You are invited to read 12 festively original stories in the 12 days leading up to Christmas.
I was eager to do some creative writing, and the holidays provided plenty of inspiration. You can find the stories posted here each day, December 13th through 24th.
These tales will vary greatly in tone and topic. Hoping it will add some fun to your holiday season!
Cheers!
Amber
So many times, comments from visitors have made me cry. Made me feel like it’s all worthwhile, and that life is just wonderful. You give me hope. You give me faith in the world. Thank you to “CJ’s mommy,” whose comment I pasted below, and to all the other amazing parents who’ve taken time out of a crazy, stressful time in your life to leave a comment here. This is not meant as a pat on the back to myself, which is how I worry it will come across, because while this is a message of gratitude to me, I am even more grateful. I am in awe of some of the stories that I’m seeing here in comments. This is good for my soul and I feel it in a very real way. You have no idea how much your words mean to me! Much love to you all. Again, I say, “Thank YOU!”
“It has been a couple months since I last wrote, and I just wanted to say how grateful I am to everything you have written about tube weaning. I found so much support from everything you wrote. We have been involved in the Graz program for 6 weeks now and Cason is doing absolutely amazing. I am so thrilled and when I look at him eat and put just about everything in his mouth I can not believe just 6 weeks ago how LOST I was! You gave me hope, thank you!!
Thank you.”
Clearly, Ava's pretty fabulous. (And she just so happens to be the #1 fan of Yo Gabba Gabba in all the world.)
I’d like to introduce you to Ava. For Ava and her family, tube feeding is a precious gift. I wanted to share her story with you all to show the other, positive side of tube feeding, and to try to help send more supporters her way. She and her mother deserve the biggest and most raucous cheering section possible.
I’ll let Ava’s mother handle the introduction. From Ava’s CaringBridge.org journal, updated regularly by her mom:
“Ava is a smiling, laughing, dancing 5 year old diagnosed with a mitochondrial disease. She loves school and dogs, the computer, and her family, who love HER more than anything in the world. She’s dealt with so much more than she should know, but takes it mostly in stride with an amazing attitude.”
Ava’s diagnosis came after four years of dealing with a host of serious issues and symptoms, from severe GERD to dysmotility to cardiac arrhythmia to hypotonia and on and on and on… a string of conditions that for so long had no concrete explanation. By then she’d experienced an incredible number of invasive, life-saving procedures including placement of a G-tube in 2006, followed by a GJ the next year. Finally, a very specialized type of biopsy revealed her true diagnosis. Mitochondrial disease comes with a sweeping range of challenges. To hear the description of the condition is to be haunted by it. From umdf.org, the website of The United Mitochondrial Disease Foundation:
“Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.”
Clearly, mitochondrial disease takes a vast toll, poses daunting and often heartbreaking questions, and total vigilance is required on the part of caretakers in a non-stop effort to maximize quality of life and encourage and prolong vitality and well-being. Tube feeding is one of many types of ongoing support that kids and adults with mitochondrial disease often require for survival. The type of strength and dedication and refusal to settle that Ava’s mother has demonstrated is impossible to capture in words. Ava enjoys the best possible quality of life given her condition, and tube feeding is essential to this. Look at the photos on her site and you’ll see a vibrant, adorable, happy child. And that smile! Oh my goodness. I imagine that to her mother, Ava’s wide-as-can-be grin is the sweetest reward, the best confirmation of her good efforts, the fuel that feeds her soul. Ava’s mother has continuously and tirelessly pushed for the very best options available, proactively searching out any and all treatments and therapies and support for her sweet child, and diving headfirst into the crusade for a cure through her involvement and leadership within The United Mitochondrial Disease Foundation.
This woman and her daughter are the kind of people that should be celebrated in our society. Why is it that with all the soundbites constantly buzzing at our ears and eyes, we never hear about the Avas of the world, nor their heroic mothers? Love this strong deserves a spotlight. I’m shining a little one on it, and I hope you’ll join me. Post a message of support in Ava’s guestbook–I dare you to resist that smile.
In closing, a well-chosen quote I found on Ava’s site, which seems to sum up her mother’s philosophy:
“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.”
— Shel Silverstein
First off, I have to admit that I entered the web meeting eight to nine minutes late. This will be the opposite of shocking to anyone who knows me.
I was infuriated! I’d been anticipating this thing to a pathetic degree and just finished Dr. Susan Barry’s Fixing My Gaze, a godsend of a book for parents of children with strabismus. (Click here to listen to the NPR story about Sue.) Unbelievably, I was at my computer two minutes before the start time. And only then did I realize I had to download frigging webinar software, and this computer hates me and therefore refused to install it despite several admirable attempts. So instead of thinking about it for two seconds, I called Cody, who was on a walk with Stella so that I could have peace and quiet during the webinar. (Is “webinar” really a word? If so, it shouldn’t be. I hate it.) He said, with no annoyance in his voice whatsoever, “Use the laptop in our bedroom.” So I literally sprinted into our clothes-strewn cave of a room and logged on to an ancient IBM ThinkPad. Thank God it worked, or I would’ve thrown lamps and other breakable items in frustration. Pile of clothing, at least.
Anywho. My coverage, as promised…
By the time I got to the party, hosted by the College of Optometrists in Vision Development (COVD), Sue (I guess I’ll be cozy and call her that) was recounting some of the background laid out in her book. She had 20/20 vision in both eyes. So, in the standard vision tests they give in school, where you read a chart of letters (20 feet away) with one eye covered and then the other, her binocular vision problem went completely undetected. It’s not just because one eye was covered so as to avoid revealing the inability of her eyes to work together, but like Stella, her vision was pretty much fine from far away (say, 20 feet), and not so sharp within a few feet. Because the vision test didn’t reveal the source of her low test scores, she was labeled as a “dim bulb.” Literally. Teachers told her parents to accept the fact that their daughter had low intelligence. Sue, neurobiologist and author Sue Barry, Ph.D., was placed in a “special needs” class with an assortment of children with widely varying impairments and diagnoses. Side note: Sue’s best friend was physically impaired by polio, though she said it was quite obvious his intellect was just fine. Sue never raised her hand to answer questions because she had no confidence in herself. Thankfully, her mother never, ever doubted her high intelligence, and Sue saw and felt that.
