Chocolate Pecan Cookies

Baking

Day 3 of the #25DaysofCookies Challenge meant breaking out my Dominque Ansel Cookbook. 

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I don’t use it often because, quite frankly, I’m intimidated. Dominque Ansel – for those of you who don’t know – is the creator of the Cronut, pastry chef extraordinaire, owner of multiple bakeries in different countries and a culinary genius. And his cookbook is not for amateurs. 

This is the first time I made these and I was worried the whole time that I was doing something wrong with the chocolate. The recipe calls for melting chocolate over a double boiler and then adding melted butter out of the microwave into the chocolate. It sort of thickened and freaked me out, but it hadn’t seized so I wasn’t sure if I had screwed it up or not…turns out everything was fine and I was overreacting.

I’m not usually a huge fan of nuts in my cookies. I’d go so far as to say that a lot of times I feel like they actually *ruin* cookies. Not the case here. At all.

This is in the beginner category of the DA Cookbook. I’ve ventured into the “intermediate” category, but since this is Dominque Ansel we’re talking about, I’ve been too scared to head into the Advanced category. You can visit his bakeries in New York, Paris, LA and Tokyo, or buy his cookbook, here

Olive Oil Shortbread with Rosemary and Chocolate Chunks

Baking

Hear me out. This combination is…untraditional, but this accidentally on-purpose vegan recipe from Smitten Kitchen Every Day is a little sweet, a little savory and a little Christmas-y.

It’s super simple: flour, powdered sugar, salt, rosemary, chocolate chunks and olive oil all go into one bowl, get mixed by hand, and get poured out onto a cookie sheet. That’s literally it. The perfect cookie recipe for a busy day.

Mathias was interested in helping me for approximately 30 seconds.

I love these and will keep making them! They’re not overly sweet like most cookies – they’re faintly savory and crumbly in a melt-in-your-mouth sort of way. Lucas prefers a chewy cookie, so keep your audience in mind. Liv and I love them.

PS – This is one of my favorite cookbooks. Not endorsed (I wish!). But I seriously use this cookbook at least once a week. You can find it here

25 Days of Cookies, and Life Changing Rugelach

Baking

Last week I got this crazy idea…to bake cookies every day for 25 days until Christmas.

I have always loved to bake and always had an attachment to baked goods. My dad has a pretty serious sweet tooth, and it was a way for me to gain affection from him as a child (sorry, but it’s true, just another way you screwed me up Dad). But there’s always been something centering for me about baking, and it’s something that never, ever feels like work. 

As a mom of two (with another one on the way), it’s rare that I do something for myself. That in itself is a challenge, because I always feel like I *should* be doing something else – usually, cleaning, or doing something for one of my kids or my husband. But baking was my first real passion (pre-painting, post-hundreds of hours of violin lessons). I wanted to be a baker at a very young age and have been idolizing Alton Brown and Bobby Flay for as long as I can remember. I still remember watching Jacque Torres on The Food Network, wide-eyed and amazed at the things he would do with chocolate. But as I got older, I thought a liberal arts education would suit me better, and baking became something I did just for fun or for a challenge. The challenge thing isn’t new to me.

So when the idea crossed my mind to do a 25 Days of Cookies Challenge for Christmas, I couldn’t let it go. I wanted to do it, but needed a push…something to hold me accountable. So I did what any millennial mom would do…I reached out to other moms on Facebook. Who wants to do this with me? Who’s crazy enough to keep me from giving up on a day that I’m tired, and to join in the fun with me? I got five yeses, mostly from women that I have known on social media for a long time, one of whom I have met thanks to social media and both of us living in New England. We agreed, and so on December 1st, embarked on this crazy challenge. 

Hanukkah started last night so it was only fitting that I started my cookie challenge with a traditionally Jewish cookie: Rugelach! I used this recipe by Deb Perelman of Smitten Kitchen, who I trust wholeheartedly because a) none of her recipes have ever failed me and b) she’s a New Yorker with Jewish roots. How could I not trust her to deliver an authentic recipe?

The Dough

I forgot to take pictures making it but all of the ingredients go straight into the food processor (yay for not having to soften butter + cream cheese!) and then into the fridge for 2 hours to chill. Here’s the post-fridge dough!

The Filling

Livia seems to be ok with baked-in dairy but not “raw” dairy (yogurt, cheese, milk etc.) so I went with dairy-free chocolate chips by Enjoy Life! I also used pumpkin seeds instead of walnuts because nuts are a total no-go for her as well. Just a tiny deviation from the original recipe.

Make Again?

YES! I’ve had a lot of rugelach in my life but never made it from scratch because I mistakenly believed that it would be a lot of work. Huge mistake. These were bomb, 10/10 highly recommend.

Why an Autism Diagnosis is a Good Thing

Mathias, SLOS

There have been a few days in my life that have changed my world.

The day I chose my university.

