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Yesterday, I looked at a cross-section of myself.


Hundreds of them, actually. It was like a digitized version of that plastinated human body exhibit by scientist Dr. Gunther von Hagens. Except my cross-sections were horizontal as if I’d been sliced like a salami from sacrum to sternum. It’s a strange thing to flip through monochromatic sections of your torso like an anatomical deck of cards.

“Body Echo” motion tests from Jeremy Cox on Vimeo.

What I saw made me wonder how my liver and kidneys still manage to keep me alive. I saw cysts, hundreds of them, probably thousands, bubbling up around and inside both kidneys and colonizing my liver like an invading army.

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“Where’s the healthy tissue?” I asked my hepatologist, who sat next to me in the examination room reviewing my CAT Scans.

He pursed his lips. “Well. Here…and here, and you can see this area over here…”

It was like looking at a bunch of grapes, some of them plum-sized, and trying to focus on the spaces in between the fruit – the residual gaps, the mean, irregular vestiges of unaffected cells, which have to work so much harder now to make up for the loss of the rest.

“How do they even…function?” I faltered.

“The human body is an amazing thing,” he replied.

This did not come across as a comforting statement, although it really should, because it’s what I’ve got going for me as I contemplate the second half of my life as a PKD patient.

PKD stands for Polycystic Kidney Disease. It’s a hereditary condition in which fluid-filled cysts grow throughout the kidneys, supplanting healthy tissue, and eventually causing kidney failure.

PKD can affect other organs as well, including the liver, pancreas, spleen, ovaries, large bowel, brain, and heart. If it affects the heart, valves malfunction, causing heart murmurs, or worse. If it affects the brain, an aneurysm is likely, resulting in stroke or death.

Considering all that, the ways in which the disease has compromised my liver seem less dire – even though it’s three times the size of a healthy liver and spreads across my entire abdominal region, filling my body cavity like spray foam insulation fills the gaps in a stud wall. This doesn’t leave a lot of room for other useful viscera, like the uterus, the stomach, or the intestines.

My period seems to last twice as long. Digesting food amounts to a protracted, squelchy, uncomfortable process. After eating, I appear to be well into my second trimester. Strangers happily inquire if I’m expecting. My two sons, who have been begging for a little sister for years, will say, “Mumma, is there another baby in your belly now?”

“No,” I explain. “My belly looks this way because my liver and kidneys have cysts, which makes them bigger than usual. It’s like I have cyst babies that grow inside me, but unfortunately, never get born.”

So we call them that now – my cyst babies. It helps me laugh about it. “Your cyst babies look weird,” my boys say.

“They sure do,” I agree.

When compressed, I can’t breathe very well, or at all. In the yoga studio, I need to take a break between Kurmasana and Supta Kurmasana so my lungs have the space to take in some air. My teacher will notice me there, slumped, limbs slack, swollen back heaving.

“You okay?” she whispers.

“Cyst babies,” I say on an exhale. She’s used to it now.

The whole compression thing also applies when crouching over little shoelaces or Lego kits spread out on the living room floor. It applies to stomach sleeping, which I can’t do anymore and miss like hell on nights when my neck is stiff and insomnia seeps in. It feels like I’m tightly packed, which changes how I sit, how I walk, how I laugh, how I hug. If people felt as compelled to feel my belly now as they used to when I carried my sons, they would be surprised at how taut it is, like an over-inflated kickball.

It’s also extremely tender, so when my kids want to wrestle or play Mom Sandwich or come bounding toward me headlong for high-impact hugs, I use my forearms as padding or go concave to avoid a painful collision.

My dad, who suffered from the same disease which took his life a year ago, used to do the same. I’d watch him put his arms out as his grandkids approached him, as much to deflect as to receive – to protect his (not quite comically) distended, Humpty Dumpty midsection without making anyone feel he was pushing them away.

 

 

I sat quietly as my doctor flipped between the scans from two years ago and the scans from last month. I didn’t need him to explain what we were looking at, but I let him do it anyway on the off chance that he would point out some positive indicator, some encouraging sign.

