baby

The eyes don’t have it.

Posted on by amberhj

I’ve always been proud of my perfect vision. I’ve bragged about it openly, and came to appreciate it even more after Stella’s visual challenges revealed the complexity and wonder of human eyesight. “I’m so lucky and blessed,” I thought, darting my hawk eyes around to appreciate my crystal clear view of life. Turns out it’s not that simple. News flash: My vision is decidedly imperfect. And if I hadn’t been so blinded by pride, perhaps, I would’ve realized it a lot sooner. But the realization didn’t come until Stella’s in-office vision therapy session today.

If you saw one of my recent posts at Little Four Eyes, you know about Stella’s experience with the quoits vectogram and how it showed that she can see in 3D! Well, today we did the same exercise, with a twist, and it showed that while Stella has a decent amount of stereoscopy, she has a hard time recovering 3D vision if the therapist “breaks” the illusion and then brings the sheets back into place for stereoscopic viewing. It takes Stella a long time to re-fuse the images after briefly losing fusion. It’s something we can work on, and greatly improve, according to our vision therapist. I feel confident that Stella will overcome this issue, and it helps that Stella was a rock star during vision therapy today. Her hand-eye coordination has come so very far. You should have seen her throwing beanbags into squares, tracking fluffy bumblebees, honing in on moving light-up targets, and stringing beads onto wobbly string! A thing of beauty, I tell you! Because of her improvement in this area, I’m now to shift our at-home vision therapy efforts toward making her eyes work across longer distances. Don’t ask me how I’ll capture her attention across the room. At times, I can barely achieve this with my face directly in hers. A way will be found, after much frustration and shouting in a chipper voice and bribing with chocolate chips. Or whatever.

At the end of today’s session, in an effort to help me understand the quoits vectogram, Stella’s vision therapist let me put on the polarized glasses and do the exercise myself. Drum roll, please… My performance was shockingly poor! And you know, I could tell before the therapist said a word. During the exercise, I sensed that it was taking my eyes (brain?) a long time to fuse the images. Simply put, it was difficult. “Maybe I have a vision problem,” I thought out loud, barely believing my plainly less-than-perfect eyes. According to the vision therapist, Stella actually performed better than me on the initial fusing of the rope circles! It took me longer! It seems I suppress input from one of my eyes when challenged to track closer objects and movement, but my eyes don’t cross the way Stella’s do. I’m guessing that’s because I don’t have Stella’s farsightedness, which puts extra stress on her eyes.

I was in shock! Sort of. But then I thought about a few incidents, and the testing results made sense. When I was in middle school, I tried refereeing a little kids’ soccer game. Fresh air, sunshine, control over younger humans–it seemed like the perfect way to earn money! But I forgot to add “barrage of insults” to the list of perks. The parents hated me, and heckled me like Red Sox fans at a Yankees game. It. Was. Brutal. They were a-holes, yes. But they weren’t wrong that I sucked. I absolutely could not follow the action close enough to make calls. Apparently, as the parents of one team made painfully clear, one kid was checking everyone else constantly. Oh I tried. But no matter how close I got or how hard I tried to lock my eyes on him, I just could not see what the parents were seeing. I couldn’t follow along, couldn’t catch the little movements. In a way, I felt blind. Clueless. Didn’t help that the parents turned me into their punching bag–that doesn’t tend to sharpen performance, you know? I still fume when I think about that, and if I could rewind my life and go back to that fall morning, I’d handle the scenario soooooo much differently. It would’ve involved a string of obscenities and several disturbing gestures. Perhaps assault with a deadly whistle. Nothing those kids didn’t see at home with their wildebeest parents, I’m sure.

Come to think of it, the same tracking issue plagued me during my sports career. Basketball was my passion, but I played pretty much on instinct and with general, big-picture court awareness. I swear that I never actually looked at anything in particular. I didn’t look at the basket when I shot, I didn’t look at the ball directly as I caught it. I didn’t look at my receiver when making a pass. Never actually even saw specific people in front of me while running a play as my high school team’s point guard. It worked out okay, but I was limited. I always wondered why I couldn’t get to the next level and become a really savvy, strategic player. I had the feeling that there was a deeper level of the game I couldn’t access, and it was frustrating. My husband doesn’t have that problem. He’s a fantastic, very tuned-in point guard who can watch individual players and movement and see the small details within the flow of the game. All I had was a very general sense of what was going on. Even though my eyesight has always been 20/20, somehow, it was foggy.

