the hardest post to write

I spent a long time debating if I would ever come back to this blog.  A large part of me said no, that I would just use my paper journal and leave snippets of my life on my tumblr.  But then I saw Holidailes starting up again via a post on Facebook and I thought how I have done Holidailies for many years now.  Perhaps it was tell me to come back to my blog… I don’t know.  I rarely get on Facebook these days, it seems strange I even saw the reminder.

So then I have asked myself, how do I start this post. How do I explain what has happened… My last post here, I was declaring my intent to the universe.  Guess what?  Sometimes you can declare your intent to the universe and the universe answers back, “No.”

The universe didn’t just answer back no, it crushed my life.  Our lives.

See everything was going so well…. this past winter we had moved into this bigger house, Ki’s business started really taking off, money started flowing in, and there it was… August I was going to go and start the work up for fertility shit… we were finally going to “officially” try for our baby.  A couple weeks before the doctor appointment was to happen though I laid on the couch and said “every thing feels weird lately”.  He agreed and quipped “yeah like deciding to have a baby.”  In my heart I felt it and in my head I said “we aren’t going to have a baby.”

You see… I am not going to go back over the whole story.  Just this much of the back story has made my heart ache enough.  This is the only thing that currently matters now.  We discovered that my husband has Alpha 1 Antitrypsin Deficiency.  It is genetically based, meaning he got it because his mom and dad were both carries.  In Alpha 1, the liver either fails to produce the antitrypsin protein or produces screwed up copies of if that get trapped in the liver (I know, you probably didn’t even know your body made this protein, I know I didn’t).  In the grand majority of cases, this causes severe lung damage of the course of one’s life, usually resulting in COPD.  The protein protects the lungs.  They have a protein infusion therapy for those affected in this way and can essentially stop further damage, although if you’ve already got pretty severe COPD it probably still isn’t extremely comforting.  It sucks when it effects the lungs but things can get worse,…like..

In a small number of cases, the protein gets stuck in the liver and damages it.  Scar tissue builds up and the liver begins to fail.  The only measure that can be taken is a liver transplant.

See… this is where we are.  My husband needs a liver transplant.  I live with this reality everyday and still writing about it can make it hard to breathe.  Most people… they go until they are 50… 60 years old until they find out that Alpha 1 has caused this damage.  I find myself asking nearly every day… if it it had to happen, why didn’t we get another 25-30 years like most people?  Why is this happening to him in his 30s?  And I’m not even 30 yet… how can my husband need a liver transplant?  What will our futures be like?  And I am scared to death of losing him.

My new normal is weird because he was hospitalized again at the beginning of the month and we have a new companion in our lives, a chest catheter that I help him drain every day.  It’s strange how normal it has suddenly become, but on days when I am already irritated, everything about the chest catheter freaks me out and I feel myself become enraged at it because it is a reminder of how fucked up everything is.

At the beginning of the new year we will hopefully begin steps towards getting him on a transplant list.  There’s a lot of worries.  Especially financial ones.  If I can hope that those will work out for the best then I am at least reminded that we live in the part of the country where the wait lists for donated livers is the shortest.  We live near a medical facility that boasts some of the highest survival rates and shortest wait times in the country for livers.

There is a reminder that there is hope.  There are things that are completely hopeless.  We are not out of hope yet.  I pray we never are.

I haven’t talked about this on Facebook yet because I just haven’t been ready. I don’t know how to make that post yet.  Of course there are people who know among our close friends and family, but publicly explaining all this in the context of Facebook… yeah I’ll reserve that for another time.

For a while, I struggled.  I would envision the life we were supposed to have been leading.  Maybe I would be pregnant already right now, who knows.  It fucked with me for a while, but now… now it is like it didn’t ever exist, it was a life somebody else lived.  I don’t know it anymore.  It comes back sometimes, as grief… so close to have absolutely everything ripped away but I guess I still believe everything happens for a reason.  And that some things aren’t meant to be.

But I guess when the person you love most is facing a life threatening illness it puts a lot of things into perspective.  Like realizing no physical thing could ever replace who they are and what they mean to you in life.  That you could spend the rest of your days in a shack eating a tin of beans as long as they were by your side.  And mourning for souls that never existed is ridiculous when faced with losing one that has been with your half your life.