Healthy eating is really important to me. I have written a lot about food, I have thought a lot about how a less-meatarian, largely-local diet is best for me and the planet, and I love to cook. I think a lot about what my kids eat too. But, I realized when asked about it recently, I don’t actually talk to my kids about healthy eating, and I rarely label food as “healthy” or “unhealthy,” either. When we talk about food, we mostly talk about how it tastes, or that it’s crunchy, or that it’s yummy, or what color it is, or how many pieces of it there are, since we’re learning words and colors and numbers and stuff right now.
Instead, right now, I’m mostly counting on the message sent by our family eating habits to teach my kids that a healthy diet, one based largely around veggies and whole grains, with little processed food and not a lot of sugar, is a normal one.
Like a lot of people who have spent their lives loving his work, I’ve been pretty sad about Robin Williams’ death. He was just a bright light in the world, and now that he’s gone, things seem a little dimmer. He will be missed.
I’m glad that his tragic suicide is being used to shed some light on the very real problems of depression and suicide. It’s not enough to replace his light, but it’s something.
I have been concerned by some of the rhetoric I’ve seen though, even in well-meaning statements. Mental illness is an illness. It’s one that others often don’t know about, because of things like stigma that keep people from reaching out. But it’s an illness, same as any other chronic condition– with something like diabetes, your pancreas doesn’t work right. With mental illness, it’s your brain. You can’t cure any chronic disease just by “knowing how loved” you are. Or by “knowing God.” Or by “choosing joy.” Continue reading “the light and the dark”
On Mother’s Day, I had the amazing experience of reading part of my story in the Listen To Your Mother Show here in Little Rock. Now, even if you weren’t there, you can see my story and the rest of the amazing stories from around the country, thanks to the magic of the internet and You Tube. Today, I’m posting my story here, but I encourage you to watch some of the other videos too, from Little Rock and around the country. And, coming soon, for the first time, my husband will share his version of this story, both from the perspective of the man who was holding our baby girl next to my bed when I went into heart failure, and from the perspective of a doctor, who probably would have intubated me himself while we waited for the code team to arrive, if there had been a crash cart nearby. Luckily, he didn’t have to. Blessedly, all was well.
Here’s the story of how I discovered I have the heart of a mother:
Many of you are probably aware of the fact that I almost died three days after I had my babies. I experienced an often-fatal complication called peripartum cardiomyopathy, something I had never heard of until it happened to me, but according to The Daily Beast is actually on the rise. The first sentence of that piece, where the woman describes feeling like her head was being held underwater, just felt so true to what I experienced as well– I often describe it to people as feeling like I was drowning inside my own body. As my heart went into failure, my lungs literally began to fill with fluid, and I could actually hear it crackling as I struggled to breathe, before I was sedated and intubated and moved to the ICU. Thank GOD I was still in the hospital 3 days postpartum, because there was a code team ready to save me. If I had not asked for one more day inpatient to work with the lactation consultant on breastfeeding, I could have very easily been at home, where I might have died. (After my near-death, I was put on some serious medicines which meant my breastfeeding days were over, but you could say that my desire to breastfeed saved my life!) Continue reading “Call Professor X, I’m a Mutant”
Today, I’m sporting red pants and red lips for heart health awareness. Most of the attention to heart health this month is on women and heart disease, which is a worthy cause. But this week is also Congenital Heart Defect Awareness Week, though it’s kind of going under the radar. I mean, I have a CHD and I didn’t even know it was my awareness week until a friend told me on Twitter.
Which is really just about perfect, because I didn’t know I have a congenital heart defect until I almost died. The cliff notes version is, my twin pregnancy was very hard on my body. By the end, I developed pre-eclampsia, which is not uncommon for twin pregnancies. I had a cesarean section (due to the pre-e and other factors, like my daughter’s spina bifida, and the fact that both of my twins were breech), but my blood pressure was slow to stabilize, and my counts were low. I received blood transfusions. And on day 3 post-delivery, I crashed, ended up intubated in the ICU, and was in congestive heart failure. What happened to me is known as peri-partum cardiomyopathy, but later, a cardiac MRI revealed the root cause of all of my problems: a congenital heart defect known as left ventricle noncompaction syndrome.
