This
is a real "Day In The Life" of Silvia C., mother of Nicky, an 8.5 year
old 4th grader with RDEB-HS and a healthy 2 year old, Connor. Silvia
injects a little humor in this 'Day in the Life', as she says,
sometimes, humor gets her through her day.
This particular day was September 6th, 2005, a day after Connor's 2nd
birthday party.
5:15
am Master Connor is making some noises... I am not moving. He goes
back to sleep but I don't. I toss and turn for half an hour but I just
can't get back to sleep.
5:45
am I get up and turn off the alarm. I head for the kitchen. Oh
goodie! There's some leftover coffee from yesterday. I decide I don't
care. I pour it all in one of those giant mugs and put it in the
microwave. While that warms up I make a new pot.
6:00
am I hear a rumor in the darkened hall, it's my husband whispering
if I am okay. I tell him I couldn't sleep and planned to use these quiet
few precious AM minutes to catch up on some work on my computer. He
gives me a little kiss and goes back to bed.
|
7:40 am The School Bus
picks up Nicky
|
7:00 am It's time to get Nicky's stuff ready for school. I go into the
garage and unplug the power chair from the wall. I put Nicky's backpack
behind it and roll it outside toward the front door. I take his iced
water and the spray bottle and put it on the pockets outside of his
backpack.
7:15
am I go into Nicky's room to get him up. Nicky's dad was visiting
and he was sleeping on a mattress on the floor next to him. I unplug the
feeding tube machine from his stomach button and take his diaper off.
Nicky helps me by taking off the dirty Telfa pads I put on his hips for
extra protection and the dirty Vaseline gauze from his hips. I clean his
bottom, replace the Vaseline gauze and the Telfa and put a new diaper on
him. I then put clean socks on his feet, shorts and a T-shirt. He's
tired and hugs his blanket. I tell him he can rest for 5 minutes.
7:30
am I get Nicky in the bathroom and I comb his hair. He tries to
clean his teeth and then goes to sit on the couch. I grab a wet towel
and I gently clean his face.
7:40
am The Bus is here to pick Nicky up. Nicky's dad says his last
goodbyes before he leaves and at the last moment Nicky asks me for his
Nintendo DS. I get it for him and off he goes. We wave goodbye as the
bus pulls away.
7:55
am Nicky's dad says goodbye and leaves, he's going back to Arizona.
8:00
am Connor is up! I go get him in the bedroom and he's still sleepy,
so I put him in his playpen. I turn on the TV to the Teletubbies and I
give him some milk and cookies. Then I remember I am supposed to give
him his antibiotics, so I put the dosage in his milk. I can now get back
to my computer. Today I want to finish answering some emails, do some
work on my websites and maybe if I get a chance, do some graphic work.
8:35
am Connor is fully awake and he's calling me. I take him out of the
playpen and he runs to play with his toys.
|
My Day By The
Numbers
|
Diapers Changed: 7
Cups of Coffee Consumed: 4
TImes I mixed up the kid's names: 7
Messes I cleaned up: 6
Messes I ignored: 16
Emails Written: 48
Kisses Given: 101
Times I went outside to Check the Mail: 3
Times I filled NIcky's milk cup: 7
Times I filled Connor's cup: 13
TV Shows I watched in their entirety: 0
Times I combed my hair today: 0
Slices of Birthday Cake Consumed: 3 |
8:45
am The school calls. Nicky is in pain. His armpits hurt. His AIDE
tells me he's done
nothing
but cry for the past half an hour. I talk to Nicky and he wants to
come home. I tell him I will pick him up, but that when he gets home we
need to change the gauze on his arms, hands and chest so he will feel
better. I tell his AIDE that I am expecting a phone call from a
gentleman from England at 9:00 am and that I could not miss it, and that
I would try to make it quick and be there by 9:30 am at the latest.
8:52
am Connor's laughing... it's the same funny laugh he always has when
he's either taken off the diaper or is trying to. I look and the diaper
is off and he's running around with a naked butt. I laugh, grab him and
put a new diaper on him.
9:00
am The phone rings, it's the English guy. He tells me his company is
interested in making a documentary about Nicky. I've been contacted by
Maury Povich and Inside Edition just in the past 9 months and nothing
happened, so I am not putting my hopes up.
9:15
am I go get Connor to get him dressed and ready to go... he stinks!
Diaper change again. I take off my pajama and throw on a shirt and some
overalls. I put Connor in his car seat and off we go.
9:25
am On my way to the school I can't remember if I combed my hair. I
decide I don't care. How bad can I look? I have a perm anyway.
