Least you think we blew away during hurricane Irene, we did not. We didn’t even loose power for more than a few minutes. We weathered the storm with minimal damage, thankfully! Lots of rain and heavy winds caused some flooding and streets to be covered in debris, as a result the first day of school had to be delayed by one day. After some disappointment, we embraced the extra day of summer vacation and prepped for the first day of school Monday night.
Tuesday Morning everyone was up bright and early, and by everyone I mean Lucy too, in fact she was the first to wake at 4:45 am. I noticed that her j-tube drainage was less than it was 24 hours prior, and also that her g-tube drainage had doubled in volume, my guess…her j-tube had migrated out again most likely causing her to be uncomfortable. We were all a little rusty when it came to the early morning routine, having Lucy awake made it even more challenging. Scrambling around the kitchen, packing lunches, making breakfast, listening to Lucy cry because she wanted to smell everything we were making for the kids, packing backpacks, finding shoes that fit because flip flops are not appropriate footwear for school, brushing hair and teeth, and then lining them all up on the front porch for the infamous first day of school picture…I was tired and it was only 7:50am. As the school bus pulled up in front of our house the kids ran off. I kissed them all and told them to “study hard”(memories from my childhood). I yelled to Sophie to be good and to have a great first day of kindergarten, she turned around and shined me her “I’ve got it Mom smile” and then gave me a thumbs up. Drew, Lucy and I waved to the kids from the front porch. There was a kind of silence between us that morning, if spoken it would have expressed a sadness. A sadness that our kids are growing up just as fast as everyone said they would, but also a sadness that our baby may not grow up and live long enough to experience her first day of kindergarten. These feelings manifested themselves in other ways and the stress of the morning came out in, lets just say, not so nice ways as Drew and I said our good-byes that morning. It was later in the day, when my mom called to ask how things were going, that I realized what Drew and I were “really” feeling and suddenly I started crying. We try so hard to focus on the here and now, the positives in our life, and the blessings we have been giving…we love our life, even though it is full of challenges that are out of the ordinary…abnormal…down right difficult. This can make feeling what we are “really” feeling difficult to express at times.
The kids all arrived home from school full of stories from their first days of school. Sophie and Megan were thrilled about everything, Jack had a look of fear on his face when describing his first day. Jack has been blessed(although I think he would choose another word to describe it) with a very experienced, firm, authoritative type teacher. I think he is going to learn a lot from her and she in turn will learn a lot from Jack. As a mama it is always difficult to stand at the edge and watch your children learn to take flight as they realize the potential of their wing span…Jack is going to soar ,we know it, he just needs a little nudging!
Wednesday morning went a little smoother even with Lucy awake. She again woke early, before the kids, complaining of belly pain. I called IR first thing Wednesday morning after e-mailing Dr. R on Tuesday, to see if they could get her in anytime after noon as I had to be home to get Sophie off of the bus before hand. IR was booked solid all day and could not squeeze Lucy in until Thursday morning at nine. Knowing that Lucy would most likely be awake at the crack of dawn, I agreed to the early morning time slot and felt more confident that if we could fix whatever problem she was having with her tube that she might just feel better and in turn sleep better. Lucy’s tube was found to still be in position(yeah for Lucy!) but had an obstruction somewhere causing it to stop draining. We went ahead and replaced her tube, which by the way only took ten minutes because we could just thread the guide wire through her old tube and pull and replace it with a new one, once connected to drainage her j-tube poured out over 200mls of bile…poor baby. Lucy has been sleeping better since getting her new tubie, I wish I had pushed harder to get it looked at sooner.
We are working at getting back into the routine of tip-toeing early in the morning so as not to wake the sleeping Lucy and getting dressed for school. Packing lunches now times three at least two days a week as Sophie is enrolled in an extended day program on Tuesdays and Thursdays. Daily homework and reading logs that need to be signed and returned the following school day. Getting used to new daily schedules, therapy schedules, nursing schedules, after school activity schedules, and eating dinner before 7:00pm so that we can have everyone that needs to be on a school bus the next morning in their beds by 8:00pm(this one is proving to be a bit more challenging).
It is an unusual balance of normal and abnormal that we are both blessed and challenged to live with.