Turning 50-Celebration, dancing & pow wow!

Turning 50 was a major accomplishment for me! I could hardly wait! The day that so many loathe, I was embracing with victory. When others were tracking the years until retirement, I was in the midst of a midlife reinvention of myself. I was no longer bedridden with a deadly disease, neither was my son who was now 16. I feel better now then I have in the last twenty-five years. It is time for me to do something that was just more than being in survivor mode...Something for me.

I went from social worker to Native entertainment journalist because I became bedridden in my mid-thirties. I am and was a single mother with a sick toddler who was years away from an autism diagnosis. There were days I could not lift my head off my pillow. Or could not make it up a flight of steps, I would have to sit and rest to gain enough strength to finish. I ran a fever for nearly three decades. I lost my quality of life, so did my son. We were at death's door...However I refused to believe we would die. I had to do something with my brain even if it was from my bed. One day, it came to me, something my Sociology professor at Bowling Green State University told me in front of the entire class-I was a good writer. Then I remembered while I attended Oglala Lakota College in South Dakota, my Native psychology professor told me I was a very good writer and that I should write about Native American men and the good they do. Rather then about the orange jump suits they are stereotyped for. So these thoughts were life changing for me. I had found my magic that carried my spirit to a special place. I began to write for Native American papers covering music. Through this work I was published on the AP wire. I met famous Native musicians as those struggling to make it on the rez. All of them were making a difference in their communities and down the road they would support my activism.

Without my laptop bedside to write my articles, I am not sure I would have made it. When I made it to 40, I treated myself to a massage. The therapist could tell that I had been bedridden and that really hit me...I was devastated there was actual proof of this...However, it motivated me to begin to walk every Sunday at park on a dirt path. In the beginning, walking on concrete sidewalks was not an option as it was excruciating to my entire body especially my neck and shoulders. I have done more as the years have gone by. I had faced so much at such a young age with my health that little milestones were incredible accomplishments for me, while raising a sick child with the same medical problems. My son’s care and needs are a full time job. He has been through so much. I don’t know how he does it but he has rallied every time he has faced severe hardships. Now, with my son finally in a school that he loves, is thriving and our health is stabilizing, it is time for me. The only way my son and I have been able to stand up time after time is because of my parents, Al & Rose! They have stood by us in our very difficult journey. I know it is not easy to see your family sick for years especially in their elder years. I was blessed to have my parents adopt me at birth.

My great journey has so much to do with them and their unconditional love! I am so happy my parents are here to celebrate my 50th birthday! It is so special to have them in my life! So, what I wanted to do most to celebrate my fifth decade was to dance at the Seminole Pow Pow in my jingle dress. I was so excited, I could not wait. I was so anxious! It seemed like it took forever to get there, walk to the arena and get my regalia on! It was exhausting. I was the first one there for the Grand Entry line! LOL I was ready to jingle dress dance-a dance of healing for all my loved ones. I danced for all those who are sick, alone or have not been heard! I wore a handprint over my mouth to symbolize Missing & Murdered Indigenous Women movement & the deadly silence that our communities have endured through this epidemic! It represents the voices of the families not being heard. It represents the silence in domestic violence! When it was time to enter the arena, my heart was pounding and was focused on the beat of the drum.

I felt this amazing surge of feelings that I cannot fully describe as my new moccasins had my heart soaring...I think I was feeling a mix of happiness, excitement & pride with a twist of healing. I am not quite sure exactly what was happening with me... Whatever it was I did not want it to go away! Nor did I want the drum and singing to end! It was a phenomenal moment!...Perhaps it was a spiritual moment that may not be describible... Perhaps it was a spiritual moment that was just for me...in celebration of my 50th birthday!

My son Ranson Weber Horse was born with Lyme disease, Bartonella, Babesiosis & Mycoplasma. Because he was exposed in the womb he his immune system has been severely compromised. No one has any idea how sick kids w/ Lyme can remain throughout their life times. They miss out on a lot of things bc they do not feel good. They spend a lot of their life sleeping trying to regain refreshing sleep that does happen.

With the misunderstanding of Lyme disease, my son’s life has greatly been effected. The two main hospitals in Cleveland repeatedly told me my son was NOT sick, or it was a psychiatric rage at age 2 or it was all in my head because I had Lyme disease. So, Ranson did not get treatment until he was 5! 

My son has been repeatedly abused from the medical & educational communities both here in Cleveland and in Florida. They are many years behind in Florida to even admit it can be passed to a child. So my son continues to suffer…

The latest is- being told he cannot go back to Camp Boggy Creek, a camp for sick children. He attended in 2017 the Immune Deficiency week. However, I was told then that they did not consider Lyme disease an immune deficiency disease, like HIV/AIDS. I had hoped with two years passing and a board full of physicians this would have evolved. But it has not, so my son was told he is not allowed to attend camp this year.

Ranson left this letter on my desk this AM. He did not ask for help. He did it on his own! He is so mature and diplomatic in his letter when I know his heart is dying inside to attend this camp. I know what it is like to fall in love with a camp. That is just one of hurtful/sad things we go through...being sick with a disease no one understands. It breaks my heart to read this letter.

Even with his application in, I had to repeatedly call and call. Even my son called because we did not get a response. Only to be told in April w less than six weeks left until summer, I was finally informed. Even tho I had the application to them in Feb. Then when the Coordinator finally called me back, I confronted her on taking over two months to respond. She hung up on me & said she thought I hung up on her...

If anything, please share to educate the world...our children with Lyme disease suffer so much more sadness, hurt with the world’s ignorance to our disease...

Thank you, Tara Pretends Eagle Weber

Ranson’s mother