Since my last post in August, I’ve started five new posts (not including this one). I’ve finished zero. It’s November 1st, and I’ve fallen asleep or abandoned every new post in the past few months. If there is one lesson the universe wants to be sure I know, it’s that I’m not Superwoman and I am not capable of doing everything. For my part, I have a really hard time accepting this. I know it. I admit it. But I don’t accept it very readily.
Over the last few months, our family has endured another hospitalization and Eli has been stay-home-from-school sick at least 3 times. (By school, I mean daycare.) The afternoon I picked him up to find out that he’d had three seizures was, thinking back on it, pretty surreal. I walked into his classroom expecting to take my kids to a friend’s house for a low-key evening and I left trying to keep my wits about me while rushing my son–with my daughter in tow–to the CCHMC emergency room. I had phone calls to make and I didn’t want to panic. Oh, and there was that whole driving thing. At rush hour. In a city that has some of the worst drivers anywhere. My husband rushed from the firehouse to meet us.
That evening in the ED was a long one. We entertained our hungry preschooler (who just didn’t understand why we had to go back to “Children’s Hostibal”) as best we could and tried to appease her with the wholesome vending machine treats. When my husband finally left with her at 11:00, Eli and I snuggled in together on a gurney. John and Evie headed to the firehouse to retrieve my husband’s things and we met them at home a while later. The hospitalization followed the next week (and thankfully only lasted a couple of days), and my mother came to stay with Evie so John and I could be at the hospital. After being hooked up to monitors for 2 days, Eli was found not to have a seizure disorder (thank God!), and we were sent home. Not sure what was going on, although the neurologists were quick to blame reflux. One of his nurses wasn’t convinced and I captured several of the events on video. Even Eli’s PCP thought they looked like partial complex seizures. But, thankfully, increasing his ranitidine means he hasn’t had any episodes since then. I guess those neurologists are pretty smart after all. How ’bout that? Throw in a stomach virus twice, two double ear infections, and thrush and my little guy had had a rough few months. You’d never know it though–he is so full of light. He was even happy with electrodes on his head.
During the last few months I’ve taken time off work–even though I exhausted my sick time last year–to take care of my kids when the bugs hit. My husband has done the same. It’s meant going without overtime pay, and in some cases, going without pay, period, but that doesn’t seem to be so important when your kids aren’t well.
During these months, I’ve wasted countless morning minutes to scrambling for socks for my kids when we have not a minute to spare to get out the door. I’ve done the same thing packing lunches, looking for car keys, and trying to find jackets. In those moments I admonish myself–if I had just put the baskets of clean laundry away, I would have the stupid socks. If I had just packed lunches and planned outfits the night before, like we do most nights, I wouldn’t be in an anxiety-fueled frenzy trying to get my little ones out the door. And it’s hard on them, getting up so early. Bedtime in my house is around 7pm and they get up at 6am. But, of course, there have been too many nights over these past few months where we just didn’t make bedtime. And we paid for it the next morning in the form of preschool meltdowns. Don’t you know that black is an ugly color and preschoolers forces to wear black coats will cry because black is not pink? And of course having to brush your teeth before putting on your shoes is nothing short of tragic. Pick your battles, Stephanie, pick your battles. During these last few months, I’ve threatened to take my daughter to school in her pajamas or without shoes or with “stinky teeth.” I’ve hurried her along while her brother gets carted around happily, not bothered by much unless he’s hungry. I’ve felt guilty all the while knowing that I shouldn’t be hurrying my kids so much, wondering how I can possibly slow down with them and enjoy them for those few minutes we have together in the morning before we go out to take on the world. Yes, if I had just put away that laundry. And packed those lunches the night before.
During these last few months, I’ve started Weight Watchers. Again. And failed. Again. Struggled. Again. And tries again. Again. I’ve spent a lot of time trying to figure out how it is that I’ve managed some pretty impressive weight loss feats in the past, but this time is so impossible. I’ve determined that damn it, I’m hungry. And stressed. And carrots will never satisfy that lethal combination. At least not for me. I’ve tried to build more exercise into my routine and I’ve failed at that too. I get up at 4am with gusto ready to work out. Once. And then sleep trumps exercise every time. I make it to the gym regularly for a few weeks and then a kid gets sick–man down, man down!–or those 7 o’clock bedtimes creep up on us (and so do the morning meltdowns) and, once again, sleep trumps exercise. And there’s that whole getting-home-at-5-and-squeezing-in-family-dinner-and-time-to-play-with-the-kids thing. Yeah, that’s pretty important to me too, especially after being away from them all day. And don’t forget the ready-to-walk-out-the-door-and-realizing-you-must-nurse-baby-now problem. Things at the gym could get really messy if you don’t. And bouncing up and down during exercise class with a chest full of milk is not for the faint of heart.
