Everyone’s Hardest Things

It’s hard to walk around with a billboard showing exactly what your hardest thing is. It’s hard for it to be public and constant. Everyone has hard things, many just hidden inside; and that’s got to be hard too. I went to a baby group and I explained that Margot has developmental delays, which was hard, and at the same time I didn’t know what hard things the other moms had going on inside because Margot’s disability and my thing are somewhat expected topics of the group; theirs, conventionally, are not.

When you go to the Emergency Room, you’re asked to rate your pain on a scale of 1 to 10. If you don’t speak English or you’re not developmentally able to use such an abstract concept, you’re given a concrete rendering of the scale, as below.

pain scale

What I realized is, it’s incredibly unbiased: there are no words, just faces. It doesn’t say that a 10 is being held in a Nazi concentration camp, ISIS torture chamber, or by Boko Haram… You supply the definition of 10 for yourself. Because each person’s 10 is different and to define a 10 across the board would make triage impossible. The hospital needs to know where you, individually, are at, and I’ve realized this concept translates to daily life as well.

If I have a friend who seems to have “the perfect life” on the outside and then her children are simultaneously diagnosed with degenerative hearing loss and she grieves it like a 10, that’s because it is a 10 for her and no amount of prior “perfectness” is going to soften that blow. She has not yet personally faced such a blow, no matter how many families she has seen deal with one, and so, for her, it is really and truly a 10 and my level of compassion cannot be based on my own scale or contempt for how much easier it seems. I must empathize with the raw pain of getting your 10 redefined. I know that pain and I can be sympathetic toward it, regarding her with tenderness toward her 10.

Comparison is the thief of joy, and empathy. It is the breeder of contempt, malediction and desolation.

When I am present with Margot, I am not always experiencing my bad 10. In fact, I am now and again experiencing that ever-revising good 10! Just as I expected when I was becoming a mom, each new step brings new joy and pride and awe. The fact that the steps are (painstakingly) far between does make them very sweet indeed.

Mindfulness educators write often about tenderness. As a concept, it was very hard for me to grasp “tenderness toward oneself” and “tenderness toward others.” What does it mean to be tender? I still don’t entirely know, but I think I’m getting a glimpse. I think it’s recognizing the feeling beneath the experience and being compassionate toward that feeling because I have been there too. It’s tenderness toward the feeling of being at a 10, not judgment of what the 10 is; that’s out of anyone’s control. We don’t choose our 10s, we just have them. And when someone is at their 10 it sucks just like my 10 does and your 10 does and the horror story 10s do. That’s enough. It  will get revised again later, and that’s just another opportunity for compassion, on everyone’s part.

 

New House, New Life

Wow have we made a lot of life changes in the last few months. Blogging has clearly taken the farthest back seat, but now it’s on the new-habit-list so fingers crossed! The list also includes (in no particular order)

  • Walking
  • AAC modeling
  • Going to support groups
  • Making friends
  • Making the new house a home
  • Reconnecting with my husband
  • Writing in Margot’s journal/posting to Margot’s Tumblr
  • Doing a good job teaching 2 night classes
  • Taking care of my own health/helping my husband find time for his
  • Finding a “me thing”

Whew! That’s quite a tall order. It almost seems like there’s nothing that’s NOT included. But we’ve actually done A TON in the last 19 months, so a shout-out to ourselves is also deserved (feel free to skip the long, arduous list!):

