Bleeding at the keyboard

I would rather not dream, than have bad dreams.  It’s been quite the roller coaster of emotions, the last several weeks. 

What is “normal”, anymore?  There isn’t one and there wasn’t one.  Things evolve, circumstances change, life shifts.  We have been staying at HomeHome since Monday.  Today is Thursday.  Curtis had an Ortho exam on Monday and an eye exam on Tuesday, Gregory had labs on Wednesday.  We were planning on heading back out to The Water Retreat after labs.  Well…….  my car decided to call it quits.  It’s currently at the dealer, getting fixed up. 

Since we have been at HomeHome for a little longer than before, it’s been incredibly emotional, for me.  The house is far from ready for us to move back into and I want nothing more than to be able to settle.  It’s been nearly 18 months of transitory living.  Living out of suitcases, boxes and hospital rooms, Ronald McDonald rooms and apartment.  My heart is aching to be HomeHome.  To unpack every last item, put them in their place.  To have Gregory’s belongings on shelves, containers and a toy box.  Not cardboard boxes and pink puke buckets. 

Being HomeHome has also reminded me of how isolated and alone I’ve become.  I find myself questioning my existence BEFORE we met cancer.  The people I used to have in my life have all but disappeared.  I  know it’s summer and everyone is incredibly busy.  Life marches on and we’ve been in a holding pattern.  I look around me and wonder, Who’s left?  I feel out of control and dependent on everyone else, for everything.  Yes, I’m still managing quite a bit, parenting, general living and Gregory’s medical needs.  There is just nothing that I have any control over.  Not that there ever really was, it was all an illusion.  The hardest part is the financial aspect.  I  have not been working since May of 2009.  Not having that little bit of independence is sometimes debilitating.  I  have to rely on everyone else for my financial well being.  Curtis and AnnMarie and also experiencing some adjustment woes.  They had been splitting their time between Daddy and Nana & Papa’s.  Now that they are with me, full-time, it’s getting used to the word “No”.  It’s been hard on all of us.  

When we left for Seattle, I had visions of our return to HomeHome.  Don’t ask me where this came from, but I  e-nvisioned us coming HomeHome to a freshly remodeled, organized and pristine home.  There is no one to blame for that not being the case.  Life continues with it’s reponsibilites.  You don’t get a free pass, just because you could use one.  I’ve been fighting with this vision and have been trying to surrender to the fact that it’s just not going to happen.  We will be returning HomeHome without the house being complete.  Which is OK.  I just want someone to wave a Magic Wand and for it all to be done.  Not gonna happen.  Surrendering to the reality is the best course.  I’m so tired of surrendering, though.  Tired of telling myself we are doing the best that we can and feeling like I am falling so short.  Tired of navigating the land mines that have been laid, from this experience.  I do not regret ANY of the decisions we have made.  No matter what choices were made, there would still be fall-out.  We would still be picking up the pieces and trying to repair what has been broken.  Broken is how I feel.  Badly in need of a tune-up.  Time is the only thing that will begin to set me right.  Getting up in the morning to do it all over again.  Making mistakes, setting boundaries, settling sibling disputes, navigating Gregory’s needs, trying to find our way together. 

Curtis had his eye exam on Tuesday.  I knew he needed his glasses, but cancer got in the way and he’s been without them for quite a while.  His right eye is nearly perfect.  Really doesn’t need any correction.  When his right eye was covered and he was asked to read the chart, the tech had to keep moving the letters to larger and larger letters.  Finally, Curtis couldn’t even read the Big E.  It absolutely floored me.  I had no idea his vision was that bad.  Once the realization of what that meant for him, I lost it.  Started crying as he was being examined.  I felt so bad that he has been compensating.  His right eye has been doing all the work and he has not complained even once.  He may not even realize that his vision shouldn’t be that way.  He never has headaches and he does a ton of work with his eyes.  It’s mind boggling how well he has compensated.  We went to ShopKo and he picked out his own glasses.  Blue.  He insisted they be blue.  Can’t wait for that moment when he puts them on and realizes what he’s been missing out on.  I just hope that he doesn’t get headaches or eye strain as he adjusts to being able to see properly.  His orthodontist appointment went as expected.  He has at least six impacted teeth, including his eye teeth and the corresponding teeth on the bottom.  The ortho wants to remove four permanent teeth and he will be in braces for about 2 1/2 years.  Curtis did fantastic at this appointment, too.  The kid is growing up so nicely.  I also really liked the orthodontist.  Considering how much time we will be spending there, it nice that it felt right. 

AnnMarie has her first appointment with a female doctor, next week.  We have a lot to discuss.  Gregory gets to visit his “regular” doctor the same day and begin his re-vaccinations.  We will be seeing the same doc that Gregory saw at diagnosis.  It will be the first time we have seen him, since then.  Gregory has his Oncology appointment on Wednesday and The Big One’s see the dentist on Thursday to get their fillings taken care of.  I’m trying to crank this all out before school starts so we have a clearer schedule.

Have not hear back, yet, on Gregory’s labs from Wednesday.  I expect a call sometime today.  He has been stable.  It’s the best we can hope for.  We are trying to enjoy every bit of these glorious summer days.  Once school begins, all bets are off.  There always seems to be some kind of bug going around at the beginning of the school year.  Once it passes, we are heading into cold/flu season.  Getting through this school year is going to take some fancy footwork.  Gregory is still immunocomprimised, which leaves him at risk of everything.  I had a dream last week, that Gregory had Epstein Barr Virus.  Which is the pre-cursor to Mononucleosis.  Mono is one tough beast and lasts for MONTHS.  It then remains in your body and can reactivate.  EBV is also the virus that they thought he had, prior to diagnosis.  JMML mimics EBV.  The nightmares, fears and demons are never far off.  I treat Gregory’s health with kid gloves, only because we have to.  It’s been a good plan of action, so far, and I  don’t feel the need to change what’s working.  He’s not isolated or living half a life, just extra precautions.

The RugRats are getting ready to wake up.  ‘Til later, gotta jet.


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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