Of course, Sue’s mother did more than merely believe in her. She took action that contributed directly to Sue’s later success. She read to and with Sue constantly. More than that, whenever young Sue expressed excitement about or interest in any topic, she would come home to find that her mother had placed a perfectly chosen book about that very subject on her bed. A little surprise, an eagerly opened treasure. Reading was fun.
Sue explained why her mother’s efforts were so powerful. If a person anticipates a reward for an activity, brain activity is generated that changes synapses. By making reading to rewarding and enjoyable, Sue’s mother helped shape her brain! Despite the fact that her binocular vision problem made reading much more difficult than for most, she became a slow but competent reader. She found joy in it, which propelled her through the visual challenges. I wish I could give Sue’s mom a huge hug, and perhaps a parade. Honestly, read Sue’s book. That woman went to bat for her daughter. Much respect.
I have to add that Sue and the moderator further discussed the topic of how to encourage reading in kids who, as Sue did as a child, find it uncomfortable and difficult. For most kids with vision problems that make reading taxing (but not impossible), total avoidance of reading and reliance on books on tape isn’t the answer. They suggested that parents and teachers simply be patient, and take it slow. Start with less challenging material until their confidence and endurance increases. Provide breaks during reading. Small efforts like taking turns reading paragraphs with your child can make a huge difference.
After recapping how her childhood was affected by her vision problem, Sue delved into the story of a boy named Eric (also shared in Sue’s book). For a long time, no one knew Eric had a vision problem. Eric’s eyes looked straight. He could see well from a distance. Bu his vision was poor when looking at things close-up, which made schoolwork frustrating and aversive. As a result, Eric was a poor-performing and distractible student who was diagnosed with and medicated for ADHD! This unfortunate mistake wasn’t corrected until they happened to visit a clinic (for kids with ADHD) that offered binocular vision tests. Only then did they realize Eric’s true problem. According to Sue, following vision therapy, Eric has gone on to become one of the top students in his college class.
The moderator helpfully asked Sue to name any key studies or resources that she could suggest to parents. She cited two:
Reading Strategies in Mild to Moderate Strabismic Ambylopia: An Eye Movement Investigation (published just this year). Key finding: These kids have longer fixations and less accurate saccades.
Randomized Clinical Trial of Treatments for Convergence Insufficiency in Children (a study by the National Eye Institute). This trial resulted in recommendation of a 12-week course of office- and home-based vision therapy.
Note: Sue also suggested that parents visit COVD.org to check out their “Research and White Papers” and reminded us that the chapter notes in her book are full of references to the wealth of research and studies cited.
Because the point of this “webinar” was to empower parents and educators to better support children with vision problems, the moderator (again, very helpfully) asked Sue what activities she found most enjoyable as a child. My ears perked up. This is about building confidence, and focusing on strengths rather than worrying about weaknesses! But when I heard what she said next, as she began her answer, I got a tiny bit sad. Because she explained that ball sports were difficult and not very enjoyable at all, as they involved demanding eye tracking which requires coordination of the two eyes. She just couldn’t follow the ball, puck or other fast-moving object well enough. So, while it makes no sense and we really don’t know what Stella’s vision will be like or if she’ll even be interested in sports, I got a little misty. Maybe Stella won’t be able to play basketball. Or softball or tennis. Maybe she won’t get the same joy out of the sports that sustained me through middle and high school. (Sorry for the tangent.)
BUT. Sue said that less visually demanding sports like swimming and running (and I’ve heard ice skating is also a favorite of strabismic kids) were very enjoyable to her. In fact, she may’ve had an advantage. In Fixing My Gaze, Sue gives many examples of how the brain compensates for challenges in one area by building up abilities in other areas. That’s basically my lame-ass explanation of neuroplasiticity. In cases of injury or disability, the brain adapts to help us figure out new ways of doing things. In her book, Sue describes a key realization during a vacation to Hawaii–she was far better at finding the way back to their accommodations at night, though a dark and winding path, than the rest of her family. She couldn’t rely as much on sight, and other senses were filling in the gaps (thanks, neuroplasticity!). Her mind seemed to note how her body moved and felt as it moved down the trail, and she was able to navigate easily and intuitively while her better sighted companions were lost.
Driving a car down the street was a whole different story, however. She was a terribly slow and unsure driver who actually designed her entire life around avoiding the activity. That was her prime motivation for beginning vision therapy–not a belief that she’d be able to see in 3D after 48 years of living in a flat world. After all, she’d been told that after early childhood, this type of correction was simply impossible.
Sue admitted that she often receives desperate emails from people with vision problems. They plead for help in figuring out a way to improve their vision, as past efforts have failed. Wisely, she pointed out that this desperation is a sure indicator that their current doctor is not listening and responding to their concerns. She urges people who feel unsupported and hopeless to find a new doctor right away. An easy way to find one who specializes in vision therapy is to go to COVD.org and enter your zip code in the upper right corner under “Locate a Doctor.” Only a real expert who specializes in binocular vision can help. In other words, you need a developmental optometrist, like the one we were lucky to find for Stella and through whom I found out about this interview with Sue. Hooray!
