A science project with a missing piece. Where are my shoes?

My sister-in-law Kayla, Sister Athletic Trainer, is an absolute genius at puzzles.

I don’t mean that Kayla likes puzzles, although I suspect she does. I mean that she is literally a puzzle genius. She can walk by a table holding a 12,000 piece puzzle entitled “sky on a cloudy day” and find at least 6 pairs of matching pieces before I can even figure out which way to orient the picture on the box.

I am not being facetious.

Maybe Kayla has just had a lot of practice. She has spent three of our last 11 week long cottage vacations doing puzzles as she recovered from major knee surgery (as good as she is at puzzles, she’s not exactly awesome at keeping her own ligaments from tearing). Maybe it’s a gift from God or something. (Drop Dead Gorgeous reference… anyone?) I don’t know. But she’s real good.

At the moment, I feel like I’m staring at a complicated and beautiful puzzle and all that I have left is one particularly challenging bush or patch of sky or something. Once I get a couple pieces in place, the whole dang thing is going to fall together, but I can’t figure out where to start and I am le frustrated! (The “le” is intentional– I’m pretending that the word frustrated is French.)

Here’s what’s up:

In my job (like my real J-O-B) I work as a scientific research writer, which basically means that I help clinicians and scientists to write grants and manuscripts (and yes, sometimes even eulogies and other speeches and such) about whatever scientific endeavor they favor at the moment. I’ve worked on tons of different things. It’s awesome, really, because as much as I dig STDs, 6 years of nothing but gonorrhea and chlamydia got to be a little bit much. I’m not that into it. In my current job, I get to learn about new and interesting things all the time– oncology, genetics, bioinformatics, cerebral palsy, Alzheimer’s disease, chronic kidney disease, pancreas divisum, diabetes, neuroprostheses, patient navigation, and the list goes on. It’s awesome… like being in school minus the grades plus a real salary. Life is good.

Because I really love science and because nerdiness is my life, not just my job, I get quite invested in the things I do. And it’s all that much easier to get sucked in when I work with really passionate investigators… and so many of these investigators, just wow. These clinicians see a problem in their practice and come to us to either study the problem or solve the problem, and it’s inspiring. I have three projects swirling around in the back of my mind all the time right now. And there’s something about them that’s similar, they are related, they are somehow the answer to one another’s problems, but I can’t figure it out. That’s my puzzle. And it’s becoming my obsession. How can I make these things work together for the good of patients? I won’t know until I can fill in the sky!

Not long ago, I worked with a pediatric nephrologist and learned about Bardet-Biedl syndrome (BBS)– a rare genetic disorder that results in cilia malfunction and many consequent symptoms affecting nearly every organ system in the body. Because the disease is so rare, finding care for these kids, especially coordinated care with specialists who truly understand the disease, has always been a major problem for BBS families. Recognizing that challenge, Dr. Haws started The Treatment Center for BBS at the Marshfield Clinic to provide coordinated, comprehensive care for patients around the country… and even around the world. It is the only BBS clinic in North America and has already served 16 individuals from 14 different families in its 3 clinics to date. I helped Dr. Haws capture survey results from providers and families that participated in the clinics and the comments from the grateful families were overwhelming. I was particularly struck by the woman who blogs here at 71toes.com (polydactyly is a common symptom of BBS and her family of 7 was no exception– how clever!) as she documented her family’s participation in the clinic. So cool!

Coordinated care for kids with special medical needs… it’s a thing that’s done well for many kids at Marshfield Clinic. But what about kids in the foster care system?

I have also spent a lot of time working closely with the medical director of the Marshfield Child Advocacy Center. She is totally committed to creating a Foster Care Medical Home (FCMH) for kids in the foster care system in Central Wisconsin. Medical homes are a really effective and interesting way to make sure that healthcare needs are met in a timely, consistent, and patient-centered manner and it’s something Marshfield Clinic has really embraced in recent years resulting in huge cost savings as well as huge reductions in the need for emergency care and hospital readmissions. We don’t have one for kids in the foster care system, though, and they likely really need it. At the moment, I’m working with Dr. Iniguez to complete an American Academy of Pediatrics planning grant for the FCMH and we just completed our third of four focus groups with foster care providers and past participants. Holy… wow! These families. I mean, I was into it before, I thought it was a great idea… now? I’m smitten! I want this to succeed, to help these families, so very, very badly! I am committed. But how? Where do we find the funding? Whose going to coordinate the care? Can it be like the BBS clinic?

And finally, behavioral health. I told you about my big fat $1.5 million HRSA grant? The one that kept me from blogging for over a week, right? What I didn’t tell you was this: due to a “misinterpretation” of the guidelines, the grant was triaged without being reviewed. WTF, right? I know, I’m furious, but trying to be cool about it… because the program is just way too important to let die now. Yes, it was a big mistake. No, I was not at fault (thank goodness, right?!). But dang, do I ever feel responsible… disappointed… dejected even. It was unpleasant news for everyone involved. And now we’re looking for another way. Another way to bring behavioral health services to patients in the primary care setting who desperately need them, but cannot get them due to the provider shortages we face in our area. How does this fit in? Well, you know who else desperately needs behavioral health services but can’t get them? Kids in the foster care system. These kids benefit tremendously from the notion of trauma-informed care… care that keeps in mind, always, that these kids have been through a really stressful, really awful situation and that those traumas subconsciously inform their every single action.

So, in conclusion, I feel like there’s something there… an invisible thread weaving its way through these projects and constantly tickling the back of my mind. It alerts me to the fact that there’s something in common, some answer that I’m overlooking, some person who needs to be contacted or informed or something. I just can’t find what that something is at the moment. I am missing a vital piece of the puzzle– I’ve got to find my special purpose! (The Jerk, yes?)

 

Two winters ago, my husband’s grandfather set up a card table in the living room and worked on a puzzle all winter to keep himself occupied while it was so cold. He did a bigillion piece puzzle or something and it had a lot of sky in it. Lots and lots of plain, blue pieces spread out on the table. And when he got to the very end? One was missing.

There was one piece of sky that was blank.

And it stayed blank for a while.

Until one day, Ed, my grandfather-in-law, bent down to put his shoe on and found a puzzle piece in it. It was in his shoe! Right there! All along! He snapped it in and the puzzle was complete.

I’ll find the piece. I’ll make the connection. We’ll make the foster kids a medical home and extend behavioral services to the population that needs it.

Where are my shoes?

Better yet… where is my sister-in-law???

4 thoughts on “A science project with a missing piece. Where are my shoes?

  1. Dang- this makes me want to get on the floor and help you look for it! There are AAP CATCH grants that are small but might give you guys a little money more quickly to use for something to help the other keep going….. I LOVE that you are so focused and into your job-that you actually LIKE your job- and want to make life better for people. Foster kids are such an under-recognized population that can benefit from all these types of things- consistent medical care from providers who know them and care about them….thanks Rachel for being you!! You encouraged me today!

    1. You’re such a good pediatrician! We actually have an AAP CATCH grant to fund the planning process we’re currently undergoing! What a perfect thought!

      I do really love my job– this was a perfect fit, for sure!!

  2. I think it is awesome for what you are doing and planning to do for these kids and their families. I know you’ll find that piece to put these together! I’m very proud of you! I love you!

    1. Thanks, Dad! I actually sat down with one of the investigators for coffee the day after I wrote this and she had a BRILLIANT idea when I ran it all by her. I’m thinking we’re even closer now… I’m so excited about these projects!!!

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