A Silver Lining

Almost two months ago, I sort of lost my job. I’m freelance, so technically I can work for anyone I want—and really, the person I ultimately report to is myself. But my main client, who has provided easily 80 percent of my work and income for the past 15 years, closed its doors. I do have other clients, but they don’t provide nearly as much work, and for most I don’t have the personal connection that I did to this main client that ceased to operate.

But I’ve been around long enough to realize that most times, things happen for a reason and eventually work themselves out. So I was really disappointed by this change in my job (and more than a little worried about making ends meet), but I figured it was, if nothing else, an impetus to make some changes.

One thing I realized is that I have been undercharging for years. I’ll spare you the details of how I came to this conclusion, because they’re tedious and not really relevant, but suffice it to say I decided that from now on, I will quote higher rates to potential clients. I’m taking a risk, because there’s always the possibility that potential clients will tell me to go pound salt. But I’m hoping that eventually, I’ll land a few new good clients who pay a bit more than what I had been charging. (I hadn’t had a raise in more than 13 years, and in fact I’ve had a few cuts in rate. With cost of living continuously increasing, you can imagine that this wasn’t doing our bank accounts any favors.)

In the meantime, I’m just cobbling together what work I can get from my existing clients and enjoying the fact that even though money is tight, my schedule is freer and I’m not constantly trying to play catch-up.

In the midst of this, an opportunity fell into my lap. An opportunity to make half of what I normally make. But I debated about it for all of about an hour before accepting it.

Am I crazy? No, I don’t think so. Rather, I’ve grabbed hold of a silver lining that has come from me “losing my job” and thus having enough extra time to be able to do this.

Have I kept you on the edge of your seat for long enough? Well, then, let me tell you that you’re hearing from the new person in charge of medical outreach for the Down Syndrome Connection!

You may recall that I’ve been on the Medical Outreach Committee for some time, and in fact some months ago I delivered a bunch of materials to local hospitals so that doctors and nurses would have updated information to provide to families welcoming a new baby with Down syndrome. I was happy to be part of this committee—even though honestly, making phone calls is way out of my comfort zone—because it’s such an important cause to me. And as it turned out, I was the only committee member who had any luck getting materials to any of the hospitals. Everyone else hit dead ends all over the place. (I think I only succeeded because I was obnoxiously persistent.) So the DSC decided they needed to review how they were handling the committee and make some changes.

A couple of days ago, the director of DSC emailed me and said they had decided to hire one person, in a paid position, to be in charge of medical outreach. And she wanted to offer me the job, if I was interested.

And I am. As I said, cold-calling the hospitals was totally out of my comfort zone. I am not a phone person, and I was happy to be done with that part of it! But I will push myself to get out of my comfort zone again, because it is so important to me.

This past weekend, I was interviewed for a film about DSC, and one of the questions I was asked was what prompted my interest in the Medical Outreach Committee. I was nervous being on camera, and I stammered out some sort of reply that hopefully was intelligible. But afterward, I kept thinking it over and thinking about what I could have said. And what I could have said is this….

Medical outreach is important to me because Sam’s diagnosis was not delivered well. It was delivered as if he was not someone to be celebrated, but rather something to be dealt with. And I’ve come to learn that our diagnosis story is far from the worst. Anecdotally, I’ve heard probably a hundred diagnosis stories. And of those hundred, I would estimate that maybe ten were positive. In maybe ten, the person delivering the diagnosis sat down, held the mother’s hand, and said, “This is going to be just fine. You’re going to fall head over heels, and you have a perfect, beautiful baby. You’re going to look back and realize that you were scared, but that everything is just fine.” In the other ninety or so, the stories were like mine…or worse. I think the one that makes me shudder perhaps the most is the woman who was holding her day-old baby in her hospital room, and a doctor strode in and said, “Do you mind if I show these medical students the signs of Down syndrome your baby has?” The woman had no idea anyone suspected Down syndrome. And she was alone with her baby—her husband had gone home to change.

And that’s not okay. These are babies, they are not problems. Babies are to be celebrated! They are new life, and they are beloved!

And furthermore, when you’re talking about a birth diagnosis, think about what the parents are going through. They have spent almost ten months envisioning their baby, and doubtless they envisioned that baby as healthy and typically developing—not as a baby with special needs. And no matter how comfortable the parents are with special needs, the fact of the matter is that when they’ve spent ten months expecting one thing and are suddenly slammed with unexpected news, it shakes them to the core. And delivering a birth diagnosis as if it’s some sort of tragedy removes every single bit of normalcy from that couple’s experience. Every single bit. They don’t get the congratulations and the exclamations about their beautiful baby that they expected; instead, they get uncomfortable pauses and nervous looks.

And I don’t care whether a couple delivers a typical baby or a special-needs baby; every new parent deserves the normalcy of a happy, welcomed delivery. Soon enough they’ll be adjusting to a world that wasn’t what they expected, so let them have their moments of happiness and normalcy. Let them cling to the bottom line, which is that they just welcomed a beautiful new life into the world. It may not be the life anyone was expecting, but it’s no less beautiful.

And that is probably what I should’ve said during the interview. Heaven only knows what I did say; I was so nervous that I can’t remember. But that’s the reason right there—that’s the reason why I’m elated to take on this new role. Because every parent and every child deserves a beautiful, happy, celebrated birth, and I feel like if we can get medical professionals to understand that this isn’t a tragedy, we can help every parent and every child born with Down syndrome have that.

This is cause for celebration, not sorrow.
This is cause for celebration, not sorrow.

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