My most important resolution for 2018

Two weeks ago I went to see The Last Jedi.

This was significant for a couple of reasons. First, omg new Star Wars! I may or may not have actually teared up the first time I saw Rey and Finn board the Millennium Falcon in The Force Awakens. It was like seeing a part of my childhood come to life. (Even though it was a set on a movie screen. I know that doesn’t really make sense. Judge me you must not.)

The truly significant thing about this moviegoing experience, however, was that it was the first time I had ever gone to a movie by myself. I left my four-year-old and my two-month-old at home with my very capable husband, stashed a cold brew in my purse, and went to a 9am show on a Saturday morning. I didn’t have to bring a diaper bag or 12 extra snacks. I didn’t dress for nursing access. I peed by myself. I ate my breakfast popcorn one kernel at a time like I used to do ages ago before I was sharing it with somebody. I felt free.

And the whole time I was there I felt like I was getting away with something. I was away from the house for a mere three hours, my kids were well taken care of, I had made sure my family had everything they needed before I left the house, and my husband had gone to see it by himself the day before so I wasn’t even being selfish. Tickets to the 9am show cost $5 so it hardly blew our budget. My smuggled coffee was the only really questionable part of my outing. I knew it was fine to be there alone. But it still felt like I was pretending to be somebody else for a morning; like this level of freedom and indulgence was somehow not allowed in my life.

The same feelings bubbled up this past Sunday, unexpectedly, at home. Z and I were both in the kitchen together, at the same time, with all four of our hands free, making breakfast and brewing good coffee in my brand new Chemex and chatting about our plans for the day, when suddenly I felt a stab of guilt. I could see both kids, just a few feet away. L was engrossed in a kids’ show (and an educational one, to boot) and G was waving her arms and kicking and cooing happily on her play mat. And instead of pondering this wondrous miracle that was both kids content, at the same time, without any parental assistance at all, I found myself inexplicably wondering if I was being a bad mom for taking time to make slow coffee instead of snuggling my babies.

I imagine this sense that I shouldn’t be enjoying myself just for me has been exacerbated by our medical struggles, which for us coincide exactly with becoming parents. For a long time, L was hard to take out in public and could only be left in the care of an IV-certified nurse, so we didn’t do anything. In between appointments and therapies and frequent hospital readmissions, we stayed at home where we had extensive medical duties and often oppressive worries on top of all the regular stress of parenting. There were many days when we literally could not spare a moment for ourselves. His health required constant management, and we rarely got breaks.

We tried, we really did. When you are a long-term NICU parent, people are quick to remind you to take care of yourself, too, and we knew we would be long-termers from day one. We even took a day in the middle of his 4.5-month NICU stay, when he was completely stable and simply awaiting another surgery, to go swim in the lake so that we could, momentarily, feel normal. But we didn’t tell anybody we did that. I didn’t tell anybody that most nights, during those stable NICU weeks, I went home and slept like a rock. Because the expectation is that it will be immeasurably hard, that it will be the most miserable stretch of your life (rightly so, in many cases); and if I could swim, if I could sleep, maybe I wasn’t properly worried, properly miserable, properly parenting my son. People encouraged us to take care of ourselves, and we did so, but never without guilt.

I think this was amplified by our medical journey, but I also know that this mindset is not unique to parents of medically fragile children. It’s so easy to get weighed down by the responsibilities of parenthood, to feel consumed by the needs of these tiny humans who depend on you so utterly, and to feel guilty about doing anything that mommy-guilt will translate into selfishness. It can feel impossible to scrape together 30 minutes for a workout when your clingy toddler wants to play and cuddle every second of every day, or to spend an evening reconnecting with your spouse over a dinner date when you’ve already spent all day away from the kids at work. There are only so many hours in a day, and parenting takes all of them.

My New Year’s resolutions for 2018 include the usual suspects: making healthy choices on the diet and exercise fronts, reading more, having regular date nights, being more present when I’m with my kids, paying off that last student loan ahead of schedule. I have resolved most of these things before, and in many cases I’ve failed. But this year I’m adding one more resolution into the mix, which I think may be the key to success for nearly everything else: shedding the guilt.

This year, I will take time for myself when I need it. I will take advantage of my support system. I will occasionally do things because I want to. I will allow myself to enjoy things that are not centered solely around my children. I will know that it’s okay if I don’t get everything done all in one day, but also that I’m often capable of more than I think. I will remind myself that things are not always hard just because they have sometimes been hard. I will make time to work out and read grown-up books and have date nights, and not feel like I am stealing that time from my kids. And we will all be better off because of it.

