Here’s To Troubles Being Less and Blessings Being More

There’s a period of time from around the week before Thanksgiving until the new year begins when I basically fall off the grid. It is not intentional. Between travel and family obligations and work and the cold weather and the early sunsets and prepping for Christmas and a dozen other things I could rattle off, I tend to turn my attention solely toward our little family and finishing out the year in a way that feels tidy and…well, finished. I like feeling as if the next year is beginning with a clean slate.

So, here are a few highlights to show what we have been up to for the past few months. Thank you for everyone who has been checking in here on the blog, on our new Facebook page, and of course in person everyday. We are so appreciative for everyone’s love and support throughout Oliver’s galactosemia journey.

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We traveled to Richmond to visit our families over Thanksgiving and Oliver got to partake in some of my mom’s homemade Korean food. Fermented soy being moved to the occasional food list has been a really nice surprise this year. Sharing cultural memories through food with my mom and my son is an incredibly special thing!

IMG_4021 2My family as a whole has been really supportive and accommodating when it comes to meals with Oliver. With only a few modifications, we were able to make our entire Thanksgiving dinner dairy-free (for the second year in a row)! The only item that we made special for John, Oliver, and myself was the gravy. (I have not perfected this recipe enough for others to find it to be an acceptable substitute for the real deal.) My sister, Tammy, who has always baked all of the holiday pies for the family, goes out of her way each year to make multiple pies that are dairy-free (apple, cherry, pumpkin), as well as dairy-free oreo balls which are a Lucy family favorite! She even makes sure to pick up dairy-free whipped topping so we do not miss out on any of the experience!

Oliver loved every sticky-fingered second of it!

IMG_4098Speaking of sweets! While we were with family, we celebrated Oliver’s birthday a little early. My other sister, Maria, was able to make the trek from New York and brought a special birthday cake for Ollie! A beautiful and absolutely delicious pareve cake from a kosher bakery in Queens. “Pareve” food items are prepared in accordance with Jewish law and mean that they contain no meat or dairy. You can also find lots of products in the grocery store labeled as “pareve” or “parve” and are marked with a “U” which generally means they are safe for a galactosemia diet. However, I always (always!) check the ingredient labels to be absolutely certain.

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Oliver had his last check-up with his doctors in Philadelphia on Halloween day. Hospital days are always a little stressful, although we’ve learned to manage the anxiety a lot better as time has gone on. We received his latest numbers while we were in the car driving down to Virginia. Ollie’s blood tests are not your run-of-the-mill tests, so it always takes a while to get the results. Our team has been really great about contacting us with the preliminary results as soon as they can so we do not have to wait for the formal results to be certified before we find out where we stand. We were very happy to find Ollie’s downward trend for his Gal-1-P continues. He is down just slightly to 7.55 which is always what we are hoping for. We continue to want to get him down below 5 but everyone, including us, are happy he continues to make progress. The blood draw at his last appointment was especially difficult. Oliver is now very aware of what is going on and does not bounce back as quickly after the poke. When he was younger, he seemed to forget about the needle almost as soon as it was over, but this time around Ollie would point to his arm and start crying a few times over the next few hours. “Ouchy.” It is gut-wrenching. I know he will eventually understand why these tests are so important and hospital days will continue to be days we ply him with treats and fun activities well into the future. Whatever it takes to make these days go a little easier for him and to ease whatever discomfort he is feeling.

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On the ride back, we stopped at Trader Joe’s and started off the holiday festivities right with some of their Almond Nog. We drank it out of paper cups in the car. Definitely was a tasty little treat. Christmas is tough because, like many holidays, it revolves around food, and sweets, and traditions, and American delicacies seem to heavily include dairy products. We never want Oliver to miss out on any experiences if we can help it, so we continue to find ways to adapt, alter, modify, or out-and-out change whatever we need to so we can be sure we can create happy holiday memories and traditions and never feel left out.