This means that the muscle fibers in the left side of my heart didn’t lay down properly when I was developing in the womb, so the part of my heart that is supposed to pump blood out into my body is weak, and doesn’t pump the blood very effectively. I’ve had it all my life, but my body used a fast heart rate and higher blood pressure to compensate, and so while I’ve never been very good at things requiring stamina and cardiovascular endurance (let’s be real, I have the constitution of a fainting Victorian lady), I never had enough symptoms to know something was wrong until the stress my twin pregnancy put on my body.
This makes me something of a unicorn. My cardiologists are always telling me that no one studies this condition, and it’s super rare, and they’re just sorta trying stuff on me. It’s kind of scary. I don’t really know how the course of this goes, or what to expect, or what my long-term prognosis is. I know that it’s a good thing that the medications I’m on have gotten me back up to a “normal” level of cardiac function. I take a beta blocker and an ace inhibitor. They make me very tired, as if having a weak heart didn’t already make me tired. Last week, my doctor let me try taking less of the beta blocker, though, and I already feel like I have more energy.
So, why am I telling you this? I’m not entirely sure. I guess I don’t like being a unicorn. It’s also a strange thing to effectively have an invisible, possibly life-threatening, disability. I look fine. I shouldn’t be tired all the time. I shouldn’t get so winded on the stairs. But I do.
Looking back, I probably should have discovered this sooner. I was always easily tired and intolerant of exercise. I had slow weight gain. I required (still do) a lot of sleep. I experienced strange feelings in my chest. So, in the name of awareness, here are some signs you should watch for in infants and children that might be worth a referral to a pediatric cardiologist:
Parents should be alert to the following symptoms in infancy:
Tires easily during feeding (i.e. falls asleep before feeding finishes
Sweating around the head, especially during feeding
Fast breathing when at rest or sleeping
Pale or bluish skin color
Poor weight gain
Sleeps a lot – not playful or curious for any length of time
Puffy face, hands, and/or feet
Often irritable, difficult to console
Some children with CHDs may not have any symptoms until later in childhood. Things to look for include:
Gets out of breath during play
Difficulty “keeping up” with playmates
Tires easily/sleeps a lot
Change in color during active play or sports (looks pale or has a bluish tint around mouth and nose)
Frequent colds and respiratory illnesses
Slow growth and weight gain/poor appetite
Complains of chest pain and/or heart pounding
So, this month, do think about things you can do to make your heart healthy, like eating healthy foods and exercising and not smoking. But also think about little signs that might point to underlying problems, and get yourself or your child checked out if you have concerns.
October is Spina Bifida Awareness Month, not that you’d know it, as apparently October is the most crowded of all awareness months, most famously shared with Breast Cancer Awareness, but also Down Syndrome, Autism, Domestic Violence, and Bullying Prevention. To make matters worse, the Spina Bifida Awareness symbol is apparently a yellow ribbon, which everyone else knows is the symbol for supporting the troops, spotted on many a bumper sticker. Basically, I think we need a new month and a new symbol, but they didn’t ask me.
Though “they didn’t ask me” could be the whole theme of my all-too-keen awareness of Spina Bifida in general. They didn’t ask me, and they didn’t ask Claire, if we wanted SB in our lives. They didn’t ask the other 1 in 800 babies born with myelomeningocele SB (the most severe form, what Claire has) either.
I feel like this week has been an effort on our doctors’ part to make sure we’re REALLY REALLY AWARE of this whole spina bifida thing. Last week we made 3 separate trips to the children’s hospital for various tests, and this week we made two trips to talk to the doctors about the results of those tests. And the news, while not surprising, is bumming me out a little bit. In addition to mobility limitations, bladder and bowel issues are very common for people with SB, and though we had been hoping to continue avoiding it, in order to prevent recurrent UTIs and prevent damage to Claire’s kidneys, our urologist says it’s time to start catheterizing to get her bladder fully emptied. This means cathing her every 4 hours. She’ll also now have to take a daily medicine to prevent bladder contractions. A side effect of this medicine will likely be constipation. I know (really, I do) that ultimately this is the best course of action and is what will help her maintain continence as she grows, but for some reason in my head, having to take this step, having to cath, seems like it makes her more disabled, more different, and I just don’t like it.