I now hope that, when all is said and done, and vision therapy and patching and early childhood are behind us, Stella will wind up with better vision than me. With her glasses, anyway. I couldn’t be happier (or prouder) about that possibility.

Excuse me while I go schedule an eye exam. For me. How refreshing.

 

 

 

More on the risks of NG tubes

Posted on by amberhj

A couple of things to share for now: A message I sent in an effort to get support for Stella’s wean, and an AAP study.

Below is the actual text of an email, including excerpts from research that I paid for, that I sent to Stella’s pediatrician and OT on January 4, 2009. The next day, they called to say that a two-week “trial” without the tube would be low risk and to go ahead with it. She never looked back and began eating large amounts at about the three-week mark. She would even have days in which she consumed 1,000 mls of 24-calorie-per-ounce formula. She was about four months old at the time, and before weaning had progressed to taking in 40-50% of her formula orally. But it was stuck there, and feeding her was still quite difficult. I simply don’t know how long tube feeding would’ve persisted otherwise. I’m thankful I was truly heard and that Stella was supported in learning to eat completely on her own.

***

Dear Tom and Robin,

Stella’s eating is regressing. The core issues seem to be reflux and difficulty swallowing. I strongly believe that the tube is worsening both of these, and that much longer use of the tube will cause more damage than benefit. Stella did not have this type of difficulty swallowing before the tube, I know that for sure. Her swallowing has gotten progressively worse over the last couple of months, during which time the tube has gone in and out many times. Her reflux is also still a problem and I strongly suspect that the tube is part of that. I found research which supports my intuition. See below. The cited papers are also attached.

*

From paper entitled, “Infants with swallowing problems” by Helen Cockerill, from Pediatrics and Child Health 18:12 (2008):

“The presence of a nasogastric tube may provide negative stimulation and impact on respiratory support for oral feeding. Long-term use has been associated with the development of later feeding aversion.”

From paper entitled, “Effects of Nasogastric Tubes on the Young, Normal Swallowing Mechanism” by Phillipa Sarah Huggins, MSc, Seppo Kalervo Tuomi, PhD and Christopher Young, MBBS, FRCS, FFRad(D)(SA), from Dysphagia 14:157–161 (1999):

“However, there are several disadvantages to nasogastric feeding, including nasal ulceration, laryngeal injury, and pharyngeal discomfort [5]. Nasogastric tubes may also precipitate gastroesophageal reflux, which can lead to aspiration [6]. Nasogastric tubes are frequently self-extubated, especially in elderly or restless patients. Reintubation is labor intensive and distressing for the patient [4].”

“Nasogastric tubes slow swallowing in young normal adults.” (My own thought on this: It seems logical that if it affects adults this way, babies would be as affected if not more so. Slowing of swallowing seems to be exactly what is happening to Stella–she is clearly uncomfortable swallowing now in many of her feeds.)

“Sensory accommodation to the tube may counteract the earlier pharyngeal response triggering seen in this study, whereas prolonged accommodation of the tube may delay triggering of the pharyngeal swallow. This may hinder recovery of normal swallowing patterns in people with swallowing impairments and increase the likelihood of aspiration.”

*

We are doing all we can to put weight on Stella to put us in a better position to go without the tube to see how she does. Are there any alternatives to the tube? Can we try cup feeding? Can we explore any other avenues (not including a G-tube which is not a route we are willing to go)? I believe that we treated her initial problems but that new problems may have arisen DUE in large part to the tube. Thank you for hearing me out and helping us resolve Stella’s feeding issue. You both have been so helpful.

I would like your honest thoughts on Stella’s progress (or lack thereof) and prognosis. We are very scared and want to know what we are up against. It’s starting to feel hopeless. We are doing out best to keep hope alive, but are desperate to seek out other ways of treating her.

Thank you,
Amber

***

This NG tube study, published in PEDIATRICS (The Official Journal of the American Academy of Pediatrics), is very telling, regarding of the distress caused by NG tubes. Some of the wording and terms used in assessing the pain are haunting: “Does Nebulized Lidocaine Reduce the Pain and Distress of Nasogastric Tube Insertion in Young Children? A Randomized, Double-Blind, Placebo-Controlled Trial.”

Hooray for Heath, his mom, and inspiring tube weaning success!

Posted on by amberhj

Mighty Heath

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.)

Stella hits the gym

Posted on by amberhj

Stella enjoyed her first Gymboree class ever today. By letting her go until 15 months without being enrolled in a “structured program”, I let her become a delinquent, apparently. Well I’m making amends! Not really. Stella’s just incredibly active and we were getting bored. I thought it would be perfect for her.

She just turned 15 months old yesterday. But mainly because she’s been walking for so long and is so good at balancing and climbing and other physical feats, I took her to a class for 16- to 22-month-olds, rather than the one for 10- to 16-month-olds. The woman at the front desk told me they were pretty flexible with the age ranges of the classes, which made me feel more confident about it. We arrived a couple minutes late and I was flustered and wondering if we should even be there, but the staff really put me at ease.

Stella watched solemnly from my lap for much of the time. Two teachers went above and beyond to assure me that it’s totally normal for kids that age who are new to the program to simply watch the others at first. Stella definitely stood back. She seemed awed, fascinated and, while not at all upset, a little nervous. She did explore a bit. She walked up some plank that you are supposed to crawl up. She jumped off a platform, went to town on a giant rocking horse contraption, slid down the slide, kept throwing two balls overhand at the same time with one in each hand (with impressive form, a small thing but I so appreciated it), and approached a couple of kids in a friendly manner.

I was reminded again today, in looking at the slightly older toddlers, how lean Stella is. She’s just as tall as they are, but appears small because she’s so thin. Perhaps that’s why she already seems like such an athlete. After all, her triceps are more defined than mine! (Okay, that’s not saying much.) While her eating has received way too much attention, I’m starting to believe that her build has less to do with intake and more to do with her insane activity level. I was reminded today that her leanness serves her well. Stella climbed up on a teeter-totter, with seats on both ends and bars across the middle. She climbed up onto it, unfazed by its rocking motion, and sat right the middle with her skinny legs stuck through the slats, arms outstretched and holding the side of the teeter-totter behind her, moving side to side. The teacher said she’d never seen anyone use it that way before. What a trailblazer!

At the very end of the class, as Jimbo the puppet said his goodbyes to everyone, Stella got up from my lap, ran away on her tippy toes and pointed at Jimbo. She was finally comfortable, and it was time to go. Of course. I had to peel her off of the rocking horse.

This could be the beginning of a lot of gym time for Stella, and I am prepared to be alternately dazzled and supportive.

Boots for standing up in

Posted on by amberhj

Babies and toddlers are social magnets. Compliments zing through the air to make their way to you. Strangers swoon in your direction. Silly commentary slides along the sidewalk and lands at your feet. It warms my heart to see people react in an open and friendly way to Stella and all children for that matter.  That’s the way it should be.  Children, especially little ones, are still deciding just what this world is all about and gauging their place in it. A warm reception to this planet is what they need and deserve.

But that magnet sure is powerful. I’ve noticed that once in a long while, a baby’s magnetic magic can draw out the ugliness in some not-so-well-adjusted folks, the ones who perhaps were not warmly received here on earth themselves. So, not all of our run-ins with people on the street have been positive. Maybe it’s because we live in an urban area, where there are many people living very close together yet somehow with much distance separating them.

I’m still processing what happened, but while strolling Ballard this morning, we had a disturbing run-in with two men. I really don’t want to ever repeat what they said, which apparently seemed to them to be a harmless, hilarious joke.  It was too disturbing. Beyond inappropriate. Pretty much unfathomable to me or any parent.

Here’s what I’ll say about the interaction. They said something friendly to Stella. They seemed happy to see her. I said hello on behalf of Stella and myself, Stella stumbled, they reacted in a jovial manner, and I smiled and moved Stella along. They laughed a little too hard as we walked away.

Then, a block or two later, I processed their jovial response. And I got the joke. And it was not okay, not remotely okay. And I’d smiled at them as we parted. Did they think I was in on the joke? Oh god, no. No, no, no. I turned around. They were nowhere in sight. I made a quick, admittedly unfair judgement based on the way they were dressed that (at that non-commuting hour) they may have been headed for the bus stop. Two or three blocks later, I found them there. I confronted them. I confronted them because it was not right in any way. Because that kind of bullshit toward children can not be tolerated, and because I desperately, desperately needed to defend Stella (and me).

