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.