Thursday, October 19, 2017

Just a Bit of How Things Are…

I know we have been quite … Parker has not been feeling well at all.  As a mom, it is incredibly hard to watch your child struggle day after day.  I keep thinking, tomorrow will be better…we are going on two really rough weeks with loads of inflammation and some adrenal issues.  His adrenal insufficiency can be pretty scary and every time this starts up, I feel my heart squeeze so tight it hurts.  We came so close to losing him with one of his adrenal crisis episodes and I tell myself we are better equipped with both knowledge and meds now, but I still get scared. 

Parker is now taking a stress dose for his adrenal insufficiency because he might also be fighting a virus.  And he is also taking meds for his pain and inflammation.  During these last 2 weeks, he has barely been out of bed.  The balance of helping him move so he doesn’t hurt more from being stiff, and the balance of not moving too much that it makes things worse, is quite delicate.  And I admit, I am not sure if we will ever master that.

It’s been hard for me to write blogs lately…I have wanted to allow Parker to tell his own story.  But when Kristen was here for her extended stay, she and Parker told me that a mom’s perspective is also valuable and they encouraged me to blog more.  The thing is, it makes everything so “real”…and I keep thinking and praying that Parker will get better…in some ways he has but in other ways, well… It is just our reality. 

So I cry in private on the really hard days; and I try as hard as I can to be “normal”…going to work, helping others, being as social as I can, and sometimes just being quiet and to myself.  On the “good days”…I just want to do everything we can fit in because I want so badly for Parker to experience JOY.  Of course, there seems to always be a price to pay for joyful interludes. 

Having a child with chronic illness can be quite lonely…because it is chronic, conversations are hard.  Parties are harder… I don’t know if other moms have these moments too…where you stand in the middle of a room full of people in a buzz, usually for a joyful gathering and you feel totally alone.  It is the weirdest thing ever.  I don’t know how to begin conversations anymore.  And I don’t think people know how to converse with me.  And sometimes, I avoid … because it is easier, less exhausting.  It’s like I am holding onto my reserves.  Just this week, someone asked about Parker and when I started explaining his surgery it turned into “oh, I have arthritis too”….and I got to hear all about how this older woman had it so hard.   Then, I felt horrible because I think she has no idea how her comments hurt …but that is just it, so many have no idea.

And let me tell you…all you moms with young ones with severe chronic JA…well, when 18 hits…watch out.  My world is a bit upside down.  18 makes you reassess, plan for the future that you were certainly not prepared for, and oh the paperwork…  I know not all kids are as severe as Parker, but whoa…this 18 years old stuff is something:  Do we do permanent disability?  Then there is Medicaid (or will there be…)?  Will he live on his own; or should we get a home with a separate apartment or mother-in-law suite? How long should I work?  Will he work?  Will I run out of sick leave?  Will we ever take non-arthritis related trips/vacations?  Do we remove his port and put a new one in or not?

And then I remind myself…I can only do what I can do in a day.  So, we do what is needed in the here and now:  Like buying two pairs of shoes, because one foot needs a nine and the other needs an 11 due to the ankle/foot orthotic…Or bringing the puppy up on the bed for some Parker cuddle time and a joyful moment…And making a yummy snack of yogurt, granola, and berries because Parker will eat that.  So I admit, these last 2 weeks have been really hard and we could really use some better days in the near future.

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