I don’t know that I’ve ever felt as confident heading into any other confrontation in my life. I was so calm, so lucid, so certain of what I needed to do. With Stella in my arms, I approached them and said, “Excuse me. Did you make an inappropriate joke about my daughter?” There was a brief but possibly telling pause. Or maybe they were in shock. They denied everything, and explained what they’d said. They made very sad expressions. I looked them both dead in the eye, I told them I’d heard the joke and heard their laughter. Again they tried to explain it. I took in their solemn faces and their responses. I so, so wanted to believe them, but upon reflection, my gut did not. There was nothing more I could do, and it didn’t really matter. I’d done what I had to do. I told them, “Okay, I hope not. I’m a protective mom and I needed to stand up for my daughter.” The more vocal of the two said, “That’s good.” We turned and left them there, waiting for their bus.

This had not been on my agenda, but I proceeded to walk into the boutique behind the bus stop, where I bought a pair of ass-kicking Frye boots for me, and some rain boots for Stella. Somehow, it seemed entirely appropriate.

Moving on.

Look what Stella can do!

Posted on by amberhj

Stella says “Thank you.”

Originally uploaded by codatious1

I wanted to share a few of Stella’s latest tricks…

She not only uses the more sign (that’s old hat) but she says “more”, with the inflection of a question, while she does it.

She’s starting to string words together. Stella says, “Thank you!” a lot. We were at the park the other day, and saw a baby. When the baby was carted away in her stroller, Stella waved and said, “Bye, baby!” I also heard her say “Bye, daddy!” when Cody left for a basketball game.

She can climb anything: rocking chairs, pianos, couches, dining chairs, benches, parents, etc. The core strength required for this is impressive.

Stella’s been giving us kisses for a couple months now, but it’s starting to happen more and more often, and we relish it. The kisses are mostly tongue, and sometimes snot is left on my cheek, but I love them so much.

Stella refers to some of her books with appropriate words. For example, one of her favorites is called, “Is Your Mama a Llama?” She points to it and says “Mama” when she wants to read it. She points to “Daddy’s Girl” and says “Daddy” when she wants to read that one. She roars when she wants to read the book featuring a lion.

By now she can make a good number of animal sounds: pig (really sounds like sniffing as opposed to snorting but you get the idea); lion, bear and tiger (all are scruffy roars); dog; cat; snake; cow; bird. If you ask her what an animal says and she doesn’t know, she’ll make something up. To me, that’s just as fun to see as her getting it right.

Stella can point to her: bellybutton, toes, head, hair, nose, eyes, ear, and elbow, and she can say most those words too. If I say “cheek,” she’ll kiss me on my cheek, causing me to melt into a puddle.

She waves to random people on the street. Some people respond by brightening up and waving back. Some people don’t notice or pretend not to notice, so I wave back to Stella myself.

Stella is getting more demanding and can throw one heck of a fit. I refer to this development area as her “tantrum skills.” They are excellent, very advanced.

She says new words just about every day, even if she doesn’t use them very often. Hearing her say a new word never gets old. I can’t wait to have actual conversations with her.

Goodbye, breastfeeding guilt.

Posted on by amberhj

I destroyed the structural integrity of my boobs–what little there was–with an expensive, rented hospital grade breast pump in order to collect 500 ounces of milk that Stella would never drink. It sucked in every way.

Worse was the guilt and anxiety. None of it made any sense, but thankfully, it’s over. I was not able to breastfeed Stella past 11 and a half weeks and I am officially 100% okay with that. I feel a new sense of freedom and confidence. I really, really do. This can only be very good for me and Stella.

In an attempt to completely resolve any lingering bad feelings, I’ve been reading a blog called The Fearless Formula Feeder, where I found a link to this article in The Times. Against a backdrop of breastfeeding mania, this article is explosive. This exploration of the data (or lack thereof) behind breastfeeding’s benefits seems more comprehensive and credible and less emotive and debatable than Hanna Rosin’s notorious Atlantic article,  “The Case Against Breastfeeding”, which I also greatly appreciated. The bottom line is that it’s just not that big a deal. Breastfeeding is wonderful for some women and their babies, but its benefits have been greatly and widely overstated. Guilt and judgment toward formula-feeding moms has been unfair, out of control, and as it turns out, baseless.

