The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Wednesday, January 13, 2021

Perception and Reality.

 I can't read minds. I can only go by what I see, and sometimes, what I feel.  But often people can have a totally different view of you than you think they do - especially if communication between the two of you is lacking.

Life is funny. It can sadden and humble you pretty fast and quick.  I know I have to change a lot of things about myself - and I'm working on it.  I always thought at heart I was a pretty decent person. Not perfect, but a person who was trying to be better.  We all could use a little more work, though, couldn't we?

I don't know if I will ever quite trust people fully again.  And, honestly, at this point in my life I don't care. I don't need to trust anyone else ever again.  I just need to do the best I can for me and my kids.

Monday, January 11, 2021

Memories of Vacations Past

 I saw an old picture from the first time I ever visited Orlando, FL and went to Walt Disney World. The time stamp on the photo reminded me that it was six years ago today. I can't believe that much time has flown by. That was a very special trip for me. We'd always wanted to go; a few years before, when I was on dialysis, my wife set up a trip for us that fell through.  So actually going on a vacation somewhere was really special for us.

I am flooded with memories and emotions about that trip, and the ensuing months. It was a very special time in my life, filled with a lot of joy, happiness, excitement... and love. 2020 being the year of covid for the world meant no vacations for anyone. I really need a get away. It's been a tough time.  Just want to go somewhere warm, relax and maybe find some happiness inside me again.

Wednesday, January 6, 2021

Fourteen Footsteps

 I walk down the hallway and take a left into the kids room; it looks decidedly different than five years ago we we eagerly redecorated it with carefully chosen art and paint for the walls.  The crib was on the right; it was waiting to hold our little boy who was to arrive in December (and arrive he did!).  And when we found out we were having a girl who'd arrive 16 months after her brother, we painted two walls pink, and put up the very carefully curated art for her arrival.  My wife was really into finding the right prints to hang on the wall. She got several which I am still very much in love with.  One still hangs on the wall - the rest are gone now, hanging on the wall in my children's bedroom over at their Mother's.  The room is different now; I got the kids some bunk beds earlier this year - made by a local guy out of some huge pieces of wood.  It's nice, and sits in one corner.  It's amazing how quickly the crib, diaper and bottle stages passed. My kids are walking, talking little people now. And it's bedtime tonight; we go in their room, and I get their pajamas ready.  

My daughter is insistent on putting on her own PJs.  She's three; she'll be four in a few months.  My son is five, and entirely capable of putting on his own PJs, but never turns down my help in putting them on.  This secretly makes me happy - I like to feel I'm still useful that way to him.  He probably never thinks about it, but I've been dressing him since the day he was born.  My wife picked out a lot of the kids clothes; she's good at that. Even when they were little, she used her keen eye and fashion sense to make even the most mundane kids clothes feel nice.  That was special. I don't know if I ever told her that or how much I appreciated that. I feel like I did, but who knows. I don't know much about what I did right or wrong any more anyway.  But the kids are in their PJs, I've gotten them water for bed, and given them their "bedtime medicine" (melotonin gummies) My son asks for a bedtime story, so I improvise a little story about him and his sister vising some dinosaurs.  They get a kick out it. I do funny voices for a T-Rex and I curl my arms up really small to imitate the T-Rex's tiny flailing upper appendages.  They giggle.  I give them hugs and kisses, tuck them in, turn on the star night light, and close the door.

I walk back down the hall - dark, cold, alone.  I used to like doing this as a family - once upon a time, it went that way with all four of us.  Now that their mother and I are separated, it's just me and I'm trying to do the best job I can - to send them off to sleep, warm, comfortable, safe and loved.  And they don't know how much I'm hurting inside the whole time - how I feel like half a person, and how this isn't the life I wished for when I became a parent.  But these things happen, and we have to proceed the best we can.  When I have the kids, we facetime their mother before bed, and they say their goodnights.  When she has them, she facetimes me and I say goodnight to the kids. At least we have this in  our modern world.  But for me, personally, for my end of it - I always loved when we carefully shut the door behind us, and walked down the hall to go relax and sit in the family room. Usually let the day kind of slough off us - watch some Netflix or whatever, chit chat. Mostly as we walked down the hall, I'd reflect on how lucky I was and how much I loved those little kids, and her for making them possible.  So, yeah, now that walk is so lonely. I never realized how 14 steps could just been the loneliest footsteps anyone could take and that your heart would break a million times over with each one.  But here I am. Learning yet another lesson in life - I'm glad to learn, adapt and get better, but I wish this one didn't hurt so fucking bad.

Friday, January 1, 2021

Eighteen Years Ago

 18 years ago, I was wheeled into the ER with a BP of 220/180 and a loss of vision. I didn't know what was wrong with me. I'd been feeling sick for a while, but I just wasn't sure. So when I was told after numerous tests that I had End Stage Kidney Failure and that I'd need dialysis for the rest of my life, or I could eventually get a kidney transplant, I was... floored.

I was 24. My interests were playing guitar, writing music, hanging out and finishing up college. I wasn't prepared for this life.

But, I've lived it. For 18 years.  I've endured years of dialysis, two failed kidney transplants and now a third which we all have great hope for.

What a strange life I've lived.

Yeah. I'm sad and lonely this New Years Eve.  It's the first I have spent alone in 14 years.  Hopefully things will get better. I've been down before on New Years.. but not out.

I'm not out yet. The world is still mine.