On dealing…

It’s a truth telling session, ya’ll.

I am often cheerful and hopeful and Pollyanna about my sons situation but to be true it is so fucking hard sometimes. The appointments and paperwork piles up and all of a sudden I’m drowning and getting a life-saver seems to come through more endless amounts of more paperwork I simply cannot keep track of.

I cannot think clearly. I often miss deadlines and coffee dates. I can barely clean out the dishwasher sometimes. So when this debacle happened you can imagine it was just another thing to chalk up to the side effect of AHC.
I’m not writing this for your sympathy, no, it’s more for my own sense of “shit that happens that you just have to deal with”. Things are harder because of James’ condition. I can’t ignore that. I can’t ignore that I’m not functioning the same either. We missed a letter, which missed a deadline which missed a way to get out of the mess we are in. 

I don’t think anyone in their right mind wants to be tangled up in a government department. They are cold. They are long telephone waits and form letters. They are zero empathy. No one really cares. I am sure it has to be that way. I can only imagine the thousands of other stressed out mothers who let mail pile up at their kitchen counters who call desperately for some help and are shunned or turned away because they didn’t call or do that thing they needed to do in 30 days of some date.
Ya’ll this sucks and it’s been a lesson to me. Even when I’m in the BS, when things are hard and I can’t think straight, I have to try to think Straight. Because once you let something go, no one is going to be around to help you. It’s all on you.

I pray for those families who are in worse shape than I am dealing with this kind of thing. Good Lord how do they cope? I’m so lucky to have a great husband and family (and community) that ultimately when all the tears are shed and the curses screamed, I’m going to be ok. I really truly am. Even as I get these words out, I’m breathing a little deeper and fuming a little less – heck maybe I’ll even knit a fucking row.

It just sucks right now. AHC sucks. Rare disease sucks. Being on the fringe sucks. Asking for help sucks. Deal with it, right?

Deal with it.

Cocoa Brownies

I recently finished a delightful novel titled The City Baker’s Guide to Country Living by Louise Miller that made me yearn to bake! There’s something so attractive to me about baking. The process feeds my need to follow a design (see: Knitting) and I thrive on making people happy (see: personality!). I mean who doesn’t love desert?

I think if I had all the time and money in the world I would definitely sign up for a pastry chef program.  I would love to learn the craft and science of how to make things that people drool over.


Speaking of drool, these are my absolutely favorite – my cocoa brownies. I make them any chance I get whether it’s a barbecue with friends, hosting a playgroup or a Netfix and chill night with my husband. 


First let’s start with the good stuff – the cocoa! The better cocoa powder you can use the better the brownies will be. Our old standby is Ghiradelli’s cocoa powder which can be found at most supermarkets. To me it beats the taste of Hershey’s any day and has the chops to stand up to the fancier Sharfenberger cocoa.


After mixing the sugar, cocoa and salt together with a whisk it’s time to add the melted butter. 45 seconds in my microwave usually melts a stick without overheating it. Sure, you can melt it over a stovetop but I’m quite impatitent when it comes to waiting for the butter melt and then to cool. Mother of 2 toddlers – I’m usually wanting to get those brownies in my mouth ASAP.


While whisking pour the butter in – I like to really whip it after it’s all in there just for good measure. Next add the vanilla. Whip some more. Whip it, whip it good.


Now the eggs.  One at a time and really work the batter until it’s completely incorporated. I can’t stress enough how this part really makes this brownie. Definitely put eggs in one and a time and don’t  be cheap on the mixing. Keep going until your forearms burn and until the batter lightens in color a bit.

The last part is mixing in the flour. As fierce as you were with mixing in those eggs, you want to fold that flour in gently, as if you were making a merengue. Gently, gently until it all comes together! 



Pour the batter into a greased 9×9 pan (I used coconut oil spray) and spread it evenly with a spatutula. Using a knife, scrape the spatula down and add the bits to any corners that need love. (And or feel free to lick ;-))


Bake in the oven for 25-30 minutes or until a toothpick comes out clean. Try hard to wait until the pan cools before cutting in and devouring. We find it a huge triumph if we haven’t eaten the whole tray in one sitting. We take our will power (or lack there of) pretty seriously.


My dad loves to have this with 2 huge scoops of ice cream on top. I prefer the corners and my husband the gooey middle. (Match made in brownie heaven, we are!)

Full Recpie Below

Adapted from Bon Apetit

Cocoa Brownies

Makes 9 3″ X 3″ brownies

1 stick butter melted

1 c 2/3 c. Sugar

3/4 c. Cocoa

1/4 tsp Salt

1 tsp vanilla 

2 eggs

1/3 c. Flour

Preheat the oven to 325

Grease a 9×9 pan and put aside

Melt butter in the microwave or saucepan, let cool 

Whisk together the dry ingredients. Add butter by pouring in slowly while whisking until fully incorporated. Add vanilla. Add eggs one at a time and whisk vigorously until each has been incoporated and batter is a little light and fluffy. Fold in flour.

