Tuesday, December 15, 2009

Julia's Chain

Yesterday I wasn’t having the best day. Not that many things were really wrong…. It’s just that sometimes you can’t be happy and chipper and upbeat. I don’t have many days like this and for that I am very grateful. The day started off by getting Julia to school late – unexpectedly, her insulin pump was low and she wouldn’t have enough to get her through the day. (We’re still working on predicting that one.) Since we were late and Sara, Julia’s Occupational Therapist, was going to be working with her, I thought I would sit in on the session and see what they were working on. Sarah was asking Julia to draw a series of straight and diagonal lines to connect dots and make a mirror image of an already drawn sample. I knew they had been working on this for a while. As I stood there watching Julia and seeing how patient Sarah was with her, my heart was breaking. Julia has a lot of trouble with anything spatially related due to her hydrocephalus. It took her a good ten minutes to do this one little drawing and lots and lots of patient coaching. It was good for me to see but that was the reason my whole day was thrown off.

Last spring, just before Julia turned 11, she finally learned to tie her shoes. It was a huge milestone for her. Something that you and I take so much for granted – passing a string under another string, making a loop with one of the strings, wrapping a string around the loop, and then pulling another loop through. It is automatic for me and maybe for you too. But learning this proved to be really, really difficult task for Julia. We were so happy when she could tie her shoes but let’s just say, it still isn’t easy. She wears slip-on shoes every day otherwise we would never get out of the house.

This past summer Julia told me she wanted to learn to knit. For a couple months, she had been wrapping yarn around two needles and imitating my arms and hands moving. I knew this would be really hard for her and I have never pushed her. I don’t want her to feel that just because I knit, she needs to. I want her to find something she likes and then tries to get good at and enjoy. I want her to find her own passion and successes, not Mommy induced torture.

So I tried to teach her to knit but it just didn’t work. I wasn’t surprised but if she wanted to give it a go, I was game. Then I tried a Knitting Nancy doll which I had bought when she was an infant, just hoping that one day she might want to learn to knit. We tried but holding the yarn with one hand tight against the upright pegs and trying to pull the loop over the yarn that was on the peg wasn’t possible for Julia.

I decided to try to teach her to finger knit. I didn’t hold out much hope for it either. We sat there on the couch, me slipping the slip knot on her finger and pulling the yarn over it, she watching. She said to me, “Mommy, let me try it.” “Okay, Julia, you go ahead,” I said. I held my breath and she struggled to pull the loop over the yarn on her finger. She did it. Then she did it again. We both were so happy. She kept practicing and finally she was able to finger knit on her own without any of my help. On our car trip to Maine this summer, she kept asking me to start her finger knitting. She still can’t figure out how to make a slip knot. I kept making slip knots on the pink Julia Yarn we had brought with us and passing them to the back seat. She kept making little chains, about 10 loops long and then stopping. But she was doing it. Inside my Mommy brain I was screaming and jumping with joy.

Julia is really proud of being able to finger knit. When we go to a knitting event, and we go to a bunch of them, people are always asking her if she can knit. I guess they figure if I knit as much as I do, then my daughter would be knitting too. I always respond to them, “No, not yet.” I know most people we meet don’t know that Julia has hydrocephalus and some pretty major learning disabilities. She looks like a regular kid. She is extremely verbal, a really good reader, cute as a button, kind and sweet. Now, Julia has a new response that makes her (and me) really proud, “No, I don’t knit but I finger knit.”


The other day Julia was sitting on the couch finger knitting away. I was engrossed in my own color work chart but I was paying just a wee bit of attention to her out of the corner of my eye. She kept sitting there, working with the yarn. By the end of the night, there was a jumbled up chain of gold (not pink, mind you) finger knitting starts and stops on the couch. I think most people would have looked at that mess and probably tossed it in the trash. But me, I looked at that knotted up, looped, jumbled bit of gold Julia yarn and thought about all that we have been through as a family to get her where she is now. It was a beautiful little pile of loops and yarn.

Yarn, knitting and stitching as a metaphor is nothing new. There have been essays written ad nauseam about how knitting got someone through rough parts in their lives. I think about this often, thinking I too should write an essay. But then I go off and knit a swatch or wash some dishes and the thoughts escape my head. I know knitting has gotten me through some really unpleasant periods of my life – through many hours sitting in a waiting room while my daughter was having surgery, through the days in recovery, through the hours and hours of watching my child sleep with bandages on her head, hoping that she would be okay, through the hours of physical therapy before she went to school. The list goes on and on. I’m happy I have knitting and stitching in my life to get me through all the twists and turns.



