Saturday, June 30, 2018

In the Name of Love

I'm getting emotional just writing this. June 16th, 2018 was indescribably beautiful! My dear friend, Margaret got married. I was honored to be a reader for the wedding ceremony. Here's how it went:

I went to the rehearsal dinner and realized that it was mostly family in the wedding. There were only two friends in the actual ceremony and I was one of them. That really made me feel like a treasure.

Margaret and I were roommates for two and a half years and I love this friend to the moon and back. My first words to Eddie were, "who", as in, who are you and why are you in my home? Margaret quickly followed behind Eddie and explained they were on a date.  After introductions, I looked at Margaret as if to say give me some heads up next time.

Eddie quickly had become a frequent visitor in our house. I liked Eddie's character very much and he would fix my wheelchair anytime he could which I appreciated. Eddie is a paramedic and Margaret works with foster kids so I knew their hearts were with people who were forgotten and lonely. They both simply have hearts made of gold. Needless to say, I was witnessing a love story. When they were going on a trip together, she and I know that she would come with a ring. Bless his heart, Eddie was as transparent as Saran Wrap. I squealed when I got the call!

On June 16th, I sat next to the musician who was my confirmation sponsor and frequently mentioned in the blog, Kevin. He never ceases to have my back in any situation. The rehearsal went well. However on the actual day, the videographer was going to completely be in my way when I went up to the altar. We both took on the issue and it was was quickly resolved.

Kevin started the ceremonial music and I was so nervous. Usually, public speaking is my bread and butter. I was nervous because when I am doing a motivational speech and something goes wrong, I use it as a teaching tool. I don't want to even be thinking about teaching tools at a wedding; neither does anybody else. I don't want my disability to steal the spotlight; that day the spotlight belonged to Margaret.

Thankfully, it went off magically. I ended up being six inches away from the bride and I was choking back sobs. You usually want to look at the audience while speaking but I couldn't take my eyes off her. We were looking as each other as I read from the Bible. It was a perfect moment.

Another moment I will never forget is I was about to take communion and she says to the priest, "break it". A whole host in my mouth is difficult for me. Margaret remembered that on her wedding day; that made my heart swell with pure joy.

The rest of the wedding was wonderful. I love celebrating love. Love is why we have the wonderful world we do. It can seem so dark but when we choose to love, the world lights up.

Readers, I love you with all my heart.

Do something in the name of love today,

Thursday, May 31, 2018

That's a Dad

Oh no! Why is it crooked? My DynaVox is always upright, mounted on my chair ready to use until the day is done. In the middle of the afternoon, it should be helping me order an iced tea at Starbucks or being my voice at the library. Nope! It was sideways on my mount. I didn't have an assistant around so I was left wondering what the heck was broken.

Finally, an assistant came and was able to show me what happened. One of the two smaller screws had broken. Some of the screw was inside the hole to make matters worse. I went to Home Depot and they were afraid to touch my communication device. If they drilled into it, it could screw (no punn intended) with the electronics. Who do I call? Dad.

Both of my parents have received the most interesting calls. Hannah's chair stopped working, the mount broke, the footrest just fell off, it's always an interesting call. I think the only time my siblings outdid me was when my little brother broke his nose at baseball practice. When Mom got a call from Coach Dillon that day, she knew it couldn't be good. It wasn't. Anyway, my parents have gotten a lot of interesting calls over 28 years of parenting. This call was no different. I drove home, Dad took the DynaVox into the garage, and Mom fed me dinner. Let me point out that they both were sporting Loyola sweatshirts. I was proud!

It took about two hours for Dad to fix the DynaVox. He is a miracle worker. I don't know how he manages to fix everything but he does. I'm grateful for my dad; he puts family first no matter what. He clearly treasures my mom. My parents are truly best friends; they always put their marriage first and it leads to good things. My dad will stop anything he's doing for family. That's a dad.  


Memorial Day 2018

Monday, April 30, 2018

Tiffany & Co., Meet Hannah

You all know how deep my love for Starbucks is. It's the real deal. 

My cup holder on my wheelchair is critical in expressing my love for coffee. Recently, there's been an issue. My cup holder keeps breaking my Tiffany's charm bracelet. I know. It's a real problem. 

My cup holder has about ten places for my bracelet to get stuck and break. With the charms ranging from hearts to guardian angels, the cup holder is practically a death trap for my bracelet. It took me a while to figure out why I was breaking my bracelet every few weeks. Meanwhile, Tiffany & Co. did a wonderful job. 

