Wow oh wow! The last week sure has been
a total whirlwind for us. I've experienced every emotion you can
imagine lately. I've been happy, stressed, worried, overjoyed,
exhausted, exhilarated, thrilled, amazed, humbled, glad, and the list
goes on and on. My brain is churning with thoughts and emotions
lately. Let's see if I can sort some of them out.
The big news is...we are moved! Today
marks the 8th day Colby and I have been in our spacious,
well-lit, functional, beautiful new home. And yes, I'm a little on
the biased side, it is absolutely beautiful. Sometimes I have to
remind myself this is our new residence! It's like we're on vacation
or house sitting or something. The move went very smoothly. Since we
moved only 3 miles down the road, we were able to take things over
here and there as they were ready, so I tried get packing done ahead
of time. Sorted through drawers and closets and get rid of things we
didn't need. I had 8 people help me Thursday before last move the
first load of big stuff. I had help in setting up my new kitchen.
Friday before last, more packing, moving boxes and some small
furniture. The shelving company that installed Colby's unit came,
uninstalled the shelving, brought it over and put it up in Colby's
new room. Oh my, that sweet boy has soooooo many supplies! Then last
Saturday was the BIG day. We got most everything else out of the
apartment, and most importantly, got Colby's hospital bed moved. Let
me tell you, that was a challenge! I knew it would be. We tried to
keep it as assembled as possible. It took 5 men to move the columns
and motor into the house. But they did it, and Colby and I were able
to spend the first night in our new home last Saturday. Then last
Sunday some of us went back over to the apartment and got every last
item out. At that point, there was no organization, just throw the
crap into boxes and let's get out of here. Are we totally moved in,
unpacked, organized with pictures on the walls and a place for
everything and everything in its place? Don't be ridiculous! Of
course not! Colby has what he needs and that is what's most
important. The rest can happen slowly, which it is. Seems like daily
we get a couple more boxes unpacked, figure out better logistics for
something, etc. Time to get ready for the holidays you know! Colby
and I are hosting Thanksgiving and I can't wait to have my family
here to share our new home. I might be serving turkey from the deli
sandwiches and Stove Top. I'll figure out something! Having the
family here will be so much easier on Colby. I feel thankful for
every day I have with Colby, my family and friends, but of course
this year will be extra special for us here in the new abode. I
turned in the apartment keys last Thursday, and man, that was an
excellent feeling. So long old, cramped, dim, yucky apartment. Sure
won't miss you one bit!
Then came along the green snot and
camera crew! Whaaaaat?! Colby is trying to get sick. No, no, NO!
Could be the change in his environment, could be the change from warm
to cooler weather. Who knows. They had to do an emergency trach
change at school last Wednesday. I left work early to pick Colby and
his one-on-one nurse up after that. And oh yeah, I'm pretty sure I
had a panic attack in the parking garage at work. Those just are no
fun at all. His trach secretions were so thick, dry, almost
nonexistent, and that ain't good. Then the next day, it was like a
switch. Colby's secretions were everywhere! I don't know the last
time I wiped and suctioned the child's nose that much. Secretions
went from thin and clear to thick and yellow, then started seeing
some green and also a tinge of blood in his trach. Time to initiate
sick-kid protocol! Got up through the night and gave him an extra IPV
and CoughAssist treatments. Kept him home from school Friday and took
him to the pediatrician's office. He's doing a round on Omnicef, and
hopefully we've caught this whatever-it-is early. Can't have my sweet
boy sick around the holidays. No, no, NO!
Then I get a call from the couple who
helped us get the house that WAVE3 news wants to come out and do a
Feel Good Friday story on us. About how they helped us get the house,
all the donations we've received, etc. OMG you have got to be kidding
me?! On top of moving and all the details of that, along with Colby
getting sick, a TV station wants to get all up in here and film us?!
At first I made it very clear I didn't want to do it, especially with
Colby not feeling well. But then I figured what the heck. At the very
least I was hoping to bring awareness to SMA. And if we received
extra donations for the house, that would be hunky-dorry, too. So we
did it. Got home from the pediatrician's office Friday and had 3
hours to get the house looking better, get Colby and me “camera
ready.” Holy crap on a cracker, we've been so busy lately! My
advice to you, if you come over anytime soon, would be don't open any
closet doors, as you are at great risk of something falling on your
head for sure. I was slinging stuff in closets like somebody was
paying me to do it! The newsman wanted that “just moved in” look
for the article. Well, no problem there, because we just moved in for
crap's sake. We don't even have TV's hooked up yet. They interviewed
Colby and me, then Nancy and Darrell, the generous, wonderful, sweet,
caring, giving, amazing couple that has helped us not only get this
house, but also all the in's and out's of redoing it. That dude
interviewed me for 30 minutes. I teared up ONE TIME, for about 3
sentences, and of course that was what he chose to use in the piece.
Ugh. Whatever. I'm just glad it's over. I was a nervous wreck.
Yesterday was Colby's D (diagnosis)
day. It was 13 years ago yesterday that I was told Colby probably had
SMA Type I. I was also told he would die by the time he was 2 and
that there was no cure or treatment for his disorder. The shithead
neurologist told us there was no hope and there was nothing we could
do. No matter how hard I try, or no matter what other wonderful
things we have going on at the time, November 14 creeps up every year
and bites me right in the butt. Every emotion you can imagine was in
full force yesterday. I tried to stay busy, tried to think of the
good. But at times those overwhelmingly sad and fearful emotions came
flooding back. Obviously that craphead neurologist (still can't stand
him to this day) didn't know us very well, did he? Within 2 weeks of
Colby's diagnosis, we were scheduled with the wonderful doctors at
Cincinnati Children's, who had options for us instead of
hopelessness. We also met an amazing SMA family here in Kentucky who
lived close. They showed us how to not only survive SMA, but live a
meaningful, happy life in spite of the odds and diagnosis. Colby has
certainly come a long way. For that I'm extremely grateful. I really
don't take anything for granted. Not Colby's health, not my health,
not my parents' health and never-ending love, and not the unwavering
love and support of countless family and friends. Thank you to
everyone who has helped us, loved us, said a prayer for us, and
supported us all these years. We sure keep it interesting, don't we?
Time to inhale, exhale, just breathe, and make the next year the best
one ever. Somehow I just know the months ahead will be fantastic for
Colby and me. Bring it! We'll savor every moment and make many happy
memories in our new home, I'm quite sure. Signing off now – time to
get sweet boy up and ready for the day.
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