This little chain, as sappy as it is, seems to symbolize something about my life and every other knitter’s and stitcher’s life out there. The stops and starts to get somewhere, the nice even paths and the looped up jumbles of life. It makes me happy to look at it. My uber life-smart Farmer said to me yesterday when I was down, “Julia has come so far and is doing so good.” He’s right and for that I am eternally grateful.


Tonight we will go to the little holiday concert at the little Town Hall and Julia will climb up the three stairs to get on the stage. Jackie, her aid will be by her side, just in case she falls. I will be holding my breath the whole time, hoping she doesn’t trip. There will be many people in the audience who are new to the school, with young children just starting out in pre-school and kindergarten. They will look all look at her and wonder why there is an adult standing close to her. And The Farmer and I will be sitting there proud as punch because she climbed those stairs herself and she is singing her little heart out.

45 comments:

Bridget said...

I can't tell you how much this entry touched me. God bless you and your family.

Tamara Paetkau said...

Just beautiful. Thank you.

SusanR said...

So incredibly moving Kristin. What a wonderful evening this will be for all of you. I enjoy seeing Julia in your blog and the love and joy in her smiles.
As the mother of a low functioning autistic daughter - I thank you for voicing the shear pleasure of seeing your child make each small accomplishment along the developmental path.

marit said...

I'm all teary-eyed here! Thank you for sharing.

Lynn said...

You are so lucky to have uch a lovely daughter.

Nana said...
This comment has been removed by the author.
Kar said...

Yea Julia!!!! So proud of your finger knitting. Keep up the good work. And have a wonderful time at your concert tonight. Sing your heart out dear!

xxxx

Nana said...

As the nana of a special needs grandson, I understand completely. Lovely post, lovely daughter... (Sorry for the deletion above; had trouble posting.)

laura gayle said...

If you celebrate Christmas, why not let Julia have a tiny tree in her room and let her beautiful gold chain be a garland for it?

CONGRATS, Julia! and I can't wait to hear about the concert.

hugs to you all!

Joansie said...

Thank you for sharing your beautiful story. Both you and Julia are special people.

Sarah said...

So very touching.

Alessandra said...

Dear Kristin,
thank you for sharing your emotions with us. Hope your family and you will have a wonderful evening...I'll be thinking of you... xxxxx...

thepaintedsheep said...

You have such an amazing child; she has such an amazing mom. Thank you for sharing this part of your world with us!

Kathie said...

I think it is wonderful that you shared this story. I totally understand and wish you all a fun evening and proud moments and memories.
Kathie

Zitrone said...

What an amazing account of never-ending hope, love, patience and trust. Thank you. Reading this enriched my day immeasurably.

Carol said...

Having met Julia, I agree. She is the loveliest and kindest girl. I loved reading this story and will be thinking about her and those stairs with hope as well.

Beth said...

Tears have welled up in my eyes. Thank you, Kristin, so much for sharing more of Julia's story and the triumph of finger knitting. You, and she, are an inspiration to so many of us.

astoriaAnn said...

These children of ours, they make us so proud and so protective. :) My son loves to finger knit too. It's a wonderful craft. Happy holidays to you and your Farmer and your Julia.

EJ said...

aw shucks - you got me bawling.. bless you both for your love and devotion to your daughter and HER triumphs.

those of us with no children would be in your shoes in a red hot minute.

happy holidays

Deborah said...

Those gold chains are beautiful, as is your family. Julia will help rock the town hall with song!

Jennifer and Steve said...

Oh bless you and your family! What a beautiful post. Thank you for sharing. jennifer

Wendy said...

Kristin,

I wear an insulin pump and mine displays how many units remaining right on the display, giving me enough notice for when I need to change my setup...perhaps a push of the button on Julia's pump would do the same for you?

I'm also an OT...how about a small 2 harness table loom for a fiber activity for Julia?

Wendy

Heather L. said...

This is a very precious story. That is so exciting that Julia can finger knit! It's wonderful for a mother and daughter to share a craft. One wonders how many times we see something/someone and what they are doing and have no idea the story behind it or just how big of an accomplishment it is.

Helen said...

What a great post Kristin. My daughter likes reading your blog and thinks that Julia is so lucky to be living on a farm with so many pets, especially Cora.

Have you seen those clear glass ornaments? You could always slip Julia's yarn chains inside for safekeeping.

Anonymous said...

