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.

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

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 three 😉 Make a cowl, gift a cowl, share this post and keep warm.

Happy Knitting!
Margaux & James

Jamesandiprofile

here i am, rock you like a hurricane

My boyfriend and I have invested in yet another useful tool of destressing – a second wireless Guitar Hero guitar. 

Where we would entertain each other by rocking out ballads in those addicting green, red and yellow buttons we now battle each other to ultimate GH glory and bragging rights.   We could spend whole nights and weekends in front of our tv playing games and be fully content in our little world.  Guitar Hero is probably not your typical relationship bonder but I’ve learned a great deal about myself and our relationship. Last night we were playing a game before our italian delivery arrived.  I was feeling all sorts of sickly as my allergies were in full bloom so I figure, he’s finally gonna win one. 

We played about 5 battles the night before and I beat him each time.  When those rock fingers went up in the air and the screen brightly flashed, "Player 2 ROCKS!" I couldn’t help but smile and feel this warm sense of accomplishment.  Video games are his domain. If we played any other game he could play with his eyes closed and send me to bed steaming.

So I figured since he’s got the advantage, he will finally win this one.  We were playing Pearl Jam’s Even Flow and were neck in neck making it to Sudden Death.  I thought I just won’t play so well and miss one so he can just win.  But when those little skulls come at you, you can’t help but to concentrate so hard. Without thinking of it I flicked my wrist to send the death blow over – and sent him on the losing train home. I couldn’t just let him win. 

What probably shocked us both after all was said and done was that staticially he won! He got the better score. He hit all his notes where I just played a mediocore game.  And yet the PS3 still deamed me the Guitar Hero.  He didn’t so much as say "Well, that’s stupid" and calmly put his gutar away when I realized if that was me I would have thrown a hissy fit of mass porportions claiming that all video games are Unfair and Dumb!  Followed by a 80s metal band worthy smashing of my guitar on the ground and into the closest tv speaker.

I am obviously relishing in this delight for now because I know it’s only a matter of time before he gets better and puts me back in my amature video game playing place.  Thank God he doesn’t know how to knit.