Thursday, November 22, 2018

Remembering you.....

This morning I woke up sad and missing you.

Last year on this day, you were on HIV medications for a total of 5 days, you were so weak you could hardly walk, and you had lost 60 lbs.

You had just gotten out of the hospital but staying in a nursing home, and you were adamant you did not want to spend the holidays in a nursing home, so I thought:  "No big deal.  I will take you with me to Thanksgiving at mom's house."  Only, this time, for the first time, you weren't welcome there.  (That would later be a blessing...)

Determined to honor your request and not have you be in a nursing home, I decided I would skip Thanksgiving with the other side of the family, and we would just celebrate at our house this year.

I was determined to cook a Thanksgiving meal, even though we all know I am the least qualified to cook a meal for anyone....  Surprisingly, it turned out delicious!

Turkey, stuffing, green beans, chicken noodles, fresh rolls, mashed potatoes and gravy, and pumpkin pie with extra whip cream!

We sat around all day watching Hallmark Christmas movies.  Those were your favorite and would sustain us through the entire season...  (PS: There are still several on my DVR just waiting for us to watch them.  I don't have the heart to delete them....)

We had a fire going in the fire place, because that was your favorite spot, in front of the fire place wrapped in a down comforter.

Abby, Ethan and the boys would come by that afternoon to spread Thanksgiving chaos and crazy.  Nothing says holiday like our kind if crazy, and I was so happy they came by to visit.  My heart needed the laughter of Isaac and Cooper.....

All day you drifted in and out of sleep while your new anti-viral medication wreaked havoc on your body, making you vomit what would end up being your last Thanksgiving meal.  We substituted Zofran, Sprite and chicken needle soup in for dinner later that night, and you were able to hold down pumpkin pie finally.

I didn't take you back to the nursing home until I was satisfied that you had been out of there for the "whole holiday".
If I had only known this would be our last Thanksgiving together.  
If only I had known I would not have forever with you.
I would have lived my life a lot differently......

Sunday, November 11, 2018

HIV: Know your status....

Yesterday was a particularly hard day for me, I tried to stay busy.  We went to visit my family, we worked in the yard, went to dinner with friends, but I really struggled with the date of November 10th.  A year ago yesterday I still had a father.  He was a very sick father, because no one could quite put their finger on what was wrong with him, but there was still hope.

A year ago yesterday, my sister took my dad to a neurology appointment, had to go back for some reason, and there in a stack of paper was a script for an HIV test.  Concerned, my sister contacted me and said:  "The doctor just gave dad a script for an HIV test?"  I quickly dismissed it, and thought there was NO way this diagnosis was even a possibility!

Yet, I hit up "Dr. Goggle," and there in front of me was every symptom my father had....  The sores in his mouth, the "wasting" of weight, the diarrhea. the dementia, the lines on his finger nails, the frequent pneumonia.  The list went on, and my dad had every symptom.....  Suddenly, all I could hear in my head was my wife saying for the past several months: "Emily, if no one can find leukemia, has he been tested for HIV?  I remember in nursing school, they mirrored each other."  Only this time, instead of ignoring her and telling her she was crazy, I realized there was a possibility she was right. 

Being hugely impatient, and just wanting everyone to be wrong, I stopped by the drugstore on my way home that night, and picked up an "at-home" HIV test.  (Yes, they do make those....)  I went to my sister's house, we swabbed my dad's cheek, and then huddled around an HIV test ready to wait 23 minutes for the test to be done.  Although, we didn't need 23 minutes.  The test came back positive in 3 minutes.  I literally felt the bottom drop out of my world on November 10th, 2017.

I was absolutely numb when I drove home from my sister's house that night.

All I could do on the drive home was cry.
I cried because of the diagnosis.
I cried because suddenly cancer seemed like a much better disease to have.
I cried because people like my family didn't get HIV.
I cried because the stigma of 3 little letters embarrassed me.
I cried because I was afraid of the unknown.

I immediately went home, joined an AIDS/HIV group on Facebook, and tried to go to bed, but sleep never came that night.

I was up at 2 am, bawling, screaming and pleading with God and anyone else who would listen, for a different diagnosis.  Instead I found a 24-hour support line for people newly diagnosed with AIDS/HIV.  I called them in complete hysterics, ugly crying, and unable to catch my breath,

I poured my heart out to a woman on the other end of the phone line saying things like:  "My dad isn't gay!  My dad's white!  My dad doesn't do drugs!  He hasn't even dated in 10 years!  How does this happen?!"

