Looking at my own reflection in the mirror-Thanks to my sister, Warrior Woman, Megin Kilbane

              Looking at my own reflection in the mirror-

Thanks to my sister, Warrior Woman, Megin Kilbane

The last twenty years of my life has been a whirlwind of struggle, fights, wars, pain, chronic illness, poverty as well have had our share of miracles…Our greatest miracle is that my son, Ranson Weber Horse, 17 born with Lyme disease which went untreated, causing a form of Autism is alive... Many “Lyme babies' ' don't even make it to birth, they are miscarried or still born...When they survive they are a miracle…a miracle who faces lifelong challenges, hardships and medical problems as a special needs child…in a cruel world...

No one tells you the pain, frustrations, sadness and sheer exhaustion, you endure fighting for your special needs child! You fight for their education rights, medical rights, funding & filling up his summers...cringing on whether or not you send him to school or camp with neurotypical kids running the risk of your kid being the victim of cruelty! Or the stress of dealing with school, try finding a school or just experiencing plain disregard for your child...Or fighting the disability classification with the school because their angle gets them more money! But leaves out my son’s illness...You would not leave cancer out of a child’s chronic illness, educational plan...Or your kid gets more sick from his teacher leaving him in wet socks in the winter and the therapist abandons you...the one you paid out of pocket to help your kid...Oh, then there is the time my son’s therapist tried to put us on a safety plan bc when my son told him while at a sleepover he saw naked women online! WTF? Who does that? They were 13 years old...I felt the therapist stole our ‘normal’ teenage boy moment...which are rare & we warmly embrace! :)

Then there the different therapies...the therapists, doctors, the schools nag you to put your child on this drug or that drug. I have spent years researching the disease, different resources, camps, social skills programs and applying for scholarships, non-academic programs and support for doctor’s visits...Blah blah blah…But you do it.

Being a special needs mom is more than a full time job...even when u have HELP!

I, too am a living miracle who too has survived Lyme disease, now for thirty nine years. I was bit by infested ticks at twelve years old and the disease progressed causing me exstensive neurological problems, unimaginable pain & suffering. I spent YEARS being misdiagnosed with everything under the sun. I was abused, belittled by the medical community in Cleveland. For years, I was treated like my and my son’s life was LESS...but I would not allow it. That is why we have seen the world’s best doctors, had alternative methods, Advanced Cell Treatment and our Native ceremonies...This combination of exstensive treatments has kept us here…

I was bedridden for many years and only got out of bed to be a mother to a very sickly child. All the while we were mistreated or disregarded because we have this disease, that no one knew about or has learned is real! So both my son and I also educate professional people all the time! There has been very slow progress in the medical community...just last month, my new primary care told me three times that Lyme disease cannot be passed from mother to their unborn child. Every time she said it I responded by telling her, she should not be saying that...then finally I said she was wrong and should update her medical knowledge…No apology, she acted like the conversation did not happen...That is the mini version of our life...and I whole heartedly admit I really have never processed or spent time reflecting-how it all has impacted my being...on every level.

I “know” things but have not truly processed my reality...the pain, the agnozing pain of our journey which includes the death of my niece/daughter, Hayley in 2015, and then her mother, my sister, Reina died in 2017...which brings me to looking at my own reflection in the mirror...

For over a year, I have listened intently to my dear sister/friend, Megin Kilbane as she battles two cancers..her journey has been excruiating painful and includes so much more then fighting cancer. Like so many of us, Megin a mother to 4 adult children and wishes her relationships with them were different. She has tried endlessly to fix something that will take a lot of effort on everyone’s part to fix. Now is not the time because it is a painful fuel to her cancer. Megin has been forced to face choices about these damaged relationships as she battles cancer. Megin finally has chosen herself, before anyone! Megin is doing whatever it takes for her own peace, self respect and is not engaging in toxic relationshipst! Her strength and self-revolution is kicks ass to see! 

Megin told me yesterday, that this is the first time she ever put herself before anyone else!

Girlfirend, has worked so hard on herself and evolved in to an empowered woman! She too, has spent a year in therapy as the work we have done on her healing! I have watched this girl come to life for herself!...And She is truly incredible! Her choices are now for HER!I I am so proud of her...I have been greatly inspired by Megin! So much so, that I HAD TO TAKE HER LEAD & WORK ON MYSELF...FOR ME…

I had to look at my own life, take a long look in the mirror at my own reflection. I saw how truly strong I am and blessed to have the willingness & continued strength to  feel the horrors we survived! And wasn’t my therapist, my parents or even my son that made me see my true reflection in the mirror, it was my sister/friend, Megin...