Pour batter into a 9×9 brownie pan. Cook 25-30 minutes or until a toothpick comes out clean.

Enjoy with your favorite ice cream or alone in all it’s glory! Be the talk of the town or your couch!ūüėČ

Love and brownies,

Margaux

Cinnamon Girl

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Woah people, I am in love. It’s real and it’s deep and I am so excited I wanna sing from the roof tops (but I don’t want to scare my neighbors)! The only thing¬†I need now is for the temperature to drop so I can wear this (and buttery leggings) all DAY everyday!

Let’s go back shall we. Long time readers of this space know I am a lover of knits especially ones that are very wearable. I am not a knit “just to knit” kind of girl. I need purpose! I need couture! I need coffee!

I will always choose a garment¬†that I can wear. So, two years ago when I was hanging out with the always wonderful Amy Christoffers (savoryknitting.com) and she whipped this beauty out and I fell hard. It wasn’t even close to being published and I was all “just take all my money!!” What made the whole situation even sweeter¬†was that it took one ball of Jill¬†Draper’s Empire which I happened¬†to come across over that weekend. Pattern check! Yarn check! It was ON.

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I am pretty sure I got home and couldn’t¬†wait to cast on. Soon I had the sleeves and body ribbing done but stopped when I started the cable chart. Something was off and I couldn’t figure it out.¬†My early version had a little hiccup which I totally didn’t have the brain capacity to fix myself so I put it away and went on to other knits.

Fast forward to a few weeks ago when I ran out of yarn for my current knit (Dotted Rays by Stephen West) I needed something to help keep my knitting mojo up. While searching around for various WIPs I came across the finished sleeves and knitted rib of Cinnamon Girl! Hurrah! A quick Ravelry check and sure enough the pattern was perfection and I was well on my way to my first finished knit in over a year.

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Bad Hair Don’t Care! (and oh hey James! :-))

Dudes. I don’t even care how bad my hair looks in this picture. My love for this sweater so big that I didn’t even make the time to fix it before posting!

I almost forgot how Blocking is Everything – and it shows with this sweater. At first when it was done I was worried the sleeves would be too short and snug all around. No, no. A bath in my fig scented Soak opened up those stitches beautifully and now they are almost “too” long but just the way I like it.

I can’t wait to wear this beauty at Rhinebeck this year! It feels SO GOOD to have a finished sweater to show for and wear and know every moment I had a chance to knit it was well worth it.

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Project Details:
Pattern – Cinnamon Girl by Amy Christoffers
Yarn – Empire by Jill Draper Makes Stuff

 

On being enough.


Lately, James has been having episodes daily for no apparent reason. We may be sitting watching some Mickey Mouse or pretending to go on vacations or cooking at his kitchen and then he’ll be staring at his hand. He’ll point to the one that is losing feeling or he’ll simply look up and I can tell something isn’t right because his eyes aren’t focusing together. Whatever the trigger, I’ll scoop him up ask him to lay his head down on my shoulder and rest. “It will pass soon if you just rest,” I’ll say.

When James was a baby I remember doing this and feeling so frustrated because he would squirm a lot. He wouldn’t or couldn’t understand that if he were to just hold still, to close his eyes he may be able to pass this moment without it getting worse. It seems easier now, even though he is heavier, that he follows this direction which inevitably leads to him falling asleep on me.

It’s always a fight in my head when this happens. Ideally it’s near a nap time so I can try and lay him down in his bed which works 50% of the time. Either he rolls on in or pops right back up with a drool-laced grin on his face wanting to go back to playing. But today I am just holding him because it’s too soon for a nap and I’m hoping this moment will just pass lightly.

I look to my youngest son who is obsessed with trains right now, “Cho choo-ing” to his heart’s content until he notices I am carrying James a little too long and he immediately drops his toy and runs over to me screaming “mama!” with his hands up in the air. “Oh Ben”, I say, “I can’t pick you up right now. How about a video on the IPad!”

Ben is going to be a master programmer for Apple by the time he turns 2. I haven’t the space in my brain or heart to feel guilty about his screen time. I watch him scroll past movies and press play on the ones he deems worthy. He looks up at me smiling happy to have his entertainment system. He begins to look around for that train he dropped before. He may have his IPad but he wants his “Choo Choo”, too.

