moogielight

musings on art, life and family from a crunchy mama

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 No Regrets

There is a post going around the special needs/autism community about the ways in which autism ruins parents’ lives. The article, written by someone who knows a family with a child with autism, focuses on the horrible ways in which their lives are affected and advocates for prenatal testing with the option to terminate if a positive is returned. It says all their lives would be better without that child.


As a parent of a child with a rare genetic disorder that comes with  intense behaviors and another child with significant sensory needs that can lead to meltdowns, I share the outrage many feel over this post. It reduces our lives as parents of special needs kids to the hardest moments, to moments the outsider doesn’t understand and doesn’t want to see. It creates an image of us that is based on despair and fear of the unknown. 


Today, our youngest had a huge meltdown at church. One of her self-injurious behaviours (SIBS) is scratching and by the end, despite my attempts to restrain her, she’d gotten her ears pretty good and her face was raw and bleeding. I missed most of lunch to calm her and was rattled afterward. If the writer of this article had looked at my life right then, he or she may have seen only the struggle, may have said my life was being ruined by SMS. 

She would have been so wrong. 

What she wouldn’t have seen during that loud and public meltdown was the incredible accomplishment my daughter had just made, staying in the nursery without me or her dad or her sisters or an aide for the first time. She played for over an hour with the teacher and other kids with no intense behaviors. She had fun. She controlled her anxiety. I sat outside the door of the nursery listening, tears in my eyes, because I was so, so proud of her. 


What the writer wouldn’t see when she hears about the changes made to our lives to accommodate our children is that the bright spots are all the brighter because we and our kids have worked so hard for them. She doesn’t see us gleeful when our girl matches shapes or colors, says “off” with the “f” sound for the first time after months of therapy, when she jumps or stands on one foot. She doesn’t see the amazing hugs our  daughter gives or hear her incredible laugh or watch with amazement as she learns a new sign in a matter of minutes. She doesn’t see that she loves the beach as much as her mama and has a silly sense of humor. She doesn’t see the love she has for her sisters and how much they love her in return.


The lives of special needs parents cannot be reduced to the worst moments. Just like parents of typically-developing kids, there are good and bad moments, hard things that we have to work through and wonderful accomplishments.  Just like parents of typically-developing kids, we love our littles fiercely.

   

If I could wave a wand and take SMS away from my darling girl, would I? Yes, because it makes things difficult for her and it messes with her health. But never would I give up my girl to rid my life of SMS. Never would I consider my life ruined because of this syndrome. Harder? Yes, in some ways, many ways even. We have a long way to go with this challenging diagnosis and like the family in the article, there will be times we have to sacrifice, times we need help to help our girl be her best self. But Aurelia is strong and we, her family, stand strong with her, even when exhausted, inspired each day by her determination, her loving spirit and her silly ways. Never would I reduce our lives to those moments that are hardest. The good moments shine too brightly to be ignored.  

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Yarn Along: Cool Affection

  

I have long wished to knit up a Color Affection. Last fall, I finally picked up yarn for it at a nearby fiber festival. Wandering Wool yarns are the work of a woman living in the DC-area; she hand-dyes them in her small city kitchen. I’ve used the Worsted before (see here and here) and was impressed by the gorgeous color, softness and how beautifully it knit up and held up over time. These skeins of fingering weight – Rock Creek Sock and Ausuble Sock – sat in my stash for months while I worked on gifts for the girls and other little projects. Last week, looking for a simple project I could knit on with the girls around (read: garter stitch), and in the mood for bright greens and blues, I grabbed the fall festival bag from the yarn bin, wound the yarn, and cast on. I’ve just added the first contrast color, so I’m not too far into the shawl, but the vivid, cool colors and easy pattern are very satisfying at the moment and, so far, they are just as lovely to work with as the Worsted. 

I’m listening to One Thousand White Women, recommended to me by a friend. A fictional account, the introduction to the main character’s journals is so convincing I had to look up more information on the book to verify that it was not actually a true account of history. I’m now into the journals themselves and finding it a thought-provoking and well-written story and one that likely has many true-to-history details. 

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Yarn Along: Finished Objects for the Littles

Joining Ginny for the Yarn Along. Just a quick list of some recently finished objects. 

A Hiné for Aurelia (Ravelry notes here).     

Some coordinating legwarmers, a test knit for Luna Grey Fiber Arts with which I’ve since become a bit obsessed (Ravelry notes here). The pattern isn’t available yet, but I’ll let you know when it is.   

I knit up a pair for each girl for Easter (Ravelry notes here and here). Aurelia also got a matching headband (Rav notes here). 

I’ve been listening to travel and adventure stories lately, specifically those of women – Wild, Tracks, and Tales of a Female Nomad. I liked them all; the stories are not so alike on the surface but the women are each trying to prove something to themselves and reinvent their lives in some way and I can relate to that desire. They are also exploring countries or parts of their own countries that they’ve never seen; I hope to explore new places and peoples with our little family at some point. Hopefully soon.

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Yarn Along: Knitting in the Car During Naptime

Joining Ginny for the Yarn Along.

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I’ve mentioned before that Aurelia is not the greatest sleeper. I’m not sure if the sleep disruption that comes with SMS has begun or if she’s following in her biggest sister’s footsteps. Aria routinely awoke every 1.5hrs at 18 months, then for the day between 4am and 5am; fellow mamas with whom I’d meet at that time no doubt remember my incoherent ramblings as I tried – and failed – to put a sensible thought together. Aurelia now is similar, routinely waking around 4am for the day, sometimes tossing and turning throughout the night. One difference between Aurelia and Aria, though, is the naps. Aria slept for hours as I walked the streets of Capitol Hill; at home, she napped for shorter stretches, but still a couple hours twice a day. Aurelia naps sporadically, for short times and usually only when held, the one consistent exception being when we are in the car. She has always been a good car sleeper. Transferring her is out of the question, as she wakes almost as soon as her car seat buckles are unlatched. As she gets older, however, naps are increasingly important in keeping the SMS behaviors at bay, so I’ve started using her naps in the car as knitting time, parking after dropping off Ani at school and idling to keep the heat and the white noise going, weighing the effect on the environment against her need for sleep, the sleep winning for now. In the hour or so that follows – I listen to an audiobook, knit and drink a cup of coffee, a brief respite in a busy day of pickups, drop offs, appointments, phone calls, stories, kisses and hugs, and everything else a mama does.

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In the past couple weeks, I have used my knitting time in the car to finish Nyctophilia – a set of spats (little cowls for the ankles) – as a birthday gift for my sister (she already knows about them, so I’m not spoiling the surprise). I used the luxurious Luna Grey Fiber Arts Calypso yarn, another favorite from Luna Grey’s line. It has a lovely sheen that I hope will look great with my sister’s abundant heel collection. I made one small mod to the pattern, adding a buttonhole at the top (the buttons are purely decorative, as the pattern is written), as I think this will allow them to be put on and taken off more easily and with less stretching over time.

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I’ve also made significant progress on my Samadhi, a lovely shawlette edged with gentle waves. I’m using the gorgeous Malabrigo Finito for this, in a colorway reminiscent of the ocean on a stormy day, a gift from my loving husband. I can’t believe how soft it is turning out; I can’t wait to wear it.

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Yarn Along: Adama

Joining Ginny for the Yarn Along.
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The Adama Cowl is finished and I have to say, I LOVED this pattern. With the Luna Grey yarn, it was absolutely heavenly to knit and the result is just gorgeous, as well as scrumptiously soft and cozy warm. Definitely a favorite. Ravelry notes here.

The girls have been enjoying their Christmas handknits, too. Ani loves her sweater and not only says so often, but readily grabs it to wear whenever chilled in the house. High praise from my über-sensitive girl.

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Aria loves her Milo, too. It turned out a bit big but with her insane growth spurts, I’m OK with that. The extra room will hopefully mean it’ll last a while.

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Schools are closed today. We are covered in ice here, so spending the day drinking cocoa, watching movies, and doing science experiments. The girls discovered the phone this morning, so are taking turns calling us and pretty much everyone they know. It’s pretty cute.

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Yarn Along: Holiday Knitting

Joining Ginny for the Yarn Along.

The Christmas crafting was light this year and even then, I couldn’t manage to get it done in time. Thankfully, my family is patient and understanding (in this area, at least).

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The big girls’ knits are done, but for blocking. I put the finishing touches on Ani’s Miss Rainbow a couple days before Christmas and, after a blessed day filled with lots of dedicated knitting time, wove in the ends on Aria’s latest Milo a couple nights after. They both knew they were coming (there is no secret knitting in this house at the moment, nothing would ever get finished) and are thrilled with them and can’t wait to wear them, which makes this crafty mama very happy.

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Next up is my own mama’s Christmas present, an Adama cowl knit up in Luna Grey Supernova. Thankfully, I have until her visit later this week to finish it up. Or at least that’s what I thought until last night, when I realized that later this week is actually tonight. I would be worried, but I’m making quick progress, so far, and hope to continue the trend in the next few days. As long as it’s done by the time she leaves, I think we’ll both be happy. I’m completely head-over-heels in love with how this is knitting up – the yarn is devine and the pattern is fun, so working on it will be a treat. Those lace sections do take some concentration, though, so it’s not a project I’ll likely make much progress on during daylight kid time. Keith is off much of this week, though, and has been great about giving this tired mama some breaks, so I’m hopeful I’ll get some good knitting time in. He gets it, he does (got me knitting gear for Christmas from my favorite yarn store!), supports my craft and recognizes that some alone time for knitting (or whatever…as long as it’s at least mildly pleasant) = recharging mama, which is valuable to all in the long run.

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Yarn Along – The End of the Rainbows

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Well, after about a year and a half of working on Aurelia’s baby blanket whenever I had a chance, I have finally finished it, just in time for the cold weather.

This is the first baby blanket I’ve ever knit and I love how it turned out. It’s very simple – just garter stitch – but the colors are vivid and lovely. It also has a huge amount of sentimental value. As I’ve mentioned before, the girls called our littlest A “Rainbow” before she was born and with all the challenges we have been through with Aurelia since her birth, the rainbow has become an important symbol for us. So, a lot of love and care and concern was poured into this blanket as we fought for her to get healthier after her birth and waited for and then began to process her diagnosis. She’s sat in my lap watching me knit, played with the yarn, and poked her tiny fingers through the stitches. Now it will keep her warm on cozy on those fall walks, cold winter days and hopefully for years to come.

She’ll no doubt outgrow her Rainbow of Tulips sweater long before that, but I’m hoping she’ll at least be able to wear it through next spring and maybe even next winter. It’s adorable and matches the blanket beautifully (even though some of the colors are a bit different).

Now for my matching rainbow cowl and Ani’s rainbow sweater…It may be a bit of an obsession.

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