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Save the Prouty Garden.


To Whom It May Concern:

I am adding my voice to the thousands of others who have urged you to consider saving the Prouty Garden. Here’s my story.

Let me first state that I have nothing but the utmost respect and gratitude for Boston Children’s Hospital. Your fine neonatal surgeons, in particular Dr. Thomas Hamilton, and skilled nursing units, in particular the nurses on 10 East, 10 South, and in the NICU, without a doubt saved my daughter Juniper’s life last year. Not to mention the excellent outpatient team associated with the Center for Advanced Intestinal Rehabilitation (CAIR).

Juniper was born with gastroschisis at Beth Israel Deaconess Medical Center. Her bowels were protruding from her abdomen through a small perforation near her belly button. Immediately following her birth, she was taken via ambulance into the OR at Children’s where Dr. Hamilton skillfully replaced her bowels into her abdomen and made her whole once again.

After a brief stay in your NICU, she was transferred to 10 East where we spent the first seven weeks of her life huddled together as a new family of three, trying to make sense of life with a newborn in a hospital setting. Our baby’s bowels were broken. She would need to go back into the operating room to repair two blockages, once her bowels had healed from the trauma of exposure to amniotic fluid and air. In the meantime, she was being fed through an IV in her chest, fully dependent on Total Parenteral Nutrition (TPN).

These weeks leading up to her surgery were full of anxiety and despair for me as new mother. I didn’t know if my baby would live and not just live, but thrive. I wanted nothing more than to free her from the tubes and lines she was attached to and hold her in safety forever. But we needed those tubes and lines. We needed to be there at the hospital. And so, we tried to make a life for ourselves there. We got to know our nurses. We had a routine. My husband would go to work in the morning, and Juniper and I would take long walks around and around the 10th floor, me wheeling her IV pole alongside us.

In the evenings, my husband would come “home” from work and we would go to the garden. Always, every night, to the garden. Yes she was still attached to things, but the fresh air, the quiet splash of the fountain, the presence of others socializing, eating, playing games. It felt like life. Real life. Not fluorescent, sanitized hospital life.

In the garden, we took our first outing as a family. Juniper’s first newborn photos we snapped with our phones on the grass, us lying happily next to her. In the garden, she felt her first sunshine, her first breeze, her first grass. And we felt normal, like a family. Not a family in crisis.

Eventually, Juniper had her second surgery to repair her blockages and then we spent another six weeks rehabilitating them to the point where the doctors felt comfortable releasing us to go home. All told, we spend 101 days living at your hospital during the summer of 2013 and I can’t think of a day that we didn’t spend in the garden, unless it was raining. On the weekends, we’d take food, sketchbooks, novels, and Juniper of course, and we’d set up a picnic. We met other parents there and got a feel for the community that was happening in this big hospital around us. We had garden regulars that we saw grow and heal, other families who depended on the garden to entertain the young siblings of children receiving treatment. We witnessed some patients for whom it was an entire production of nurses and family members just to get them to the garden, and they couldn’t stop smiling once they were there.

Since I learned that the garden might be demolished, I have been asking myself: “What will families like us do, without the Prouty Garden?” I’m talking about the people who make your hospital home for months, sometimes years. Where will they go to feel normal? Will they eat their dinner in the same hospital room they’ve been pent up in all day? Will their baby feel air for the first time in some small shaded courtyard with artificial bird sounds? Where will they go for a game of soccer or baseball? Will they be able to meet other families in the bustle of the basement cafeteria? How will they survive?

Because I’m not sure that we could have. And I don’t think they should have to just “survive.”

I respect that the hospital needs to evolve to continue to provide its state-of-the-art medical care to children of the future. But at what cost? There is only so much space on that property in Longwood. There has to be a better solution.

Trustees, I urge you to keep searching for it.

Shelley Senai




The historic Prouty Garden at Boston Children’s Hospital is in dire peril of being lost forever. You can read more about the garden and sign the petition here: If you want to do more, write a letter and send it to the Trustees at 300 Longwood Avenue in Boston. They are taking a final vote next week.

Finally, home.


New space. New light. New energy. New air to breathe, new ground to tread. You see it once, a thumbnail across your screen, and suddenly you know.