I overthink things. So naturally, instead of letting go, I’d been doing a bit of research that helped chip away at my disappointment and breastmilk’s holy image. When you look closely at the actual studies, the mirage disappears almost completely. Of course there are some benefits to breastfeeding but they appear to be relatively small.  Furthermore, while there’s no way to know for sure, most of the benefits shown are likely due to the fact that breastfeeding moms are a self-selected population and are simply “the kind of moms” who tend to be more educated in general and in regards to childcare, more responsible, interested and engaged as a whole, and more financially ABLE to give their kids “the best” in many areas. It’s difficult if not impossible for studies to account for this.

The media tends to jump on any studies that suggest potential breastfeeding benefits, while completely ignoring the many, many studies that show no difference between breastfed and formula fed babies. Science has not been able to back up the “breastmilk as miracle cure” message. The main advantage of breastfeeding, in my experience, is that you don’t have to deal with the hassle of preparing and cleaning bottles, and you avoid the cost of formula. On the other hand, if you are frustrated with a feeding or parenthood in general, plastic bottles are great for throwing across the room–a major plus that can’t be overlooked. Ahem.

Like Rosin and the author of the Times article, the Fearless Formula Feeder is by no means anti-breastfeeding. She simply wants to defend formula feeders, and cleverly calls herself a “factivist.” It’s interesting to now look back and think about the “facts” I received about breastfeeding from all kinds of people and sources. I remember hearing in childcare and childbirth classes, in broad terms, that “breast was best.” This message is also plastered on every can of formula (thanks for rubbing it in, by the way). I was told that breastfed babies are smarter and healthier, and have better bonds with their mothers. More specifically, I heard that breastfed babies have fewer incidences of diarrhea and ear infections.

At the end of the day, I know my child better than any study. Here’s what I’ve experienced: Stella’s brilliant, ahead of the curve in every area. We share an incredibly close bond. She’s 14 months old and has never had an ear infection. And, drum roll, please… her eight-week bout of diarrhea STOPPED with her first bottle of formula. Just sayin’.

At this point, my only regret is that I didn’t stop breastfeeding sooner, so as to more quickly relieve her pain, prevent her feeding aversion, and end our stress and suffering. I was not able to stop until all hell broke loose and Stella wound up with a feeding tube. Why? Because of all the “facts” I heard about breastfeeding. It simply wasn’t possible that we could fail at breastfeeding, because breastfeeding is perfect and miraculous. I contacted a La Leche League leader and the very rude Jack Newman and several other breastfeeding experts over the phone or via email, and these well-known experts’ conclusion was that I must be doing something wrong. One supposedly all-knowing Ph.D. / IBCLC, after hearing the horrors of our situation, suggested, “Hold her more securely–don’t let her feet dangle. Babies need to feel secure.” If I could have punched her through the phone, I would have. Other high-profile experts said the problem was latch and that at Stella’s advanced age (10 weeks), it was too late to fix. This was stated with disapproval and disappointment, because clearly I hadn’t enforced proper latch. I cut out dairy and soy and tried even the dumbest suggestions. This led to a lot of crying and failure and desperation. To all that, I can now officially say, “BULLSHIT.”

I must  note that thankfully, at that difficult point in our lives, not all voices of authority shared an insane breastfeed-at-all-costs mentality. A renowned lactation consultant and a wonderful pediatrician helped me make the decision to stop breastfeeding. They said I may want to consider formula-feeding and that it would be okay. That breastfeeding’s toll was clearly too high, and that it simply wasn’t the be-all-end-all of child health. I didn’t believe them at first. But eventually, I was able to do what was best for us. I will always be grateful to them for being so sane, for being a voice of reason and compassion not just for Stella but for me, too. Thank you, thank you, thank you.

All is not lost.

Posted on by amberhj

How can a mere misplaced item spark such rage?

This morning, I could not find:

  • My boots. The ones I wear all the time. Eventually found them in the front closet with the rest of our shoes. I’m pretty sure Cody put them away just to mess with me.
  • Stella’s right shoe. It was nowhere near the left one. Later discovered in a far, dark corner of the living room between our hutch and the wall. Of course.
  • The ERGO carrier. Turns out it was in the same place as always.Where it belongs. In the kitchen by the back door. Hadn’t used it in a couple weeks, and it hadn’t moved in that time.
  • My mind. Still looking.

Minor inconvenience? To most. For me, it resulted in clenched-fist fury! I could not see straight, which only made the hunt more difficult. I was so angry, because we’d already been awake for two and a half hours without doing anything semi-productive or quasi-enjoyable (productivity is  not how I measure a morning, trust me) aside from picking at breakfast. Where do those hours go? I remember reading Stella a few stories, which slowed down my post-breakfast clean-up efforts. Then I sort of just hung out with her on the couch in the office for a while, helping her do somersaults–she recently figured out how to climb up on the furniture and treats couches as gyms. At some point, I wet my hair and dried it about halfway so I didn’t look quite so nuts and disheveled. We brushed out teeth together. I rinsed off my face, which is close enough to washing it–I’m out of cleanser and moisturizer and resorted to using olive oil last night. From the permanent pile of clothes on top of my dresser, I unearthed yesterday’s jeans and deemed them clean enough to wear. I cobbled together an outfit for Stella that passed my minimum cuteness standards. I packed a makeshift diaper bag with the bare essentials. And that’s precisely when steam began pouring out of my ears as I tried to pinpoint the location of our footwear and ergonomically superior baby backpack. Of course, as I searched high and low for these items (ie looked in the same potential hiding spots over and over again expecting them to suddenly appear), Stella grabbed books, brought them to me, tugged on my pant leg, and cried. The entire time.

At one point during the morning’s madness, I actually stopped and listened to what I was saying to myself. I’m pretty sure I called myself an idiot about a dozen times, not to mention a frighteningly disorganized failure and lazy mom whose shoe-losing ways are no doubt eroding Stella’s potential and endangering her even foot development. And to make matters worse, I’m pretty sure that the stack of thank-you cards on the bookshelf, with names written on them but no addresses, looked at me and nodded in total agreement with these negative thoughts. Not only is my mental dialogue insane and uncool, it’s melodramatic.

I have phases where I get so down on myself so fast. Examples abound, but Facebook comes to mind. I want to quit Facebook, but can’t. I’ve noticed that the oh-so-sunny and wonderful virtual representations others create of themselves using pictures of their gorgeous new homes and perfectly happy children and new cars and other symbols of “success” lead me to feel crappy.  Don’t get me wrong, if we owned a lovely home, I’d be showing it off for sure, because due to the hard work and pride naturally involved. But status updates like, “Feeling so grateful for my life. Everything is wonderful!” kind of make me want to vomit, especially when posted every other day. I hope that these are genuine expressions by well-intentioned people, but come on! No, Facebook is not all bad. I do enjoy some fun banter with Facebook friends which helps me feel less isolated, but sometimes, I log off feeling “less than.” It sucks. I’m reminded of a brilliant quote along the lines of, “Don’t compare your inside to someone’s outside.” I try to keep that in mind, but it doesn’t help. I’m holding myself up to some high standards, and I’m not sure they’re even possible to meet.

Well, after a couple of emails to my husband, who has nothing better to do at work than help me find things that are right in front of me, I found all the “missing” stuff. Almost three hours after waking up, Stella and I headed downtown on a birthday mission for Cody. He turns 38 today. Happy Birthday, sweets! (I’ll report on the birthday festivities once they are complete, this weekend.) While he and Stella attend Waterbabies, I’ll be cooking a German feast for him, with ingredients sourced from Pike Place Market, to be followed by his favorite dessert in the world: Dahlia’s coconut cream pie. We won’t eat until just after 8:30, when Stella goes to bed. You know, so as to spend more than five minutes with a meal.