9:30
am I arrive at school and go to the nurse's office. She calls
Nicky's class. I sign Nicky out and I go wait at the truck. I need to
make sure the A/C is cold by the time Nicky gets in.
9:40
am As soon as Nicky comes out Connor yells 'Tee Tee' (that's how he
calls Nicky). Nicky gets in the car while I am blasting the music of one
of my favorite Italian singers, Eros Ramazzotti. I chat with Nicky's
AIDE for a few minutes about her trip to see the Sequoias while I try to
get the power chair pulled apart to put in the back of the Xterra.
Something goes wrong. The screw that keeps one of the plugs together is
missing and I can't pull it apart. The only thing I have is Nicky's
badge. I squiggle it in there and it seemed to work but the metal part
touches the plug and a huge spark goes off!! I re-plug everything in and
now the chair does not want to turn on at all. GREAT. I am not happy.
|
1:00 pm Nicky is
starting to take the gauze off his fingers.
|
10:00
am We're home. Connor is busy playing with his birthday toys and Nicky
is playing with the DS. I tell him I will give him one hour of rest but
then he has to soak his arms and hands to take the old bandages off.
10:05
am I pour myself a new cup of coffee. It's the fresh stuff! Yummy! I
can't taste the difference.
10:15
am I am back at the computer trying to finish off some graphic work.
Connor comes in with his empty juice cup. I go to the kitchen to fill it
up. Nicky asks me for some milk, so I get him some. Connor seems to be
very content with all his birthday toys today.
10:50
am I get a bucket of warm water ready for Nicky. I don't usually
change bandages on the couch but I just want to make him happy today. I
surround him with towels and give him a cup so he can pour water over
his shoulders. How Long? I ask. 20 minutes, he says.
11:15
am Nicky calls me. I'm done! He says. I take the water away and get
him set up. I get the trash and the scissors. I cut the netting and tell
him to take his time to take his bandages off... but not too long. He
likes to take the bandages off himself.
11:30
am While I get Connor ready for lunch I catch a glimpse of The Young
& The Restless-Terrible Tom is telling a bunch of lies to his
ex-wife's Gloria new husband John Abbott. Interesting... Connor has some
cheese and a bagel while I eat some leftover rice with cheese.
11:45
am The phone rings: It's the g-tube supplies vendor, she tells me my
order won't be delivered today as promised but Friday. That's fine, I
said. She's worried that Nicky will run out of his Nutren. I tell her
he'll 'barely' make it. I lie. They always ask me how much I have left
and only want to give me just enough to get me through it one month and
that's it. Do they really think that, as a mother, I want to cut it THAT
close? My child's life depends on the Nutren. I have at least 6 cases as
a cushion.
12:00
pm I check on Nicky-he hasn't taken off a thing. UGH. Common Nicky!
You gotta do it while it's WET!
12:05
pm I call the wheelchair people and they can't send me anyone today.
Maybe tomorrow-and they tell me to call the insurance company in the
meantime to get it pre-approved.
|
2:40 pm Connor is
sleeping peacefully on my bed with his cars.
|
12:20
pm I call the insurance. I give all my info to the automated system
and when I get a live person she asks me the same info all over again.
What was the purpose of me giving all my info to the automated system? I
don't get it. After she gets all my info she tells me that I have to
call a different phone number. She gives it to me. I hang up, look it up
and it's the SAME phone number I had just dialed. Figures.
12:30
pm I re-dial the insurance. I give my info to the automated system
once again and then yet again to the live person. I am put on hold while
my favorite soap, The Bold & The Beautiful, starts. It's okay. The
storyline sucks nowadays. Brooke is once again going after her
daughter's man and a sweet romance is not well received. Blah. Finally
the lady comes back on the phone. She tells me I need to call the
pediatrician and have her call the insurance for this. I tell her it
makes no sense. Why the run-around? Why can't I tell them what's wrong
with the power chair? Why does the pediatrician have to tell them? It
makes no sense.
12:50
pm I call the pediatrician's office - they are out to lunch and
please call back at 1:30 pm.
1:00
pm I check on Nicky again. He's made some progress. The gauze of his
chest is off.
1:05
pm Greg is up, he massages my shoulders. He tells me that the
insurance may not pay to fix the power chair since it was my 'fault' for
the power shortage. Terrific. He then tells me that the dentist called
him to change my appointment from Thursday to Friday. Oh good. I don't
mind delayed appointments with the dentist.
|
3:15 pm Nicky is
watching TV after I finished wrapping his chest, arms and hands.
|
1:15
pm I call Shields to place my bandage order - it goes smoothly. It's
a miracle!
