L has been working on a pair of wiggly teeth for months. They’ve been getting looser and looser, but they’d been hanging in for so long that I was starting to wonder if they’d ever actually come out — so when we sat down to lunch after a morning of adventures in the Science Center, I was shocked to see a gaping hole where his bottom right front tooth used to be.

“But I didn’t chomp anything crunchy, Mama!” he said, after shrieking with joy and surprise at the discovery of this new milestone.

I’m not totally convinced he doesn’t have a tooth working its way through his belly as we speak, but he was certain he didn’t swallow it, and more than a little concerned that the Tooth Fairy wouldn’t come visit him if he didn’t actually have a tooth to offer. So we made our way to the front desk of the Science Center, explained the situation to an incredibly nice member of their staff, and left my name and phone number on a pink post-it with “Lost tooth” noted in big letters.

I’m hoping she picked up on my “we don’t actually want this back” vibe. I will be incredibly creeped out if they call and say they found it, and can we come pick it up please.

In any case, L was consoled by this and made sure to write a letter to the Tooth Fairy to let her know that if she wanted to find his very first lost tooth, she’d have to visit the Science Center instead of his bedroom. And then he proceeded to lose another tooth that was threatening to topple over without the support of its neighbor – with a little help from Z this time.

In the morning, L was delighted and surprised to find this note outside his door attached to a mini Lego set, along with a couple bucks in the pocket of his Tooth Fairy pillow:

You might want to check your security cameras, Science Center. I think you may have had an after-hours visitor!

Last week, we went on our very first family vacation. When L was younger, his medical needs (not to mention our medical bills) made it extra difficult to go anywhere overnight; and so we’ve gone on short trips to visit family, but we had never gone anywhere just for fun, and L had never stayed in a hotel.

We had been talking about going to Memphis this summer anyway when I found out the Oley Foundation’s annual conference was going to be held there this year. The Oley Foundation supports and advocates for people and families on enteral (tube feeds) and parenteral (intravenous) nutrition, and I had heard good things about the conference in previous years, but it had always been much further away from us and hadn’t seemed like a realistic option. This year, when L is now both line-free and tube-free for the first time, I wasn’t sure if it made sense for us to go – I’d heard it was packed with information and inspiration, and it would be nice for L to meet other kids with lines and tubes and scars on their bellies, but would we get much out of it now that L is doing so well? But we were planning a Memphis trip anyway, and the conference is free to attend, and so with a little encouragement from some other short gut parents we signed up and planned our trip to coincide with the conference.

And then, five days before we were set to leave, the potential benefit of attending was solidified for me. We were getting ready for swim lessons, and I told L he could choose whether or not to wear his swim top since the lesson was in the indoor pool. He replied:

“But I don’t want anyone to see the THING on my belly.”

Cue all the mom tears. Upon further probing, I discerned that he wasn’t really concerned about his surgical scars, but that he didn’t want anyone but us to see the spot where his g-tube used to be, which looks kind of like a second belly button above and to the left of center. It’s the freshest scar, and still red and kind of scabby. And it seems that someone at preschool had said something about it that had made him want to keep it covered.

A few days later we were off. The trip went amazingly well, considering it was our first real vacation with kids in tow. We hit the kid-friendly highlights of Memphis – Mud Island, the zoo, lunch at B.B. King’s and a visit to A. Schwab, even the top of the pyramid – and introduced both L and G to Memphis BBQ, where G discovered a deep and abiding love for baked beans. And while naptime and bedtime and a little sightseeing meant we skipped over some sessions of the conference, we hit some conference highlights as well – info sessions, networking, and opportunities to support Oley, like a silent auction and Oley’s annual Walkathon to wrap things up. And L, who has never met a stranger, thoroughly enjoyed himself, from the luau in the kids’ room to finagling his way into someone else’s family on stage during the conference’s version of Family Feud.

I’ll be honest, though: as our trip was wrapping up, I was asking myself if it would have been worth it to attend if we hadn’t already been planning a trip to Memphis. I absolutely believe it could have been life-changing for us two or three or especially four years ago, but did it justify the time and expense now, given that L is doing so well and we aren’t currently seeking alternate treatments or ways to troubleshoot ongoing problems?

And then I heard this:

“Mama, I have to tell you something. You want to know something cool? I have TWO BELLY BUTTONS!”