Our morning completely turned around once we were out and about. Funny how that happens. Stella clearly loves Pike Place Market, and being downtown with all the people, sights and sounds, and I love that about her. We had a fabulous time. The ladies at the bakery were fittingly sweet. We snacked on Dahlia’s sour cream vanilla bean coffee cake and sampled organic plum and pear. We stopped to listen to a piano man, and Stella particularly enjoyed (judging from all her bouncing) the old timey tunes by The Tallboys. One of the gospel singers that are stationed near the original Starbucks cheerfully called Stella “a bottle o’ joy” and pretty much made my day with his enthusiasm. Stella took a stroll down the less-busy Post Alley, where she tried on some boots and an old woman in a tall leopard-print hat stopped to chat with her. We watched and waited as someone spent about $500 on ingredients for an Oktoberfest dinner at Bavarian Meats Delicatessen. I was inspired but all I had left on my list was swiss cheese for spaetzle. On our way out of the Market, I grabbed some plums and pluots and Stella and I shared a smoothie in which every single ingredient was grown at a local farm. They use their own cider as a base and Stella and I agreed that it really worked.

Then I saw it:  the parking ticket. We were ten minutes late. But to my surprise, fire did not shoot out of my eyes. I simply didn’t care. We lingered at the car, continuing to enjoy our smoothie. It dawned on me in that moment to appreciate how content Stella had been throughout our long-ish adventure. It was worth an extra $25.

This calls for a new Facebook status: “Wow, what a fabulous morning. Life is good and I’m truly blessed!” Gag me with the truth.

3 reasons to smile

Posted on by amberhj

Stella’s Auntie Corinne (my youngest sister) and Uncle Colin (the duo also known as “C squared”) flew in from Boston for a few days, but now they are gone, and Stella and I are suffering from withdrawal.

Just before C and C’s arrival, Stella’s stranger anxiety went through the roof. As we entered the park a few days ago, we saw a couple approaching from the opposite entrance, all the way across the green expanse. Upon spotting them, Stella retreated to her hiding post behind my knee. She remained there until they passed, which took a while, and eyed them intently the whole time, eliciting a laugh from the two suspicious characters. In light of experiences like that, I was wondering how quickly she’d warm up to our house guests, whom she hadn’t seen since April. Well, five minutes after they arrived, she was doing stuff like this:

Kicking back with C squared

Kicking back with C squared

I think they share some kind of bond. It was a given that Stella would take to Corinne, having spent more time with her in the past. But I was impressed by how she fell in love with Colin. They really connected. But then again, come to think of it, these three have something in common. They are survivors.

At one point during the visit, Uncle Colin carried Stella up our steep front steps, of which there are many. This brought tears to my eyes. In fact, this was never supposed to happen. Colin is lucky to be alive. A couple years ago, he was in a devastating single-car accident. To keep him alive, they had to pump more blood into him than the human body actually holds. He was told he’d never walk again. His spine literally moved sideways within his body, and that was just one of many horrific injuries. From the blog that documented his incredible recovery:  “Colin has endured four very difficult surgeries: one to remove a portion of his lung torn from broken ribs and to stop internal bleeding, two back surgeries to repair the spinal cord and stabilize shattered vertebrae, and a fourth to mend three breaks in his right arm.”

During their visit, Corinne thought back about their natural defiance, their bold assumption that he would indeed walk again–their refusal to accept anything else. After waking up from the surgery on his spine, Colin was asked to move his toes. To everyone’s astonishment, he could. The doctor blew it off as spasms–he told them not to get their hopes up, that Colin would not walk. But C squared knew spasms could not explain this on-command movement. They KNEW he would walk again–in fact, they thought it was obvious. Corinne laughed on recalling it: “We were like, ‘he can move his toes!’ DUH! He’ll totally walk again, no problem!” In hindsight she realized that the leap from slight toe movement to walking again was Grand-Canyon-sized. But the important part of all this is that they had hope. Hope! Hope is huge. Hope is what makes us and keeps us human. Granted, it was a very, very long road. Colin worked his ass off. They fought insurance battles and had about a year’s worth of dark days, but they knew he’d get there. Against all odds, and with the support of the community that rallied around him, he did.

Oh, did I mention that Colin’s accident happened five weeks after their wedding? And a several years after a sleeping Corinne rolled out of her third-story dormitory window, cracking her skull and vertebrae, and shattering her arm? She sat in the gutter alongside the building until someone heard her moaning in pain. I remember the moment I got the news about Corinne’s accident and how I could not breathe. I remember flying to Boulder, Colorado to see her, and wishing with all my might that I could trade places with her yet being blown away with how strong she was during the recovery process. And I recall feeling similarly sucker-punched when I got the call about Colin, whose life was dangling by a shredded thread. Those are those frozen moments that stay with you–slaps in the face that keep you from sleeping on the job of life.

