Why haven’t I posted a new entry in almost a month, you ask? Well, the title of this post may have given it away… I haven’t had time.
Sienna and I moved to New York to join Rare Dad on August 24th and had about a week and a half to get to know a new town, hire a nanny, find classes for Sienna to attend, and unpack the house before I started work. Spoiler alert: I didn’t get all those things done.
Then I started my new job (which is awesome, by the way!) and had the new job ramping-up period: learning a new business, new systems, and generally trying to figure out which way is up. During the work day, I try to squeeze in every ounce of productivity because I have a hard stop around 5pm so I can get home so that our nanny can get home to her own family. I zoom from meeting to meeting, and if I happen to be at my desk and… say… answer a call from Rare Dad or return a text from a friend for 2 minutes, that means that I am likely making a trade-off that means I won’t be able to pee. Maybe not even until I get home for the night.
When I get home from work, it’s the evening whirlwind of dinner medicine, dinner, bathtime, bedtime, bedtime medicine, 4 bedtime potty visits, until I generally remember that I haven’t been to the potty myself for about 4 hours… After all that I straighten up the house (sort of), and get back to work till 11 or 12.
A dear friend sent me a link to a video last week and noted something that happens 17 minutes in. 17 minutes?! Do you know what I would DO if I had 17 minutes?! Me either. Probably sleep. Or go to the bathroom 8 and a half times.
Don’t get me wrong, I like being busy. When I’m not busy, I have too much time to think about the “what if’s” of FOP and that would drive me crazy. But the past few weeks have been a little tougher because we didn’t have our permanent nanny in place until last week, and Sienna has been having a terrible FOP flare-up. It started on her lower back about 4 weeks ago and then seemed to improve until we discovered it had moved up to her left shoulderblade, reaching about the size of a lemon. It’s been terrible to look at. It’s been terrible to think that there’s a chance this could be the flare-up that could cause her to lose motion in her shoulder forever. I refuse to believe that this is THAT flare-up. Please believe with me. We will accept all positive thoughts, prayers, fountain wishes, or anything that anyone thinks could possibly work. We just need these flare-ups to settle down until the research catches up. And the research is getting SO CLOSE to an effective treatment. You can read some details about how far the research has come on a fellow FOP mom’s blog:
Which brings me to my point. Some of you have asked if we are having Sienna’s Swimathon again this year. The answer, unfortunately, is no. I didn’t even mention it before but on top of the above, Rare Dad typically works/commutes from 5am till 10pm. We just have too much going on right now with the move and two new jobs in the family. If I give up my sleep time from 12am to 6am, things would not be pretty for anyone. We believe we’ll have our own heads above water by this winter and hope to bring back the swimathon next year.
BUT, the great thing about life is that Sienna’s friend, Zip, is having a terrific FOP fundraiser on October 5th and they are giving away a Jeep! So, for any of Sienna’s friends who want to donate for research for the cure this fall, please donate at http://www.zipperq.com and you might even win the Jeep! (You don’t have to be present to win.)
Zip is the one other FOP’er who we have met, and he is such a cutie – same happy spirit as Sienna! Here’s Zip and Sienna meeting for brunch a few months ago: