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Feeding Echo and Finding Purpose – Our Life with FPIES

September 25, 2015 by Carrie 3 Comments

A few weeks ago, our local news station asked our family to do a news segment on FPIES. We talk about FPIES almost weekly here in an effort to raise awareness around food allergies, and I’m all about raising awareness wherever and whenever I can. So, of course we said yes.

{Watch our story here.}

Our awesome story teller, Kerry Tomlinson. — Our wonderful story teller, Kerry Tomlinson.

I love the story, I love how well they captured the sweetness of my boy, his gentle, joyful spirit, and most of all his interaction with his dad. The news got about 85% of the story right, and I’m grateful for that. But they missed a few details, and one major detail that I want to express:

Echo’s illness changed everything.

From the ashes of that first year, a new life was born. I don’t mean a human life, (although we were terrified of losing our baby for the first 18 months of his life). But this. This work, this site, this whole idea was formed from the grief.

Hospital — Echo, two days old and fighting for his life after a stroke.

In the summer of 2014, my long-time friend, Jessica, asked me to write our story for The Leaky Boob. I was in the middle of dealing with massive PTSD, chronic mastitis from exclusively pumping milk from boobs that just wanted to quit, a crumbling marriage, and figuring out a way to keep our son alive and thriving in the midst of an illness nobody, even specialists, know much about. He had three “safe” foods at the time: TED breastmilk (wherein I was limited to 12 foods at one point in time), coconut oil, and spinach. Nightmares of feeding tubes and bankruptcy and divorce tormented my sleep, while emotional paralysis, physical pain, and extreme anxiety plagued me during the day.

Echo's second FPIES vomit-to-shock reaction. — Echo’s second FPIES vomit-to-shock reaction when he was 8 months old.

I said yes to telling our story. Beyond the fear and the trauma, I knew other families were dealing with the same issues. They were dealing with the despair, discouragement, and constant barely-subdued terror that their child might not make it. And what if their kid does make it? What kind of life and wounds will this struggle indelibly imprint their little bodies and spirits with? I started three drafts, scrapped them all, and then Echo had a vomit reaction to green beans in the middle of it all. And that was it. The impetus I needed to get it all out in real time.

This season. Trying to keep it all together and almost losing our marriage in the process. — This season. Trying to keep it all together and almost losing each other in the process.

Our story isn’t just for FPIES families, though. It is for every family who has faced unimaginable obstacles and trauma. Maybe it looks like FPIES, maybe it looks like unknown illness, maybe it looks like a brain tumor or infant hearing loss. Maybe it looks like a massive struggle with self-care or divorce or being a terrible friend for a season.

EchoandLance — Echo eating for the first time at a chain restaurant.

Telling our story gave me access to the power I needed to find my way through, even though I never quite knew the next step until I took it. It gave me just enough Brave to inch ahead of my Scared, and continues to fuel the heart of this little corner of the Internet where I believe Everyone deserves a seat at this table.

Thank you for being a part of this community.

Thank you for continuing to give us, and other families, a voice.

Thank you for sharing posts that are relevant to you with people you love.

Thank you for enjoying the food and laughter and tears and gathering here to have a human experience. This doesn’t happen without you.

Thank you.

Love,
Carrie, Lance, and Echo

“Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. They come together and they fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.”

― Pema Chödrön

Honestly Ever After {Part Three}

September 3, 2015 by Carrie 9 Comments

Friends, meet Kelli Martinelli. She is a bright, innovative soul who I asked to write a guest post for you. Kelli has a unique parenting and partnering style that defies social norms, and works for her family. Something that I love about Kelli is her willingness to put everything out there. She never pretends that things are perfect or easy, but there is an inspiring warmth in her tone and outlook. I’m excited to share this with you. While it is always easy to throw stones, especially when we don’t fully understand or agree, I encourage you to open your hearts and minds to Kelli’s story. She’s found a way to make her family and her life work and is brave enough to put it all out there. Honestly. Click here for Part One and Part Two of her story.

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Photo 3: My kids and I right before they left for their annual camping trip in California with their dad. — My kids and I right before they left for their annual camping trip in California with their dad.

When I was younger I couldn’t fathom ever not getting married. That was just the way you did things, that’s the way life moved forward in a comfortable linear fashion. It sounded safe. When I was divorced I couldn’t fathom ever getting married again. That just wouldn’t be in-line with my shiny new “buck the status quo” mentality. Mr. Tennant and I vowed to never marry, but maybe one day to have an exchanging of vows, but with a specifically non-wedding celebration. We discussed it less and less as our magnetic selves swiveled. But being in a relationship that was so staunchly bucketed into “definitely married” or “definitely never marrying” missed the boat entirely. It’s not about the bucket you choose to put yourself in. It’s about who you’re with and what you feel is honest and true between you. It’s about valuing that person even if the nature of your relationship changes.