While not really comparable to the life-threatening injuries Colin and Corinne endured, Stella went through quite a bit in her first year, the lowlights being a scary feeding aversion, blood in her diaper, and The Tube. So when I saw Colin, Corinne and Stella all together, happy and healthy, I could not help but feel amazed, and overwhelmed with gratitude. Miracles do happen, and my family is proof of that. I could not be more proud.

"Just tell 'em we're survivors!" (I love these three people. And the movie "Cars.")

"Just tell 'em we're survivors!" (I love these three people and, I'll admit it, the movie "Cars.")

P.S. I’m also thankful that we had gorgeous, sunny weather for their visit. “C squared”, being bionic and all, have enough metal in their bodies to shame Wolverine. Their joints get uncomfortable as rainy weather approaches in the distance–nevermind when gloom settles in for days on end. It will surely descend soon, but Colin and Corinne left enough of their light to keep us going for a while.

P.P.S. Corinne and Colin helped Stella embrace her sippy cup. This is also a miracle. Trust me.

Three is a magic number

Posted on by amberhj

Three years ago today, Cody was very, very brave.

Three years ago today, Cody did something that was very, very brave.

Today is our 3rd anniversary. Cody and I have been married for three years, but together for seven and a half. Though, the last year alone feels more like a decade in some ways. Cody gave me the most thoughtful card with several sentences written inside that made my eyes well up (!), and, from Nordstrom, a pretty necklace with black crystal beads. He thought about getting the clear crystal version, but figured black would be better for the fall and winter. He is right. I’m impressed.

We three celebrated three years tonight at a low-end but decent pizza joint. That may not seem very romantic. But in a way, it was.  We were happy and content, just being together. Until Cody derailed my plan to get ice cream at Molly Moon’s afterward! Big mistake, Cody. Huge. But we recovered quickly.

At dinner, Stella ate more food in one sitting than we’ve ever seen: beans, pasta, cottage cheese, olives, shredded mozzarella, grapes, three giant wedges of watermelon, bread. Oh. My. God. It was AWESOME. What a fabulous anniversary gift. I think we both got a little teary eyed. We were in awe, reminded of how lucky we are to have the tube so very far behind us. Our union has created this beautiful, vibrant girl who is thriving. It’s beyond words, really.

This weekend, Cody and I will venture out together for a fancy-ish meal and hopefully a movie. And ice cream will be eaten. And old memories will be rehashed. And I’ll wear my new necklace. And we’ll get to be Amber and Cody for a while, not Mama and Dada.

Cody, I feel so fortunate to have found you. Whenever I miss my family and start cursing about being here in Seattle, so far away, I have to catch myself. Seattle is a magical place! I came here ten years ago basically on my own, with all my possessions packed into my 1990 Jetta, and stepped into the unknown. I was adrift. Throughout my life but especially after moving here, I experienced terrible loneliness and I wasn’t sure why I’d come here or what I was doing or if I’d ever find “my place.” It’s all clear now. I was growing and learning on my own, yes, but more than that–the move to Seattle, all my mistakes and fears and, heh, therapy–it all led me to you, a Minnesota boy sweet and strong enough to put up with me. Truly. (I mean, you just came in here as I was writing this and I snapped at you because I was annoyed and wanted to finish this post and didn’t want you to see it yet.)

You are as smart as they come, but humble, yet, I love that when you don’t know something, well, you’ll somehow form a super-authoritative, convincing and detailed opinion on the spot based on what little information is available. You don’t have a greedy or selfish bone in your body. You are one hell of a point guard (really amazing actually), and a self-made player like me (you may be the only person who knows what I mean when I say that), and this is huge, not only because we got to know each other on the court but because I just couldn’t be with someone who sucks at basketball. You’re incredibly cute, though I’m still trying to convince you of that. Oh boy are you an amazing dad–you nurture Stella and shower her with love and pay very, very close attention to her and appreciate all the little big things she does. Every girl on this planet should be so lucky. What I know for sure is that this world be an above-and-beyond better place if all fathers were like you. I’m lucky to have you as my best friend, and my husband. Honestly, without you, I’d still be lost. I love you very much.