“As you can see,” he said, with practiced reserve, “this area had plenty of regenerative hepatocyte function a couple years ago. Now that same area…”

“All cyst,” I said, flatly.

“Yes, but your numbers look good. You still have relatively high kidney function. And because the liver regenerates, you are not yet in danger of liver disease.”

“Really!?” I laughed, then tried to turn my incredulity into a joke. “So what would you call that liver? Disease-ready?”

“You don’t have Fibrosis or Cirrhosis. You are maintaining.”

“But I want to do more than maintain,” I pressed. “I want to fight this. I want to do my research and understand my options. And no offense, but I’m a second-opinion kind of gal.”

He clicked over to my bloodwork results and pointed to a series of numbers next to a stack of medical acronyms. “When I see those numbers change, we can start talking about more aggressive treatment…cyst decapitation or even transplant. Meanwhile, keep hydrating, eat well, stay active, do your yoga.”

Then he reminded me, as he so often does, that to undergo invasive surgery of this kind, the pros absolutely need to outweigh the cons. “And right now, I can’t promise you they do. These are complicated procedures.” Then his expression changed, from bedside-clinical to something a little more kindly.

“Things can go wrong,” he said. “You can die. Think about the quality of your life right now, your life with your husband and kids. Then ask yourself if your day-to-day is compromised to the extent that you’re willing to take that kind of risk.”

“I hear what you’re saying.” And I really did. I hear it every time I look at my peculiar profile in the mirror.

“But why not get ahead of the game? Why wait until I have twice as many cysts as I have now? My father got to the point where surgery was no longer an option; his body couldn’t withstand it. I don’t want to wait that long. The healthier I am, the greater my chances for recovery. And if the cysts are the disease, why not get in there and remove as many as you can? Wouldn’t that be less taxing for my organs over time? Then in five years, we can do it again if necessary.”

Also,” I added, less casually than planned, “I’ll look less like a pear on stilts.”

The doctor blinked at me. “Promise me you won’t take this the wrong way,” he said, patting my knee. “You are a young, beautiful woman. I know it’s uncomfortable to see your body change. Is it possible that the reason you’re interested in surgery has more to do with how you look than how you feel?”

Now it was my turn to blink at him, and at his hand, which he removed. The words I wanted to say ran through my mind: I have a chronic terminal disease, for chrissakes! What I may look like on the outside has nothing to do with what’s happening in my abdominal cavity, you creepy, patronizing, outmoded piece of….

Or maybe our outsides have a lot to do with our insides. I can often guess when my yoga friends are at the end of an Ayurvedic cleanse. Their gait is light and easy, the whites of their eyes brighten, their skin glows, their hair shines.

On the other end of the spectrum, I’ve watched bodies become addicted to heroin, deplete and die of alcoholism, contract ulcers and shingles from sheer exhaustion and stress. I saw the change in my favorite aunt’s eyes after she endured a massive brain stem stroke. I sat by my father as his liver finally let go. Each of these maladies manifested itself visibly, as plain as the nose on your face, transforming once beautiful, vibrant people into husks of their former selves.

So maybe my doc’s borderline sexist remark was at least well-founded if poorly delivered. Maybe he meant that my physical appearance is an accurate indicator of my renal and hepatic health. It would help me to know that he’s not just placating me when he says I’m doing a good job of managing my illness, in spite of inevitable organ failure.

Later that night, as my bowels slowly churned my dinner down, my stacked deck of deformities flashing through my mind, I looked at my husband across the table. “You need to live a long time, okay?” And then losing all composure: “Please stay alive as long as you can for the boys.”

There’s a 50 percent chance both of my sons have inherited the disease because the gene for PKD is dominant. “The prospects are similar to the flip of a coin,” states one article (a bit too trivially). Never once did these odds make me question whether to have kids in the first place though. As far as diseases go, it’s one you can live with, and for a long time, too. We could get the boys tested, but given the lack of preventative treatments, I’m not sure the knowledge would help us at this stage.

My childhood was mercifully free of any awareness that I might have a genetic defect. It wasn’t until my sophomore year in college that I first experienced the symptoms full on. I remember my dad apologizing to me as I lay in a hospital bed packed in ice with a 104 temp and an infected cyst the size of a grapefruit.