So, I consciously about a month ago...allowed myself to briefly reflect back on being so sick, bedridden with a dying child...and to rub it in, no one believed us... The subhuman treatment by the medical community...Yet, I mustered the the strength during this time to also help others; mothers with Indigenous children who were missing who also were treated like their children did not matter and adult children with missing father who were treated like us by the system. I helped because I had the knowledge and heart to help...But it took a toll on me...and I needed to acknowledge that as well as the mistreatment by some of the families…

I was overtaken by my emotions, they were raw as if it all just happened…I felt the beaten down feelings I had everytime I was treated so heinously advocating for our lives...and those missing...We were treated like we were not human... repeatedly...and I found that agonizing pain rearing its ugly head in the midst of my melt down. My heart broke open...I felt pure agony...I cried on my couch for the next week...I forced myself to feel for myself and for my son, the same compassion that I am showing my dear friend and showed the families of the missing. I cried and cried and cried…

I have been in surivivor mode for two decades and just kept going because I had to! I did not have the time back then to even write this...the next crisis kept happening..it was always a fight! It was survival mode, waiting for the next punch! I was on auto pilot for too long. It took a toll on my entire being, my spirit...Time to really heal!

So, I am back in therapy, taking an anti-depressant and working on processing our past to move forward. I knew it was time as I had started to experience terrible anxiety that manifested in to panic attacks...And let me tell you, as a social worker who has worked with trauma and seen panic attacks to the point of someone hyperventalating and passing out in my arms...Only from my professional training did I know what I was experiencing...It was horrific! My throat was closing and I was panicking about breathing in a way that I HAVE NEVER EXPERIENCED! It was a doom that made me feel I was going to die right then and there...just imaging the slightest task would put me right back into it...I was panicked at the thought of death...This was not normal for myself. So, I got more help for myself! I am finallly stablized and feel much better than I have in a long time…

I have survived my TOO MUCH! I never gave up on myself, my son, my family...or my families of the missing...I have stood strong for too long...and even if people don’t always ask how I am doing...I have started to ask myself…Some thing I promised myself, I will do for the rest of my life! Thanks to my Warrior Woman, sister, Megin Kilbane!

My son, Ranson, my niece, Brittney & me, 2002.

Dr. Charles Ray Jones-Saved my son's life!

Me & my IV antibiotics & my son, Ranson, 2007.

Ranson-educating the public, 2004.

Ranson & I at Camp Boggy Creek, Xmas party, 2019.

A week in the life-Horse & his mom beating Lyme disease

Ist week of school 2019

Sunday

Mom has MAJOR meltdown with her mom, aka Grama. Mom is out of remission, experiencing debiliatating anxiety & depression & neurological pain. Discussing the realities of this disease...decisions to be made.

Monday

1st day of school, Horse feels like crap. Drags himself to school. Wicked cough! 

11AM Mom appt for IV therapy at pain managment-nutrients for immune system. 7 pokes, blown veins, bruises everywhere, must come back, dehydrated.

3 PM Occupational Therapy OT for mom’s neck (Lyme induced degenerative disc w/ bone spur, pinches the sciatic nerve, diagnosed at age 30)

3:30 Physical Therapy PT for mom’s lower back & hip (Lyme induced degenerative disc & Lyme arthritis in left hip)

Tuesday

Horse is sick as a dog, drags himself to school.

11 AM School calls, Horse is miserable. Can’t give him Advil bc no signed dr. forma...ugh...

Cancel IV, mom has to reschedule, too bruised.

On hold with US Dept of Treasury for removing 155.00 a month from mom's SS Disability bc she NEVER sent back her income forms re: Relief from student loan. Forms via USPS mail NEVER DELIVERED. Mom repeatedly does not received her US snail mail...WHATEVER...

Wednesday

11 AM appt w pain management, Dr. C. whose been treating mom for almost 3 years. Given prescription for Ibuprofen/Codeine. Mom weaned herself off of Tylenol w Codeine bc doesn't want to be on manufactured pain pills & liver enzymes were too low. IV therapy-RN got it in one stick.

3 PM OT-Mom is exhausted after these appts.

3:30 PT

Cancelled Horse’s pragmatic/social skills therapy w LP who has been working w/ him for 9 years!

Papa orders more tinctures for Horse’s Lyme co-infections Mycoplasma & Bartonella treatment.

Mom forgot to pick up returned USPS mail sent back to Horse’s local Lyme specialist in Palm Beach Co. Stamped-we do not live at that address...WHATEVER...

Thursday

9 AM Dr. appt for Horse, treated Lyme induced Asthma & prescribed antibiotic.           Get forms from doc: permission to give Advil & Asthma meds to be given at school.

Drop of scipt at Walgreens. Bring Horse home to sleep. Misses 3rd day of school.

10 AM Mom at surgery center for a rhizotomy/ablation on her neck. Dr. C, an  anesthesiologist meticulously uses radio frequency through a needle, essentially burning the sciatic nerve off to relieve pain for up to 6 months. 

*1st out of 2 neck ablation procedures. She has had 4 on her lower back w great success. However, when she was very inflamed from stress, it was absolutely excruciating to where she screamed under sedation and body rose off the table ! Her back felt like it was going to rupture out of her body.