1:20
pm I sit next to Nicky to lift his spirits. We laugh. He's slowly
taking off the gauze from his left arm. Connor climbs on my lap. He's
making a funny fish face. What a funny kid.
1:35
pm I call the pediatrician and tell the nurse my problem with the
power chair. She puts me on hold half a dozen times. She then tells me
that if we get cut off she would call me back. We get cut off. I wait
for her to call me back.
1:55
pm Greg leaves for work. Don't leave me!!!
2:00
pm I am tired of waiting for a call back so I make the call. She
tells me that this is a matter for some other gal and that she'll call
me back. Yeah right. Nobody ever calls me back!
2:15
pm Nicky's done! I can't believe it. He only has one new blister
just below the elbow, but his wrist is bleeding badly. He tells me it's
bleeding because it's so dry. I prepare the Vaseline gauze with the
extra goop, Mepitel, Mepilex transfer & the rolled gauze. As I
started wrapping him Connor goes to sit down on Nicky's computer chair.
I ask Nicky which arm he wants me to do first. His right one gets
wrapped first. Nicky has a wound on his armpit and one on his chest
that's been there for almost a year now. It was a growth at some point,
but now it's just a wound the size of a quarter that does not want to go
away no matter what we put on it. Nicky's forearms are quite bad as
well.
2:35
pm As I diligently wrap the fingers of Nicky's right hand I glace
over at Connor and he's asleep on Nicky's chair. I go wash my hands and
'move' the little guy to my bed. I could never 'move' Nicky like this
when he was a baby, so it's really nice.
|
6:20 pm Connor is
eating his rice and potatoes along with his disco balls.
|
2:40
pm I start wrapping Nicky's left arm and then I do the chest. The
chest is doing quite well, but Nicky wants it wrapped anyway 'just in
case'.
3:15
pm I am done wrapping Nicky. He's so happy! He tells me he feels so
much better. I tell him that he can have until 5 pm to play and then
it's homework time.
3:20
pm I go check the mail. Nothing.
3:30
pm I glance at the towels on top of the dryer. Oh yes, I need to
fold those. I do and then I fill the washer with another load of
laundry. One load a day it's all I can do.
4:00
pm I check my emails... nothing major going on. Good deal. There is
always someone that has a "cow" if I don't answer within a few
hours. While I am at it I finish up some tags that I had started and
upload some on the website.
4:30
pm I check on Connor - he's still sleeping. I check the TV for a
moment... Ellen is on, and she's doing her show on someone's cul-de-sac.
She's so funny. She's interviewing Ray Romano, those two put together
are just hilarious.
4:45
pm I hear a noise, Connor is awake-but he's just lying there. I need
to make sure he's really 'awake' when I pick him up otherwise he's so cranky!!
4:50
pm I go check the mail again. Nothing
5:00
pm I tell Nicky to come to the kitchen table to do his homework. As
I wait for him I get my checkbook out to pay the bills due this week.
Nicky wants his diaper changed. I tell him I have one more bill to pay
and then I am all his. He sits next to me and asks me why the
decorations for Connor's birthday party are still up and asks me if I am
lazy! I don't think so kid!
5:15
pm I change Nicky's diaper and all that entails, bandages, ointments
etcetera. It's never a fun thing for me to do, and never a painless
thing for Nicky either. It sucks.
|
7:15 pm Connor just
lined up all the blocks in front of the TV. He is so proud of
himself he's clapping while yelling YEY! Nicky thinks his little
brother is just hilarious.
|
5:25
pm Connor is awake. He's in a good mood too... good deal. I let him
play for a few minutes while I help Nicky with his homework. Connor goes
up to Nicky and gives him a hug. I glance at them and think to myself
how cute they are and how lucky I am. Awww.
5:50
pm I check the fridge. There's several leftovers from the weekend's
dinners. I pick the oldest, the chicken and rice southwest style. But
there's not that much, so I cut up a couple of potatoes and fry them.
Connor is playing with his toys while dinner is cooking.
6:20
pm I put Connor on his high chair and we're sharing the
chicken/rice/potatoes dinner. He seems to really enjoy the rice. As we
eat dinner he wants me to turn on his three little disco balls. While we
eat I am watching a re-run of Season 5 of the Amazing Race on GSN. I
have a good time watching Christie and Nicole get sick on the caviar.
Was this the only roadblock they did in the whole show? No wonder they
changed the rules on season 6. Wimps. The Bowling moms get through it
quickly!