And when I falter, as I inevitably will, I will reread these words and renew my resolve, because I don’t have to do it perfectly for it to count.

Whatever your resolutions are for 2018, take the time to make it happen without guilt. I know exactly how hard it can be to make space in a busy life, but it really is okay to take some time for yourself. You need time for yourself, even if the most you can eke out in a harried day is a few seconds of deep breathing to recenter before you dive back in. The people you care about most will be better off if you are your best you, so do it for them if you need some help over that mommy-guilt hump — but if you can, simply do it for you.

You’re worth it.

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Teacher Gifts: Avoiding Sugar Overload

The first year L was in daycare, we had a rough start to December that meant lots of holiday preparation ended up delayed, and then we were out of town the weekend before Christmas, spent all of Monday in the ER with a stubbornly clotted off central line, I had a crucial job interview on Tuesday followed by dinner guests (for whom we had had a lovely menu planned but instead ended up ordering pizza), and on Wednesday, just two days before Christmas and the last day of school before winter break, we went back to the OR to have a new line placed. We very nearly didn’t even have a Christmas tree that year, let alone finding time to purchase supplies for, make, and package up gifts for several teachers in the midst of all that. So the teacher gifts that I had intended to deliver pre-holiday break turned into New Year’s gifts instead, the homemade Christmas candy I had planned to include was more than two weeks old, and I decided to toss the stale chocolate and whip up some healthy treats.

“They’ll love it!” I thought to myself around 5 pm as I planned out a treat bag of pumpkin chia banana bread, all-natural energy bites, and homemade zucchini chips. After all, everyone is burnt out on sugar by the time January rolls around, and the last thing most of us need is another bag of sweets to immediately throw our resolutions off track.

By 9 pm I realized that zucchini chips take a heck of a lot longer to make than I had thought. Around 11 pm I became aware that we had no food-appropriate bags in the house, and just after midnight I finished assembling what I hoped everyone would perceive as carefully-planned hand-folded envelopes made of waxed paper (you poorly-prepared procrastinator crafty over-achiever, you!). At 7 am we realized zucchini chips are actually kind of weird the next day, and around 7:30 am Z made an emergency Starbucks run for a handful of gift cards as a sort of apology to stick in with a set of healthful edible gifts that I imagine mostly wound up in the trash.

Last year I was determined to do better. There are lots of ideas floating around out there on the interwebs; this list put together by a teacher has some great ideas, and there are always homemade go-tos like hot chocolate in a jar or this adorable snow day survival kit. But those are all peppered with sugar; and since I wanted to make sure L was included in putting together gifts for his teachers this time around, and because we have to carefully limit L’s sugar intake, I was once again tasked with finding a non-sugary gift. I also wanted to find something that would be appropriate for 3-year-old hands to help with, but that would actually look nice and ideally have some kind of usefulness. The thought certainly counts a great deal, but as the child of two teachers, I am well aware how appreciated it is to receive a gift that’s not just another addition to the box(es) of things you feel obligated to not throw away.

So I spent some time browsing and thinking, and came up with a list of non-sugary, homemade or some-assembly-required, preschooler-appropriate, likely-to-be-appreciated gifts. And since that criteria seems like it might not be so very specific to our family, I thought I’d share a few of my favorite ideas:

A bundle of stovetop potpourri ingredients. Easy peasy for small hands to drop in a pretty bag, and it makes the whole house smell sooooo good (don’t forget to keep enough to make some for yourself!). Pair it with homemade Winter Warmers if you’re really feeling crafty.christmas-simmering-stove-top-potpourriPhoto credit: Mommypotamus

Homemade candlessugar scrubs, or whipped body butter. Ok, so there’s some sugar in this one – but it’s not for eating! Alternately, you could easily buy these things and have your kiddo help you package them up in a pretty little mini-spa bundle. 

coffee coziesA handmade coffee cozy paired with coffee beans, a gift card to a coffee shop, or an edible treat if you’re not trying to avoid sugar. A seasoned teacher likely already has plenty of mugs, so give them a coffee-centric gift that won’t add to that collection! I’m whipping out a few of these crocheted cozies (pictured at right) this year because I can make them pretty quickly while holding a sleeping baby, but there’s also a no-sew version that may be a little easier to get the kids involved in.

Savory edible treats. If you love gifting homemade edibles but want to cut the sugar a bit, here’s a list of ideas that are not zucchini chips.