This. This is the place our wandering hearts have sought without seeking. This is the place to live for a long time, to love despite its flaws. This is home.


The newness surrounds you. Washes and awakens you. The light bathes all in new perspective, one that is hope and the peace of knowing it’s right. The home you chose and pledged to, checkbook, heart and soul. It’s right.

These things can’t be logical. Decisions made in your gut and your heart beat out the ones made in your brain, nine times out of ten. Does it make sense to love a house run by expensive, high-maintenance systems, full of drafty, old (but god, gorgeous) windows? On a rough, uneven, unkempt piece of land?

What others passed up we ran to with open arms. Because we knew.


Because the light and the air do something to all of us. The sun warms, the breeze cools, and we hear the trees shifting quietly in their woods. The coyotes howl and the cows moo. The chipmunks chirp while spiders build their castles outside our windows. A herd of llamas (or possibly alpacas) graze peacefully in the fields at the end of the drive.

You find new things to appreciate every day. The pitch of the roof, the angle of the beams. The light in the morning. The light in the evening. The light in the afternoon. And at countless moments you smile because you know you’re finally home.


Juniper’s 1st birthday

Our girl turned one a few weeks ago. One! Year! Of age. It boggles the mind. After all we’ve been through to get to this point, we wanted to celebrate this enormous milestone with our immediate family and closest friends. Here are some photos from our little party in the park.




We tried to keep everything pretty simple and low key. The park is a beautiful green spot on the ocean in our town. It was free to have the party there. The tablecloth and runner were the cheapest fabrics I could find: burlap and muslin. I bought them for a few bucks a yard to cover two 8-feet long picnic tables pushed together. My mom bought a bunch of bouquets from Trader Joe’s the day before which I arranged into blue Mason jars we bought on Amazon, plus some of our own vases. Also from Amazon, the jumbo jungle animals we spray painted gold (that are now scattered throughout our house on bookshelves and side tables!).

I couldn’t find a cake I liked at any local bakeries so I made this gluten free cake recipe myself with vegan frosting that was simply vegan shortening (blend of coconut and red palm oils), powdered sugar, and dehydrated strawberries for the pink color. I also made the ’1′ decoration out of some gold glitter paper, thin cardboard, and a wooden skewer. The cake stand is from Pier 1. It had a really beautiful, tall glass dome that Juni accidentally tipped off the counter a few weeks before her birthday, shattering it into a million pieces. So I kept the cake in my cake caddy until it was time to serve it. I bought a little 6″ cake pan and baked two layers. It wasn’t very much so I also made a dozen or so cupcakes with the same batter and frosting. But first for lunch, we ordered sandwiches for everyone from a local market that came with chips and pickles, and brought San Pellegrino sodas and bottled waters in a cooler.

All in all, it was such a success. One of those gathering that everyone leaves feeling full of joy and contentment. After a rainy night, the sun broke out right as the party got going and the sky cleared to the piercing blue you see in the photos. A beautiful day for a beautiful girl!

{Photos by our amazing friends and wedding/life photographers, Allegro Photography}

Start anywhere.

A few months ago, I looked around my house and realized something had to change. Clutter was everywhere, which meant cleaning was just not happening. And it weighed on us. I suddenly became keenly aware of the underlying mental burden of having a messy house. We were grumpy, frustrated, and overwhelmed by how much needed to be done. It seemed we’d straighten a little and within mere moments the mess would be back.

It wasn’t always this way, but since coming home from the hospital, our focus had been Juniper and Juniper alone. Any housework being done was the bare minimum needed to survive. Laundry (mostly hers), dishes, that’s about it. That’s all fine and good when you’re in survival mode, but eventually survival mode ends and life goes on. I realized I didn’t want my life to go on in a messy way.

And yet… I’m not the best at housekeeping. I looked around at my messy, dirty house and felt overwhelmed. Where do you even start? Well the answer is, somewhere. The answer is, anywhere. Pick a place and go. And so I did.

I picked our hall closet and started making bag after bag of shoes and coats to give away, and some to throw in the trash. The hall closet had been stuffed to the brim with coats and shoes, most of which we never used. It was the bottleneck in much of the downstairs clutter. The coats and shoes we did use couldn’t fit in the closet and so they were strewn everywhere.