In the Q & A period at the end of the session, a listener asked if vision could regress following vision therapy. Sue paused a bit, and explained that beginning at age 48, she did vision therapy for one year. This entailed one day a week in the office of Dr. Ruggiero, and 30 minutes a day at home. While her vision has retained its dramatic improvement in the years since, she admits that she still does a small amount of vision therapy at home, just to be proactive. Sue noted that while adults can make amazing advances with help from to high levels of motivation and concentration, children are in a much more advantageous position. A child’s mind is more elastic, and her visual system still developing. For a young person, say, six months or so of vision therapy could very well do the trick, their eyes more quickly trained to work together and new mental habits more easily entrenched, quite possibly for life. With, perhaps, a tune-up here and there (in the form of vision therapy) as an adult.
It was clear to me during this meeting that Sue and her buds at the COVD are trying to get the word OUT! Not only in regards to better, earlier detection of vision problems, better support of children who have them, and awareness of the effectiveness of vision therapy, but also about the widespread belief that there is a critical early window for correction of vision problems associated with strabismus. As Sue put it, conservatively, “the ‘early window’ dogma is overstated.” Their shared hope is to educate eye doctors about vision therapy so that they will then “lay out options for their patients.” A booming AMEN to that.
In closing, I’m so glad I listened in. It helped me realize that I need and want more clarity on exactly what Stella is dealing with. I know she has accommodative esotropia, which is a type of strabismus, and has started down the path (at least) to ambylopia, hence the patching. But do anisometropia and convergence insufficiency also apply? They seem to, especially the former, but I’m not sure because no doctor has ever used those terms in regards to her. Knowing how these terms fit with Stella, or not, would help me interpret and apply what I’m learning. I’ll be bothering her eye doctor even more now. Thanks, Sue! Sorry, doc. (Not really.)
I hope my wordy recap was helpful to someone. That said, you can get all of Sue’s important findings and insights in Fixing My Gaze. As the cover attests, it’s a must-read for anyone interested in vision or our amazing, adaptable brains. Seriously, I have a new appreciation for my eyes and the contents of my cranium. Now if only I could make my keys stop disappearing….
Scares the living crap out of me: Fashion bras for four-year-olds. With defined cups. And no straps. (Video from Jessica Gottlieb.)
Gives me such hope: Chelsea Baker, a 13-year old Little League 65-mph pitcher. With a freaking knuckle ball. And stylish GLASSES.
P.S. According to ABC News’ “Person of the Week” story, Chelsea’s mom entered her into all kinds of pageants early on. “But Chelsea didn’t want to wear diamonds, she wanted to rule them.”
Meet Heath. Ain't he sweet?
Remember Zander? Well he’s got company. (The tube-free ranks are growing.)
Sadly, I kept putting off this post because the hugeness of the triumph deserves a truly well written, heartfelt description. Which takes time and energy that I’ve been lacking, though I’ve so wanted to muster it! But then I realized that I can’t tell the story any better than Jenny, Heath’s mom, an incredible writer and an amazingly intelligent and unstoppable mother. So I’m just going to give you the highlights and point you toward the blog that documents Heath’s journey: The Crunchy and the Smooth.
Heath is 15 months old and was 100% tube fed until a couple weeks ago. The need for his g-tube (gastrostomy button) was prompted by his difficult birth and the immediate, medically intense aftermath. The fly-by overview, in Jenny’s words: “cord wrapped tight around his neck, Apgars of 0, ambulance transport from a country mouse hospital to a city mouse NICU, diagnosis: hypoxic brain injury.” As the result of many necessary and lifesaving but overwhelming and traumatizing medical procedures that took place in the area of his nose and mouth (mainly intubation and suctioning), Heath developed Posttraumatic Feeding Syndrome. Until recently, to defend himself from further invasions, he batted away any food presented to him. He was scared, and who could blame him? The answer, his parents realized, was to build trust, apply no pressure, and to let him feel hunger and interact with food on his own terms (play picnics, for example).
I want to pause here and clarify, because “brain injury” is vague and doesn’t paint an accurate picture of Heath. While motor areas of Heath’s brain suffered injury during his birth, Jenny explained to me that his brain is repairing itself thanks to the amazing processes enabled by infant neuroplasticity. The ongoing repairs are evident, as I’ve noticed leaps in his development in the short time I’ve known Heath. Anyone who lays eyes on him can see that he is thriving in every way. He is one of the happiest, sweetest, most engaged and engaging babies I’ve ever met. He’s got a sense of humor. He communicates and makes friends easily. His weight is great. He’s meeting developmental milestones a little later than most, but he’s getting there–at his own happy pace (just like all babies, really). Of course, his mother has sought out various ways to support him in his physical development, including occupational therapy, movement sessions and even yoga–and he’s way better than me, seriously.
After much research, various forms of therapy, eye-opening revelations, and inspiration from the Graz model, an intensive wean was planned. The journey began on May 9th, with hands-on support from Dr. Markus Wilken, a psychologist with specialized expertise on feeding adversity. He came to the U.S. to help wean Heath as well as two other tube-fed children, who began eating faster than anyone expected! (You can read about Kai and Rosie’s simultaneous weaning successes at The Crunchy and the Smooth, as well.) Over his career, Wilken has helped wean more than 400 children from their feeding tubes. He leads the tube weaning program at Princess Margaret Hospital in Darmstadt, Germany and together with Martina Jotzo runs The Institute for Psychology and Psychosomatics of Early Childhood.
Jenny’s blog has all the weaning specifics, but I’ll say that it’s been quite a ride (as in nauseating ups and downs) for Heath and his parents, as most weans are. But, with no doubt, the weaning effort has been successful. The progress Heath has made is staggering. In short, and I am in complete awe though I never doubted he could do it, Heath has become an EATER. He is enjoying a diverse array of foods, with more and more being added to the menu each day. I’m smiling because Heath’s life is forever changed. And because any parent of a tube-fed child who reads this will experience the sensation of their heart doing a back flip within their chest. Brave Heath is going to help so many babies and kids escape from the limitations, pain and decreased quality of life (for the whole family) that comes from extended tube feeding–not just the physical and psychological effects of the tube itself but from the anxiety and helplessness of tube feeding with no end in sight, when your child has (often after much hard work, therapy, recovery) the ability but not the willingness to eat. The parents who stare into a proverbial black hole whenever they ask doctors or wonder to themselves about whether their child will ever be able to eat–they will discover hope in Heath.