“What a shitty situation,” he said, gripping my hand. “I’m so sorry…this damned disease.”

“Aw, c’mon, Dad. It’s not as if you decided to give it to me.” Tears welled in his eyes then. It was one of the few times I ever saw him cry. I think to ease his burden, I added, “I did somehow end up with all your weird traits though – the scrawny legs, the bunions, the crappy eyesight.”

“And my fabulous sense of humor, too, my dear.”

Now, at 42, I have a far more acute awareness of how PKD will impact the length of my life, and, in turn, how the length of my life will impact the lives of my sons. I can even see, with a fair amount of accuracy, how I might die. But so what? Today, I am alive. If anything, my explicit mortality has helped me live more fully. More gratefully.

For many years, I held onto this idea that I was headed somewhere else, still traveling toward another way of being. When I got there, everything around me would reflect my achievements. My consummate arrival. Likewise, my goals have always been futuristic, elaborate, manifold, involving exotic places, extreme adventure, and New York Times Bestseller fame – as bright and far away as the sun.

Now I have one goal. It’s as close as the thump of this heart in my chest, and all the others have been form-fit to fall within this one: to extend the life of my organs by whatever means necessary. There is no cure for Polycystic Kidney Disease (yet). There are no proven treatments or definitive action steps. But I know what I need to do.

When you see yourself vividly – in cross-section, or at the sheer edge of a cliff at night, or sitting in a deck chair surrounded by your grandchildren – you realize there is no more waiting for life to happen. You realize life is this breath only.

And now it is this breath.

It is not what happens tomorrow. Not the list of house projects yet to be done, or the imagined landscaping you will probably never be able to afford anyway. It is not even that dream of a simpler life on the other side of the world: of that little cabin on a beach by the Tasman Sea, with only your boys and some boats and stories by the light of a fire to fill your days.

When you weren’t looking, that idea of “someday” zoomed in to close range, like Grover right up close to the camera and all out of breath as he illustrates the considerable difference between NEAR and FAR. Someday is like that, right here, staring you down, and a little exhausted by your inability to grasp it, even after all these years.

“I know we’re dealing with a lot these days,” my husband texted from on location this morning, “but this is it. This is what we’ve got. I love you.”

He’s right, of course. We’ve got only this one life. It’s already all around us, waiting for us to notice it, to fill it, to love it. What a tragedy it would be to miss it worrying about death.

And just now the sun has spilled into the room, changing everything. The chimes out the window are signaling in the wind, and the bird that just landed on the end of that rafter tail is cocking her head as if to say, “So what are you doing here?”

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When it comes to holiday gifts, we know what you really want, mama. A full night's sleep. Privacy in the bathroom. The opportunity to eat your dinner while it's still hot. Time to wash—and dry!—your hair. A complete wardrobe refresh.


While we can't help with everything on your list (we're still trying to figure out how to get some extra zzz's ourselves), here are 14 gift ideas that'll make you look, if not feel, like a whole new woman. Even when you're sleep deprived.

Gap Cable-Knit Turtleneck Sweater

When winter hits, one of our go-to outfits will be this tunic-length sweater and a pair of leggings. Warm and everyday-friendly, we can get behind that.

$69.95

Gap Cigarette Jeans

These high-waisted straight-leg jeans have secret smoothing panels to hide any lumps and bumps (because really, we've all got 'em).

$79.95

Tiny Tags Gold Skinny Bar Necklace

Whether engraved with a child's name or date of birth, this personalized necklace will become your go-to piece of everyday jewelry.

$135.00

Gap Brushed Pointelle Crew

This wear-with-anything soft pink sweater with delicate eyelet details can be dressed up for work or dressed down for weekend time with the family. Versatility for the win!

$79.95

Gap Flannel Pajama Set

For mamas who sleep warm, this PJ set offers the best of both worlds: cozy flannel and comfy shorts. Plus, it comes with a coordinating eye mask for a blissed-out slumber.

