Autism Spectrum Disorder, Autonomic Dysfunction, Brain Damage, Chronic Illness, Chronic Pain, Dysautonomia, EDS, IEP, Invisible Illness, Medicaid, POTS

Living with POTS feels like living in a REALLY twisted and cruel version of “Groundhog Day”

How has everything changed so dramatically in 9 years?

I  have a love-hate relationship with Facebook memories.   This photo was taken before POTS on May 24, 2011, at Heritage Acres in Dillsburg, Pennsylvania.  That was only 9 years ago!   How has everything changed so dramatically from this time in our life?   Somehow, I managed to take my beautiful daughter’s health for granted.  Just look at that smile and posture!    If you could see the condition her body is in now, it would take your breath away!

This was during the time in her life when she was in the 8th grade.   It was a super stressful experience for her to have to endure going to school every day.   My days were always spent “on-call” waiting for a phone call from the school, and she frequently was unable to complete an entire week of school.    The high school she went to was massive!  So much so, that they had to have the graduation at The Giant Center in Hershey, Pennsylvania.  I now understand and regret some of the sports and activities that I put her through as a child, now that I know what she was struggling with both mentally and physically in her body.  The first year that we moved here from Massachusetts, she did very well because she was the new girl in town, and academically she was at least a year ahead of Pennsylvania with their curriculum.   As a result, I allowed them to take some services away from the IEP that had been carefully developed for her in elementary school.     In the eighth grade, the school district failed her miserably in Pennsylvania by delivering the interventional services that she was legally entitled to.   I can not imagine having to maneuver POTS in public schools.    I would REALLY like to see awareness brought into elementary schools.   Especially gym teachers and school nurses.

It was also during this time that she was beginning to have some cognitive issues that required exploration and intervention at The Amen Clinic in Reston, Virginia.    (I believe this was the progression of EDS).   It was during this time that she started to mention that she was seeing dark shapes.  She also heard and talked to voices in the ceiling at the ER, but this eventually went away (as far as I know).   We also learned in a SPECT scan at The Amen Clinic that she was missing white matter connecting the left and right hemispheres of her brain and had also suffered brain damage.    I do not remember when this could have been, other than a significant car accident that I was in when my kids were little that did not involve the hospital or paramedics.    She was delivered via c-section, and there was a very long pause before she cried that felt unnatural.   I’m assuming her APGAR scores were fine because nothing was ever noted.

Reggie was her first love

We discovered “Heritage Acres” in Dillsburg and went over to meet with the owner and take a tour.   One of the things that I LOVED about this place, was the girls were welcome to hang out here.  They were expected to help, tack up their horses, clean up after their horses, and get dirty and sweaty.   This was no place for a prima donna!   There is no greater smell than horse manure.   Have you ever smelled their noses?   They are magnificent creatures!    This horse was her first love.   She called him “Mister Man” and they had a fantastic relationship.  We did not own him, as he was a lesson horse at the barn.    Eventually, it would become too overwhelming for her brain to canter and jump with speed over the rails.   She eventually got to where she would only go and visit him before graduating from high school.   The last time that I took her out to see Reggie, I watched her walk out to the pasture that he was in.   I heard her call out his name and I saw him lift his head up.   He walked over to her and just lowered his head in front of her.  I still get goosebumps thinking about that encounter.   We did have the second set of her graduation photos done with Reggie.   Reggie passed away about 4 years ago, and she took the news pretty hard.    We never had to worry about boys.

The relationship with a horse is definitely palpable.   When you have that connection with a 1200 pound animal, it is incredible.   She grew exponentially in her confidence, and animals have always been very important to her.   (we used to affectionately refer to her as Dr. Dolittle because we have had a menagerie of animals both alive and stuffed that I lost count of.)   She always talked about becoming a veterinarian when she was a child.

 

Perhaps I’m feeling melancholy for her love and passion for horses, and a condition called POTS that stripped away from her ability to groom and visit her.

Perhaps I’m feeling melancholy over just letting her pony go a couple of months ago to another farm.   She’s living out her life on a farm surrounded by the joy and energy of little girls and will hopefully become a lesson pony there.   While I enjoy following her journey, it is very bittersweet because this should have been them together.

Perhaps I’m feeling melancholy and grieve that it’s too painful for her to hear her pony’s name, so she’s asked me to not speak of her anymore.

Perhaps I’m feeling melancholy for her life that has been dramatically altered and her quality of life that is being heavily influenced by POTS and the terrible weather patterns in the state of Pennsylvania, and the helpless feeling of watching it day-in-and-day-out.

Perhaps I’m feeling melancholy because we are having to declare her “permanently disabled” so that she can keep her excellent health care because not all doctors want to work with Medicaid and the government.

Perhaps I’m feeling melancholy because I love her so very much and wish there was some way that this could be given to me.    She has her entire life ahead of her.

 

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