These moments come and go in my regular routine. James may have one good day followed by 5 days in a row with episodes. Sometimes it’s more predictable but mostly they come without warning or care. I keep clinging to the idea that they are only temporary. That he won’t have episodes like this when he’s older. That it will be weeks or months between them. I know Ben won’t be 20 months forever either. My heart breaks and aches thinking of this. So today I’ll just sit with my son asleep on me, my youngest “Choo Choo-ing” and swiping away realizing that this is the best I can do and that it’s enough.

WIP: Cinnamon Girl

I actually have some knititng to show for!

I had been working on Steven West’s Dotted Rays for a few weeks but after I ran out of yarn (waiting on reinforcements) I decided to look through my WIPs pile and found that I had two sleeves done from Cinnamon Girl by Amy Christoffers!

Dudes, sleeves can be a downer so naturally when I saw they were done I was all “let’s get this finished!”

There’s something great about a cabled sweater, because you have so much to do it makes it move along quickly. So quickly in fact that I was cruising along nicely until I realized I did the cable chart wrong.¬†I doubled the diamond part without realizing it. I blame knitting while watching Stranger Things! (Which by the way lives up to the hype! So good! Winona Forever!)


I thought for a hot moment that I would just rip back the cables and not the entire row but it would have proven too complicated. I could also have left it and doubt that many would notice but I know I would.

Ripping hurts a little bit more in this stage of my life where knitting time comes at a premium. All those precious minutes spent working all for naught. While I like to think I knit just to knit – I am very much driven by the end product.

I cannot tell you how excited I am to finish this sweater. Did you know I haven’t finished a sweater since 2013? I realize that may not sound that crazy but you’re talking to a girl who could knit 14-15 pieces in a year down to 1 every 3.

I hope to wear this sweater at Rhinebeck this year and who knows if I’m lucky (which I doubt) maybe I’ll finish a 2nd one in time! (My eyes are on you Flaum. ;-))

Presenting Jams for James!

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One of the many things I’ve dipped my hand in these past few months is working a direct sales gig with Jamberry. Since I haven’t been able to do much it’s been a wonderful way for me to exercise my brain in a non-mom way!

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I bought my first nail wrap in a fundraiser for AHCkids.org, the sister organization to CureAHC.org, and fell immediately in love. I threw a party of my own and soon after decided to join up. I figured if I didn’t go anywhere with it at least I have a product I love!

Well, it’s been more successful than i could have ever imagine. I use the business to spread awareness of Alternating Hemiplegia of Childhood as well as donate my commissions to CureAHC.org. Everyone who I get to talk to about nail wraps hears my story about James and I think feel good about getting a beautiful manicure for a wonderful cause.

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After working for a few months I decided to do reach out to one of my favorite designers (and former blogger) Jessica Jones to see if she’d be interested in designing some nail wraps! To say I was thrilled she said yes is an understatement. I had a complete fangirl moment! (I sure did, Jessica!)

With her flair we designed 8 beautiful wraps that are going to be sold on a limited run to help fundraise for CureAHC.org.

I call them Jams for James!

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I can’t even pick a favorite, I love them all so much! What makes this whole campaign even sweeter is that I have a secret benefactor aka “Team James Guardian Angel” who will be matching my donation to CureAHC.org! ¬†So get while you can!

If you are interested in trying a sample of Jamberry wraps go here —-> Sample Request!

Ready to have a beautiful manicure for a wonderful cause, order here —-> ¬†J for J Order Form!

The best part of Jamberry nail wraps? Doing your nails and not having to wait for them to dry in order to knit!

xo,
M

Evolving

2016-07-12 01.08.38 1.jpgI miss you. I miss all of you. I miss blogging about my life and interests but feel so disingenuous if it’s not about knitting.

Lately, my knitting has been sitting dormant on my night stand, collecting copious amounts of dust. I try to take it out and work on it but ultimately I can’t seem to get a stitch done AND what I’ve come to learn and accept is that it’s OK. It’s what my life is at the moment.

I can’t however stop creating and doing. I’ve picked up new hobbies, have concentrated on a new business (tentenjams.jamberry.com) and have been engulfed in the mommyhood more than I’ve ever anticipated.

So we are evolving into tentenLOVE. I want to share more stories about my amazing family. I want to share my dabbles in other fun creative activities (hello Hand Lettering!). I just want to be able to use this space and in a way that reflects more of who I am now.

So I will tentenKNIT or tentenBAKE, maybe even tentenDRAW, and definitley tentenDANCE. I will tentenSHARE all the things in my chaotic life including stories of my sons and their lives.

I hope you stick around to see what’s in store!

XO,
Margaux

Well, hello there.

I’ve opened up my computer to write something down so often these past few months. When I do it’s usually late at night (which it is now) or I have about 5 minutes to my name and I should probably do something more productive (like shower). Ultimately, I only get a sentence in here and there, much of it never really making any sense. So, in the end, what I’m trying to say is: Hello.