Handmade ornaments. This is a tricky one. It can be hard for a 3- or 4-year-old to make something that looks nice (sorry, L’s art box!), and the teacher’s suggestions linked above actually lists ornaments as something to avoid. But my teacher mother suggested this as one of her favorite kinds of gifts, because she put up a small tree in her classroom each year and could continue honoring her students gifts in that way each year without having to actually bring them home. So this might be one to tread carefully on, and may vary based on how your child’s school approaches holiday decor. If it sounds like an idea you’re interested in, you might check out these button ornaments (pictured below), which we’re planning to try our hands at on Christmas Eve this year.

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Donate to a community organization that supports children. Donating on someone’s behalf can be a bit risky when it comes to gift-giving, but a teacher is almost sure to love a gift in his or her honor to a non-profit that supports local schools or promotes school readiness. To get the kids involved, have them make a card or draw a picture explaining the donation – and this will give them a chance to better understand charitable giving as well.

Or, you know, you can always pick up a few Starbucks cards. I have it on good authority that teachers love coffee, and also that it takes quite a bit of caffeine to keep up with my little monster!

What are your go-to teacher gifts? Teachers, what are your favorite things to receive?  Leave a comment below to help me add to this list!

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And then there were four

I had thought that I would do a lot of blogging on my maternity leave, but G will be 8 weeks old on Saturday and here I am just now getting around to writing something new.

Part of that is a symptom of simply learning to manage life with two children, especially during the flurry of the holiday season; we are doing well, and L is an amazing big brother and really is adjusting beautifully, but our days are full, our hands are full, and we are exhausted. Instead of blogging, I have been chugging coffee, doing an endless stream of laundry, supermomming out on our daily advent activities, and mitigating that by accidentally washing the baby’s hair with dish soap, getting chocolate stains on her onesies, and literally falling asleep while reading aloud to L in the mid-afternoon.

But the other part of it is that I think I’m not exactly sure what to say. By the time I started blogging about our experience with L, we were nearly three years removed from the start of our journey. I had had weeks and months and years to process what we have experienced; countless hours spent pumping or sitting around a hospital room or holding a sleeping child to think through how I felt about it and what I had to say about it. But having a healthy baby after having a sick one is a brand new experience, and I’m not sure I can offer any profound takeaways just yet.

Much of this is strange and new; since L was 4.5 months old before he left the hospital, we have never really taken care of a newborn before. G has been an incredibly easy baby so far, aside from being an extraordinarily accomplished spitter-upper (we are no strangers to vomiting, but I had NO idea that this kind of volume could come from a healthy baby!), and I am slowly getting used to the fact that it really can be this easy.

I wasn’t sure how I would react to having a second child after L, but most of our days are ordinary, without time to stop and think and reflect on each small thing as it happens. I do think in some ways the weight of all we lost with L, of all the things we didn’t get to experience with him, has taken on new significance, because before I only knew what I imagined life with a newborn should have been like, but now I actually know, and in some ways that makes it painful all over again.

But the Big Feelings tend to lurk below the surface, fragmented, and popping up raw and overwhelming only occasionally. The first time I saw Z lift G from the warmer where she had been taken for a boost of oxygen just moments after birth, the total absence of tubes and wires was physically jarring to me in a way that’s hard to describe; and I did not sleep a wink that night as I tried to wrap my head around how you’re supposed to know your baby is still alive without the constant soft beep of monitors reassuring you that her heart is beating, that she is in fact still breathing. It seemed almost irresponsible to leave her tiny, brand new body lying there so unattached to anything that could register the first sign of a problem. Even now, nearly 2 months later, I am still occasionally surprised to not feel a G-tube under her sleeper, and I still can’t shake a sudden jolt of panic as I remind myself again that it’s really, actually fine to get her chest wet at bathtime.

I had expected some anxiety, but it has manifested in ways I did not expect. For example, for so long when L was a baby his poops were SO frequent and SO loose and made his skin SO raw, and were such an ever-present reminder that his gut wasn’t functioning the way it should, and also I guess I didn’t realize how frequently a healthy newborn would poop, so for the first several days I had an unexpected moment of dismay every time I realized G was pooping again. In the same vein, she seems to be healthy and gaining and growing beautifully, but I still cannot see the really quite impressive volume of spit-up that spews forth on a regular basis without feeling compelled to find a way to fix this problem, because so much of L’s babyhood was spent cleaning up vomit, evaluating all the variables and trying to fix it. And – and this one is not exactly new or unexpected, as it’s kind of been my operating mode for awhile now – the better things go for us, the more I imagine some heinous thing lurking just around the corner, and the more fearful I am that we will pay for this streak of good luck with something truly horrendous just over the horizon.