A few hours work led to this:

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Success! Over the following few days, I sent Andreas out of the house with four or five bags to drop in one of those giant, yellow Planet Aid bins down the street.

And just like that, with one organized space under my belt, I was on a roll. I had purge fever, and I had it bad. Next up was my closet. Another bottleneck in upstairs clutter. I wish I took a before picture because the difference is shocking. Clothes piled everywhere, practically to the ceiling in some spots. Maternity clothes, old suits from my early career, things I haven’t touched in years, things I DESPISED.

Why was I hanging on to all of these?! I don’t know. I just WAS.

So I began making up giveaway bags but quickly found that cleaning out your closet can be emotional business. We have such weird attachments to our physical belongings, particularly our clothes. I found some amazing tips on purging here and here and used them to guide me. (Do I wear it? Do I love it? Does it fit?) I didn’t realize I should have been doing small purges all along for years.

It honestly took weeks. I didn’t count but I probably sent out at least 15 giveaway bags and two giant bags of straight up trash. I’d work on a little at a time and kept the final vision of a clean, sane, organized closet as my inspiration to keep forging ahead.

I don’t have a dresser so I installed some wall drawers and got some new containers for purses, scarves, bathing suits and other odds and ends. I pulled it all together this past weekend, finishing with a thorough pass through with the vacuum and… ahhhhh. I can breathe again.

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Now every time I put something away, I feel good. Weeks later, I still get a thrill every time I open the hall closet and see everything in it’s place.

Along the way, I made a list of areas that need organizing as well as little projects that need doing in each room (inspired by this). I’m not even halfway through the list – there’s still SO MUCH MORE to do! Big things. Like the giant storage closet off the baby’s room that is a disaster. The office closet which is the catch-all for every sort of random odd and end. The linen/cleaning closet in the bathroom? War zone. My baking cabinet? Eeeesh.

But, I’m getting there. And along the way, I’m falling in love with my house again. For reasons I’ll go into soon, I haven’t LOVED my house in a long time. Maybe really ever. And it matters. Especially now that I spent 97 percent of my time inside of it? Loving your house is important.

Have you been bitten by the organizing bug? Where did you start?

For now.


For now, she beams when I enter her sight line. She scans the room to see where I am and she stresses when I leave. She makes eye contact when someone else is holding her, just to reassure herself. She reaches for me, she calls for me. For now.

For now, I watch over her as she naps and listen for her in the night, even as I sleep. I keep my eye on whomever is holding her and am keenly aware of where they are and what they’re doing, just to reassure myself. I hold her weight, I breathe her in. For now.

I know it’s not forever. But the physical and emotional bond we have right now is tangible and visceral. It is primal, raw. I need her, and she needs me. We haven’t been apart from each other for more than a few hours since she was a week old, other than my unexpected surgery four weeks after she was born.

I don’t know if it’s the time we’ve spent together or what we’ve been through or just the mere fact that I’m mama and she’s baby. All I know is that to be someone’s world, their comfort, their home, is one of the greatest privileges and joys of motherhood that I’ve discovered so far.

It won’t always be this way. One day, she’ll turn me away. One day, she’ll have a best friend or significant other to be her emotional harbor, her physical comfort. Like most mothers, I dream of a lifelong closeness and deep bond. I hope to be one she can turn to for support without judgment or fear. Guiding her when she wants to be guided, letting her find her way when she prefers to forge ahead herself. I hope she always knows the limitless depth of my love for her, and that it’s a love like no one on Earth will ever have for her.

I hope all this as I hold her tiny body close to mine and breathe her in. Trying my best to savor every brief second.

Becoming a shop owner.

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Let’s talk opening an Etsy shop, shall we?

I opened my Etsy shop, mini mintery, without much fanfare back in October of last year, a little over a month after we got home from the hospital. I just needed something outside of medical supplies and doctor’s appointments to devote my time to. It kept my hands and my mind busy (along with a whole heap of knitting, but that’s for another day).

I didn’t overthink it, I sort of just leapt and decided to figure out the rest later. I bought a bunch of blank cards, started with just a few designs, and had a custom stamp made so I could brand them. I didn’t know if there was a market for individually hand drawn and hand painted greeting cards (and I still don’t know for sure!) but I liked making them and figured someone out there might like them too.

