We attended a big wonderful family wedding this weekend. All of my husband's aunt and uncles and all of the 15 first cousins were in attendance, among many others. This was the first legit big family event we've attended since the guapos were born, and the first time we have attended an event of any kind since we've come out of the Fragile X closet with our extended family. So, not only were many of the family meeting the boys for the first time, but they have also recently come to know about Moose's diagnosis, his brain surgery, et al.
Mercifully, people were gracious and loving and excited and adoring and interested. I did not at a single moment feel accosted or overwhelmed or uncomfortable about the conversation. I did, however, get a substantial number of variations on the theme 'and you work full time too?'
Yes. And here is 'how':
1. Nothing Trumps a Guapo - Nothing. When I am with Moose and Goose, or having one on one time with one of them, that is all that I am doing. I don't watch tv, do dishes or laundry, take phone calls, or otherwise split time that I have with them. As much as I possibly can, I aim to be 100% present for my precious time with my guapos. I roll around on the floor, tickle, squawk and yell, make messes, eat with them, snuggle and nap with them, play creative games with them, do constructive play and totally free play, stare at the grass, whatever. This is the cornerstone of my whole parenting and life approach. There is a whole lot of things that have to happen to keep our family going, but time with guapos is the whole point of the deal, and it's the very best part of my waking hours, so I try not to waste it.
2. Special Needs School - very little in my kids' life would work the way it does without the support of the special school the guapos attend. They get individualized care and therapy circuits in a mainstream environment. This is the PRIME reason I feel like I am justified keeping my career. Frankly, Miss Liz and here entourage probably do it even better than I could anyway, if for no reason other than sheer resources and experience in child development and special needs. This also keeps the guapos on a reliable schedule, and they are well bonded to their teacher and remain together.
3. Flexible work schedule - This is another HUGE one. I'm a consultant, but the client I work for has had me for 5+ years, so the relationship and hours are very flexible. I can attend all of Moose's therapy, doctor's appointments, run errands, catch up with friends and professional colleagues during lunch hours, and so on as long as my deliverables are always prompt and they are made to feel like they are my priority (which they are, but not the #1 one... I am a consultant, we're like lawyers except that people don't see you coming a mile away). Bottom line, when I'm at home with my boys, they are paramount and I am 100% present, pretty much everyone else get's juggled, and my work life has slowly adapted to that.
4. Project Management mindset - I spend a lot of time planning, assessing risks, delegating & monitoring, and coaching people to get the outcomes I think are important. This is a professional skill set that has refined my inherent OCD and bossy aptitudes into a career and a (mostly) high functioning special needs family. Everything is a task, not just obvious things like scheduling an appointment, but thinking about how to keep connected with friends, or finding encouraging things to say to my husband, or time on Facebook. Tasks constantly get re-prioritized. There is no downtime in my world, unless pre-designated in my mental agenda and executed because something more urgent didn't come up (I plan downtime for myself every single day, and my average of actually getting some is about 60%). I now operate a full tilt, gathering and assimilating information, prioritizing, and carrying out. Time in the shower, the car, a line, etc is used to fill or cross off task lists, either literally or mentally.
5. Less sleep - I used to be a sound sleeper, a morning person, and get a good 8 hours virtually every night. I'm currently laughing out loud from having typed that. I laugh a lot now, but more so I don't cry instead. These days, I average about 5 hours of sleep, six is a real treat. When I am exhausted but not tired, I either take a sleep aid, or work a task list.
6. Nurturing husband - Without my hubs, I wouldn't have clean underwear or a real meal very often at all. I handle a lot of the family business, but hubs is the primary food getter and food maker, and he takes care of the grown people laundry. He doesn't really do these in the way I would, or how he would if I could bend him to my will, but he does them fine and he does them consistently. Most importantly, he is also a mostly calm and logical foil to the swirling chaos that is me. His ability and willingness to play this role in the family is an enormous reason why I am able to function in even the most basic of ways on a daily basis. I try and remember to tell him this as often as I can, though it's never as often as I should.
7. Paid services - Beyond schooling, I pay a variety of service professionals to do things for me and my family that I would otherwise choose to do myself. These include, an amazing and glorious nanny who suppliments me as a mom as needed, like all weekend at the wedding events in San Antonio. We have a lawn service, maid service, poop pick up service, we send at least 50% of our laundry out, I get brazilian blowout hair treatments so that I style in 1/3 the time, we have emergency backup care service for when one or both of the guapos can't go to school, we have critical items like Pediasure and my Steaz energy drinks set up on auto delivery from Amazon Prime. It is not an especially affordable approach, but sometimes, when all else fails, you should just throw money at a problem...check.
8. Local Family & Friends - This one is actually not as big for us as some other families, at least not in terms of direct support. However, they definitely come through in real pinches, like when we're heading to the ER again, and with a little luck and planning I can usually get help in the daily course of things on occasion. I actually wish this one could live higher on the list, but I'm a bit of a narcissist and historically have a hard time accepting that others' lives don't revolve around me.
9. Online resources - I manage all of our finances online, through our bank, Mint, and online arms of our credit card and brokerage accounts. I never ever waste time talking to a human for something I can do online at midnight, and if I need a person, I don't suffer the courtesy of talking to 6 people before getting to a helpful person, I pretty much throw a fit right away. I actively connect with 'support groups' on Facebook and have transitioned a lot of my email contacts into private FB groups so I can gather ideas and distribute info efficiently. I do the vast majority of my shopping online, but with a bit of a twist - I keep a charge card with Macy's and routinely order hundreds of dollars worth of items so that I can try them on at home and cart the majority for return at the store right by my office and frequent lunch spots. I send my husband calendar appointments and outlook tasks. I subscribe to newsletters and promotions from brands, organizations, and hobbies I like and use reviewing the emails as a task itself to determine if there's something that should make it onto another list for follow-up. I am absolutely militant about email - I delete or file virtually everything as soon as I see it, so only things that need my attention are actively visible.
10. Blind confidence - This is more about the spirit in which I do things, having realized that pretty much no one knows what they're doing and everyone's just faking it until they make it. This is the big secret about adulthood that no one tells you. Almost no one genuinely feels like the cool kid or the genius, and those who say they do are probably fibbing, are commonly wrong, and are usually assholes. All I can say for myself is that I almost always have no idea what I'm doing, but I believe that I'm an intelligent and loving individual, and I have a proven track record of making decisions that are at least good enough that I'm here in one piece and mostly happy and liked. Far as I can tell, that's about as good as you can hope, so I try and resolve feelings of ambivalence in favor of action and just keep moving forward. I do the best that I can, which is usually pretty good; when I know better, I try to do better; and when I make mistakes, I try and make things right.
For better or worse, that's how I run things, as best as I can articulate it.
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