The woman on the other end of the phone was some sort of saint.  She let me cry, swear, and come completely un-hinged.  She answered every one of my questions, explaining HIV doesn't know race, sexuality, gender, or an age group.  She educated me, explaining what blood levels I needed to ask his doctors about. Talked me off a ledge when I was too afraid to test myself.  (Negative!)  She explained HIV could lay dormant in the body, not showing signs for decades, until the immune system was compromised and that's when it would rear it's ugly, opportunistic head.  She armed me for the days to come with knowledge, and courage, explaining she had been where I was sitting and reassured me I would become an HIV/AIDS expert by the time the weekend was over.  She was right and she became my constant 2 am voice of reason as we navigated forward.

If you are ever in a crisis, you will hear people say: "God doesn't give you more than you can handle."  I called bullshit on that statement November 10th, 2017.  God WILL in fact give you more than you can handle so you remember to look to Him when you're walking through a storm.  And it's through Him you will find no one truly walks alone.  The people who were placed in our path, were absolute gifts from above.  They were exactly where we needed them, when we needed them.  From the woman on the HIV hotline, to a friend who had a friend who worked at Equitas and helped him obtain discounted medication, to the Ryan White Foundation, and all the nursing home people who loved my dad and worked tirelessly to help us find our new normal, never once making him feel like he was "less than or different". These folks became our tribe, and even when there was no hope, it was the kindness of these people who helped us through  the hard times and allowed me to recognize the positives.

I've never written about my dad's diagnosis and illness, because I was embarrassed and didn't want the stigma of HIV to affect our family, but I think part of healing is to grieve and remember, so I've decided to write in an attempt to help heal my broken heart and bring awareness.  Possibly, just possibly, someone out there will read this, get tested, and live a long life due to a diagnosis and medication intervention.  My dad would have loved that.....

Wednesday, September 12, 2018

Virtual Child.....

My Beautiful Child, 

I received your letter and I have to say, my heart breaks for you.  I'm so sorry your coming out didn't go how you thought it would, and now your tender heart is wounded and broken.

I remember what it was like to want to live your authentic life, and to finally take that plunge.  I'm sorry you mustered up all that courage only to now find yourself homeless and alienated by your family.  I'm sickened that the very people who are supposed to love you unconditionally failed you, hiding behind their Bible.  (You can be gay and be a Christian, don't forget that baby!)

Please sweet child, hear me when I say:

YOU are perfect!
YOU are brave!
YOU are strong!
YOU are loved beyond measure!
YOU matter!

As a mother I worry about you, about your safety, and your future.  It's hard to be a teenager navigating life.  It's even harder when you have to worry about where you are going to sleep, how you are going to eat, and who your champions in life are.  Please reach out to someone local to help you navigate this current chapter.  Do you have additional family members, a friend, a teacher, a clergy member?  I pray you do.....

Remember:  Someone judging you does NOT define you.  It defines them!

Your "Virtual Mommas" believe in you, love you, want you to succeed, and are here if you need a hug or shoulder to lean on.

Be strong.
Believe in God.
Love yourself.
You are worth it!

Wrapping you in love and lifting you up in prayer,

Your Virtual Momma

PS:  Reach back out to me and let me know how you are doing.  Don't make your Virtual Momma worry!  ;)

Monday, September 3, 2018

Back in the saddle again....

I complained about having horses, and not wanting to own them again after we canceled the lease on our last show horse and re-homed our beloved retired mare, and I was steadfast on NOT owning another one, because if I’m being honest the magic of horses left me when Pony Girl and I parted ways.  Horses were such a part of that life: from the horse shows, the laughter in the barn at night when family and friends were just hanging out, to the tender moments spent holding hands when tucking the barn in for the night, it was a simple yet amazing life.  I felt safe there, and I found myself trusting my heart with a woman AND her horses.  After it ended I could have cared less if I ever saw another horse, let alone rode one.  It was easier to guard my heart, block any feelings from resurfacing, and attempt to forget that that life ever existed.

The harder I kept dragging my feet and swearing off horses though, the more our daughter kept horses in the forefront of every family conversation.  She continually kept pursuing her dream of owning another horse, and I was not blind to the fact the kid needed a horse like most people need air to breathe, and for Christmas, Kay and I bought her a mare that she had been riding through her high-school riding team.