To say that Heath’s mom deserves credit is such a vast understatement. The roller coaster ride she (and her wonderful husband) have been on since his birth, when Heath literally had to be brought back to life and the 35 terrifying days in the NICU that followed, is a testament to not only her strength, but her inestimable love and grace. I know why Heath smiles so much.
Practically speaking, this very smart woman is an accomplished journalist. You can tell by the quality of her writing–and the research and outreach to experts across the globe that she executed in her quest to empower Heath with the gift of autonomy and the joy of eating. So, parents of tube-fed children, please check out her Resources Page to hit the jackpot in terms of insights and data and all kinds of valuable, rare informational gems on the topics of tube weaning, tube feeding and associated trauma.
To everyone reading this… I hope you’ll go to The Crunchy and the Smooth and post a few cheerful and supportive words in the comments section. Heath has come a long, long way, but there is still patience and perseverance required by this family as they follow Heath’s lead and adjust to a whole new paradigm.
To Heath, Jenny and the man known as “Peanut”… big love, loud applause and quiet, awestruck respect from me, Stella and Cody. Enjoy every lick, bite and gulp! (We know you will.)
How about a little dose of “bad ass”?
I had the pleasure of meeting Erin Clark during my time as a copywriter at an ad agency. Erin managed a couple of the accounts I worked on. At that time, she was at a crossroads–dealing with the fallout from a divorce and wading further into the waters of single parenthood. She was always very honest and open, whether about what the client was actually saying and demanding (no sugarcoating, but no panic either), her addiction to designer jeans, or her motherly pride and concern about her girls, who were “tweens” at that time.
Unlike me, she doesn’t have a self-torturous tendency to jump to the worst-case scenario. She’s a stunningly positive person, as evidenced by her near-permanent smile. Inhumane deadlines and outrageous client demands couldn’t diminish it. And it turns out, concussions, bloody noses, and cracked ribs can’t either.Those are the three injuries she’s sustained in less than one year on the track in the Jet City Roller Girls, a flat track roller derby league based in Everett, Washington.
Here’s a woman who can push through fear, take a hit, and get back up again. A valuable lesson for any mom. (It’s a particularly well-timed message for me.) Here is my interview with the newly transformed Erin Clark, or as she’s known in the rink, Devilynn Syde (#666).
Life and Times of Stella: Motherhood is not so new for you. But roller derby is! Wow! What prompted the decision to become a derby girl and how has it affected you?
EKC: Prior to derby, my hobbies consisted of watching TV and shopping on eBay. Not very productive, and certainly not healthy or character-building. I’d always been envious of those who had hobbies they were super passionate about, hobbies that were an away-from-work outlet… something that provided different challenges, and an opportunity to meet new people. Derby has provided this–and then some. It has, quite literally, turned my world upside down. It is the best thing I’ve ever done for myself, and my girls, without question.
My interest was initially piqued by a friend of mine telling me that he had taken his family to a Rat City bout, and his comment, “I can TOTALLY see you doing roller derby.” I thought about it for a minute, and ultimately agreed. The girls and I went to our first bout, I got some information about how to get started, and dove right in. The toughest thing was deciding which league to try out for. I ended up deciding to give Jet City (the Everett league) a try, for three reasons: one, they had a boot camp coming up, Rat City did not. Two, a friend from my childhood was on the league and had nothing but good things to say. Three, Jet City teams practice twice a week… Rat City had up to five practices per week. Not ideal for a single parent. I went with Jet City, attended boot camp, and was picked up by Camaro Harem.
Life and Times of Stella: How hard was it to enter the derby world? How were you tested and challenged along the way? Ever want to give up or were you 100% confident and determined the whole way?
EKC: “Booty” camp was HARD! I skated a ton as a kid, and occasionally took the kids to Skate King for a public skate as an adult…but derby is an entirely different form of skating. A whole new world. There were nine girls in my booty camp. Booty camp is eight weeks long, four practices per week. I was one of the weaker skaters when I started. I went to each practice feeling sick to my stomach. I knew the entire league was watching me, and I genuinely felt like I sucked. I definitely was NOT 100% confident, at any point, during booty camp. There were several times that I considered quitting, due to not feeling good enough. I was tested and challenged at every single practice. I never considered myself a competitive person… derby has brought that out in me, in a big way. Initially, my goal was to not be the worst skater in camp. Towards the end, I strove to be the best. Mostly, I just didn’t want to look like a dumb-ass. Despite growing as a skater in that eight-week period, I wasn’t sure I was good enough to be picked up by a team. The anxiety and pressure to succeed during that time-frame was probably the most intense and overwhelming experience I have ever had.
Life and Times of Stella: What lessons has derby taught you? Are there lessons or benefits that moms in particular can glean from derby?
EKC: The most important thing derby has taught me is to be patient, and always always ALWAYS focus on the positive. Learning to play derby is an evolution. It is impossible to be awesome right off the bat. It takes time to learn the rules and master the skills. Allowing yourself to get easily frustrated… or bashing yourself for all the things you are doing wrong… have a negative impact on progress. I did this at first, and learned my lesson the hard way. It is SO much more productive to focus on the things I am doing well, and recognize that there is always room for improvement. This is absolutely something that can be applied outside of derby. I’m typically a glass-half-full person anyway, but I definitely find myself using this philosophy more in my parenting now vs. my pre-derby life.
Life and Times of Stella: What do your daughters think of your roller derby career? Are they proud? Inspired? Jealous?