We also got x-rays and saw the orthopedist, and it looks like at some point, Claire is going to need a surgery on her left leg to fix the way her foot turns severely inward. For the short term, she’s getting a special brace to wear at night, but in 6 months to a year, we’re looking at another surgery. Again, I’m all for whatever we need to do to give her the most mobility and independence, but hearing that my baby needs another surgery is hard.
And yet, we have so much good news too. She got an MRI, and we saw our neurosurgeon, and her shunt is working beautifully. I really credit it with the way her mobility is exploding, and our surgeon agrees. We’ve officially been cleared by neurosurgery, and, barring any shunt malfunction or infection, won’t be seeing her for a YEAR! We’re definitely celebrating that milestone.
So, what would I like you to be aware of this month for Spina Bifida Awareness Month? Yes, I want you to know that sometimes it’s hard. Sometimes there’s more surgery and more hassle and more hard work than we’d like. Sometimes I get angry or sad. But mostly I don’t. Mostly, I focus on the fact that both of our girls are beautiful, funny, joyful, smart, silly, typical toddlers. Mostly, I think that’s what I want you to be aware of– Spina Bifida has challenges, but it’s just another way of being a human in the world.
Last week, my husband Jon and I celebrated 7 years of marriage, and in June, we marked 10 years of togetherness.
Everyone jokes about the 7 Year Itch. But I have it, y’all.
Except…it’s on my finger.
You see, somewhere in the last year, I developed an allergy* to my white gold wedding rings. Sure, some skeevy dudes may say they’re “allergic” to their rings, when really they’re not wearing them so they can mac on chicks, but this is no lie. Wearing my rings has started to cause my finger to immediately break out into a red, bumpy, itchy rash. I figured out it was the gold because my silver stacking rings, a Valentine’s gift that I wear on my right hand, don’t cause the same problem.
“I’m allergic to my wedding rings,” I announced to my doctor hubby one day, showing him the rash. He asked if I meant symbolically or literally, but thank goodness, the only itch I’ve got is the one on my finger. I’m not itching to get out of our relationship or marriage at all.
And my best friend and hubby was handy in diagnosing my problem too. It turns out it’s fairly common for people to develop allergies to the nickel used as an alloy with the gold to make it strong enough to stand up to the wear and tear it gets as jewelry. But he’s seen enough nickel allergies to know I don’t have it, since nickel is also commonly used in the hardware on things like jeans, and I don’t develop a similar rash to the rivet on the waistband of my blue jeans. Also, the gold posts on my pearl earrings have started irritating my ears, too. So, I am forced to conclude, I’m having an issue with gold, not nickel.
I’ve taken to wearing one of my silver stacking bands on my left hand as a placeholder, but I’d really like to get back to wearing my rings again. I hear a temporary solution is to coat the ring in clear nail polish, and a permanent one is to get it plated with rhodium.
As for seven years, I’m happy to celebrate how far we’ve come. Becoming parents has truly been the hardest thing our partnership has endured, far more stressful than moving cross country, grief, and trauma. Still, there’s no one else I’d rather be raising my family and living alongside.
We celebrated lucky number seven with a little road trip to Texas, spending a night in a bed and breakfast in Dallas, checking out the 6th Floor Museum at Dealey Plaza and the Dallas Museum of Art, and then continuing to Austin for LOTS of tacos, a visit to the LBJ library (thankfully for me, my husband indulges my political geekery), visiting with friends, seeing the bats, and eating some BBQ. It was a lovely getaway, and we’re super thankful that family took care of our kids and pets so we could get that time together.
*Allergies can develop at any time, even after years of exposure without event to the allergen. This is why when people tell me they “aren’t allergic” to something like poison ivy, I always tell them, just wait! With enough exposures, you’ll eventually trigger a reaction!