I purposely have not gotten attached to this horse, and paired with the fact she is a little quirky and not overly snuggily, it has been easy to not pay attention or fall in love with her.  I was so burnt on horses and the lifestyle that comes along with them that I had shut myself off.  It was a defense to protect myself from remembering and ever walking that walk again.

What I failed to remember was how much I missed having horses in my life.  I forgot I actually love to ride, and I love the convivial atmosphere that come along with having a barn family, a group of people who become family through a mutual love of horses.  Last night was full of fun and laughter!  Surrounded by our barn family, I got back in the saddle again riding Katzya’s horse and rode for the 3rd and longest time I have ridden in 21 months.  It was so wonderful to ride and just feel life melt away. Enveloped in laughter, Kay rode for the first time in 25 years, the barn owner made a rare appearance on a horse, and Katzya and her friend loved cheering us on.  It was a night filled with laughter, friends, fun and horses. 

Being back in the saddle and rediscovering the magic felt so good, even better than I remember!

Sunday, August 19, 2018

Bigots, Breakfast, and Being Overly-Black......

This morning started off like every other morning for me.

I woke up under-caffeinated with my body feeling like it needed about 2 more hours of sleep and my hair out of control.  You see, every morning for the last 40 years, 4 months and 18 days, I have awoken looking like Ronald McDonald and Kramer had a love child.  Now, in my formative years,  I hated this about myself, however as I have grown into an adult I have learned to accept and love my crazy locks in all their glory.  Even in the morning!

Usually, if I want to go somewhere quickly in the morning, I throw on a hat, because I am not and never will be, one of those girls who can quickly throw my hair up in a "messy bun" or pony tail.  (My hair doesn't roll like that....)  Currently though, my hair is in a God awful state of re-growth.  It's too short to pull back, but it looks hideous under a ball cap. 

So, this morning, I wrapped my head in a scarf, complimented myself on my cuteness, grabbed my wallet and my dog, and set off to fetch breakfast and a Sunday paper for my wife. 

Quickly, I ran into the gas station, grabbed the requested Sunday newspaper, got in line behind a guy who was paying for whatever he was paying for.  (Honestly, I can't say I was really paying attention to him, I was in a hurry to get to my next destination: McDonald's.  I needed my morning Coke!)  That guy finished up paying, spun around, looked me up and down and quickly blurted out the words:  "Well, you look overly-black this morning!" 

Now, I'm sure if this man knew me, knew I was under-caffeinated, and knew how hard I work to engage a mouth filter I don't possess, he would have kept his mouth shut, but he didn't.....

And this folks is how I nearly committed homicide before 10 am.....

Me, still shocked:  "I'm sorry?  Did you just say I looked overly-black?!  And what does being black look like exactly?"  (I really wanted to hear this explanation....)

Him:  "Yes.  With that thing on your head, you look black."

Me:  "My scarf?!  My scarf makes me look "overly-black"?!"

Him:  "Well, yeah.  Didn't you look in the mirror this morning?!"

Me, pointing to my head:  "Actually, I DID look in the mirror, and I thought I looked like your average human, although cuter, because in case you haven't noticed, this scarf is on point!"

Him:  "Well, you might want to look again."

And this is when I nearly lost my shit....

Me:  "Question for you, did you happen to see the bigot looking back at you in the mirror this morning?"

Him, cockily chuckling:  "Oh, so now I'm a bigot?  What does that look like exactly?!"

Me:  "Well, I wasn't sure what a bigot would look like until now, but after looking at you I realize a racist bigot looks exactly as I thought one would look.  Like an idiot!  Because only an idiot would spew the stupidity you're spewing while attempting to make a fashion statement by pulling his white tube socks all the way up to his knees when wearing sandals!

Enough said.

Thursday, August 2, 2018

A non-rational purchase....

Rarely do my purchases make any sense, and I am used to that.  In fact, I feel it's one of my most endearing qualities!  So, when I came home a month ago completely in love with this horse I met, it made ALL the sense in the world to me as to why I should own him.  Kay, being the more logical one of us, immediately said "No."  Perhaps Kay was right.  (Did I just say that on a public forum?!)  However, my heart just couldn't quit thinking about this guy. 