EKC: My kids absolutely LOVE the sport and are having a great time. I sincerely hoped that would be the case, but of course you don’t really know until you try it out. I didn’t jump into this lightly. One of the main reasons I took on this endeavor is because it is family-friendly… and is something all three of us can participate in together. I had many conversations with my daughters prior to trying out. I needed to make sure they would be okay with the time commitment (which is huge), and an interest in the game itself, as I fully intended to drag them with me to all associated events and activities. They are both very involved (Elly plays, too), and really enjoy the community aspect. Like me, they now have a wider circle of friends who love and accept them. They are both very proud of me. They like to tell their friends that their mom is a derby girl. I know it was my involvement that inspired my younger daughter to play. My older daughter doesn’t feel it is a good fit for her (she doesn’t like the idea of hitting/hurting people) and has definitely expressed some jealousy as a result… but I try to shift her focus to other areas of contribution. She is a fantastic photographer, for example. So, she can take pictures of her sister and me playing. [insert big smile]
Life and Times of Stella: Best and most challenging aspects of roller derby life?
EKC: The biggest challenge is by far the time commitment. I’m skating five times a week. In addition to my own team/league responsibilities, I’m also coaching a junior team (Elly’s team), which takes up even more time. I love it, but as you can imagine, it takes a huge toll. I’ve lost touch with my family and non-derby friends as a result. Dating is pretty much impossible. I have a hard time keeping up with domestic tasks. I’m away from my daughters three nights a week. I just don’t have enough time to get things done. It’s hard. The other big challenge is being okay with my skill level… accepting that I’m still a work-in-progress. Staying positive, when I’m not nearly as good as I want to be, is a struggle.
The best part of derby is by far the support and encouragement of my teammates… and being surrounded by such a fantastic group of women. I’ve never played a team sport before, so this feeling of unity, the pursuit of a common goal (outside of a work environment) is new for me. It is truly hard to put into words how amazing this feeling is. But, suffice to say, I absolutely love it.
Life and Times of Stella: How old are your daughters, and what is the biggest parenting challenge you face right now?
EKC: Emma is 14 and Elly is 12. They are good kids overall, but of course there are challenges. They are in their teen years, and they are girls. In this day and age, that alone is a scary thing. The way that girls dress and interact, and their accessibility via online networking tools, goes WAY beyond what I experienced at their age. It requires close monitoring and boundaries. Because I’m away from home quite a bit, I have to be extra diligent here… which is often hard. I trust my girls, but don’t trust others. I do what I can to keep them on the right path and, of course, safe from harm. I worry about both my daughters, for different reasons, but don’t want to be one of those paranoid parents, ya know? In general though, I’d say the biggest challenge really is their access to things and people that should be off-limits.
Life and Times of Stella: You said that as always, you’re open to discussing anything. So, exactly how long ago was your divorce, and how did it affect you and the way you mother your daughters?
EKC: My ex and I separated in September of 2005. Our divorce was final in February of 2006, so I’ve been divorced for four years. We attempted to co-parent the kids, but had an exceptionally difficult time communicating, so never really got the hang of that. So, we pretty much each parented in our own way when the kids were with us. When my ex moved out of the state (December of 2007), I retained sole custody of the girls. The girls visit their dad a few times a year, but I am ultimately responsible for their parenting. This was a bit of an adjustment, but we’ve managed and are doing fine. It sometimes sucks to be doing everything by myself… but I like to think that I will eventually have a partner who will help balance things out. That is a whole other topic, though.
Life and Times of Stella: Is there anything you worried about when they were little that you now realize was a total waste of time? Help us worry less!
EKC: Hmmm. This is a good question. I’m not an excessive worrier by nature. But there are two things that come to mind. One: Don’t compare your child to others. Just because someone else’s kid does something earlier than yours does NOT mean there is something wrong with your child. All kids develop at different rates. I remember that being a concern when my girls were younger. Another thing… if your child wants to express herself/himself by wearing clothes or a hairstyle you wouldn’t be caught dead in, let them. Trust me, you’ll have bigger battles later. Your child is not you, after all. Individuality is a good thing–even if you think it means your kid might be perceived as weird.
Life and Times of Stella: What is your biggest fear and biggest hope for your daughters?
EKC: That’s easy. My biggest fear is that my kids will be harmed in some way, or go down a bad path and be unhappy. My biggest hope is that they will work hard and be successful and happy. I could expand on either statement… but it really comes down to unhappy vs. happy. I choose happy!
Life and Times of Stella: Advice for other parents of girls? Especially those of us with ones that are wee and, try as we might, can’t predict all that’s in store.
EKC: I think the biggest thing is teaching them how to be safe and use good judgment at all times. I encourage openness and honesty in my house, something that wasn’t truly valued in my upbringing. Remember what it was like for you as a child or teenager, and recognize what options are available for your child in this day and age (specifically, things that could get them in trouble). Assume that they will want to experiment and stretch boundaries. Be available to guide them in the right direction when they are tempted to try things you disagree with. Be willing to talk about things that make you–or them–uncomfortable. When they are old enough, be honest about the challenges and temptations in your past. Allow them to learn from your mistakes, and expect that they will make their own.
Today isn’t just another Tuesday. It’s a very important day. Today, February 9, 2010, is the day Alexander (Zander or Zandy to those who love him) left his G tube behind. For good! I can’t tell you how huge this is.
Due to one of the most severe cases of frank aspiration ever seen at Seattle Children’s Hospital, Zander required a feeding tube for a year and a half (very close to his entire life). Early on, it was discovered that most of the milk he swallowed ended up in his lungs. He started off with an ND tube (like an NG tube that goes further down, indicated only for short-term tube feeding), but it soon became clear that a longer-term J-G tube was needed. At that point, he couldn’t handle a G tube, inserted into the stomach, because food that high up in his system could be regurgitated and cause aspiration. The food had to go directly into his intestines, via G-J tube, to avoid the threat to his lungs. (Much later, though, he transitioned to a G tube.)