6:50
pm Connor is a mess. I take him to the bedroom to change his diaper
and put a shirt on him. It's a little big but it's cute.
7:00
pm The sprinklers come on outside. To save some energy I open the
back door and most of the windows of the house. It's cool now. I take Connor to check the mail. It's there finally!! I see a
package from my mom. Yes! I knew there was a reason I kept checking my
mail today.
7:10
pm I walk back to the house and the sprinklers change portion of the
front yard. Now there's a fountain where a normal sprinkler should be.
Fantastic. I will need to tell Greg tomorrow.
7:15
pm The mailman is at the door with a package. He tells me about the
sprinkler/fountain. I know... sigh.
|
7:45 pm Nicky and Connor
are playing with their 'vehicles' outside. Nicky had his 'bus'
since he was 2 years old and still uses it! Connor's 'vehicle'
was a gift for his second birthday.
|
7:20
pm The kids want their drinks. After I fill them up I am able to sit
down to open my mail. I have some new charms for my EB awareness
bracelets from a dear friend with a sweet note :-) My new TV guide is
the Fall Preview issue! YEY! I have every TV guide TV Fall Preview issue
since the early 80s! There's a birthday card for Connor - from Greg's
mom - too sweet! All homemade. The best part is the package from my mom.
Inside is a gift for Connor's birthday and a cute card with some money.
They also included the memorial card for my grandma, who passed away in
late June. She was 101. I get a tear down my eye.
7:30
pm Connor wants his milk refilled. Well, at least he finishes it and
gives it to me, I prefer that then finding his cup half filled under the
couch with what will become Cottage Cheese. Ugh.
7:45
pm The sprinklers are now covering the back yard. Nicky and Connor
take their vehicles outside to ride them. I check my trees for figs
before the sprinklers hit them. Nothing :-(
7:55
pm While they play I do my semi-daily jump rope exercise. I am up to
180 jumps and I add 10 a day. My goal is to get to 1000 3 times a week.
Nicky thinks I am crazy.
8:05
pm I have a piece of birthday cake that Connor shares with me. In
the meantime Nicky, who got his face wet from the sprinklers, can clean
the gunk off his teeth, the crust from his ear and from his g-tube. I
praise him infinitely!!
8:20
pm I get the night feeding tube ready for Nicky. I fill a kangaroo
bag with four cans of Nutren 1.5, I make sure it threads correctly in
the machine and then put the medicines in the syringes so they are ready
to go.
8:40
pm I am back in the kitchen and I start cleaning up. There are so
many toys everywhere, so I make my way around the house to pick up at
least the toys in the hall so when Greg comes home in the middle of the
night he does not stumble or fall or break anything!
|
8:00 pm Nicky likes
getting wet in the sprinklers. It's been a hot summer and this
helps him cool off. Connor looks on, he will not get that close
to the water!!
|
9:00
pm Nicky tells me he's going to bed. I tell him to go ahead and go
to the bathroom to do the mouthwash. While he's walking there I turn off
the fan and the TV in his living room. After I turn off the light the
room is so dark I step all over some blocks and I nearly fall. Great.
9:10
pm After I finish getting Nicky's mouthwash done I hook him up and
give him his medicine. Connor climbs on Nicky's bed and gives Nicky a
hug. Too precious!! I get Nicky his milk once again and then I am ready
to relax.
9:20
pm Darn it, I missed the first 20 minutes of Big Brother 6! Janelle
gets the Veto! Take that Yvette!! I get myself a whiskey and coke to sip
while I watch my show.
9:30
pm Connor keeps coming in and out of Nicky's bedroom. Nicky has his
TV on and he likes Scooby-Doo. He keeps wanting me to turn on his disco
balls which I turn off when he's not looking. Too many batteries, too
few funds.
10:00
pm Rock Star starts. Connor is dancing and having fun, but I really
need to get him to bed. I take him to my bed during a commercial and to
my surprise he's asleep within just a few minutes. He had positioned
himself with his head on my pillow under the covers. What a treasure!
10:15
pm I go get another slice of birthday cake. Bad, bad mommy! What
happened to my diet? Rock Star is kinda boring tonight. Then again, it
comes in so late. I am usually in bed by now. I lay down on the couch
and fall asleep.
11:05
pm Ooops! I wake up. Darn it, I missed the end of the show. I close
all the doors and windows, turn on the A/C and the alarm and go to bed.
Connor is now sleeping on the flat board behind our pillows. I transfer
him to his crib. I check on Nicky, he's sleeping soundly. Good night
sweet boy!