On the whole though, I can say this: I was not okay when Luke was born, and I was not okay for a very long time after that, but I have healed a great deal mentally and emotionally since then. I would not have taken on a second pregnancy without truly believing that I was in a much better place, because I know the extent to which many women struggle in the first few weeks and months postpartum even with healthy babies; but the last eight weeks have in many ways been healing for me, and for us as a family, more so than I had even dared to hope.

I find myself still yet trying to wrap this up with a neat and tidy takeaway, so I’m going to stop now, because our story as a family of four is just beginning to unfold, and leave you simply with a picture of my heart:

View More: http://jamieschuesslerphotography.pass.us/newborn-thompson

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The Buttonhole: A Picture Story

We’ve had some big developments recently.

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I wasn’t sure if we’d see this day for years to come, but L’s weight gain and growth are fantastic, his vitamin levels are hanging in there, and patch vitamins and his unexpected ability to swallow pills mean there’s really no reason to keep g-tube access, which has really been nothing more than a safety net for the last several months. So as of Aug. 18, we are both line- and tube-free for the first time EVER!

There was a strong possibility that we’d have to go in and have L’s buttonhole surgically closed since he’s had his g-tube for four years. But for once the gut gods decided to take it easy on us, and we were down to just a band-aid by the end of the first weekend IMG_7459(L was excited that he didn’t have to keep the apparently-distressing bandage on his belly very long, but disappointed that water didn’t squirt out of his empty buttonhole every time he took a drink….).

There’s still a chance some residual leakage could cause problems, but everything looked stellar at his 1-month follow-up today.

So now we chug onward.

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Growth scan #1: at nearly 26 weeks, Number Two is currently measuring at the 90th percentile and appears to have reached the one-eyed spider doll phase of development:

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Fingers crossed for continued good reports (and that I pass my glucose test next week since it seems her one and only preferred food at this point is ice cream!).

Number Two: The Big Reveal

We’ve recently had our anatomy scan for #2, and apparently there’s this thing people do after anatomy scans that often involves a filled cupcake as the centerpiece of a big reveal. So, here we go, with much fanfare and drumroll and yada yada yada.

Dun da da dunnnnnnnnnn:

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That’s right, that’s a filled cupcake with all the filling on the inside where it’s supposed to be.

That’s what this cupcake thing is about, right? No? Hmmm….

Due to our history, we also had genetic screening at 12 weeks and an ultrasound at 14 weeks to check on abdominal development, all of which looked great, so we went into the 20-week scan feeling pretty good and hoping the keep the streak going.

Of course, we couldn’t make things too easy on ourselves, so our results did come with an “Everything looks great! Except –,” at which point I think I died about 12 times in the span of half a second.

The “except” is that while most umbilical cords have two arteries and one vein, #2’s cord has only one artery and one vein. This is relatively common and happens in about 1% of pregnancies (so naturally it would occur in mine), and it occasionally correlates with some scarier chromosomal or cardiac or renal abnormalities — but thanks to the genetic testing we opted for, we’ve got a green light in the chromosome department, and all other organs checked out at the anatomy scan, so odds are high that this is one of those random things that just happen sometimes, and is unlikely to affect anything else.

It’s like my body is saying, “Heyyyyy, I know last time I effed up and made the umbilical opening too big — that’s my bad. I’mma go ahead and make this one a little extra small to make up for it, m’kay? That makes us even?”

No, body, not exactly. But keep the rest of your shit together this time and I might let it slide.

There is a chance that this two-vessel cord could impair growth as the pregnancy progresses, so we’ll be doing monthly ultrasounds from here on out to check #2’s growth and development. If all goes well, we’ll proceed as usual with the added bonus of a few extra chances to wave hello to our little. If anything worrisome appears on those scans, we may end up inducing a little early – but at the very least we should have a little more than two hours warning this time around!

I’m not going to pretend that I took this completely in stride – I’ve already spent plenty of time imagining all the sinister things that could be lurking beneath this seemingly-simple semi-complication, particularly given the fact that we received a completely clean report after L’s anatomy scan and look where that got us.

But I’ve also had the opportunity recently to spend a lot of time at work thinking and talking about the importance of being in the present; and I think this may be a reminder to me to embrace the present and save my worry for a time when it’s useful. Nothing is ever guaranteed; we were given some breathing room after that early round of testing, but here is a gentle reminder that we will never be completely in the clear because that’s not how life works – I imagine we know that better than most. But things are looking incredibly good for us right now; we know we can handle far more than we used to think we could, if things should take a turn for the worse; and it serves us best to focus on the fact that right now, I am pregnant and my baby is healthy, and to take each month as it comes.

Oh, and in case you’re wondering, the filling is brown. Delicious, glorious fudge. But #2 is a girl.

