The Top 5 things I’m Thankful For

“Friends” Thanksgiving

I always tell my sons it so important to say Thank You. No, it does not need to always be formal, such as a note, although I strongly support the use of Thank You Notes. I truly believe that no matter how small like holding a door, whether it is their “job” a waitress bringing you your food, or someone giving you an expensive gift, showing appreciation is necessary. I personally have so many things to be thankful for and what better time of the year? So here are my top 5….

My husband, son, nephew and I ! 2013
  1. People I have encountered along the way!

I am first and foremost thankful for my family. My immediate family, made up of my sons, husband, and the family I grew up with and their spouses and children. They are my motivation. They ground me when I get to caught up in my head. Without them I would live in…. peace & quiet, seriously alone and bored is more like it. The daily hugs and laughter make the difficult days a whole lot easier to stomach. Literal falling and getting up again would not be possible without their daily help and support. Haha pun intended

Friends are ones, self-made family. The amount of people in my life who I have and do consider my friends is amazing when I stop and think about it. I am so thankful for these people who have somehow impacted me, because of them I am the person I have become. Having friends helps to remind me that life is so much more than dishes, wheelchairs, and “Transformers.”

Even though my friends and family can never truly be compensated for everything they give in various ways to me, I need to give thanks for those people who come into my life only briefly. Their actions or words in some way have made a difference to me, whether it be a member of a wait staff who offers to carry my buffet plate to the table, or the newlyweds leaving City Hall who stop to hold the door for me. Thank you and I want you to know your kindness no matter how small it is noticed and remembered.

2. My FA Family

5 years ago I met a woman with the same disease as me Fredrich’s Ataxia (FA). Since that moment my life has not been the same. I am very sure she does not know that. It is extremely hard to see and learn things about this disease that had been haunting me for years. Thank does not even cut it when speaking to a few thousand people who know and live with the same demands that chase you every day.

My Friend and I 2014

I now see a neurologist annually in Phillidelphia. Through him and FARA (Friedrich’s Ataxia Research Alliance) I understand my disease in a way someone with a diagnosis of 18 yrs would be expected to comprehend.

I also was invited to try out for a medical study and made it. Now 2 years later FA might have its first drug therapy approved by the FDA. So thank you to everyone involved. For the first time, I see a small light at the end of my tunnel.

me 11/25/19

3. My Abilities

Reading my sons! 2015

I spend so much time talking about my disabilities, that I forget to be thankful for all the things I am able to do. Guess what? I love to read, for book club, listen to audiobooks around the house, and read to my sons. Reading definitely something that I am thankful for. The chance to escape if only for a little while.

Even though I have lost (some may argue never had) a lot of coordination, I am deceivingly strong. I work out at a gym, assist in my own transfers and most importantly pick up my 40lb son when I want. Just being able to hold him is something that makes me thankful beyond words.

I have a hard time saying it, but the strongest abilities are not tangible. For example, I am a good listener. No, I am not just being corny. I work really hard to pay attention and remember what people tell me. Later, people tend to be surprised by what I can recall. I am thankful I can show people how much I care by remembering details they have shared with me.

4. My past experiences

My emotional history is rocky.  Of course, there are moments that I would rather forget, but overall I have learned a lot from these choices I have made. I also am thankful for the level of wisdom my history has given me. I plan to use the knowledge I have acquired through my experiences to help spread awareness. Disability awareness through exposure and interaction. As well as within the disability community educating others on how to navigate systems and find resources. Helping others to skip over some of the hard turns I have made.

Me and some of my ”’sons”

I am also referring to my life before the knowledge of my disability. I count myself lucky, because I got to……run, jump and dance, not well mind you, but with the veil of ignorance. I lived my life prediagnosis as all my friends did with little thought about the future. Even if can never do those things again, I will always have those sweet memories to look back on.

5. For My Future

My 4 year old 11/26/19

Finally, I am thankful for my future. Yes, to watch my boys both grow to amazing men, but also the mere idea of a future. About a decade ago I was not convinced I had one at all let alone, the limitless one I see now. People, FA Family, abilities, experience, and a future, I am just so thankful.

Winston my service dog 2015

Happy Thanksgiving!