We are, generally speaking, social and lonely people. The draw of validation from someone can be overwhelmingly magnetic — it often keeps us near someone we would otherwise detach from were it not for the constant attention. It’s apparent evidence that we’re someone worthy of intimate love, and a distraction from ever having to hang out and get to know, truthfully, our own silly selves. We crave that connection. Even as I sit here and write, contentedly eating GORP in bed while my cat bats at my toes and I’m feeling like I’m doing this un-partnered, casual dating and split custody thing pretty well, I crave it. I dream of being swept off my feet by a kind and compassionate man with dazzling eyes and a killer smile and a SF Giants baseball cap and a tattoo of Ferdinand the gentle bull, who inspires me to create and to write and who reads what I write and doesn’t criticize my grammar or run-on sentences and who wants to dance and believes in karma and prefers to eat plants and cleans the toilet ~ around the pissy base, too ~ and who is working hard to make this world a better place and loves people and is motivated and making good shit happen. That guy. That guy who seeks adventure and shares stories and can feel at home away from home because he’s comfortable in his own skin. That guy who can stare at the stars with me for hours on end and not glance down at his phone even once. That guy who doesn’t compartmentalize himself to suit the status quo of a fickle community, he’s himself wholeheartedly, unapologetically, and gives in to whimsy and passion and only allows fear to be a fuel for a new adventure. I don’t know if Mr. Matt Damon and I have a future together, but I do believe in the fairytale, just with a different set of vows.

What if instead of “happily ever after” we vow to live “honestly ever after”? To have and to hold fiercely, passionately, and respectfully, and to honor each other even if the poles begin to reverse. We can’t anticipate what “happily” will be in any moment but right now. But we can commit to being honest, and respectful, and kind. I’m not suggesting that a vow of “honestly ever after” would result in fewer divorces, but I am suggesting it would result in fewer toxic break ups. I don’t know. I’m my own social experiment it seems, but I’d be lying if I didn’t truly believe there was truth in this approach.

My kids are currently on my favorite lake in California with Mr. Swayze and his tribe, people that I loved and laughed with when I was the wife on that annual trip. I helped them pack. Mrs. Swayze and I coordinated their gear and talked about who would purchase more size 10/12 boxer briefs. And as the kids rolled off with their dad in his truck, and I braced myself for that stupid stabbing gut feeling, my phone buzzed in my hand. I glanced down and saw a text from Mr. Swayze, which I’m assuming he sent from a safe spot pulled to the side of the road. It read, “You’re a great ex-wife and baby mama.” It’s not just a community of epic guardians that sprang up from this divorce, it’s a whole new branch of family, and from my perch in this tree, I am confident that it is good.

Thank you for taking the time to read this thought-provoking journey.

Honestly Ever After {Part Two}

September 3, 2015 by Carrie 2 Comments

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My daughter with one of her epic guardians at my son’s baseball game, where we watched with my ex-husband and his partner, all together.

From this divorce a community of guardians arose, which is as epic as it sounds. My kids have multiple grown-ups in whom they trust, and I have multiple grown-ups who I trust want the best for my children. So whenever I battle the stabbing gut feeling that hits me when I watch my kids get picked up from school by someone else, even though I’m right next door, or when my daughter comes home with an un-approved haircut, or when another parent at school assumes I’m my own children’s babysitter and not their biological mother, I try to remember the epic guardians and take stock in that. When I miss my kids on the 4th of July and wince with bittersweet fondness as the families around me snuggle with their own little ones in front of the fireworks, I try to remember the epic guardians who are giving them 4th of July memories that they’ll hold with them for their lifetimes, and I am overcome with gratitude. Plus then I get to hear their stories when they return! They’ll point to all their bruises and use flailing gestures and overtalking to convey to me the grandness of their adventures. And then when they’re with me, I’ll give them other adventures that complement the ones with Mr. Swayze, not compete against them. This practice of sharing and appreciating is the quickest balm to that stabbing gut feeling.

True to my non-impulsive, measured and cautious self that I dream I might one day be, I entered in to a new relationship before a half a year had elapsed on my divorce.

