Couch time (aka...therapy)

This is strictly a cathartic post and it's going to be long...a mini novel. I am writing it just to sort things out for myself; vent... basically, I'm having a pity party for myself.  Maybe it's not exactly a pity party but I am pretty stressed out and tired tonight and I am so tired of everything in my life creating a bind of complication.  So, my inner turmoil probably won't be that interesting to anyone so feel free to wait for a more exciting post like iron infusions coming up. That will surely be exciting.

So, I hate Shwachman Diamond Syndrome.  I HATE it.  I hate that it has the gall to make me feel like I can never relax.  I always have to be on my game.  I hate that I have to keep everyone together emotionally and physically.  There is never a break. I hate that the threat of losing my kids is always, every single day of my life looming over my head.  If I'm not worrying about stupid bone marrow failure and the number of abnormal cells invading their innocent, unsuspecting bodies, I am worrying about the rafting trip; what if he drowns, what if he doesn't wear a life jacket.  The visit to the skate park to master a skateboard or bmx bike and see how high they can fly off a jump without a helmet because they that's not cool but apparently being a vegetable is.  I worry about the trip with friends to the city, a night camping, swimming, name it, these days I figure any activity has the potential to kill them. They hear me say "No", a lot but in the end, I give in because I know they are all activities that are part of being normal but the whole time they are gone, I can hardly concentrate on anything.

People ask me to do something and I often say 'I can't' if it means leaving my kids.  They think I have toddlers or something and when they ask and I tell them they are 20, 18 and 14, I know what they are thinking; "She can't leave a 20 year old alone?" 

It's hard for people looking in to appreciate what it really means for me to let them out of my sight.  They are my life.  They are the best part of my life and I don't want to waste one minute when I could be enjoying them because I don't know how much longer I will have with them.  I hope years, and years but what if it's not?  I can't get past the what ifs. I hate regret and don't want any part of it.

I don't know if it comes with the territory of chronic illness or if it's because I'm single and that makes me vulnerable to lonliness.  Who knows.  All I know is it's becoming harder and harder especially the more their bodies start wearing out. 

Today I had a job interview.  I was excited at the thought of being self sufficient again, to at least have enough to cover the bills and bare necessities.  The company loved me.  They loved my application answers.  When I arrived I had to take a proficiency test and I passed that with 100%.  The guy couldn't believe it.  In all the 9 years he has been doing this, only one other person passed with 100.  He offered me the job after a 2 hour interview. 

Before he got too far into it, he said the pay was only $8.00 an hour.  I can't live on that wage.  The first 81 hours of work would just pay for my health insurance.  The next 81 hours would cover my mortgage payment and that's a month's worth of work right there and I haven't been able to make my car payment, my car or house insurance, my phone bill or internet, medical bills not covered, food, gas and now I'm commuting an hour each day so that means a huge jump in gas expenses, clothing, Christmas presents....the list goes on.  Not only that, now I'm tied up 40 hours a week and if I have to take time off for doctor visits, transfusions, etc, then I'm hooped. 

I am overwhelmed when I think about leaving my kids for this amount of time.  I'm angry that I can't just be a mom! I'm angry that divorce does this to a person who just wants to be a mom.  It's not fair...oh ya, I forgot that my life has never reflected anything resembling fairness.  I am sick at the thought of having to juggle work and the kids health problems.  I will always be trying to make up the hours like I did when I had a real job.  I started work at 4:30 am just so I could take the time to get them to their appointments.  I would work at home until midnight and sleep for 3.5 hours and do it again.  I did this day in and day out for 4 years!  The thought of going back to this makes me want to...well, let's just say I can't even imagine it. 

I won't be able to continue with my physical therapy which has helped out so much.  It's made the pain from my arthritis bearable. 

So, after going through with this prospective employer all the reasons I might just be a big pain of an employee because of needing time off to take care of the kids, he still wants me.  He loves me and to be honest, I have never really felt that valued by anyone before.  I felt proud of myself that I passed that stupid proficiency test.  It felt good to think that a total stranger saw a purpose in me.  My self esteem has taken some huge hits this decade and contrary to how I may act at times, I really can't see any value in myself.   It would be such an interesting job and even exciting maybe.  I would be their online marketing person and work in the test kitchen trying out new recipes for their food mixes.  The owner of the company and the others I met today were so kind and had high morals and integrity. 

I also found out today that the CEO of the hospital has been so impressed with my work so far on the labor and delivery remodel and infusion therapy that she mentioned that she wouldn't mind hiring me there.  It's all sort of hearsay at this point but I think I would love that.  Space planning and designing makes me so happy!  I could do it all day long.  I love it, it energizes me and that's important.  I've been trying to build my design business and it would be sad to give up what I love just because I need a job. 

So, I have no idea what I will do.  The employer from my interview today is calling me in the morning for an answer and I have no idea what to say.  It's tearing me apart. Ugh...SDS just makes everything harder.


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