Life is a blur with toddlers. You end up covered in drool, spit up, smashed bananas, or whatever cereal bar you decided to give your 2 year old that day. You wonder what your life was like before children and what you possibly did with All That Free Time.

You begin to understand that this is your new normal and work hard to getting some of your old self into your new self.¬†I try to knit but every time I get a moment it’s usually sucked into cleaning or playing ref or zoning out reading Facebook or Instagram. I’m in that mode. That “just get me through the day but I love my babies so much” mode. My hair is a mess, my poor teeth are crooked (sorry Invisalin!), my pants are sweats, and I can’t remember the last time I wore something other than flip flops on my feet.

Life with my son’s diagnosis is hard. Really hard. I didn’t realize what a tough cookie you have to be when you have a child with special needs. I like to think that I am Mama Fierce but really I just need a good hug sometimes. (or a bottle of wine)

My son’s issues right now are mostly physical. He will have days where he can’t use an arm or leg and needs a ton of support. Those days are happening weekly and come without notice. We could be playing pretend at his kitchen and then all of a sudden I need to hold him up. He is never happy when this happens. It’s an emotional roller coaster. There is not much brain or phsycial power to knit…

BUT dear readers this is not a “I’m not going to blog anymore” kind of post, no no! You can’t get rid of me that easy! You’ll have to pry me away from this blog! This is a “I’m feeling the spark again!” post and I need to TRY to give this part of me a chance to thrive. ¬†This is me dusting myself off, putting “Eye of the Tiger” on blast, raising my knitting needles in the air and shouting “I will not go quietly into the night!”… ok, I think you get the picture.

It’s also helped that there has been so much knit inspiration around me lately. There are some really beautiful patterns out there right now. Ones that have me buying bags of yarn late at night without hesitation. “When will I knit?” Ahh who knows! I’m knitting with no abandon! TO hell with being tired. ;-P

So before I get into all that good stuff, I felt I needed to break the ice. Thanks for hanging in there and keeping my link in your feed. Hi. Let’s be friends again.

And that you to that person who over the weekend gave me an umph to just start writing again. Thank you… I’m trying!!

Knit on,
Margaux

PS. You’ve probably noticed too that there’s a different look going on. I’m migrating from an old blog platform to a new one. Bare with me while I try getting all the photos and links back up! I know what you’re saying, “sure, Margaux, with ALL that free time you have!” lol. I know, I know. I’m crazy.

A new pattern: the James Cowl (for AHC awareness)

Unless you were living without electricity I am sure you saw the phenomimon that is the Ice Bucket Challenge. It all started with Pete Frates, a former Boston College baseball player who was stricken with ALS and has decided not to raise the white flag. I find it's viralness so inspiring and very personal.

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As you may know, if you've been reading this blog or bought a copy of the Cowl for Nick that I had someone close to me who was diagnosed with ALS – the father of one of my best friends. We lost Nick over a year ago and it still stings. He was a generous, caring, funny and downright amazing man. He had a wonderful personality and humor that still shines through his wife, daughter, son and his beautiful grandchildren. He has left a wonderful legacy behind but, oh, how we all wish he was still here to enjoy it.

To see the world becoming more aware of this disease and seeing ALS organizations around the globe benefiting from heightened donations is amazing. I even got pretty defensive for all the cynics who didn't get it. Awareness = progress. 

I often think of ALS when I see my son going through his bouts of paralisis. I imagine that his frustration is similar to those who are losing control of their muscles with ALS. Both persons are so sharp mentally but their bodies are unfortunately failing them. Of course, AHC (Alternating Hemiplegia of Childhood) affects a far less percentage (approx 350 cases in the US alone) and is not nearly as fatal as ALS but it still deserves attention of it's own.

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James Cowl
Yarn: O-Wool Balance Bulky, 2 skeins, peridot
Needles: US 10.5

It's with that in mind I give you the James Cowl. An easy, chunky cowl, knit up in no more than two-three days – a perfect last minute gift. All proceeds of this cowl will go to towards medical research in finding an effective treatment for AHC. In fact, 50% of the proceeds of ALL my patterns going forward with go towards AHC research. Right now all we have are experimental drugs and ideas of what can help. We need something more concrete.

I often reflect on the philosophy of "What do you love to do? What are you good at? Who needs you to do these things?" Well it's time I offer my talents to this group of deserving people including my amazing son. Perhaps that's why I was gifted with this knit talent in the first place.

If you want to donate or do more for our cause please visit CureAHC.org and AHCF.org to help! We are a small community but a hopeful and proud one. Our children are strong individuals and while they struggle with physical and mental road bumps, are the most inspiring people we have ever met.

Buy a pattern, get TWO, or threeūüėČ Make a cowl, gift a cowl, share this post and keep warm.

Happy Knitting!
Margaux & James

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