A Day in the Life

Living with a child with severe, complicate CHD's is always stressful and the daily grind does nothing to relieve the pressure.  Considering the schedule we keep, not just for Carolena, but for the boys as well, it is quite amazing that Kevin and I are still somewhat sane.  The best part about our day and schedule, there is never a break.  I understand now what the doctors were trying to tell me back when I was pregnant. So, we try our best to have some fun in between and have learned to be very proficient and efficient in time management.  Unfortunately for Kevin, this does not come easy for him.  Myself, on the other hand, being as though I am anal and somewhat OCD, the time management comes easy.  But, it is not always enjoyable.  There are days when I just do not want to get out of bed to face what I know the day will be.  Fortunately, at this point, Kevin and I seem to hit our bad days at opposite times.  The one thing that seems so baffling to me is that even with all we do, we are the lucky ones.  Many other parents with CHD children have to juggle and manage so much more than we do.  I feel blessed and cursed all at the same time.  Such a weird feeling. 

Thanks goodness summer is finally here! 

With the boys out of school, the time restraints are a little eased, still the same as far as C, but we do not have to rush quite as much as the boys do not need to be at school.  The whole not being at school really helps us out.  School just throws a whole new element into the schedule.

When summer ends, as I am so sad to know it must, I am so not looking forward to returning to this -