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To the ‘pro-life’ senators who support the AHCA:

This is my daughter:

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She doesn’t have a name yet, but her brother is already smitten with her. She appears to be healthy so far, and we’re hoping to meet her around Halloween.

This is my son:

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His name is Lucas. He loves fire trucks, Star Wars, and Neil Diamond. He just turned 4.

If you refuse to protect the life of my son as fervently as you would protect the life of my unborn daughter, you cannot claim to be pro-life.

You see, Lucas has a pre-existing condition. He happened to be born with gastroschisis – a randomly-occurring congenital condition that left a hole in his abdominal wall – and as a result he has short bowel syndrome. It cost more than $3 million to keep him alive in the first few months after he was born, and several hundred thousand more since then, thanks to 11 surgeries, daily at-home intravenous nutrition and tube feeds, home nursing care, frequent visits to medical specialists and various kinds of therapists, and so many hospital admissions that I’ve actually lost count.

You claim to be pro-life, and yet you support a bill that would make it impossible for us to afford coverage for the medical care my son needs to stay alive.

Gastroschisis often results in a C-section in order to protect the baby’s organs during birth. You claim to be pro-life, and yet your so-called “healthcare” bill would make mothers question whether they should have a medically necessary C-section and would threaten the future health of any mother who has had a C-section for any reason, because you’ve classified having had a C-section as a pre-existing condition that will price many families right out of the market.

You dangle the impossibly unrealistic carrot of “freedom of choice” in healthcare as though it were a pinnacle of American values, and yet you would force a woman to carry to term a child who is incompatible with life.

You claim to be pro-life, and yet your bill would make expectant mothers think long and hard at the end of the first trimester, when many congenital conditions are discovered, about whether they can afford to carry to term a life-long pre-existing condition. You would set parents up to make that decision based on their finances rather than their beliefs or prognoses.

You claim to be pro-life, and yet you would throw essential health benefits to the wind, leave 23 million more Americans uninsured, raise premiums for the elderly by as much as 800 percent, and cut $834 billion in Medicaid benefits for low-income Americans in order to give tax cuts to the wealthy. 

You claim to be pro-life, and yet you have thrown the living to the wolves.

If you vote in favor of the AHCA, you are not pro-life.

If you believe that people’s right to life should not depend on their wealth, call your senators today and demand they vote no on the AHCA. 

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Happy Birthday, L

I’ve said before that while many parents think the early years fly by, for us it tends to feel like each year has lasted decades.

In those first hours and days and weeks we didn’t know what L’s future would look like or if he would have one at all, IMG_6713and yet now here he is today “my precious”ing his very own piece of cake (I guess when you’re allowed to have sugar for the first time after four years without any you kind of go Gollum) and laughing raucously as he makes his new Thomas Trackmaster Sky-High Bridge Jump hit him in the junk repeatedly. #miracles

It’s only been four years, but it takes an awfully long time to come as far as he has. His first birthday was really difficult for me, but I’ve come a long way since then too, and each year that difficulty fades a little more.

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Number Two

I’ve heard a lot of special needs parents say, “I’d do it all again.”

I had a hard time believing them in some of our early months. I knew with every fiber of my being that I would go to the ends of the earth for my son, and I have never once questioned whether L is worth everything we’ve gone through for him, but if I had a choice — would I choose to do it again?

That question certainly complicates the fact that I’ve never imagined myself as the mother of an only child. For the longest time, we had our hands so full keeping our first child alive that we couldn’t even contemplate the added responsibility of a second child. As things gradually grew easier, as we learned to better navigate this medical life, a brother or sister for L began to seem more attainable – but that choice was clouded with what-ifs. In theory, we have no increased risk with a second pregnancy because gastroschisis is spontaneous and randomly occurring; but our eyes have been opened to medical realities we had never imagined before L was born, both our own and those of others, and some far more intense and all-consuming than what our family has experienced. And we know better than to expect we will never have any more bumps in the road with L.

And so, contemplating number two, we found ourselves faced with the real-life version of what has been only a hypothetical before. We knew exactly how difficult it could be if an unexpected complication arose, and we perfectly understood the potential threat to the current balance in our lives — and this time we weighed all those overwhelming negatives with the very real possibility of opting out before we ever got started.

It was never a matter of whether or not we could handle it; we have learned all too sharply over the years that you handle what you are given, because what other choice do you have? No, the real question was: Did we want to?

After much soul-searching, lengthy debate, and repeated decisions to delay just a little longer, and a little longer, and a little longer still, we ultimately decided that we did not want to let our decisions be guided by fear.

Number Two is due Nov. 3.

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