I can’t believe it has been almost a whole month since I last posted here. I apologize for my absence, but its been a little hectic around here. With all the unpacking (which isn’t nearly done yet), trying to stay caught up at work (which I’ve pretty much been failing at), trying to establish a new routine now that we are home (I have one written up, but can’t seem to stick with it), and just plain being tired all the time, I can’t seem to catch my breath. I wonder sometimes if it is really that I have that much to do or if it sometimes is just that I don’t want to do what I have to do (I know the latter is true at least part of the time). I know that those of you reading who have had or do have sick kids can relate to the fact that life becomes a sort of treadmill. The medications, the doctor’s appointments, the constant worrying about their health (is that just a sneeze or is it the start of a cold? is that just a regular cry or is there something more to it?)…it all becomes a little overwhelming sometimes when you realize that you can NEVER get off of this treadmill. Its constant and it will continue for the rest of their lives. And we’re relatively lucky. We don’t have a feeding tube with scheduled feeds, we don’t have infusions to do, we don’t have special food…but we have is enough to sometimes put me on edge.
I think part of it was that it was easy at the RMH. Everyone there was going through the same sorts of issues. There was nothing strange about our schedule or our inability to go shopping with her or take her around other seemingly healthy babies. But, then you get home and when you’re out and about you see everyone else with their kids in tow at the mall or Target and you realize that you have to plan ahead for these trips to do them without her because you’ve received your letter of warning about flu season and going to crowded locations. At least M isn’t in school. The letter also advised all transplant patients to home school until flu season is over and home school siblings until flu season is over. At least we don’t have to worry about how to make that work. But, its been a tough month of adjusting. I had a little breakdown the other night because she sneezed more than usual that evening and then awoke in a screaming fit of what seemed like epic proportions…I immediately flashed back to our last midnight trip to Stanford from my sister’s house, with her breathing labored and her temperature spiking and I broke down. She wasn’t even running a temperature it turned out and I think she just woke up ravenously hungry (I think she is going through a growth spurt) and wanted to eat. But, I was tired and I panicked and I just couldn’t catch my breath or stop my sobbing. Even once she had calmed down, I still couldn’t shake that feeling of panic. I knew it was totally irrational, but I still couldn’t stop it.
I am doing my best to set up some routines so things get done around the house and at work and for M. Its easy to let things go and then feel like things are piling up. And sometimes it isn’t even that there is that much to do, but that I start the day already so exhausted that I can’t get motivated to do what needs to be done. And sometimes, I feel like I accomplished quite a bit, but for every one thing I accomplish, another five get put on my list of to-dos. And then things come up that are not part of the already stressful plan – the dog gets bit at the dog park and needs stitches and medicines (on top of M’s medicine regimen), the car’s water pump starts to go out and needs to get fixed (on top of our already stretched too thin budgeting after lost wages), the unpacking quickly creates chaos with lost paperwork and a disorganized mind, M starts to outgrow her 0-3 month clothes, requiring I find the tub of 3-6 month clothes in the chaos that is our garage presently and wash and put all of them away (the growth is great…the finding and washing and putting away is the difficulty), M starts to eat solids requiring a new regimen of figuring out what foods and how much and when we should feed her and a realization that eating will only get more complex as she grows and we are not at all prepared for it, being people who eat out often, don’t grocery shop enough and skip meals more than I would like to admit. Many of these things are not any different than any other parent goes through. After all, M is still a baby, she’s just a baby with a few more requirements in her day.
So, as we draw closer to Thanksgiving and a week off from work for me (well, not exactly, since I have to travel to North Carolina for work the Thursday prior to Thanksgiving and I don’t get back until the Tuesday before Thanksgiving, but close enough I guess), I am realizing that I need to get my world at home and at work back under control. I need to figure out a routine that works for me and my husband and M. I need to be vigilant about taking care of myself as well as M, as I can’t risk getting sick (reminds me, I need to start taking vitamins and Airborne for this trip to try to avoid any germs that might be traveling along with me in the plane, hotel, etc.). M has got her flu shots – both regular and H1N1, and my husband has got the regular flu shot, but I’ve got neither yet. I need to do that before I travel as well…and better sooner since its not even effective until 10 days after you get it (guess I kind of missed the boat on that one). I need to find all the bills I need to pay and figure out our finances after our recent car troubles and extra spending for moving.
On top of all this, I now need to start figuring out the holidays. Where will we go (where can we go?)? For how long? How are we going to pay for gifts? Who will be coming to see us? When will they be coming? The holidays are always a bit of a stress, but this year is going to be just a little bit worse in all aspects.
So, I have decided that I need to start making lists – daily lists – of things that have to be done – right down to giving M her medicines the three times a day she gets them, giving her the solids she gets the two or three times a day she gets them, feeding the dog, etc, etc. because I feel like if I don’t have it written down, it just may not get done. I tried to start this earlier this week, and I would get a few things marked off for the morning, afternoon and evening, but most of the stuff has built up over the course of the week while I was unpacking stuff in the garage, organizing the baby’s room with the new (used) furniture we got this week, catching up on laundry, etc. But, I will start again next week and see if I can get just a bit more done each day…
This weekend the hubby and I are walking a half marathon to raise money for the Ronald McDonald House. We have not done the training we should have in preparation, but we’re going to go and do the best we can. The worst that can happen is we don’t finish in time and we get kicked off the road prior to the finish line…but we still raised the money and we’ll still be going to Monterey for the weekend…so, its all good. My sister is going down with us to watch M while we walk. And then my hubby is staying at my parent’s house on Sunday and Monday with M because she has a biopsy on Tuesday morning and that will save us about 300 miles or so of driving!
Life is whirlwind and I feel like I’m getting a little blown over right now. Hopefully, the winds will die down to a nice breeze in the coming months. I know the winds will never fully dissipate, but who doesn’t like a nice breeze?