  • Advocated for our pregnancy to go 42 weeks
  • Endured an emergency C-section due to induction techniques
  • Lived in the NICU for 2 weeks grappling with Margot’s heart defects
  • Were laid out on our knees by an unforeseen diagnosis for Margot
  • Spent 3 months in pure depression
  • Had Mastitis twice
  • Endured 6 months of colic and severe reflux
  • Exclusively breastfed for 6 months
  • Managed upwards of 6 medications a day for Margot
  • Stayed at home for 9 months with a baby who screamed bloody murder in the car
  • Patted and rocked a screaming baby to sleep upwards of 9 times a day for 11 months
  • Paced the house for 12 months holding upright a baby who still wouldn’t let us sit down
  • Watched countless developmental milestones come and go
  • Fought traffic to Boston for 49 specialist appointments (with said screaming baby)
  • Cycled through 4 Early Intervention teams looking for the right therapists
  • Stuck to a strict elimination diet of no dairy (no pizza/flatbread, no grilled cheese, no cheese & baguette, no cream sauces, no pastries, no cereal, almost no anything-already-prepared/eating out — wow we have done a lot of new, boring cooking to keep up with this!)
  • Filled out reams of forms navigating the NH Medicaid system to get Margot medical coverage
  • Went to work 30 hours a week throughout all of the above (after 8 weeks of maternity leave)
  • Felt too depressed and self-conscious to even attempt going to support groups thus becoming completely isolated
  • Took 6 trips to the ER and had 2 overnights in the ICU
  • Had Margot under hospice care when we thought we wouldn’t be able to control her seizures
  • Micromanaged our case manager for 9 months trying to get Margot an adapted stroller
  • Spent an additional x000 minutes on the phone, mostly fighting with insurance companies
  • Suffered through more iterations of “Everything happens for a reason” and “Every child is different” than I care to in a lifetime
  • Quit my job to take care of Margot full-time
  • Cleaned out 2,500 square feet to put our house on the market
  • Got organized and cleaned up for 18 showings
  • Got waylaid by numerous real estate agents and mortgage brokers, almost ending up homeless
  • Had to put down one of our dogs
  • Sold our farmhouse
  • Bought a wee little, new house in the 11th hour, alone, with Power of Attorney, by myself
  • Moved in and set up a whole new household
  • Got shingles at age 28 due to the stress of it all (no kidding)
  • Continued to breastfeed until 16 months
  • Changed Early Intervention teams again, due to the move
  • Prepared for and got through two 48-hour VEEGs and an MRI
  • Continued to fight traffic for an additional 55 specialist appointments in Boston
  • Going through third titration and taper for a new seizure med

I’m sure it would have helped some other struggling parents out there if I had chronicled the above online, but I just couldn’t make the time. Instead I coped by reading some other amazing blogs, which also deserve another shout-out:

So the goals are set and we are on our way! They seem to pale in comparison to what we’ve already done, right? There’s just one positive I’m seeing coming out of being Margot’s mom: becoming tougher and doing more than I ever through possible. For now, a bullet-style update on our progress toward each:

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“Dropping a Nap,” aka, “Period of Extreme Mood Volatility”

Over the last week or so, we’ve gotten the impression Margot is trying to “drop a nap.” Since she got down to two naps a day, she has been getting up around 6:30am, napping around 9:30-10:15am and 1:00-2:30pm, and going to bed around 5:30 or 6:00pm. Of course this shifted easily by 15-45 minutes each day, but it was a loose schedule of 3-hour waking intervals.

This was really great, because before it she was awake for only 2-hour intervals and taking three naps. I honestly can’t remember exactly when she made the change, but I believe it was around 12 months. I could check my text message history because I’m pretty sure I excitedly told a friend about it, but I’m too comfy where I’m sitting. I do feel like that change went more smoothly, but time does weird things to memory.

Which is all to say that this time it’s no cake walk.

If Margot is successful in dropping to one nap, she’ll have to move her nap time and perhaps lengthen it. Homeostasis at work and all, this is not so easy. Her circadian rhythms – yes that’s plural, because every cell can ostensibly have its own! – all have to adjust, among a million other scientific processes I’m sure also contribute but I don’t really know about. I just realize that moving to, say, an 11:00am-2:00pm nap is a tremendous amount of work.

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How I Sleep Soundly at Night

So, clearly, if you read my last post, you know this ain’t happening any time soon (and I can’t remove the “Click Here,” FYI).

life binder

Ha!

I do, however, have a less-stylized set of documents that keep the Kelly family train on course. This is not so much a “Special Needs Binder” but rather, morbidly, the stuff I want my partner to be able to access if I were “unavailable” to play conductor any more (read: dead, but, who knows, maybe I’ll take a vacation).

Note: this is going to break all sorts of information security rules (“rules”) but it lets me sleep at night.

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Parenthood in the Iron Triangle

When they say being a parent is a full-time job – and that being a working parent is like having two full-time jobs – they really were right. And as such, like any project manager, we encounter the so-called “Triple Constraint” of quality: scope, cost and schedule.

In short, the amount of time I have for a given “project” is affected by and affects my “budget,” in this case energy, and the outcome or end result. It’s a three way street and each constraint is in competition with the other two. As Wikipedia so aptly puts it, increased scope typically means increased time and energy; a tight time constraint could mean increased costs and reduced scope; and a tight budget could mean increased time and reduced scope.

Hence, the “Pick Any Two” model (in this case, think “energy” where it says “cheap”).

the pick two model diagram

This rule was in full force today. Departing from the exact terms of the model, I basically rocked it in some departments which left me depleted and wanting in others.

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