16 Jun For Mama
As many of you know and for those of you who do not know, my Mother passed away from her battle with Scleroderma. She was diagnosed in 2007 and fought very long and hard..and she won because now she is resting peacefully and no longer hurting. Writing this post is very hard because thinking of her and looking back at old photos honestly breaks my heart but I know deep down inside that she is in a much better place. Losing a parent is never easy and I personally never thought that she would pass away from last year’s hospital visit, I thought it would be another hospital visit and that she would be okay. My Mom was only 52 years old, two months shy of her 53rd birthday. With her disease I felt like my Mom couldn’t live the life that she truly wanted or deserved. She worked so hard her entire life to give my brother and I a better life and for the remaining 8 years of her life she was constantly in and out of the hospital and in pain. As she was battling this, I honestly wasn’t there as much for her as I should’ve of. I didn’t understand what her disease was and I was in college going through “growing up” I suppose. I was busy finding myself and seeing what I wanted to do with the rest of my life failing to realize that my Mom was fighting for hers every day. I know that a lot of us take fore granted what our parents do for us until something happens. I have always appreciated their hard work and wanted to make them proud by being successful in school and in my career- you know, accomplishing the American dream. Now that I am older and with her passing, I realized that I should’ve been home more and tended to her. It is something that I am still working on daily because truthfully I live with a lot of regret- regret that eats at me every single day. Should’ve, would’ve, could’ve constantly runs through my mind but I remind myself that I need to try and stay positive and do right through her daily.
Everything that I do is with my Mom in mind because even though she is not alive now, I know that she is living through me, so I need to live. She has given me so much purpose in my life, a purpose that I didn’t know existed. Her passing changed me completely and I am honestly thankful for this painful lesson in my life because now I feel that I know the true meaning of time, purpose, happiness, love…the true meaning of life.
June is Scleroderma Awareness month. The Scleroderma Foundation defines Scleroderma as:
- Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases.
- The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. The disease has been called “progressive systemic sclerosis,” but the use of that term has been discouraged since it has been found that scleroderma is not necessarily progressive. The disease varies from patient-to-patient.
Even to this day, I still do not understand completely her disease. I remember when I was younger when we would be at the hospital I would ask the doctors and nurses what is it and why did my Mom get it, there were very few answers. They told me that the disease caused my Mom’s skin to harden and ultimately it affected her internal organs. With Scleroderma my Mom was also diagnosed with rheumatoid arthritis which caused her to be in pain every day. She was prescribed numerous medication to help with the pain such as Humira but none of it truly helped, the relief was only temporary. Her Scleroderma became worse the last few years of her life, she became very thin and her skin became extremely hard. I honestly didn’t realize how thin and fragile she was until I started looking back at old photos. I had become used to seeing her so thin that I didn’t see how sick she was. She was on bed rest most of the time and eventually she couldn’t walk without being assisted, feed herself or do anything independently. Scleroderma is a destructive disease that over time takes over the entire body.
As I am learning more about the disease and realizing how it affected my Mom, I know that there are many others like me out there who have a loved one who is going through this as well. Unfortunately there isn’t a cure for Scleroderma, the only thing that I can do is to be more aware and raise awareness. I didn’t do much for my Mom as she was fighting it like I should’ve but I will do all that I can now for her, her memory and for all of those who are affected by Scleroderma.
My team and I have designed and created Scleroderma Awareness t-shirts and tanks in honor of my Mom. Portions of proceeds of these t-shirts, tanks, current and future merchandise will go to the Scleroderma Foundation in my Mom’s name. When I said that everything I do has my Mom in mind, I truly mean it. My goal is to eventually one day be able to connect with the people who run the Scleroderma Foundation and do something on a greater scale. To purchase a t-shirt or tank, please go to the merchandise section of my website. Thank you so much with all of my heart for your purchase and support.
I am truly grateful to have been raised by such a hard working and beautiful woman..even though she is not presently here- she is the reason why I have the purpose and drive that I do with my life now. I want to keep making her proud for the rest of my life until I see her again in the afterlife.
I want to thank you so much for the taking the time to read my post and for following me on my journey. There’s been a lot of ups and downs the past year as I am trying to live life without her..but I know that all I can do is try and keep moving forward…and to live with hope.
To Bopha, the Pacific Breeze Marketing team, Elosh Clothing- thank you all for helping me make this vision come to life. I appreciate you all so much.
Mama, I miss you and I love you. Forever and always.