Any type of swallowing put sweet Zander in danger. When he got a mere cold, respiratory distress was pretty much inevitable. It was a terrifying journey for the whole family, with a most uncertain destination. They didn’t know where it would lead. They were stuck, in so many ways. Tube feeding has a way of cramping one’s mobility and social life and sanity.
Then it happened. Late last summer, Zander passed a swallow test. Finally. It was his fifth one. He’d failed the four prior, because he was still aspirating. Amazingly, he at last demonstrated the ability to swallow. But could he really EAT? Did he have the willingness? Not at first. He needed to build oral motor skills. He needed to learn to not be afraid of food. He needed to feel hunger, which tube feeding obscures or annihilates. He still had a road ahead of him. So they forged ahead. Unbelievably, there were just two occupational therapy sessions. The work was done at home. They made food “sexy,” conscious of being happy when they ate and letting Zander see them happily eating. They allowed him to touch, and — until he got teeth — gum at flavorful food. They dipped his pacifier into gravy, sauces and juice. Still uncertain, they were hopeful and proactive, even after all they’d been through.
Slowly but surely, Zander began to eat. At first, just a sip from a straw or a bite of a cracker. Breakthroughs seemed to happen when they were behind schedule, when hours had passed since his last tube-fed meal and he was overdue for his next one. On such an occasion, he grabbed his mother’s Jamba Juice and guzzled three ounces in what seemed like mere seconds. Confidence and ability grew in tandem. The percentage of his diet enjoyed orally grew ever so slightly over time, until it hovered at 50%. (That’s as far as Stella ever got, by the way.) That’s when Alexander’s mother, based on research and gut feelings and a few supportive voices, took an incredibly brave but wise leap of faith. She just stopped. She stopped using the tube, and let Zander take flight.
Thirty days later, that would be today, Zander had a check-up with his wonderfully thoughtful, appropriately cautious, yet totally reasonable pediatrician. She saw that since commencement of weaning, he’d gained a bit of weight, and grown taller. She looked at him and saw a happy, healthy, NORMAL boy. And she said that the tube could go. Zander’s mom removed it this afternoon. She still feels a bit dizzy. Makes sense, though. Her world is spinning, in the best possible way.
Yes, I’ve met Zander’s mom and I liked her instantly. She’s got wisdom and laughter in her eyes. Yep. A killer sense of humor, and a shrewdness that could put any seasoned lawyer to shame. So, as big a day as this is for Zander, I find myself just as happy, if not more so, for her. She got him here. Her strength. Her determination. Her unwillingness to settle. Her ability to take a hit and get back up, in the face of anxiety. Oh, the anxiety. She didn’t let it stop her, and that’s something a lot of parents could learn from these days.
She’s been to hell and back, probably saved her kid’s life more times than she can count, yet she’s got enough energy left to fight for other little ones like Zander. She’s become their much-needed advocate. She’s already inspiring others, and pushing for change. Better care is needed for kids on tubes, a technology that is outpacing our understanding of its impact on children and their development. And, as she and I both learned, there is no end in sight. Kids and babies whose core issues are resolved remain tube-fed for years, because no one knows how to wean them. So few in the medical community are brave enough to at least give them a chance to eat on their own. Well, she’s stepping up to the plate. But that’s just business as usual for her. I’m going to support her however I can.
Zander now has two “belly buttons”, the last evidence of his medical journey. It’s a new, tube-free world for this family. A time of joy and nervous transition to an alien concept called “normality.”
The next time your child savors mac and cheese, or any favorite food, take a minute to appreciate it. And raise your glass–hold it extra high–for Zander and his mom!
(Much respect.)
I’d like to introduce you to my cousin Jennifer. There are a few things you should know about her. First off, she’s really, really smart. Or as they say in Massachusetts, where she lives and where I’m from, “wicked smaht.” Like, she could’ve gone to Harvard. But didn’t choose to. Which brings me to my next point: She doesn’t care about fancy, superficial bullshit that doesn’t matter in the end. She wanted to stay home with her daughters, four-year-old Marley and 14-month-old Rudy, and made sacrifices to do it.
Jennifer, sharing a moment with Marley and Rudy
In addition, Jennifer faces challenges that many moms don’t. Her daughters have a health condition that, while not life-threatening, requires extra care and calm on her part every single day. Oh, Jennifer’s mom also has severe health issues requiring not only lots of extra care and calm, but (as you’ll learn below) life-saving measures from as far back as when Jennifer and her sisters were in elementary school. Maybe that help explains Jen’s toughness. In any case, Jen handles motherhood and life in general with grace and a sense of balance and realness that I truly admire.
She very rarely, if ever, complains about anything–okay, unless hard cider is involved. She can laugh just about anything off. To quote Tim Gunn (someone her daughter Marley can do a pretty darn good imitation of without even trying), she makes it work.
Life and Times of Stella: Your blog is a very honest and uplifting take on motherhood. How did you come up with the name “Sweet Futility“?
Sweet Futility: First of all, it’s weird that anyone who wants to check out my blog won’t be able to since I made it private about a month ago. Someone I didn’t know left a comment that may have been innocent, but I felt like protecting my kids just in case it wasn’t. Maybe eventually I’ll open it up again. In the meantime, anyone who’s curious can leave their email in your comments section and I’ll send along an invite? I guess? (Life and Times of Stella notes: Or readers can just email me, and I’ll relay the info to Jen at Sweet Futility.)
A friend actually uttered the phrase “sweet, sweet futility,” during one of Marley’s tantrums. He was witnessing her wrath for the first time, and foolishly trying to dismantle her craziness. I told him it was futile, and then he called it sweet, and right away I thought that it was a fairly accurate description of parenting. Because really, as parents we’re in charge of some things, but ultimately, our kids are going to be who they’re going to be. And it would be wrong to take that individuality away from them. Which is what I tell myself when my daughter Marley asks for things like POM-POMS and swoons over anything pink and sparkly.