I was going to Tiffany's about once a month, so customer service got to know Hannah Thompson. At first, I would make small talk and then I started explaining how my bracelet broke and why. They felt bad because this jewelry should last much more than six weeks and I was sad that my beloved bracelet kept breaking. Over the months, I started to realize I was starting to explain what my disabilities are. The dystonia was causing the bracelet to break, and my heart would break a little every time it broke. They became increasingly empathetic, not sympathetic, to my situation. I will point out that they did not charge me for replacing the clasp. Until I realized what was breaking the clasp, we had no idea.

I have ordered cup holders that are soft, and I am hoping that they work for the Starbucks baristas. It's fascinating what happens when you open up to people and how kind people will be. I know, customer service would be kind to the woman in the wheelchair, but it has turned to an authentic kindness that goes beyond the job. 

I cannot wait to get my bracelet back. I got it from my entire neighborhood on my 16th birthday. It represents everything good in my life. What a precious thing to own.

I hope you enjoyed a lighthearted story. Due to finishing finals, I was ready to write a simple story about kindness.


P.S. If Tiffany & Co. ever wants to fund raise for dystonia, I'm your girl!

Saturday, March 31, 2018

This is Not a Time to be Quiet

I was blessed to have my parents and sister come to Washington D.C. with me to advocate for Dystonia. We expressed to elected officials how crucial it is for dystonia to be funded by the National Institute of Health, the Department of Defense, and the CDC. We just heard that Dystonia did make the Department of Defense funding list. This is terrific news and it makes me excited that a cure is in reach. This is great but there is something going on in DC that terrifies me among several things, but this gets personal.

The Washington Examiner states, "The bill, the ADA Education and Reform Act, would change the 1990 Americans with Disabilities Act to give businesses accused of being inaccessible a grace period to fix structural problems with their facilities before they can be sued. Under the law, businesses must abide by specific regulations so that people with disabilities, including people who use wheelchairs or walkers or have other impairments, are able to enter buildings and use various facilities" (

This all sounds warm and fuzzy, doesn't it? It isn't. The ACLU states, "The bottom line is that people who use wheelchairs or who have other needs deserve the same right to visit local businesses as any other individual. Forcing people with disabilities to wait months to visit a supermarket or bookstore is precisely the kind of discrimination the ADA was designed to prevent. Businesses have had more than enough “notification” to comply with disability rights law. People with disabilities deserve equal access today — civil rights should not be delayed or tied up in bureaucratic red tape" (

I don't want to wait six to twelve months to enter a business place. This is putting profit over people. 

If you wish to know more, please research it. I believe the Washington Examiner and the ACLU are trustworthy sources. I purposely didn't cite articles from organizations advocating for disability rights since they all have rightfully slammed this bill. Senator Tammy Duckworth is doing everything she can to stop this bill from being voted on by the senate. 

If you want to make your voice heard, you can sign these petitions:

This post was not a break from real life and I feel bad about that because I like telling my stories to you, but this is not a time to be quiet. Pope Francis said it on Palm Sunday and I echo him. This is not a time to be quiet. 

Make Your Voices Heard, 

Wednesday, February 28, 2018

The Everyday Errands

He and I did not speak the same language, but the dry cleaner understood I was dropping off a shirt to be cleaned. "I need number", he said. I tilted my DynaVox, so he could read my phone number off my screen. We communicated even though we shouldn't have been able to. I realized recently that I can run my clothes over to the dry cleaners independently. Why not? If I can do it independently, I sure will! 

Next, I walked the twelve blocks to the AT&T store. I was going to meet Kevin, my phone guy. Kevin happens to have a little girl who happens to have a disability. I remember the first time I met Kevin. We called customer service and they asked for me to talk to them so I could confirm my identity. His response was, "no, she cannot speak". Usually, people have no idea what to say but Kevin, sounded as if he had experienced this frustration multiple times. I think on the second visit to AT&T, he told me about Maggie, his daughter. His wife and I e-mail about communication devices when she isn't being a very busy mom. As for my phone needs, Kevin will spend hours and hours with me. We're looking at all the new phones and anything new that I depend on day and night is always a challenge.

In the wake of the Florida shooting, I’ve been trying to really ask people, “how are you”? Embrace the everydayness of life. Enjoy and treasure life.

In the Name of Love

I'm getting emotional just writing this. June 16th, 2018 was indescribably beautiful! My dear friend, Margaret got married. I was honore...