For more information about the Oley Foundation and to view sessions from this year’s conference, go to www.oley.org

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After L was born, I struggled for a very long time. My anxiety was out of control, and although I was never diagnosed with anything thanks to an absolutely failed attempt at accessing mental health care (more on that soon), it’s become clear to me that I was experiencing symptoms of PTSD, which is common among NICU parents and people who have experienced medical trauma.

I’ve started to write about this a number of times. When I began blogging, my purpose was to be honest, and this is among the most raw of all, and maybe the most important part to bring into the light. But it feels so big, and I was nervous about making these particular cracks in the surface visible, and I struggled, over and over, to find the right words, and so it kept slipping away in silence.

Yesterday, though, the news about Anthony Bourdain hit me hard. And in the wake of yet another public personal tragedy, there has again been an outpouring of online support, with a unifying message of encouragement: reach out. But, from my perspective at least, it’s not so simple as that. And so my words may not be perfect, or complete, but I’m laying out at least this one part of my own soul.

It took me nearly a year after L was born to finally reach out. That’s not because I wasn’t aware I could use some support, or that what I was experiencing wasn’t normal or okay; it’s because I was exhausted, and beaten down, and struggling to keep up with even the most basic needs of our new medical life, which had flooded us with unfamiliar equipment and sterile procedures and home health nurses and therapy visits and countless unexpected hospital stays. This was a time when my stress and anxiety made even opening the mail too much to handle on many days; I would let our mail pile up for weeks because the bills and insurance denials I knew were likely lurking inside those innocent-looking envelopes made my heart race and my stomach fill with lead. Adding in another layer by dealing with my own mental health that came with new anxieties all its own was too much for me in the middle of all that, so I put it off, and put it off, and refused to look at it, and put it off some more.

Most of all, it took so long because I had to call. If that one simple fact were different, if I could have simply scheduled an appointment online, without having to muster up the courage to dial that number and spill my dark secrets aloud to a stranger over the phone, I would have gone in months earlier.

As L’s birthday approached and I realized how strongly the looming anniversary of that day was impacting me, and with a lot of encouragement from my 99, I finally did reach out. But my first and only experience with mental health care, which totaled exactly four appointments, was an utter disaster.

She skipped the intake questions entirely during our first appointment, instead listening to me tell my story while interjecting the kind of platitudes and canned responses I had grown to dread from anyone, let alone the person who was supposed to be fixing me (…“I can’t even imagine!”…“You’re so strong!”…) And when we finally did circle back to those big, important questions at my second visit, instead of simply asking them, she assumed – perhaps since I was a mother and was managing more for my child than she seemed to be able to fathom and still appeared to be a responsible, put-together adult – that I was navigating most things just fine.

“No alcohol abuse, right?” (No, not in the raging alcoholic sense, but my anxiety was bad enough that I had been self-medicating with wine in order to fall asleep at night. Because her question assumed otherwise, it made getting those words out that much harder, and so she never knew this.)

“And you’re not suicidal?” (I wasn’t – I want to be clear about that, for anyone who loves me who might be reading this – but what if I had been?)

She proceeded to spend the third visit guiding me through an absurd face-tapping exercise for which I’m still not clear on the science or purpose, and at my fourth visit pronounced me all better since we had just received good news about L’s prognosis (spoiler alert: that good news was short-lived, and did very little to improve my mental well-being).

After that we parted ways, and I, having mustered the courage to reach out and having had it fail so miserably, never mustered that courage again.

Knowing that my mental health was important didn’t matter. Knowing there were tools available and how to access them didn’t matter. When I was most in need of help, a simple phone number felt like an insurmountable obstacle rather than a resource. I wouldn’t want to quell the flood of messages encouraging people to seek support if it can save even one life, but it seems to me that putting the onus of reaching out onto those who are in the depths of a struggle for their lives may often be a burden too heavy to bear.

Since then, I do feel like I have healed tremendously. Time has helped, and L’s improved health has helped. But most of all, my incredible support system has helped, and hearing the stories of others and knowing my experience was common and human rather than weak and shameful has helped more than I can say. Those last two are the sole reasons I finally did find the courage to call at all, and they have helped me make it through some of my darkest times. Please keep the conversation going;

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