 

IMG_3832Whether it be holiday parades where candy is being chucked at us from every direction, building gingerbread houses at school, or baking Christmas cookies for Santa, Oliver did it all this year! We are starting to explain certain things to him, even if he can’t quite grasp it all fully yet. “This candy has milk in it, so let’s have this other piece instead.” It helps us get in the habit of trying to educate him instead of just making choices for him. It is important for us that he understands the why as much as is age appropriate.

Some times are harder than others. Have you ever tried to explain to a two-year-old why he can’t have a beautifully frosted snowman sugar cookie? And it keeps us on our A-game to always make sure we have an alternative available for him, whether it be at school or with friends. Which reminds me…our Ollie has the absolute BEST teachers around! They go out of their way to make sure that he is always safe when it comes to what he’s eating at school and are constantly keeping me up-to-date on current goings on so I know when another child’s parents are planning birthday treats and whether Oliver will be able to participate. It makes a big difference knowing we are not in this alone and they are helping make Oliver’s experiences the best possible!

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We are ringing in the New Year at home, in our PJs, and O has been in bed since 8pm. Not the most exciting celebration night I’ve ever rung in, but we are so unbelievably happy to have another year of a healthy little boy under our belts. This time two years ago we were exhausted new parents who were running largely off of caffeine and anxiety and could not look confidently into the future to know better times were ahead. Fast forward to today and we are starting to feel a little more secure and a lot more confident…but still heavily caffeinated.

So from our family to yours, we are wishing you a very prosperous, joyous 2018! May it be filled with love and laughter!

Leave the Brie, Take the Bulgogi

I apologize for butchering this timeless movie quote for the purposes of this post title. But it just popped into my brain and I was just so tickled with it, I could not let it go.

The point is, we received some really great news recently regarding Ollie’s dietary restrictions and felt compelled to share it.

The Galactosemia Foundation Task Force has updated the dietary restrictions for classical galactosemia. While Oliver still cannot consume most dairy products, with the exception of a few cheeses that are considered acceptable, fermented soy products have now made their way into a new “Foods used in moderation” category which means he can have some of those foods.

Fermented soy includes soy sauce, tempeh, and miso. For Korean cooking, this would also include gochujang and doenjang, two staples in many of our favorite dishes.

Most every person I have talked to for the first time about Oliver’s galactosemia has the same response when it comes to his diet: “I could never live without cheese. I just love it so much.” And, while there are plenty of meals and dishes that I do love that contain cheese, I cannot say I miss it very much at all. Just like store-bought pastries or ice cream cones on a summer day, not having it as part of our diets is inconvenient, but not something truly crave-worthy. Of course, it helps that we are able to cook with aged parmesan and aged cheddar, so our lives need not be completely cheese free.

But for this family (my caucasian husband included), Korean food and cooking is and has always been a big part of our lives. Faced with the prospect that Oliver would never be able to partake in many of the dishes I grew up on, the weight of the loss of that cultural connection for him was so much heavier than I could have known.

In the grand scheme of things, having or not having an ingredient be a part of our diet is not the worst thing in the world. There are plenty of families and children dealing with far worse predicaments and life circumstances. But still, receiving the news that fermented soy is acceptable in limited quantities for our boy, we could not help but feel a real sense of celebration.

When one of Oliver’s dietitians emailed us last week to give us the news, she knew how excited we would be, too. (Below is the newly revised list!) We had been talking about this particular missing part of our diet for many months, and even though they had an inkling this move was coming, we did not receive the official news until last week. Maybe it seems like a minor victory to most, but for us it opens up a new connection to his family and history that was missing before. And that is a true gift.

Dietary Restrictions Update for Classical Galactosemia - July 2017

Dietary Restrictions Update for Classical Galactosemia – July 2017

Judge Not

I was one of those annoying pregnant women who read and researched every possible path, decision, option, and/or outcome. Truth be told, I’m not really a fly-by-the-seat-of-my-pants kind of gal in everyday life, so throw a baby in the mix and I go into Type-A overdrive. After reading all of the literature and speaking to doctors and other moms, I had every intention of breastfeeding Oliver when he was born. And, in fact, I was successful for nearly four whole days. But, despite what any well-meaning or sanctimommy tells you, breast is NOT always best. There, I said it.