To qualify for these procedures, needle epidurals had to be used prior. Thus, having 4 epidural treatments that included 6 injections each time! Excruciating pain! 

10:15 AM While being prepped for surgery,  Walgreens calls mom, Horse’s insurance no longer accepted after 10 years.

10:30 AM Mom in recovery from surgery experiences instant relief. Mom is delightfully shocked. But scared she will wake up w the same pain. Sedated.

Noon: Mom is home, in a bit of pain. Sends Horse to drop off his own prescription at CVS. Told he can’t get meds until tomorrow? WTF? Never in 10 years w Walgreens did they have to wait more than two hours…

1 PM Call CVS for 1 dose, on hold for 20 min. No one ever answered.

1:15 PM Mom calls Horse’s doc to see if she can get him a day’s dose. Can’t make it happen.

2 PM Walgreens calls about mom's medication. The doctor wrote the wrong dosage. UGHHHHH! So insurance won’t pay for lower dose…Says pharmacist will call my doctor, never does. 

Friday

Mom wakes up astounded at the pain relief. Scared it will go away!

Mom drops son off at school. School calls before mom gets home to say-she did not sign either of the medication permission slips, the advil cannot be open and they don’t have their own nebulizer. So she sends everything back.

Mom calls Monroe Co. Jail, emails PBC State’s attorney, re: Rafael Llovera, ILLEGAL IMMIGRANT DOB 12/2/1969 convicted of assaulting mom in front of Horse, then chased him for calling 911. Llovera is harassing her from jail via another victim AGAIN-Llovera is a repeat women batterer. Yet, Judge Debra Stephens failed to include Horse on the Injunction for Protection from Domestic Violence. Mom continues to document the system’s lack of protection of Horse & chronic violations of victims' rights...SYSTEM FAIL!

2 PM Social worker from Horse's insurance confirming home visit. To say she can help w the Lyme disease treatment expenses. HA Little does she know!

3 PM OT

3: 30 PT

Mom pick up her own re-written prescription at 4:54 PM. Six min. to spare. Gets a text from Walgreens, her script is delayed due to insurance…

7:47 PM Horse & mom get to CVS just in time to get his antibiotics. Only took a day and a half, when at Walgreens it is only an hour. 9:45 PM text, Walgreens mom’s prescription is ready, 2 ½ days later…

Papa picks Horse up for the weekend.

Saturday

Papa and Horse opened his first bank account.

Worked on Camp Boggy Creek Transitional Program application for fall dates. This program is for teens who have aged out of camp and are provided extra support, life & work place skills.

The world seems to have slowed down for a brief moment. Horse is at his grandparents. Mom has some down time...to write this, just in time for week 2. To begin...

It never stops...

Brief Health history

TARA/MOM has been sick w/ Lyme disease & co infections, Mycoplasma, Bartonella & Babesia for 38 years. She was bitten at 12 and is now 50. 15 years ago, after her son, Ranson Weber Horse was born, she spiraled into the depths of illness hell. She was finally diagnosed in 2005, BUT was not treated until 2007 where she was receving IV antibitotics & was poisoned by tainted Heparin. Tara settled w Baxter Pharm that killed thousands. Only 5 of the 83 Plantiffs were STILL ALIVE...Tara was 1!

Tara has exstensive neurological damange and chronic pain and used Native American medicine & ceremonies to save their lives! She and Horse were blessed to be clients of Advanced Cell Training, which restored their quality of life after antibiotic treatments. They now use tintures to treat the Lyme etc. 

Mom has neuropathy, numbness and tingling in her hands so it takes extra time to write & use mouse...

HORSE-Sick with the same as mother as he was born w all the infections. Sickly child! Heavy metal, preservatives in vaccines, caused permanent brain damage & comprimised his illness. Horse has Lyme induced Autism, ADHD, relapsing infections, special education plan, Math disability, cognitive processing delay! 

Abuse of Lyme disease patients is by design. The Cleveland, OH medical system told mom that THERE WAS NO LYME DISEASE IN OHIO! WRONG! They also said that Lyme could not be passed to the baby in the womb! WRONG!

Mom has 1/2 Cervical Spine Radiofrequency Ablation (Rhizotomy) to relieve pain the exstensive damage from Lyme!

After 4 series of epidural shots in neck, Mom had this procedure.

Mom & Horse

With Dr. Jones-World's only pediatric LD specialist!

Tara & her parents!

Papa & Horse

CORRECT INFO ABOUT LYME DISEASE

**International Lyme & Associated Disease Society (ILADS) https://www.ilads.org/

A Lyme Literate Medical Doctor LLMD has received training from ILADS!

**SYMPTOM & CYCLE OF SYMPTOMS CHECKLIST:        https://lymediseaseassociation.org/wp-  content/uploads/2009/11/DrB_SymptomList2005Pdf.pdf

**CONTACT TARA/MOM, leave a comment here or Contact Tara page!