The Elephant On My Chest

Days like yesterday leave me feeling like someone or something...maybe an elephant...is standing on my chest.  Aside from being emotionally spent, I literally just feel this huge weight.  It's all a horrible cycle.  Clearly I'm not afraid to go above and beyond for Clayton.  Been there, done that.  But at some point I get hopeful that there will just be peace.  And then we find out his kidney it progressively moving in the direction of end stage renal failure.  This was our number one concern since he was in utero.  BUT then he got cancer, his scoliosis got worse, he began having respiratory concerns, etc. and we thought maybe that kidney will keep kicking.  It was doing so well.  And had made it through so much. After all, weren't all those challenges enough?  Couldn't he get a "get out of jail free" pass in the kidney department.  

Of course not.  That would be too easy...and well, easy just wouldn't be our style.

Then after confirming and clarifying things yesterday with the doctors, I am of course thinking of Clayton, but I start thinking of me too.  I lost my social life long ago...about the time Clayton was born.  I've lost touch with my girlfriends from grade school and college.  I rarely ever do anything for me.  No manny-pedis or movie nights or music concerts or football games or casino visits or whatever else folks do for fun these days.  Even gave up my chance of having a career.  And all of that was ok.  I adapted.  I'm a chameleon like that.  I changed to better suit my life with Clayton.  Even building ourselves a small house in the country, getting some chickens and building a dream of being a homesteader.  And I LOVE it.  Every. Single. Bit of it.  It is a life that without Clayton I likely would not have.  Clayton leading me down this path is the biggest blessing...next to him of course.  I LOVE my life and wouldn't trade it.  I relish in the joys of living simply.  I adore learning and practicing lost skills that so many of our grandparents practiced and so many of my generation and our parents have brushed to the side.  I love feeding my chickens every morning, checking for fresh eggs, watching my chickens (hilarious), watching the pup and the rooster play ( oh yes...even more hilarious), planning my gardens, canning, making my own homemade peanut butter or almond butter or bone broths, finding new ways to cook whole foods, learning to process our own meat, learning to make the most of the land we live on, respecting the land we live on...all of it.  It is my life.  I love it.  I am beyond blessed to have it.  I wouldn't have it any other way.  I am truly learning to embrace what is important and disregard what really doesn't matter.  Why this spill about how I love my simple life?

Because when learning what is coming, I think about Clayton yes...But then I think about me.  I think about again being ripped away from this life I have built and being once again displaced in another city, our family again split up and ripped away from my lovely little life I love so much.  

And then I feel like a jackass for being so selfish to think about myself that way.  And then I justify it to myself saying better to think selfishly than act selfishly.  And then I just feel like a jackass again for trying to justify my selfishness to myself at all.  And it just becomes this anxiety ridden cycle of feeling devastated, selfish, guilty.

For some reason I just feel like we've been through enough to the point that there should be an end to it all and yet there never is.  It just keeps going and going.  And I'm not talking about little things like doctor visits, labs or even trips to dallas.  I'm talking about big things.  It was major kidney stuff when he was born and for his whole first year and a half.  Then cancer right after his 3rd birthday.  Then a massive orthopedic undertaking right before his 5th birthday and now right after his 6th birthday we are back to major kidney stuff.  And of course there are the autism challenges and respiratory issues amidst all of the above.  This all takes a toll on us as a family, but there is also a huge toll it takes on each of us as individuals.  It does take a lot of effort to be a family when there is so much time to grow apart being strewn out with hundreds of miles between us for extended periods of time, but I think there is also a question of the effort it takes to stay sane when you constantly feel like you are losing yourself to having to fight another health battle.  We keep trying to move forward together and individually and we keep getting set back.  It's like George going back to school to finish his four year degree.  He just got started this fall and now this.  But we are going to press on and try like hec not to let this deter his end goal.  It's hard though.  When there is constantly something working against you trying to hold things together or find progress amidst the chaos, keeping your sanity even partially intact seems nearly impossible.  And I've said before it can be hard watching others move forward in their lives when you feel like your just stuck all the time.  It feels like crap, if we didn't have our challenges we could be doing those things to.  But we do, so we can't.

I try like mad to think of the wonderful blessings we have.  Like our house.  That is a HUGE accomplishment.  George is just over 30 and me just under 30 and we have already built our own house ourselves.  That is massive.  And having had the timing work out so perfectly that we had the opportunity to build it between our ortho problems and our kidney problems is such a blessing.  We also got Clayton a puppy in July.  Without siblings and much socialization, he desperately needed a companion.  And the timing between getting in the house and our kidney problems again worked out to be such a blessing having given us time to have her go through her puppy months with me and Clayton around all the time and get her house trained before she is left alone with George all the time while Clayton and I are away.  So we have gotten to move forward is some ways and I just keep trying to think of those and stay positive.  And appreciative.

This non-stop fight-for-your life roller coaster we seem to be on often just leaves us feeling like everything is closing in.  Like we can't do anything right and are constantly failing.  Like we are very alone.  Like we are selfish as individuals for thinking of ourselves and our wants when Clayton's life is all that matters.  Like there is no end. No peace.  And we can't really do anything about it.  Elephant on my chest or pains because my heart hurts...doesn't really matter.  We have to keep waking up every day, putting on our big kid underpants and saying (with varying levels of confidence) "We got this".

Always looking for the light through the darkness...