I feel like I should stop here to say, I’ve never been a judgy person when it comes to breastfeeding. I was not (and still am not) one of those women who feels particularly passionate about breast vs. bottle. I have never felt compelled to shame another mother for formula feeding in the same way I’ve never felt the need to shame a mother for breastfeeding in public. I’ve known lots of women who have breastfed and plenty who went solely with formula, and a fair number who settled on something in between. Quite frankly, any minor inkling I’ve ever had to pass judgment on another person is quickly dispensed with when I think about all of the many children around the world who don’t have nearly enough to eat. When I am reminded of that, it doesn’t take long for me to realize that however you got him there, your happy, healthy, well-fed child is none of my business.

But for me and my family, I decided it was what I wanted and I had high hopes for being able to stick with it. It was a personal decision and one I made freely for myself. At the same time, I also openly announced to my husband, family, friends, doctors, and admitted to myself, that if for some reason breastfeeding did not work out, I refused to feel ashamed for having to go a different route.

Many times when I talk to folks about galactosemia and the fact that Oliver lives dairy-free, they are surprised that he was/is unable to breastfeed. They often equate his condition with having an allergy and, since many babies who have a milk allergy or sensitivity often can continue to nurse if mom makes some dietary changes, I’m sometimes met with confusion as to why I didn’t just eliminate dairy from my diet and continue to fight the good fight. I then have to point out to them that, in the case of galactosemia, galactose is present in all mammal-made milk, including breastmilk (yes, humans are mammals, too), so a diet change wouldn’t protect our baby. In essence, my breastmilk was poisoning Oliver and therefore I had to stop.

Despite my laissez-faire attitude on the matter before Oliver arrived, I had a really, really, really tough time accepting the fact that I was not able to meet one of Oliver’s very basic needs in the same way women have been doing since the beginning of time. Maybe it was a biological yearning, maybe it was hormones, but I felt like a complete and utter failure at motherhood and life. Add to that the stress of having a newborn in the hospital fresh off a diagnosis of a rare condition and also having to physically force your body to STOP doing something it is biologically predisposed to…well, let’s just say it was an ugly time emotionally and physically for me.

I lay all this out for you in hopes you can understand then just how disheartening and daunting it can be the first time (and very possibly not the only time) a loved one, a friend, an acquaintance, or even a stranger quotes those three little words to you: Breast is best. It’s hard to know what your reaction might be. If you are like me, you might be inclined to give the person the benefit of the doubt. They mean well. They are just making conversation. They want to make sure you have all the facts. But quite quickly that might be replaced with anger and indignation. How dare someone presume to tell me what is right for my baby? They have no idea what we’ve been through? How can they lack basic empathy for another human being?

And then you will be faced with a choice: (a) become combative; (b) smile and nod; or (c) use the moment as a teaching opportunity to educate someone about why you aren’t breastfeeding. I’d love to say I am one who always is able to rise above and not let it bother me, particularly when I try initially to take the high road and the other person can’t take a hint. But I’m human and sometimes, on a day when maybe I’m struggling or frustrated or in a hurry, the last thing I want is for someone to presume to know what is best for me and my situation. I hate to admit it, but in those moments, I sometimes want to make the other person feel bad. Feel small. I get angry that I’ve allowed this person to make me feel guilty and revisit feelings I had when I felt like such a failure in Ollie’s first days in this world.  Just admitting that I could feel that petty makes me feel a real sense of shame. But, in those moments, I have to ask myself: What good will that do, making this person feel small? Will it make me feel better? Will it make this person think twice the next time? Who’s the hero of that story–the presumptuous stranger or the snapping mom?  I try to remind myself that I always hope to be the hero of my own story so maybe if I take the high road and try to educate whoever is sharing their advice, I can open that person’s mind to the fact that there is no SINGLE way to raise a baby, to feed a baby, to dress a baby, to diaper a baby, and on and on. Maybe killing ’em with kindness makes more of a lasting impression than lashing out in anger and frustration. I try to remind myself of all of that, and sometimes I may fail, but if I’m lucky, more often than not I will succeed.