Kristen, I've been there....our Julia at 35 was born with hydrocephlus back when the surgeries were just becoming successful. Takes a lot of courage and a lot of love to grow them. She recently thought she might like to knit too but shided away from the thought. I always thought she would be a great art director because of her sense of color....Today she has art directed me in a Christmas present vest project for her and accompanies me happily to "yarn farms" in Maryland where she meets wonderful people and animals. I just might try your idea of finger knitting. Thanks for sharing your Julia's victory.

Avice said...

You, the Farmer, and Julia are pretty special. Thank you for sharing.

Mattenylou said...

Tell Julia those look like they'd make wonderful bookmarks... maybe she should give some of her special gifts to her friends that like to read. She sounds like a special young lady, how lucky to both are to have her!

Nicki said...

Heart warming...Thank you for sharing.

onescrappychick said...

How wonderful. Merry Christmas to you and your family. Thank you for the gift of this post.. it was just what I needed tonight when I was feeling down and out myself.

Susie said...

Julia is an amazing young lady with equally amazing parents. This made me *sniffle* as I read it. Truly awesome and very inspiring!

bensedin art said...

Your story touched me so much! Julia and you are really special!

Gerri said...

Thank you. If I work to emulate your patience, Julia's determination and the Farmer's clear vision, and even only achieve a portion, that would be good. You three are great works of art!

sophie said...

well, the above have commented as I would have. As her mother, you don't see the increments of progress because we are with them all the time. But her daddy sees them. He is your Julia diary.

The knitting...those of us who attain calm by doing it, could go on and on, ad nauseum, about its benefits. My neurologist said my MRI has not changed much in the last 3 years and that, I believe, is due to the knitting that I do (I have MS). I noticed haha when I met with my in-laws the other day and my mother and her husband, for dinner, I pulled out my knitting for calmness.....pretty rude but I was feeling very tense.

You will be Julia's best ally, her whole life, always and forever.

Leslie said...

Thank you for sharing. Kudos for and to Julia!

The best to you all this Holiday!

Willow said...

This is a beautiful tribute to Julia. We are all proud of her! Sing your heart out, Julia!

Willow said...

This is a beautiful tribute to Julia. We are all proud of her! Sing your heart out, Julia!

Grand Purl Baa said...

I'm sitting here crying. For you. For Julia. For my son. For me. For not knowing enough. For having so much still to learn. For life.

Sally said...

Fantastic!!

Anonymous said...

I think sometimes we can forget, no matter what our capacities and our challenges, that none of us are truly independent. We all need others to help, to make our lives possible. Some of those others we will never know e.g. engineers who design roads, factory workers who produce goods we use. Some we will know in a very personal way - the people who love and support us. And then there is another group most of us will encounter sooner or later - professionals with special skills such as clinicians, teachers, paramedics - who will be essential to our growth and wellbeing at various stages in our lives. None of us can do it all - we all rely on others. We are in a community.

Betty-Ann

Anonymous said...

Julia is a great kid! I love to see the pure joy in her face in so many pictures. I know that sometimes it's harder for all of you than we can possibly know, none-the-less Julia is a lucky girl and you and The Farmer are lucky parents!

HAPPY HOLIDAYS! -- elizaduckie

amysue said...

I was having a rough morning but this entry about your lovely daughter just made that feeling fall away! I wish you and your family a warm, wonderful holiday season.

I choose not to pump myself, but was chuckling at the start of the entry because a colleague who does pump has come to my office more than once with a sheepish "can I borrow some humalog?". I joke that it's the diabetics version of "can I borrow a cup of sugar?"

Okate said...

I visit your blog once a week, Kristin, so I'm just catching up all the posts over the last seven days.
The entry on Julia's knitting experience is remarkable.

I know I will be referring to your thoughts again for inspiration, but I'm not going to bookmark the entry, instead I'm going to print it out and keep it close.

I can always use a reminder that deep love doesn't come from a sprinkling of fairy dust. However, if I read you right, the rewards for that kind of caring are truly magical.

Marie said...

Beautifully written...all have much in common--among other things, pride in and gratitude for our growing children as they make progress against their various challenges. The finger chaining is sweetly beautiful (and as an aside, I cannot tell you how many adults ask me repeatedly to make their slip knots for them--easy for some, not so much for many others). Thank you for a lovely reminder. Holiday blessings to all of you.

tricia said...

A good friend forwarded your post to me - I am a knitter and have a 20 year old daughter with developmental disabilities. Thank you for reminding me to celebrate the "little things" that are not so little after all. I look forward to hearing more about Julia's accomplishments.

ALW said...

What a great post. You have a healthy and beautiful perspective on life and on your lovely daughter.

I just found your blog today, from Mason-Dixon, and I love it!