my close friends and family. Mostly because I begged them to buy a hoodie. The second campaign I promoted it through a promise. If I sold 150 FA-ith t-shirts and hoodies, I would tattoo the logo on my body. Honestly, I set this goal thinking it was unattainable. But on March 11, I had to fulfill my promise and get inked. I gathered some friends and we made the trek over to Chicago so I would permanently be reminded to look beyond as I have the FA-ITH to believe that It Takes Hope. 

the finished tattoo

 I told my friends that I was going to kiss the first stranger that asked me about my tattoo. Well, last week  the sales lady at the Outpost in downtown Holland was the first person to ask me about it. And poor thing,  I gave her an earful. She was so kind to listen and even knew my story a little as we have a mutual friend.. :) Although I spared her from a kiss, I gave her a hug and thanked her for asking.

I am continually wrestling with the tension of knowing that I need to look beyond my circumstances. But I am constantly  tripped up in the present. The losses are great. And constant. But it's in the middle of the pain, that's real. That's raw. That's life. Mine is a life with FA, unfortunately. But when I look beyond, I see having FA as fortunate.

Easier said than done.

The other day I heard someone quote A.W. Tozer and I can't get it out of my mind. Honestly, it's driving me nuts.  These few words are propelling me to look at my life through a different lens.

 “It is doubtful whether God can bless a man greatly until He has hurt him deeply.” ― A.W. Tozer

Most days, I struggle to say or even believe that FA is a blessing. This disability has drastically changed the course of my life forever. The majority of the time, I hate living with FA. Often times, I am trapped in a body that won't work and that spirals into my mind filled with negative thoughts. But what I can try to communicate and even trust is that God is real. And because of FA, I am able to notice the blessings. I am wounded deeply but I want to be used greatly.

That scares the daylights out of me. I have no clue what that even looks like. But those simple words can have a profound effect on the way I do life. I just need to let them take root. Easier sad than done, I know. Believe me, I know.

I can't even count how many times I have said to friends 'I don't get it.' in the past two weeks. There are people in my life that are enduring a hurt so deep that makes absolutely no sense. I texted one of these friends over the holiday weekend, knowing it would be a tough time for her. She responded honestly in her text, "It's hard. I'm not a fan of holidays." As I inhaled, I exhaled these words in my response, "Yeah, holidays are hard when you're hurting. I guess I've been hurting for a long time."

I have been in pain for awhile. And I'm not referring to the physical struggle.  It's the emotional pain that's tripping me up. The ongoing disappointments that clog my thoughts with darkness. And major doubt. Along with an all consuming fear. I need to see the road of FA as a destination and not a detour. Easier said than done, I know. Trust me, I know.

That's my problem. I can't believe or even trust my feelings. My feelings are my downfall. It's my faith that I should focus on. I need to believe Him and trust that He doesn't waste a second of this pain. He loves me. He hates FA. Just like He loves you and hates whatever is causing you to hurt.

As I get older, I'm okay with saying I don't get it. I may never understand it. And that's okay. As long as I'm loving the one who does.
Thy Will Be Done. (click on the link and you'll hear the song I can't stop playing) Or read the words from St. Theresa's prayer hanging over Barkley's bed. And just breathe.

Easier said than done.

Unfortunately, I know.

an acronym

I am listening to fear. Not only listening but being motivated by it. Hearing this fear is a scary place to be. A few years ago a group of my friends and I met in my home every other week for a Bible study. The leader used an acronym of the word fear. Yes, I rolled my eyes with the use of an acronym but it stuck. FEAR. False Evidence Appearing Real. That is what's happening to me right now. Not only has the acronym of fear gripped me, my fear is strangling me.
Earlier this month a friend of mine prayed that I would dig down to the root of my fear. And immediately I cringed. I began telling myself that it would be too scary to expose my vulnerability. I allowed myself to believe that it would be easier to skim the surface of my life than tear down the walls that I have built that I think are protecting me. That, my friends, is what is false.
So, I begin to dig. To start blogging again. And to stop believing the lies. I need to recognize that my doubt does not equal unbelief.   I want to breathe again.
I have created FA to be this ugly, monstrous, all-consuming thing in my life. Somewhere along the way it has robbed me of pure joy. It's held me hostage in my own body and I have given in to the tears that fall on my pillow almost every night. FA convinced me that it would be easier to do life alone. I've become accustom to isolation.
I hate FA. I really do. But I hate even more that it's fostered this FEAR in my life. It's reality that my body is deteriorating. A lot of things are much harder to do. The fact is that this disgusting disease in my body can not be avoided. The losses are insurmountable and continual. I hate FA.

Yet somehow FA and joy can (and will) co-exist.
The other day I took advantage of the nicer weather and walked home. I was in my own little world as I played out different aspects in my life that were causing fear. I wasn't in a good space in my head. But unfortunately this was a common place for me. FEAR was winning.
That is until a bright, yellow Ford focus pulled over onto the curb in front of the sidewalk I was on. A young girl in her 20's with cute yoga pants and blond, wispy hair  pulled back in a pony tail poignantly walked over to me.
"I know you!" I seriously had no clue who she was. She proceeded to state things about me that led me to believe she did know who I was. I still didn't know who she was but for some reason that didn't make me critical of the things she said next;
"When I drove by you I had this overwhelming sense of joy come over me, I knew I had to turn around and tell you that."
I hate to admit it but usually at this point I am rolling my eyes like when an acronym is used. I typically become critical and would blow off her comments.
For some odd reason, I embraced this strange encounter. I even teared up and thanked her for the courage it took to approach me.
We prayed together, right there on the corner of 29th & Ottawa.
"I have no idea what you're going through but you need to know all I see is joy."
I listened to that. In fact, I'm choosing to be motivated by that. Fear has no place here.
Just as my friend prayed, I'm digging deep.

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".