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I never dreamed I would end up where I am today. Ha, just kidding. It’s still very much a work in progress and I’ve only made a handful of sales. I devote many hours a week to what I’ll call in-Etsy marketing efforts, helping to run teams filled with other artisans and curating items into collections called treasuries. Which sometimes end up on the front page. If you’re lucky and the Etsy gods are smiling upon you. I really only come up with new designs when I have an idea, or when someone asks for custom work and it spurs me to create.

My biggest challenge so far, aside from getting to the point of generating a steady stream of orders, has been finding a way to fit my aesthetic and creative into what’s conventional for greeting cards. There are so many card shops that are successful because, duh, they cater to holidays. But I prefer non-convetional, non-occasion cards. I want to make something you’re never going to see in the Hallmark aisle. There may not be that many people out there looking to send a “let’s go camping!” or “wanna knit?” card but damn it, I like making them. When I’ve tried to force myself into a specific holiday card, the results have been uninspired and I’ve ended up scratching them.

Of course the question with any venture is figuring out when to pour more time into it, and when to cut your losses. At this point, I’m leaning toward the former, but at the year mark if I’m still roughly in the same boat, I’ll probably have to reevaluate. For now I’m having fun and hoping for the best.

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A mama first.


For a long time, I didn’t know whether I’d ever get to celebrate Mother’s Day as real, living, breathing mama with a real, living, breathing child. So today was the culmination of countless amounts of hope and wondering and worrying and anxiety over that very question. And as many big days in life go, sometimes they don’t live up to the hype. To the vision you’ve concocted in your mind. To the pedestal you’ve placed them upon.

Today was not one of those days.

Today I felt cherished and loved and honored and valued and special. And even though there were tinges of sadness when I thought of the struggle and the losses and my dear friends for whom this day is full of sadness, I enjoyed it despite of that. Hell, I enjoyed it for that. For them. The littles who flew away and the littles yet to come and all the mamas (and papas) who pine in pain.

They are all, always, in my heart.


Enter homemaker.


I never thought I’d be a “stay at home mom” (I still have to pause and think real hard when I see the acronym SAHM). I never judged ladies who stayed home, in fact I mostly envied them, but growing up, in college, throughout my career and even up through my pregnancy and the first half of J’s life, I didn’t think that would really be me.

It took me a long time to come around to accepting homemaker as my title, at least for now. Though I may never have judged it in others, I judged myself for it. And because it was something I was thrust into because of Juniper’s ongoing health issues and medical needs, I didn’t want to embrace it for a long time because as long as I was home it meant she needed me to be.

But it’s not really fun denying your daily existence. Rebelling against it. I’m not a SAHM! I’m an Etsy shop owner! I’m a screenwriter! I’m those things too, mind you, but finally I’m starting to let myself say that I’m also a SAHM. Because for now, I am. And there’s nothing wrong with that.

For how long? That’s the big question. In a way, I feel I’ve been spoiled getting all this time with her. And even as there’s a flicker of light at the end of the tunnel, I don’t know if I can bear to be apart from her for 10 hours a day, 5 days a week. Like, maybe ever. Well, until she goes to school I guess. Then I’ll tolerate it. Plus if we’re lucky enough to have more kids anytime soon, it will become increasingly difficult to justify my salary.

In my dream world, I work from home part-time. I get help when I need it, I make enough to help ends meet, but I’m here. I’m visible and around and involved. Not that working moms aren’t! So not trying to come even CLOSE to the mommy wars because all the women are awesome all the time, working or home. That’s my view. But I need to be visible and around and involved as long as Juni is still struggling with bowel stuff which she may for some time to come, even after she gets her central line out and could technically go to daycare.

(BTW, I know I’m lucky to be able to stay home. Do I worry about money? All the time. We’ll survive but we don’t just want to survive. This would be a nice worry not to have but until I win the lottery, it is mine.)