6am - Kevin gets up, gets ready for work
6:30am - Kevin gives C her meds, I get up and start getting ready, Kevin wakes the boys
6:45am - Kevin gets breakfast for the boys, dresses C, gets C in high chair to feed
6:55am - Kevin feeds C, and refeeds her and generally tries everything he knows to stop her from puking
7:20am - I get to kitchen, help get boys finished for school, get my stuff together, help clean C and get her dressed in new outfit as she has either vomited or had a blow out diaper and get her 8am meds together
7:25am - get frantic because if we do not leave in the next 5 minutes we will be stuff in ridiculous traffic and the boys will be late for school, all the while going this should be a 10 minute drive at most, we live 6 miles from the school
7:30am - fling all my stuff in car
7:32am- run around like crazy trying to get all 3 kids in the car and seat belts and car seats buckled, this usually means I am very loudly speaking to the boys to quit watching the garbage men, or butterflies or whatever else has caught their interest and GET IN THE CAR
7:35am - hurry up and back out, trying hard not to hit Kevin as he is getting into his car, and get to the road as fast as possible so I can hopefully not get behind the very frustrating nice person who likes to come to a complete stop in the school zone on the main road and let 5,000 cars and buses turn in front of them.  Even more frustrating is that the school zone is completely pointless as there is no cross walk, no bus stop and not even a crossing guard...it is just a way for the whiny people in one subdivision to slow down traffic on the main road so they will not be late....GRRRRRRR...
7:53am - wait at last red light to cross street and pray like crazy that the car line at the boys school is still going so I do not have to walk them in (thus getting C out of her car seat as well) and have them be late to school for the 1,000th time...UGH...
7:56am - drop boys off in car line and immediately switch radio station to non kids music because there are only so many times I can listen to the animals in the animal farm on Kids Place Live (xm station) before I begin beating my head against the steering wheel.
8am - get into my garage at work, get C out of car, into stroller and get into office
8:05am - get into office, give C her medicines, torture her by making her stay in stroller until time to give her fluid
8:30am - give C her fluid, pray like crazy she will not vomit and have cup at hand to catch said vomit when it does come up.
8:50am - finally get my computer booted up, phone calls checked (very fortunately I do not have many people call me), check email and generally start my work day
9-10:45am - C plays, tries to talk on the phone when I am on the phone, pulls out all her toys, yanks on all my computer wires, turns the copier on and off 5 million times, pulls all her diapers and wipes out, runs around like crazy, climbs up on my desk, tries to type on my keyboard, hits the speaker function on my phone 10 million times and laughs each time at the noise the phone makes
10:50am - I clean up her mess
10:55am - C goes back in stroller
11am - I feed C while she attempts to watch Mickey Mouse clubhouse on my phone which seems hit or miss depending on whether the people at Sprint are actually working that day and are keeping the service going so the show will play without much buffering...really
11:30am - done feeding, if I am really lucky C has fallen asleep but not usually, my luck has apparently decided I am not worthy of it so it has fled.
11:30am - I get to eat lunch, in my office, at my desk, then I do some more work
12:20pm - I put C back in stroller and give her fluid, saying lots of prayers she will not vomit or have another blow out diaper
12:50pm - I get ready to go for a jog
1pm - C and I hit the road, well sidewalk actually, and go for a jog...yes, in June, in Florida, at 1pm...apparently I am crazy and did not know it, pray like crazy C will not vomit, have cup at ready
2pm - after sweating like a pig and about collapsing from heat exhaustion, I get my sorry self back in the car, go back to work, get changed and back to office to do some more work
2:30pm - give C her medicine
3pm - C back in stroller, feed her again...try the stupid phone for Mickey..again
3:30pm - yay!  I get to eat a snack
4pm - leave work, pick up boys from school and head to tennis, ask about their day at school and get simple, one word answers in return
4:20pm - get to tennis, give C her fluid
4:30-5:30pm - watch as the boys play tennis, or learn or practice or whatever they do, pray lots that C will not vomit, have cup handy just in case
5:45pm - oh home, I get kids in, boys go to shower, then sit down to do homework, I try to fit in the second half of my workout, tell the boys 3 million times to get in the shower, not to take 20 minutes in shower, get dressed after shower, sit down and do their homework, watch out for C, shut the doors without getting C's fingers caught, dodge C under my feet as I exercise, tell C 3 million times to not touch the tv, tuner, vcr or any of the other electronics in the media center, quickly snatch remote away from C, tell C for the 4 millionth time to go play with her toys on the mat, finally give up and have boys come play with her, get dinner started, around here is when all of C's meds for the next day get made
6pm - I will say this is the time Kevin gets home, but there is much debate about that in my house, it usually is closer to 6:30, sometimes 7...just saying...
6pm - C gets medicine
6:30pm - C back in highchair for dinner, Kevin feeds her
7pm - we eat dinner, yeah, I shoot for 6:30pm but that just is not realistic anymore
7:15pm - Kevin gives C her bath while I clean the kitchen
7:30ish pm - Boys go to bed, sort of
8pm - C gets her fluid and she goes to bed, sort of, I get my lunch together for the next day, C's stuff together for the next day
8:30pm - I finally sit down on the couch, Kevin maybe here as well...depends on whether the children are actually asleep or not
9:30pm - Kevin very carefully gives C her last feed of the day, do not want to wake her up
10:15pm - I give C her medicine
10:30pm - either I or Kevin will give C her fluid, depends on who is still awake at this point
10:45pm - finally, blissfully asleep...ahhhhhh...until around
2:30am - which is when all of my children believe is the time in which they must wake up with some complaint, fortunately not all 3 at the same time and on the same day, but we generally are woken up by at least one of them at night...mostly it is C standing up in her pack-n-play screaming at the top of her lungs because she has lost her paci and cannot find it and only mama or daddy can get it for her
6am - the alarm goes off and we get to do it all again

This is just Monday. Throw in Todd's soccer on Monday nights (in addition to tennis), my group meeting night (Monday as well), Kyle's cub scouts (on Wednesday), mine and Kevin's meeting (also Wednesday), Junior League (Tuesday nights), Kevin's late meeting at work (Tuesday nights), and any of the various and sundry doctors and/or therapy appointments for C and the whole thing changes yet again.  And I am sure I have forgotten to mention half the stuff we do.  It is no wonder people are afraid to enter the chaos that is my house and my life.  Sometimes I wonder where I even get the time to worry about C and all her issues.  Yet, it is still there.  The constant worry.

Oh, by the way, I do not drink coffee.

Nor do I drink Diet Coke or anything else with caffine.

Maybe I should check out going on meds.  Hmmmm.