Footloose and Dairy-Free

When I try to explain to people what having galactosemia means for Oliver, especially for the first time, one of the easier aspects to explain is that he is required to have a restricted diet and, in particular, can not have any dairy products. If this were the CliffsNotes explanation of galactosemia, you could file this under the Major Themes section. It’s one of the easier aspects for others to understand considering the number of children with food allergies and other aversions these days.almond-milk

Something else we find ourselves explaining is the fact that John and I decided to also go dairy-free fairly soon after Oliver’s diagnosis. We debated it for a long time, but in the end, it was the decision that made the most sense for our family. I have known plenty of children with food allergies, including family members, who have not restricted their own diets and I imagine there are plenty of other Big G families out there who do the same. And to that, I say, you do you, boo! No one knows your family the way you do; it’s a personal decision for sure. For us, we made the leap to living dairy-free for many reasons, so here are just a few:

  • Curbing accidents – By keeping products Oliver can’t eat out of the house, we are hoping to statistically cut down on the chances of him having an “oops” moment at home. We are realists so we’ve resigned ourselves to the idea that at some point, he will probably have an accident. Maybe another well-intentioned parent will accidentally offer him a cookie or he will reach onto a classmate’s plate and steal  a cheese puff (because, seriously who can resist?), it’s bound to happen at some point. In the US, dairy is so pervasive it almost seems inevitable. If we can cut down those odds even a little, then it’s worth it to us.
  • Economic impact, part 1 – Groceries are expensive, especially if you like to shop the outside of the store like we do. Fresh produce, meat, fish, and dairy (and the dairy-free products in that department) can add up quickly. Add to that snack foods and other packaged products, the idea of buying two of everything–one Oliver can eat and another he can’t but maybe we are used to buying–is enough to have me consider taking on a part-time job. Visions of a fridge and pantry packed with two versions of most everything, seems like such a waste.
  • Economic impact, part 2 – I am a big proponent of my voice, my dollars, and my internet “clicks” being valuable commodities. I believe that as a consumer, my opinion and needs should matter  to the businesses I support and if I find myself in a position where they don’t, then I have the luxury of moving on. We looked at our decision to go from buying for a single person in our family with special dietary needs to a family of three as hopefully a bigger statement to food-related businesses on the need for dairy-free food products and explicit labeling.
  • Health? – I put a question mark after this one because quite frankly I think the jury is still out as to whether animal-produced dairy products are good for you, bad for you, or somewhere in between. Like eggs, coffee, red meat, and wine, there seem to be new studies and advisories every year. What I do know is not having dairy in his diet won’t hurt Oliver and it is absolutely possible for him to have a well-balanced, healthful diet without it.
  • Second nature – By going dairy-free ourselves, John and I will find ourselves each and every day making decisions like Oliver will on what he puts into his body. We’ll have to ask questions, do research, and have back-up plans and hopefully, by doing that now, we will be able to help him better make decisions for himself and give him the ability to navigate the world confidently.

We have faced mixed reactions when we tell people, but one of the recurring reactions is, “I could never do that! I love cheese/chocolate/butter/fill-in-the-blank too much!” And had you asked me a year ago, I would have probably said the same thing. But honestly, once we made the decision, it really was like flipping a switch. We are so thankful to live in a time and place where we can find alternative versions of most everything!  I can’t say this is a decision for everyone, but for us it definitely feels right.

**If you are looking for an AWESOME resource to get yourself started or to learn more, Go Dairy Free is my go-to! Great recipes, advice, information, and product reviews!