$69.95

Spafinder Gift Card

You can't give the gift of relaxation, per say, but you can give a gift certificate for a massage or spa service, and that's close enough!

$50.00

Gap Stripe Long Sleeve Crewneck

This featherweight long-sleeve tee is the perfect layering piece under hoodies, cardigans, and blazers.

$29.95

Gap Chenille Smartphone Gloves

Gone are the days of removing toasty gloves before accessing our touchscreen devices—thank goodness!

$9.95

Ember Temperature Control Smart Mug

Make multiple trips to the microwave a thing of the past with a app-controlled smart mug that'll keep your coffee or tea at the exact temperature you prefer for up to an hour.

$79.95

Gap Flannel Shirt

Our new favorite flannel boasts an easy-to-wear drapey fit and a flattering curved shirttail hem.

$59.95

Gap Sherpa-Lined Denim Jacket

Stay warm while looking cool in this iconic jean jacket, featuring teddy bear-soft fleece lining and a trendy oversized fit.

$98.00

Gap Crazy Stripe Scarf

Practical and stylish, this cozy scarf adds a pop of color—well, colors—to any winter ensemble.

$39.95

Nixplay Seed Frame

This digital picture frame is perfect for mamas who stay up late scrolling through their phone's photo album to glimpse their kiddos being adorable. By sending them to this smart frame to view throughout the day, you can get a few extra minutes of sleep at night!

$165.00

Gap Crewneck Sweater

Busy mamas will appreciate that this supersoft, super versatile Merino wool sweater is machine washable.

$59.95

This article was sponsored by GAP. Thank you for supporting the brands that support Motherly and Mamas.

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There's a lot of discussion about the importance of early education—but what about soft skills like respect and kindness? How can mamas teach children important values like cooperation, gratitude, empathy or politeness?

These values are basic, foundational beliefs that help us know right from wrong, that give balance and meaning to life and that enable us to form community bonds with one another. These soft skills are crucial for kids to learn at any age, and it's important for them to be reinforced, both in the classroom and at home, throughout their childhood.

Here are fundamental ways to build character in your young children:

Kindness

Performing random acts of kindness can have a positive influence on both the individual showing and receiving the kindness. As a family, think of ways that each one of you can show kindness to others. Some ideas may include baking cookies for the mail carrier, donating an unopened toy to a local charity, purchasing canned goods for a homeless shelter or leaving notes and drawings for the neighbors. Include your child in the process so they can see firsthand the joy that kindness can bring to others.

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Responsibility

Children have a strong desire to mimic adult family members. Encourage your child to help complete simple chores in and around the house. Children feel a great sense of accomplishment when they can do their share and feel that sense of responsibility. Two-year-olds will enjoy folding towels, putting books away, putting paper in the recycling box and tending to the garden. Older children may enjoy helping out in the kitchen or with yard work.

Patience

Patience is the ability to demonstrate self-control while waiting for an event to occur. It also refers to the ability to remain calm in the face of frustration. This is a skill which develops in children as they mature. While it is important to practice patience, adults should also be realistic in their expectations, evaluate daily routines and eliminate long periods of wait time from the schedule.

Politeness

Schedule a time when the whole family can sit down together for dinner. Model good manners and encourage older siblings and other members of the family to do the same. Use phrases such as, "Can you please pass the potatoes?" or "Thank you." Be sure to provide your child with guidance, by explaining what to do as opposed to what not to do.

Flexibility

Change your routines at home to encourage children to be flexible in their thinking and to try new things. Try being flexible in the small things: enjoy breakfast for dinner, eat ice cream with a fork, have your child read a bedtime story to you or have a picnic in the living room. Let your child know it is okay to do things in a different way.

Empathy

Children are beginning to understand different emotions and that others have feelings. Throughout their childhood, talk about their feelings and share one's own feeling with them as well. By taking the time to listen to how children are feeling, you will demonstrate to them that you care and reinforce with them that you fully understand how they are feeling.

Cooperation

Coordinate playdates or take your children to events where they can practice introducing themselves to other children, and potentially with adults. Find games and other activities that require turn-taking and sharing.