During the last few months, I’ve had arguments with my husband, and all at once resented and enjoyed the fact that he is working almost enough hours to have 2 full-time jobs. (He has 1 full-time and 3 part-time jobs–such is the life of a firefighter, I guess…) Each month, more of our money has gone to child care than to our mortgage, and I’ve had to rework the budget (more than once) to make things happen. In these few months, we squeezed in 2 date nights, and both ended in our passing out, exhausted from the week, drooling on our pillows. Sleep also trumps nooky.
During these last few months, I’ve quit bringing work home with me because it just isn’t fair to my kids to keep working in the evening after being away from them all day. I’ve brainstormed ways to stay at home, especially with so much money in child care expenses, but we just haven’t been able to get that creative with the budget yet. I’ve had days these last few months that I’ve loved my job, and days that I’ve had some real concerns about the state of education–especially special education–and what that will mean for my kids, especially Eli. (And let me tell you, my concerns have nothing to do with the teachers.) I’ve made late-night runs to the pharmacy to pick up those meds I forgot, dragged a couple of sleepy kids to the craft store to grab t-shirts (at the last minute) for the craft project at school, and made some dinners that really sucked. I’ve gone to work with wet hair (sleep trumps beauty) and mismatched sock, and accidentally sipped my coffee from a mug with coagulated milk in the bottom (that was not awesome). I’ve cleaned my house only to let the clean laundry pile up, or put away the laundry to the detriment of the dishes. I’ve scrubbed the shower while I was in it and cleaned the rest of the bathroom while my daughter played in the bubbles during bath time. At least I was in the room with her, right?
Yes, it’s been a chaotic few months. I’ve had to admit defeat on many levels. I’ve had to stop thinking of my life in terms of “If so-and-so saw my house right now, he/she would be mortified,” and “I don’t want to run into anyone I haven’t seen in a while because I’m embarrassed I’m still carrying the baby weight.” These things get to me. They really do. And I have such a hard time reconciling the perfectionist in me with the me that has a messy house sometimes and the me that hasn’t made losing the baby weight a priority and the me that jets out the door with wet hair.
And over these last few months, I have been gentler on myself than I’ve ever been. I’ve snapped out of my hard-on-myself funks more easily than I have in the past, and I’ve been a little less inclined to believe that my self-worth is determined by the degree of wetness of my hair. I’m not a failure of a woman for choosing sleep over eyeliner, and I’m not a failure of a mother for not batting an eye when my kid eats a stale cracker off the floor (how did that get there, anyway??). I have wanted to prove for so long that I can be everything and do everything and do it well. I’ve created so many contingencies for myself–it doesn’t matter that I’m a good teacher because I’m a fat good teacher. It doesn’t matter that I’m a good mom for playing with my kids in the evening because I’m still the mom with the piles of laundry to finish, dishes to do, and toys on the floor. It doesn’t matter that I’m a good wife because…well, to be honest, I’m not sure where I stand on the “good spouse scale.” But you get the point. For most of my life, I’ve set up these unrealistic, unhealthy, and anxiety-inducing expectations for myself. The funny thing is that I’ve never expected any other woman to live up to my standards. But for myself, I have this impossible set of rules. But during these last few months, I’ve started to let some of that go. I credit my kids–and Down syndrome–with that. My kids have taught me the value of patience, but not just with them. I don’t want to project my unhealthy habits on them, so I’ve worked hard to fake it. I walk a fine line between teaching my daughter that the way you present yourself does matter but you aren’t a slob if you have a few mornings without perfectly styled hair. I never want my kids to obsess over their bodies the way I have mine (that’s a post in itself), so I’ve learned to be a little gentler with myself. I walk a fine line here between teaching my kids to be healthy–to maintain a healthy weight and healthy habits–and teaching them to wrap their self-worth up in it.
I see things a differently because of my kids. I see things differently because of Down syndrome. Down syndrome has taken every experience, every emotion, and made them just a little more poignant. Patience has become a little more important. Acceptance–self-acceptance–has become a priority. I want my son, who has Down syndrome, to value himself just the way he is. I want my daughter, who doesn’t have Down syndrome, to value herself just the way she is. I have to start by valuing myself. Right here. Right now. Just the way I am. No apologies. No excuses. I have to value myself while also working to better myself. But instead of focusing only on the end result, I’m learning to value the journey.
There is order in chaos, right? So somewhere, in this hectic life of mine, things make sense. 🙂 I’m working on that. In the meantime, here are a few of my favorite snapshots from the last few months.