In turning over my homemaker leaf, of course the overchiever in me wanted to be the best damn homemaker I could be. Which for me is very much tied to keeping a clean and tidy home. Which I don’t really know exactly all of how to do? And if you saw my house four weeks ago you might of wept. The clutter and the knowing that things aren’t clean just eats at you but I didn’t know how to get it under control. I felt helpless. So I turned to the Internet and read a lot of interesting, inspiring stuff from women who are ROCKING this staying home thing.

I’m still no where close to having my house under control but at last there’s a plan.

Step one: rid house of unnecessary crap. Step two: organize necessary crap. Step three: establish a cleaning routine to keep necessary crap clean. Step three is pretty crucial when you’re about to have a baby crawling all around getting her hands on everything. So I made a list, room by room, of what needs to get done. There are only so many free hours to do these things in a day, on top of raising a baby and keeping up with what you HAVE to keep up with (aka laundry and dishes). But I am slowly working my way through it.

I hope to share some of what I learn along the way here on setting up a clean and organized home life. Plus recipes, thoughts, and pictures of big eyes and chubby cheeks. Part of me is still a little squeamish when I look back and read that. Will people find it trite? Meaningless? Silly? Sigh. Maybe. I probably shouldn’t care but honestly, I do. Looks like embracing homemaking is going to take time.

Reclaiming this space.

This was a place that I called home for a long time. My own slightly dusty corner of the Internet. I posted frequently about things both frivolous and true, and genuinely enjoyed having the term “blogger” attached to me.

But then I stopped sharing myself because I was going through infertility, then a difficult pregnancy, then living in the hospital with our newborn, then figuring out life at home with a “medically complex” baby. That’s like four years of not sharing. And while it still scares me to come here and say, “I’m back!”? I kind of want to be back. I miss it here. It’s cozy here.

I thought for a long time that one must have one’s shit together to blog. Because really, don’t all the best lifestyle bloggers at least seem to? Even as they swear they don’t? Of course I know there’s much they don’t share, that the beauty and horror of the online world today is that we present the person we want to be, not necessarily the person we are, but for a long time I’ve felt like a mess.

No more. I’m reclaiming my home. Cleaning out all the cobwebs and corners I’ve turned a blind eye to for too long. I’m reclaiming my body. Giving it healthy food and fresh air and exercise. And now, I’m reclaiming this space. I want to share again. I want to talk about finally recognizing myself as a mother and accepting my current status as a homemaker. I want to talk wanderlust. Running a handmade business. Organizing. Cooking. Writing. Creativity.

I don’t know what shape it will take but I’m excited to see. Hopefully you are too.

Hanging in there.

I should write. Here, there, anywhere. It’s better than nowhere. It’s better than getting lost in a hailstorm of worry and anxiety in the few down moments I have during my day.

I guess somehow I was waiting for the crisis to end before I resumed my regular writing. So I quieted down during infertility, barely peeped during loss, kept tight lips during IUI and IVF, remained silent during a difficult pregnancy. I hardly breathed a word once she was born, and had two surgeries, and was hospitalized for 101 days.

And now we’re home and it’s all good but it’s not. She’s fine but she’s not. My career is on hold while I play full time nurse to my baby girl. It’s hard to talk to anyone because no one has been here and no one knows what it’s like except: my husband, our nurse friends from the hospital, and the various doctors and nurses at Children’s who are still coordinating her care. Oh, and the pharmacists at our infusion company. We’re totally tight.

The hardest parts are not: the g-tube and central line dressing changes. Mixing the PN and priming the lines and hooking her up to the pumps every night. Organizing the weekly boxes upon boxes of medical supplies. Taking her temp and girth and administering meds every six hours. Keeping up pet and personal care despite all that.

The single hardest part is the constant, overwhelming, all consuming… CONSTANT worry. Worrying every time you pick her up that you may tug on something. Worrying that her bowels aren’t doing well. Worrying that she threw up. Worrying about the plan of care you’ve devised for the week/day/hour/minute isn’t right. Worrying that she may never be free of all these things.

This is not typical parent worry. This is anxiety over the health and well being of my only, hard-earned, long-awaited child.

So yeah. That’s how I’m doing, how we’re all doing. Fine but stressed. Okay but worried. I don’t go into the details because it’s far, far too complicated. Instead I simply give a wry smile and say, we’re hanging in there.