Life and Times of Stella: On your newly exclusive blog, you revealed that Rudy and Marley have a condition called x-linked hypophosphatemic rickets. How does it impact everyday life for you and them?
Sweet Futility: This form of rickets affects their bone development, and my understanding is that without treatment, their little bones will bow as they grow and cause them a lot of stress and pain. The condition can affect their stature, which may be why my girls are in the first or second percentile for height. Daily, I have to make sure that they’re taking phosphorus and vitamin D supplements; frequently, I take them for blood work and check-ups with their pediatric endrocrinologist; annually, they have x-rays and ultrasounds to monitor their growth.
Because my husband has this condition, and because it’s x-linked, we knew that any girls we had would have rickets. I think that helped me to take it in stride. It wasn’t a surprise or anything. And while all the medical appointments are time-consuming and therefore, often irritating, I know that this isn’t anything life-threatening. I mean, I worry that like their father, they’ll have terrible knees and have to deal with pain and maybe not even have the option of going for a run if they want, but I know that in the grand scheme of things, my kids are healthy, and I’m lucky.
Life and Times of Stella: Rudy and Marley share a room. What was behind that decision and how is it going?
Sweet Futility: After Rudy was born and I asked the doctor and nurses to confirm that she was a girl, I was crying and murmuring, “I’m so happy that Marley has a sister.” I have two sisters, so of course that’s all I know, but I just think they’ll have each other’s backs, growing up and as adults, in a way that a brother and a sister can’t. (I know that’s a valuable relationship, too, of course. I’m just saying.)
I want for Marley and Rudy to be silly little buddies, and I think that a shared room can nurture that, at least while they’re young. I also think a shared room is a way to teach things like sharing and cooperation and appreciation in both subtle and dramatic ways. Already, Todd and I hear them in the morning talking to each other, and it’s hilarious. I mean, Rudy’s pretty much saying, “Be-beh” [baby], and “Nuh-Nuh” [pacifier], but Marley’s got this full-on monologue going, and they’re laughing, and it’s great.
I shared a room with my younger sister my whole life. The first time I had a bedroom to myself, I was a junior in college. (That was a little too long to wait, for the record.) But it helped me to fully appreciate my own space, and I certainly wasn’t spoiled in that way, and I don’t want my kids to be either. Plus, now we use Rudy’s old nursery as a family office, where most of the kids’ books and art supplies are. At least a couple of times a week, Todd’s up there working at an adult-sized desk, and Marley’s at her little table, doing her preschool homework or concocting imaginary dinner parties and making elaborate invitations for them.
Life and Times of Stella: In addition to taking care of your daughters full time, you help take care of your mom. Ever get overwhelmed? How do you cope?
Sweet Futility: Hoo boy. My mom has early on-set Alzheimer’s, and she’s a type one diabetic, which is a pretty terrible combination. Because she and my father are separated and he’s in Florida literally doing things like basking by the pool or ocean and enjoying week-long cruises with his lady friend, my sisters and I have taken on the responsibility of caring for her. My older sister especially, because my mom lives with her.
Because I’m a stay-at-home mom, I’m responsible for bringing my mom to daycare when my sister’s at work, and I handle all of the doctors’ appointments. It’s tedious, and depressing, but it’s also nothing new to my sisters or me. My mom didn’t do a great job of taking care of herself and managing her diabetes when we were growing up. We’ve brought her out of hypoglycemic shock more times than we can count, since we were really young. It’s the kind of thing that you think is normal when you’re young, and then, when you’re in therapy you learn that it’s not right to be constantly saving your mother’s life when you’re in elementary school.
My sisters and I are a great team, and sometimes we’re bitter and angry, but we support each other and we can laugh about the ridiculousness of our situation, too. Mostly, we just get the job done and keep the focus on our kids. And we take care of ourselves and each other because we know what can happen when moms don’t. Ugh. Next question.
Life and Times of Stella: How and when did you decide to be a “stay-at-home mom” and leave your teaching job?
Sweet Futility: My last full-year teaching, I was given three classes of eighth graders. It was not hard to walk away. Seriously. The people who teach middle school kids because they “just love that age” are saints.
When I started teaching high school English, I had sweet classes like creative writing and AP English Language and Composition. I loved teaching those kids. They were mostly nerds and overachievers like me, and they loved reading and writing. I got into the profession because of my love of grammar, not because I watched Dangerous Minds and wanted to teach inner city kids poetry. This makes me sound like an elitist jerk, so I should mention that a part of me did absorb Dangerous Minds when I was becoming certified to teach, and I will always love Stand and Deliver. Defy the odds! Like in Rudy!
When I was pregnant with Marley, my husband and I were both full-time teachers. And teaching is a full-time job. Especially for English teachers. The day is over at 2 p.m., sure. But then you’re not really out of the building until almost four, and you’ve got this gigantic pile of mostly mediocre essays to read and grade, and that’s at least three hours of work, and so we knew that if we both worked, we wouldn’t get to hang out with our kids at all. And I really, really wanted to be at home with them while they’re little and funny. So we have been stretching our dollars ever since, and I still coach, teach a night course twice a year, and fit in private tutoring whenever I can to keep us afloat.
Life and Times of Stella: What is a typical dinnertime in your home like? What’s on the menu in terms of food, conversation, and antics?
Sweet Futility: Dinnertime is not where I want it to be right now. Unless I’m really on my game, it’s suddenly five o’clock and I’m just getting something going for Todd and me (and Marley) while I’m microwaving small plates for Rudy (and Marley). We try to overlap our eating so that we’re all sitting together for at least five or ten minutes, but that doesn’t happen as often as I’d like.