I fell for Mr. Tennant, clever and funny and possessing a brain so puckered with information I often felt like a drooling toddler with a crayon in my teeth by contrast. I introduced Mr. Tennant to the kids a few months in, not as a boyfriend, but as a friend of mine. Mr. Tennant and I were still discovering each other, and I was still discovering life as a single mom. And you know what? That shit’s hard. Take that roller coaster in a hurricane and remove the guard rail across your lap, upside down and holding on with all your strength – that’s single parenting. With time I was Mr. Tennant’s Rose. We were partnered and then shacked up a couple years in. My kids had inherited another epic guardian, someone to introduce them to things that I never could, nor never would have thought to teach them. Like Minecraft. Or Weird Al. But all the polka music and video games and Lego mini-figs in the world don’t point to unending and unchanging perceptions of happiness.

Mr. Tennant and I were honest with each other. For 3 ½ years we struggled in the face of incompatibility. We knew it early on, but dammit, we liked each other. We saw value in each other. We were friends. But we always felt like two strong magnets on swivels, pushing together then pulling apart, pushing together then pulling apart. The truth is I didn’t celebrate him the way he deserved to be celebrated, and he couldn’t do the same for me. So despite fear of a new openness, we released our grip, and instead reached out for worlds that were true and consistently magnetic to each of us. I had to allow myself to be pulled fiercely by a life lived honestly, instead of being pulled intermittently by someone. We waited a month after making the decision before we told the kids. One night after dinner I told them they could go to the pantry and get down the horrifyingly huge jar of leftover holiday candy and pick out a few pieces. Not one! A few. As they delightedly separated the Nerds from the Sweet Tarts, I took a deep breath and let the kids know that Mr. Tennant and I would no longer be boyfriend and girlfriend. But, Mr. Tennant would always be our friend, and in fact, would continue to be our roommate for awhile. My daughter’s lip quivered and she asked “But … will you still cook him food?” I answered that I would if he wanted to join us, and that seemed to satisfy her, and thus the candy consuming continued. Amidst a sugar-buzzed semi-sadness, Mr. Tennant and I toasted teacups and glanced at each other with a shared thought “Well that went as well as possible.”

We still do eat together sometimes. Sometimes we watch a movie or hike together. My daughter still gets sad at the thought of him not living with us come fall, and she cries. She loves Mr. Tennant, her other epic guardian. It’s not like we’re all starry eyed and tie-dyed and know no feeling but effervescent bliss. But we’re being honest. And it’s hard to feel bitter when you know all are being honest in word and emotion. I’ve watched already as Mr. Tennant has re-gained some important pieces of himself that he lost in partnership with me. I’m finding pieces of my own. If a relationship isn’t working, no matter if it’s romantic or friendly or biologically related, and you’ve tried and tried and tried but you’re still kinda treading water in an increasingly murky pool with that person, it’s time to swim to a new part of your waters. Head toward that openness.

Click here for the conclusion in Part Three.

Honestly Ever After {Part One}

September 3, 2015 by Carrie 2 Comments

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My daughter with her dad when she was 3, at the annual camping trip in California. This was the last year that I went.

A few years ago I read an article titled, “Why Divorce Is Good For Children.” I was married at the time. I hadn’t ever imagined myself as divorced. I was in it to win it! What the win it part was, I’m still not sure. My marriage was 10 years old and bore 2 bright-eyed, articulate children who flipped my world on its head and made me see life and relationships through a new lens. “Why Divorce Is Good For Children.” Was it? Is it? Or is it just all SEO headlines and stock photos brimming with smiling, lightly tanned models plus a sidebar of recommended articles with click-bait titles? It was a HuffPo article, so it could go either way …

I’m a child of divorce. In fact, my parents believed in divorce so strongly they divorced each other twice! When they got divorced the first time I admit I didn’t really know what was happening, and I don’t recall how it affected me. I went away to Girl Scout camp, my mom was a troop leader, and when we got back my dad was living with another woman. His girlfriend had finches. And they were really loud. It was the first time I ever hated a bird. When my folks got back together I thought it was a bad idea, and when they separated again, but this time for realsies, I was relieved. Not grief. Relief.

So here I was, in my early 30s, married, and finding myself digging in to an article on divorce. I read it several times through, and then bookmarked it. It was hitting a nerve that I didn’t realize was even there, and it stung. More than stung. It collapsed me. Scarcely unable to keep my head up after 6pm, struggling with making dinner or tending to my brood, nauseous, whispering that word to myself to see if I could even say it … “divorce”. I would read that article no less than 20 times over the course of the next year as I wrestled with the first real re-introduction to myself by way of marital detachment.