Several days ago, Kay an I were in the car talking about what she could get me for Christmas and I quickly replied:  "That horse." 
I was dismissed.

Then the conversation turned to what I wanted for our up coming anniversary and I quickly replied:  "That horse." 

 We discussed how the timing wasn't right currently, etc... and the next thing I know we were at the horse barn "looking" at him.  Before we left the barn, we felt pretty secure about adding this guy to our family. 

Now, if I'm thinking with my logical brain, this horse makes NO sense.  He is 5 years old, has only been gelded very recently, and has had absolutely no training.  My non-logical brain says, he's great minded, exactly what I would want if he was trained, and is giddy with excitement. 

Meet Henry, my favorite non-rational purchase.....

Sunday, July 22, 2018

On relinquishing control and having faith....

I used to have a little plastic rock with the word "Faith" on it.  I'm not sure where I picked up this little piece of plastic, likely it was an impulse buy in the gift shop where I work, and it really was a stupid purchase especially in the eyes of my family.

Who buys a plastic rock?!

I never denied the stupidity of the purchase as it randomly pupped up around the house: pulled out of the dryer, randomly stuffed in a junk drawer, or occasionally being found under the couch if the cats found it before I did.  The little purple rock took on a life of it's own around our house as it became a household joke and familial eye roll.  When I found it, I would scream for all the rest of the household to hear:  "I found my faith!"

If I sit back and reflect on life though, "faith" is like that.  For me it comes and goes, and sometimes it's hard to believe in and even easier to loose.

I admit I'm the queen of trying to manipulate the Universe into getting what I want or think I need.  Pairing this with the fact I'm a self proclaimed "fixer", sometimes I push against the Universe so hard that the Universe has no option but to push back.

However, if I look back I am constantly amazed how situations work themselves out.
How the end results are often better than I could have ever imagined if I just surrender control, stop trying to move a mountain and just have faith.

My dad and I had a relationship in that we both lived our lives, and would come together for dinner, or visit when time allowed or when one of us needed something from the other.  We would talk on the phone every week or so, and I always knew he loved me, but we were both just content living our different lives.  My sister and my father were much closer.  She saw him much more than I did, went places with him, took him to his doctor appointments, and selfishly I was okay with that.  I didn't want to stop living my life to deal with his life and his life choices.

Faced with my dad's illness, the fact my sister was moving out of state, and the realization I was going to be taking care of him pretty much alone, I was pissed.  But, as usual, God knew what he was doing.....

You see, my sister moved out of state because she got married, and it forced my dad and I to have to be together.  Without my sister to provide for him (And she always did a fabulous job!), he had to depend on me, and knowing I was his only option, I had to step up my game.  In the beginning, I was really inconvenienced with the fact  I had to use 144 hours of vacation time to drive him to doctor appointments at the Cleveland Clinic, or all the hours I had to sit while he was sick in the hospital with bouts of pneumonia. meningitis, and other ailments....  (The man was like a cat with 9 lives!)  Or the fact that due to his dementia, he insisted on eating out every night at his favorite restaurants, and I had to foot the bill for this plus keep him out of the nursing home until after 9 pm.

Many times, I would call my mom and cry/scream that this was not fair.  My mom's words of wisdom were always:  " Emmy, this isn't forever.  One day you will be happy you did all this.  And in the end you will know you did everything you had to do to make his life better.  You will see this benefited you just as much as it did him.  Just have faith...."

In the end that is exactly what happened.

If my sister hadn't moved, if I hadn't had to step up my game, I would have missed hundreds of hours of being with my dad, of talking to my dad about everything from his childhood ponies, life with his siblings, his funny antics and the mischief he had gotten into along the way.  He told me secrets I will forever keep, we scouted out the best place to eat chicken wings and completely dominated some rouge trucker at the claw machine game in a Denny's on I-71.  We went to a Christmas Eve church service together, and he spent the night with us, so I got to wake up on Christmas morning with him just like I did when I was a kid.  We binged watched Hallmark movies together and curled up with heavy quilts by the fireplace.  He went the horse barn with us, we made a lot of new friends together, and most importantly we laughed.  We loved.

I've learned a lot this year.
I've learned things seldom turn out the way I plan.
I've learned to accept what is happening in my life right now, and that it's okay to relinquish control.
I've learned to let go, to put the past behind me.
And, I've learned to just have faith that things will fall into place, just like they were meant too....