And I know there are all these people who say, “I’m not making six different meals,” and “If my kids are hungry, they’ll eat it, and if not, they can eat again at breakfast,” and I certainly agree with that in theory. But Marley and Rudy are both wee kids, and every time we see their pediatrician, she’s on me to be sure that they’re eating healthy and gaining weight. So right now I’m balancing filling their stomachs the best I can with what I know they like, and making sure they at least try whatever Todd and I are having, too. I’m hoping that in about a year, we’ll really and truly be sitting together and eating the same things.
That doesn’t really answer your questions. So I’ll tell you that the other night we had chicken thighs braised in white wine, stock, and some dijon mustard, toasted basmati rice with shallots, cumin, and coriander, and some green beans. And tonight, we’re going to drown ourselves in french fries and bacon cheeseburgers at Five Guys, and I’ve been thinking about it ALL DAY! We eat healthy food, especially fruits and vegetables, as often as possible, and I don’t really buy junk food for snacks. But I use lots of butter and salt when I cook.
One of my absolute favorite cooks is Nigella Lawson. And I was once watching this documentary about her, and she said how it really affected her when her mother got cancer and said something like, “Well, now I guess I’ll finally eat what I want without worrying about my weight.” And clearly it’s affected me, too. Why deny yourself? I still don’t think I’m answering your questions the right way. I have a lot to say about food, I guess.
Life and Times of Stella: What do you find most challenging about motherhood?
Sweet Futility: I think it’s hard to be the kind of role model I want to be. I want to show Marley how to maintain a sense of calm when she’s mid-tantrum, but sometimes I still blow my top. I want to exhibit things like kindness and compassion, but that can be difficult depending on who I’m dealing with. (Ahem.) And I want to be assertive and stand up for myself, but I also really hate confrontation. So it’s probably the same stuff a lot of moms feel: I’m setting some impossible standards for myself and just doing the best I can to meet them as often as possible.
Life and Times of Stella: Tell us one thing about each of your daughters that you admire.
Sweet Futility: I love Marley’s spunk. Even though it can drive me bananas, her feistiness is something that I really admire. I don’t see her ever having trouble standing up for herself. And at the same time, she’s such a little lady. She will know more about how to properly apply eyeliner at age fifteen than I know now. I don’t even wear it, for crying out loud. She will be truly embarrassed by my ensembles in the next year or so unless I stay on top of things.
Rudy is a model of living in the moment. She is slow and deliberate and sweet. Sometimes I call my sisters with her, and they’ll answer, “Hello?” And then Rudy will say, “Hiiiii.” And then Heather or Danielle will realize who it is and take in this sort of pleased and contented breath and then say, “Hi!” and then Rudy replies, “Hi. Hiiiii. Hi!” And these greetings can go on for about three or four minutes. I feel like when I’m holding Rudy and she’s smiling and taking things in, my blood pressure goes down.
Life and Times of Stella: What is your biggest wish for Marley and Rudy?
Sweet Futility: I want most of all for Marley and Rudy to be truly, deep down, happy with who they are and what they’re achieving, throughout their lives. I want them to laugh as often as possible.
Life and Times of Stella: In closing, can you recall a proud mothering moment, when it was clear that something you’d done as a mom was definitely not futile?
Sweet Futility: That’s a tough one. I think it’s still too early for me to answer this as far as Rudy goes, but I’ve got a few examples of Marley making my heart swell. Or melt. Depending.
The first is something I didn’t get to witness. When my sister Danielle was watching Marley last year while the Boston Marathon was on TV, Danielle pointed out how fast the female runners were going. And Marley said, “Yeah. Girls do sports. My mommy does lots of sports.”
Last week, when Marley and Rudy and I were wheeling our red carriage toward the registers at Target, I was trying to get Rudy to say, “Buh-bye.” So I was all, “Bye! Bye, Target!” And Marley, skipping alongside the carriage, said, “Bye, Target! I love you!”
And every time I drop Marley off at preschool, she has to give me a hug and a kiss and squeeze my nose, and then she does the same thing to her little sister. It’s adorable, I promise.
When I was forced to give up breastfeeding for the health of my baby, I was heartbroken and plunged into an even deeper and darker postpartum depression. It seemed like a no-win situation: I was failing, and my baby was not getting “the best.” Based on all that I’d been told about breastfeeding, a switch to formula did not bode well for Stella’s mental or emotional health, not to mention her IQ. But then it occurred to me that I had absolutely no in-depth scientific knowledge or statistics about the actual benefits of breastfeeding or actual outcomes for formula-fed infants. All I had were soundbites. In an attempt to inform myself about precisely what formula-feeding meant for Stella, and to maybe try to feel just a little less despair, I started digging around online.
Suzanne, the Fearless Formula Feeder
That’s how I found Suzanne. Her increasingly popular blog, “Fearless Formula Feeder,” is catching the attention of formula-feeders and breastfeeders alike, sparking controversy in lactivist circles and heated debate in the blog’s comment section. It’s no secret that after all Stella and I went through with her feeding aversion and NG tube, while I still wish I could’ve breastfed, I have found immense comfort in Suzanne’s blog. You can agree or disagree with her message, but you can’t deny that she’s a courageous woman.
I have a feeling you’ll be hearing Suzanne’s name again soon. She’s currently working on a book about formula feeding and the concept and impact of breastfeeding pressure. And with that, I present my first ten-question “Confident Mom Interview,” with the Fearless Formula Feeder.
Life and Times of Stella: Why did you start your blog?
Fearless Formula Feeder: I was 100% committed to breastfeeding. I went into the hospital with everything going for me – I was educated about nursing from classes and numerous books; I lived in a community where everyone breastfed; all of my friends had nursed without problems; my husband was just as dedicated to the cause as I was and completely supportive; I didn’t have a maternity leave end-date looming over my head (being a writer who worked from home)… basically, I was a poster child for the best candidate for a successful nursing journey. I had the will, the drive, the attitude, the desire, and the support necessary to breastfeed.
And yet, I still ended up formula feeding…
The Life and Times of Stella 