The morning that I woke up and felt an urge to lace up my shoes and run a few miles, I knew I was a changed woman. I don’t run. I am not a runner. Do not ask me to run any kind of k with you (unless there are tacos involved, and then … there’s a chance). But that morning my body told me to run, and then my heart started to wake up, and I was afraid, but my body was collaborating with my heart which were together in cahoots with my brain, and I was for once able to recognize and see beyond the fear. Running, for the brief time I was suckered in to it, helped steer me to clarity. There was openness in front of me. I needed a new place to set myself down and re-ground. I took a breath and leapt with these words to my then-husband (who I will refer to as Mr. Swayze, cause he’d like that), “I am unhappy,” I said. And the trepidation with which I said those words and the Bassett Hound grimace on my face told him this wasn’t just dissatisfaction with the living room furniture. This was life altering, and with those words, “I am unhappy” a new world opened up in front of us.

Mr. Swayze and I separated. I moved out. I handled the transition with gentle words, but rough hands, which is as sloppy and misleading as it sounds. Mr. Swayze was mad at me for the way in which I left. He had every right to be. I saw what I wanted in that new openness and then recklessly pursued it. But as the shitstorm swirled around me ~ and I truly apologize for that visual ~ I put out an intention that I vowed to fulfill: one day this divorce would show itself as being good for my children, and also good for me and good for their dad.

Mr. Swayze is now re-partnered to an incredible woman, and poof, now he’s a dad of 4! Which is great, cause my uterus wasn’t going to give him 2 more children, I enjoy sleeping on my stomach far too much to be pregnant again. And now my children have 2 older siblings who are smart and adventurous and respectful and fun, and how could that not be a wonderful thing? Divorce expanded their concept of family! I have another mom to work alongside of, to share in the kid-shuffling, the homework-managing and the Mr. Swayze corralling. Parenting is a helluva job! It’s like constantly making peanut butter and jelly sandwiches, blindfolded, with one arm tied behind your back, while riding a roller coaster, in a hurricane.

Click here for Part Two.

IT’S NOT A BABY! Belly

August 19, 2015 by Carrie 13 Comments

A few weeks ago, we were at the grocery store. The checker looked at my round belly and said, “When’s your baby due?” I cut her off before she could even get the words out and replied with a dead-inside voice, “I’m not pregnant.”

“You’re not? REALLY?!”

“Nope. Not even a little.”

“Wow! Well, I guess it’s harder for us older moms to lose the baby weight.”

Yep. Old and fat. That’s me!

Thanks, lady.

I silently took my groceries and my two-year old son and not-pregnant-but-certainly-looks-it belly and left the store without another word. I didn’t trust myself to speak to her calmly or kindly. All of the terrible insults I could hurl back at her were bubbling up and filling my mouth with their unsaid-ness. Except that’s not entirely true. My mouth filled up with the unmistakable taste of tears, and a Napoleon Dynamite-esque internal monologue of lame comebacks.

Then I got angry at myself for wanting to cry because crying means I care. And I really don’t want to care.

This isn’t the first time my squishy belly has been mistaken for a baby belly. Being frisked at the airport by the TSA agent a few months ago: “You have such a cute bump!” I waited a moment to respond before saying, “Thanks! Due in September! Super excited” because it was easier than going through all of the embarrassment of denying and the apologies from the offending party, or even worse, the justification.

When I tell you that I have dozens of these not-pregnant-but-people-still-ask-anyway moments, I’m not exaggerating. I’ve been asked while sipping beer during happy hour on a gorgeous day. At a baby shower for my BFF from a licensed therapist as I arranged a tray of carrot sticks. Flagged down by a curious neighbor as I walked in from the garden, full of sunshine and good vibes, expecting a hello or request for zucchini and instead getting a “Girl, I had no idea you were pregnant! When are you due?”

I know I’m not alone, Women of the Interwebs. I know you’ve experienced this, too. The not-a-baby baby belly mistake also happened before I had my son, so I can’t blame pregnancy. It’s just my body. It’s where I carry any extra weight. I know the babywatching world gets a faux oxytocin high at the mere thought of squishy baby flesh, the newborn head smell and frail Chewbacca cries from miniature, undeveloped lungs. It’s almost too much for anyone to resist.

But seriously, Babywatchers. STOP IT. It’s none of your business. Commenting on a woman’s body in general without any solicitation from the woman is not only unwanted, it’s inappropriate. As humans, we’re nosy by nature. We want to know all the things. I totally understand. However, some things are just none of our business.

So, I put together a little infographic. Here’s how to know when it’s appropriate to ask if a woman is pregnant. Even if you’re like, 99.9999% certain there’s a baby in that belly, here’s a quick flow chart to help you.

Share this broadly, my friends.

Are you still unclear? No worries! I went ahead and ate a big Indian food lunch, wore some leggings, a formfitting tank tank top, and skipped showering and make-up to create this little video with my iPhone. It doesn’t get any more real than this. YOU ARE WELCOME.

Happy to be baby-free,
Carrie