Sometimes when
the world seems out to get you, all you have to do is take a moment,
breathe, and look at what you do have, and then smile. It could be
worse, right? Believe me, I know there are some more tough times
ahead for us but I'm choosing today to look on the brighter side of
things. I have too. Even my depression med's aren't helping much
these days.
This morning, I
put Noah in his walker (no, he isn't walking. He sits there) and he
just looked up at me and there was this moment where he just stared
at me with a slight smile and while I was telling him “I love you”
over and over again, it was like he was just taking it all in and
living “in the moment” with me. That definitely started off my
day just right. I'm still smiling about it. If anything, that
little boy knows he is loved! It's those little moments that I love
most. The moments just between him and I and those sweet moments
just between my daughter and I too. Her smile and generosity to
others make me smile everyday as well. I'm pretty darn lucky.
Being in this
state of worry, frustration with doctors, financial stress, etc, it
is hard to get up in the morning with a spring in your step. After I
get the kids fed, changed, and into some activity, I finally sit down
with my coffee, at the computer and either job hunt, search for more
information on Lowe Syndrome, apply for business grants to get my
company up and running, or if I have something to say, I'll write
another blog post, like today. Today, I need to clean. I've let
things to for a week now and it's time to fight this state I'm in and
just get it done. I have other more interesting things I'd rather be
doing, but I do need to care for my family and that means keeping a
clean house. Which is another reason lately, I've wanted to simplify
my life and that means the next time we do end up in another house, I
actually want a smaller house, or at least a one-story. It doesn't
take away from the fact I still love the house I'm in but I just
don't think we can stay in this house much longer. We just can't
afford it.
I've been
looking at the schedule for the rest of the month today. I'm sure
I'll hear by phone about Noah's EEG and Head CT. I don't have an
appointment with the Neurologist to discuss those results until
September 20, which...if they both came back normal, I won't mind.
However, if there is something to be discussed regarding either test,
I will make them see me sooner. I'm sick of this waiting. I
understand there are other patients but I don't understand why I
would have to wait so long to talk about his results to the EEG and
the Head CT. Another reason, I felt I had better care for Noah with
Duke. I can't speak to all the medical entities in N.C. but it did
feel like the patient was number one at Duke and seeing doctors and
quickly, wasn't a problem. I didn't have to be that “annoying mom”
to make things happen faster or feel like I'm getting heard without
condescending remarks from a doctor.
On a lighter
note, I made my first jewelry sale today. I'm so excited! Anything
I make from my jewelry will also go toward Noah's medical care. I've
been thinking about starting a website to sell my jewelry and explain
that proceeds will go to my son Noah. But, that's for when I have
some extra time to do so.
I shall go for
now. I need to clean and go over some of Noah's PT exercises. He
always seems to impress Ms. Angela, so we need to keep that momentum
going!
Have a great day
everyone.
Jenna