Gratitude

Encourage your child to spend five minutes every day listing the things they are grateful for. This could be done together just before bedtime or after dinner.

Respect

As parents, our goal is to teach children to recognize that even though people have different likes and dislikes or beliefs and ideas, they must treat each other with manners and positivity. Respect should be shown when sharing, cleaning up, and listening to others. Always teach and model the Golden Rule: treat others the way you would like to be treated. Also remind children that respect can be shown towards things in the classroom. Treating materials and toys correctly shows appreciation for the things we have.
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Medical researchers and providers consider a woman's postpartum period to be up to 12 months after the delivery of baby, but too often, health insurance doesn't see it the same way. Nearly half of the births in the United States are covered by Medicaid or the Children's Health Insurance Program (CHIP) and while the babies who are born during these births are eligible for Medicaid or CHIP for a year, their mothers often lose their coverage 60 days after delivering their child. There is clear data showing 70% of new moms will have at least one health complication within a year of giving birth.

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This week, members of Congress' Subcommittee on Health met to mark up H.R. 4996, the "Helping Medicaid Offer Maternity Services (MOMS) Act of 2019, and it was favorably forwarded to the full Committee.

What does this mean? It means that while this bill still has a ways to go before it potentially becomes law, its success would see states get the option to provide 12 months of continuous coverage postpartum coverage to mothers on Medicaid. This would save lives.

As we at Motherly have said many times, it takes a considerable amount of time and energy to heal from birth. A mother may not be healed 60 days out from delivering. She may still require medical care for perinatal mood disorders, breast issues like thrush and mastitis, diabetes, and the consequences of traumatic births, like severe vaginal tearing.

Cutting off Medicaid when her baby is only 2 months old makes mom and baby vulnerable, and the Helping Moms Act could protect families from dire consequences.

The United States has the highest rate of maternal deaths in the developed world, and according to the CDC, "about 700 women die each year in the United States as a result of pregnancy or delivery complications." This is not okay, and while H.R. 4996 is not yet signed into law this bill could help change this. It could help address the racial disparities that see so many Black mothers and Native American mothers dying from preventable causes in the first year of motherhood.

A report from nine American maternal mortality review committees found that there were three leading causes of death that occurred between 43 days and one year postpartum: cardiomyopathy (32.4%), mental health conditions (16.2%), and embolism (10.8%) and multiple state maternal mortality review committees have recommended extending Medicaid coverage to one year postpartum in order to prevent these deaths.

Basically, making sure that moms have have continuous access to health care the year after a birth means doctors can spot issues with things like depression, heart disease and high blood pressure at regular check-ups and treat these conditions before they become fatal.

The Helping Moms Act is a step forward in the fight for maternal health and it proves that maternal health is truly a bipartisan issue. Republicans and Democrats alike recognize the value in providing support for mothers during the postpartum period.

The Helping MOMS Act was was introduced by Democratic Congresswoman Robin Kelly of Illinois, chair of the Congressional Black Caucus Health Braintrust. It was co-lead by Texas Republican Michael Burgess (who is also a medical doctor), as well as Georgia Republican Buddy Carter, Washington Republicans Jaime Herrera Beutler and Cathy McMorris Rodgers and Ayanna Pressley from Massachusettes and Lauren Underwood of Illinois (both Democrats).

"Incentivizing postpartum Medicaid expansion is a critical first step in preventing maternal deaths by ensuring new moms can see their doctor. I'm proud that my colleagues, on both sides of the aisle, came together to put an end to the sad reality of American moms dying while growing their families," said Kelly. "We can't allow the perfect to be the enemy of the good. This is a good, bipartisan first step, but it must be the first of many."

It doesn't matter what your political stripes, reducing America's maternal mortality stats should be a priority.

News

Whether you're having a low-key Friendsgiving with your closest friends or prepping to host your first big Thanksgiving dinner with both families, figuring out all of the menu details can be the most overwhelming step. How much should I cook? What ingredients do I need? How does one actually cook a turkey this big?

But, don't worry, mama—HelloFresh is lending a helping hand this year with their Thanksgiving box in collaboration with Jessica Alba. Because you already have enough on your plate (and we're not talking stuffing).