The day I met Lucas.

The day I got married.

The day I miscarried my first pregnancy.

The day I had Mathias.

The day that I first heard the words “Smith Lemli Opitz Syndrome” and wrote them down on a junk piece of paper, not thinking anything of it because the neurologists told me they had never met any children with it before and the chances that Mathias had it were 1 in 60,000.

The day that Mathias got a g-tube.

The day that these words were uttered: “your son is on the Autism spectrum.”

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I’ve been meaning to write this post for quite some time, but I have a hard time expressing the feelings I had in this moment, which was already 9 months ago.

Our stay at the National Institute of Health was…traumatic. It was hard, for all three of us (Livia was a baby and was blissfully unaware of anything going on), for different reasons. This was the first time Lucas really experienced firsthand what Mathias has to go through. Mathias was subjected to multiple tests, which included a skin graft and a blood draw that took several days because they aren’t used to baby veins, and our stay concluded with his g-tube exploding the ONE time we didn’t have a spare button because our medical supply company had a mix-up and couldn’t get the spare to us until the day after we left for Maryland. It was awful.

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For me, it was difficult because of the ASD (Autism Spectrum Disorder) diagnosis. Honestly. It was just ANOTHER thing that Mathias had to try to overcome, another thing making it more difficult for me to teach him, another thing that made me feel like my son could/would never have a “normal” life. Nothing changed about Mathias – but in the moment he received the diagnosis, my last hopes crumbled. It was another thing that proved just how much his genetic disorder controlled him, another thing that reminded me that even if he is on the “mild” end of the SLOS spectrum, that he does not function the way that I do. I wanted, desperately, for Mathias to be able to be mainstreamed in school. To not need a lot of therapy, to not need too much special ed. I knew that it was unlikely and that the odds were stacked against us, but I still had hope that maybe, maybe he could just be “normal” enough to get by.

As a mother, there are things that make you suffer in a depth that you can’t truly comprehend until you are in that position. I know, from my own experiences in school, that kids are mean. Kids are hurtful. And kids that are atypical – kids that are medically complex, have genetic disorders or are on the autism spectrum – have it harder than anyone else. So not only was I worried about Mathias from an education perspective, but from a social one as well. The thought of someone being mean to my baby, and him not understanding why, broke my heart. I didn’t want – I still don’t want – him to ever feel that he is less than anyone else. And I know that part of his suffering in life is going to be just this. He is not like everyone else. All I can do is try to teach him that that’s okay, and that he is perfect and loved by his family and God just the way he is.

However, the silver lining to an ASD diagnosis is therapy. As terrible as the government and health care systems can be, they understand the word “autism” as “this child needs your full support.” Do you know what Smith Lemli Opitz Syndrome means to them? Nothing. It’s gibberish. No one knows anything about it and that means things take forever to happen. But say the word “autism” and things start moving.

The biggest help for Mathias, they told me at NIH, would be ABA therapy. ABA (Applied Behavior Analysis) therapy is a “learning theory which utilizes a team approach to provide services adapted to meet the specific needs of a child and their family.” What this means is that these therapists meet your child, evaluate their strengths and weaknesses, and make goals to help improve different areas of “function,” i.e communication, social engagement + play skills, self-care skills (such as eating, potty training, dressing themselves) and their interfering behaviors (how they respond inappropriately in a situation, such as whining, face-grabbing or mouthing).

ABA therapists come to your home and work with your child in their home setting, and teach you ways to work on things with your child when the therapists aren’t around. It’s an intensive program – each session consists of a three hour block, and the minimum is usually 12 hours per week. We are starting with 9 hours because our ABA company does not have enough staff until the New Year, and will work our way up to 20 hours. This is in addition to the other therapies Mathias receives on a weekly basis: speech therapy (three hours), feeding therapy (one hour), occupational therapy (two hours) and art therapy (one hour). Currently we are already at sixteen hours of therapy – we will probably get up to twenty five by February. But this is what Mathias needs to be pushed to learn and adapt and communicate, and we wouldn’t receive this without an ASD diagnosis.

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Smith Lemli Opitz Syndrome: An Introduction

Mathias, SLOS

This post is where I’m going to start our story, because our lives changed the moment that we first heard the words “Smith Lemli Opitz Syndrome.”

My oldest son Mathias was born on July 5th, 2016. 3 days past his due date, and 1 day past the day I wanted him to be born. I had a normal pregnancy and normal ultrasounds, and he was born at a healthy, average birth weight of 7 lbs 13 oz. But it became apparent from day one that something wasn’t quite right (I will write a separate post about our journey towards a diagnosis) and we discovered 8 months later that he has Smith Lemli Opitz Syndrome (SLOS).

Smith Lemli Opitz Syndrome is a mutation of the DHCR7 gene. This gene provides information to an enzyme which is the final step in cholesterol production.

