Can you believe that tomorrow, October the 8th, Deirdre Colina Gorman will be one year old? That's right, just 12 months ago...little Miss SweetPea came into this world. Boy - it seems like just yesterday! She's working hard to take her first steps by herself...although she'll gladly walk with the help of an able-bodied adult or pug dog - whichever happens to be in close reach. I'm confident she's just days away from stepping out on her own. I think she's logged about 15 -20 steps on her own as it is...I'll be sure to keep you posted!
Now that I've been a mom for an entire year...I've had some time to assess the situation. At a recent workshop where I was presenting, I was asked what changes I've had to make since becoming a parent with lupus. Here's a preliminary list of the adjustments I've made. And to those lupite parents reading along, feel free to chime in!
1) Nap when the baby is napping: Okay, so this is one of the oldest bits of advice out there, one that I'm sure you've heard before. I've even blogged about it before. But no one told me about the twists involved. 1) It's not the napping that's hard; it's passing up on all of the other stuff that you'd RATHER be doing instead of catching up on sleep and 2) napping when the baby naps is fine...but being on someone else's schedule is not so fine. I've had to learn how to go with the flow all over again. Good thing I had a handy book (titled Despite Lupus: How to Live Well with a Chronic Illness - chapter 3, section titled "Control") to reference that covers this very subject.
2) Prioritize your to-do list, and then cut it in half...and maybe even throw it away: While I've been cutting my to-do lists in half for years due to lupus...I wasn't prepared to toss them out the window completely! Pre-Deirdre, I had to rework a day's schedule of events dozens of times, sometimes due to an unplanned evening event that I needed to rest up for it, or because I needed a little extra sleep one day over another, or because lupus was rearing its ugly head and I needed to take extra precautions to make sure it didn't get out of control. But I made those adjustments because my schedule or my well-being was at stake. But with a baby - it's not about you...it's about her. And it's not that you can't get anything done with a baby...you can, from time to time. But given the fact that you might not be able to get anything done, you have to be okay with that. And, as we all know, you can't make up for it during her nap...because, going back to #1...you have to nap when she's napping.
3) Put sleeping first (i.e. assume she'll wake up in 15 minutes): This one is tricky, too...but I've gotten pretty good at going to sleep very shortly after Deirdre goes down for her nap - just on the off-chance that she doesn't take a nap at all. Again - it's not my preference to sleep first...but I can't tell you how good it feels to wake up to her cute little noises fully rested, rather than be scrambling to fall asleep, and then worry about finding another 30 minutes or an hour to rest somewhere else during the day. Every time I nap first...it gives me more motivation to nap first the next time. For more on this one, feel free to check out another of my previous posts.
4) Do what you must to stay well, no exceptions: There's nothing more important than staying well - if not for yourself, then for that little teeny munchkin who's counting on you. I've talked to so many people lately who are so proud of themselves for staying healthy. And you know what? We SHOULD be proud. It takes a lot of work, effort, and discipline. And we're choosing to live well. We really are. I know lupus is unpredictable, and mysterious, and evasive...you don't have to remind me...I wrote a book about it! But there are choices you can make that can help you stay one step ahead of the disease. Those choices aren't always easy, and they aren't always convenient...but for this little lady - what wouldn't I do?