Here are the details. You can choose from two Thanksgiving boxes: Turkey ($152) or beef tenderloin ($132). The turkey box serves 8-10 people while the beef one will serve 4-6 and both are $6.99 to ship. We got to try both and they're equally delicious so you can't go wrong with either one, but the turkey does require a 4-day thaw period so keep that in mind. And if you're wondering what the sides are, here's a sneak peek:

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  • Garlic mashed potatoes
  • Green bean casserole with crispy onions
  • Ciabatta stuffing with chick sausage and cranberries
  • Cranberry sauce with orange, ginger and cinnamon
  • Apple ginger crisp with cinnamon pecan crumble

While someone still has to do the actual cooking, it's designed to take the stress out of Thanksgiving dinner so you can focus on spending time with your loved ones (or watching Hallmark Christmas movies). You don't have to worry about grocery shopping, portion sizes, recipe curation or forgetting that essential thing you needed to make the meal perfect. Everything is super simple to make from start to finish—it even comes with a cooking timeline.

Orders are open through November 21 and can be delivered anytime through November 24. Even better? You don't need a subscription to order.


ORDER A BOX

We independently select and share the products we love—and may receive a commission if you choose to buy. You've got this.

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My mother's death propelled me to start the process of becoming a parent as a 43-year-old single woman. As my connection to her remained strong in spirit after her death, I was ready to experience the same bond with my own child. I began the journey with Intra Uterine Insemination (IUI), and after three failed attempts at getting pregnant, I decided to adopt.

The adoption process is a lengthy and humbling one—one that includes fingerprints, background checks, references, classes, doing a profile of yourself and your life that birth parents eventually use to choose adoptive families.

After my application was approved, a young couple chose me just a month later. I couldn't believe my fortune. But I had to get to work and prepare the house for my baby's arrival. I bought the best of everything—bassinets, clothes, diapers, car seats… the list goes on. I told close friends and family that it was finally happening.

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But all of this was in vain. The day I was supposed to pick my daughter up, I learned that the birth parents had changed their minds. They no longer wanted to give their daughter up for adoption. As time passed, it was difficult to endure no interest from potential parents but the faith in believing what is meant to be continued. To increase my potential, I enrolled with a second adoption agency.

A few months later, as I was getting ready to try IVF for the first time, I received a phone call to let me know that a woman had selected me to adopt her child. So I opted out of IVF and found myself in a hospital delivery room with the birth mother, assisting her in the delivery of MY child. It was a boy! I was so thrilled, and he was just adorable.

After six years of losses and disappointments, I was able to bring him home and awaited the final word that the mother and father have given the needed consent. I was getting ready to watch the Super Bowl with him dressed in football gear, I got a phone call.

Once again, the adoption agency informed me that the birth mother had changed her mind. That evening, I had to return the baby to his birth mom. I was heartbroken, and my hopes were shattered.

What now? Going back to IVF meant starting from scratch, and that would take a minimum of six months before being able to really start getting pregnant. I was 49 years old, and the clock was ticking. I really wanted to be a mom by the age of 50.

I was in Chicago, recovering from a collapsed lung, when I received yet another phone call from the adoption agency. An expecting mom had chosen me and had already signed over all of her rights. This little girl was mine. For real, this time. But I had to get to Southern New Jersey by Thursday to pick her up from the hospital.

After negotiating with my doctor to give me the green light to leave while recovering from my condition, I hopped on a train, and 22 hours later, I arrived to New York City in a massive snow storm. I took longer than expected to get to her, but after navigating the icy roads of New Jersey, I met my daughter!

She is now 2 years old, and she has changed my life in ways that just can't be fully described. What I can say is that I now understand my mother's love even more and her devotion to me and my siblings, and as I am sharing the same with my daughter, my bond to my mother keeps on growing.

Becoming a mom at 49 was never what I had envisioned. But whether you are trying to conceive or have decided to adopt a child, the road to becoming a parent is rarely easy. I know that inner strength and believing in what was meant to be kept me moving forward.

Life
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