Because of this mutation, Mathias doesn’t produce cholesterol properly. Cholesterol is vital to brain + body development. People affected by SLOS have a wide range of physical and developmental issues.

If you google SLOS you will find examples of the extreme ends of the syndrome which are, quite frankly, described horribly and offensively. You’ll read things like “malformations” “deformities” and “retardations” and your general response will be OMFG. Because it is NOT pretty. And you know what you’re going to be freaked out and sad, if you, like me, googled SLOS to find more information if you found out that you’re a carrier of the mutation or if your child was recently diagnosed.  I’m here to tell you that the things that you read on google are not always, and not usually, the case. As with all syndromes, there is a HUGE spectrum between cases. Mathias is on the mild end of the spectrum. Let me explain in layman’s terms as much as I can.

Some syndromes are caused by an extra or missing copy of a gene (this is the case with Downs Syndrome). If this is a case, your cases are extremely similar. If you bake a cake, and you forget an ingredient, or add an extra one, and every time you make it you do the same thing. So if you make a cake, and add cocoa powder, it will always be a chocolate cake. Downs Syndrome kids are all chocolate cake (because let’s be honest, who doesn’t love chocolate cake? If you don’t, I don’t trust you). But syndromes with a mutation are different, because there are different mutations – the cake recipe changes based on the ingredient substitution. Let’s say that I’m making a cake but I’m not using artificial sweeteners, so I substitute sugar with maple syrup. It still sweetens the cake, but in a different way. Baking is chemistry, so even though sugar and syrup are both sweet, the finished product isn’t quite the same. But what happens if I make that cake and instead of grabbing sugar I accidentally substitute salt? That cake isn’t going to taste right. In the case of mutations, one ingredient is substituted for another and that substitution may or may not be the right fit. Even if it’s an “acceptable” substitution, it won’t make the original recipe. This is the case with SLOS, but because there are so many different mutations of the gene, almost as many as there are people with SLOS, the recipe is always a little different.

For a child to be born with SLOS (or most mutations), one mutated gene must be passed from each parent. So both me and Lucas are carriers – we each have one functioning DHCR7 gene, and one mutated one. If you remember the chapter of genetics in your high school Bio class, you’ll recall that every one of us carries 2 copies of each gene, one from each parent. We both passed our mutated copies to Mathias and ta-da! SLOS baby. In Livia’s case, one of us passed a mutated copy and one passed a healthy copy. Livia is a carrier, like Lucas and myself. But since our mutations are both different, Mathias’ combination is pretty specific to him compared to other people with SLOS.

All people with SLOS share some commonalities: distinctive facial features, small head circumference (microcephaly), some intellectual disabilities + learning and behavioral problems. The neurologists at MGH decided to test Mathias based on his microcephaly, his so-called “failure to thrive” (FTT) and his conjoined second and third toes (a seemingly minor trait shared by 97% of people with SLOS!).

Mathias’ lack of hunger drive, inability to latch at birth, + consequent feeding problems stem from SLOS. The geneticists I’ve spoke to told me that most children with SLOS develop a hunger drive between the ages of 1-3.

He is otherwise in great physical condition, with none of the other physical problems or abnormalities that some others with SLOS have.

As far as his development goes, that remains to be seen. He continues to impress his doctors but he has consistently “failed” the developmental tests done by Early Intervention (with the exception of his social skills, which remain high). He doesn’t eat, he doesn’t speak, he struggles with basic communication and has yet to pick up any sign language. He has impressed me since the birth of his sister in showing empathy and understanding but, then again, Mathias always does well in “social” situations. He could be mainstreamed in school, drive a car, work, live on his own; or he could need special ed, be mostly nonverbal, tube fed and dependent on us for the rest of his life. It’s an unknown for us, but I hope that my sharing can shed some light for others in similar situations.

There are not many of us: 1 in 20,000 children in the US is born with SLOS, and even less are mild because some mild cases go undiagnosed. As one mother told me on Instagram – we’ve won the lottery. Maybe I should gamble more.
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Trying This Blogging Thing, Again

Uncategorized

Remember that time I tried to start a blog?

It was over a year ago, and I thought that it’d be a good thing for me to do. But I wasn’t ready.

I thought I was, but I wasn’t. I was overwhelmed by a handful of life-changing events and I wasn’t ready to share my life because I was struggling and couldn’t handle it.

Since then, our lives have changed completely.

Lucas was working for an a-hole boss who took advantage of him. We were still living in a one bedroom (two moves ago!), we had one very stressful baby who wasn’t growing and we didn’t know why. Then we moved, we started to get answers, we got pregnant again, got more answers, Lucas started a business, we had our baby and then we had baby #2. And a week before I had baby #2, I started to be more open about what was going on, and I was ready to start talking about it.

The first round I wasn’t ready to share, but I also didn’t have a purpose. This time I do – to educate, to advocate and to share someplace besides Instagram.