Fingerprints and Lost Souls

This past July, I spent two weeks in Poland with a friend.  I would call it life-changing, but those words are frequently thrown around lightly.  It was transformative.  For the longest time, I have counted on other people for guidance, and for instructions as to my plans for life.  I have spent the past sixteen years trying to choose an undergraduate major, for goodness sake!



Poland was a chance to journey far beyond my own comfort zone; I spoke maybe three words of the language, I knew nothing of local culture, and had I only located it on a map several days before leaving for Krakow. It was as close to a different world as I have ever come.

As fate would have it, I also ended up with ample time alone to explore cities.  I fell in love with the small, friendly, warm atmosphere of Torun, I explored the artisan booths and shops of Wroclaw, and I toured Wawel Castle and surrounding areas of Krakow.  The cities were breathtaking.  As someone who has never toured Europe much, seeing buildings that have withstood hundreds of years of wear and tear, never grew boring.  Beautiful little sculptures adorned street corners and town squares.  Cathedrals took my breath away.

But somehow, the opportunity to walk around, completely alone in my own language in my own mind, both terrified me and woke me up.

See, I'm an anxious person.  And poor sleep, stressful situations, and unexpected changes, all exacerbate my anxiety.  So I walked around Poland a bundle of nerves.  And as much as I could see that as a horrible waste of a trip, I don't.  It taught me so much.  I learned to watch faces, which are universal.  I saw the same fears, the same hopes, the same resignation and exhaustion, and the same determination that I see in people in the states.  My naturally anxious state also gave me ample opportunity to practice all the calming techniques I have been practicing.  I haven't decided whether they work yet, but I know that I can survive major stressors now.

The best thing that being alone did for me, was to make me decide to go discover.  I couldn't sit in the hotel room, so I had to go out and walk around.  In my walking, I toured a castle, I got lost in alleys, I found solace in pouring rain to hide my tears, and I found an art piece.

Scouring the internet, I can't figure out what it's called.  It is right below the Dragon of Wawel Castle, but it is a fingerprint.  Looking at it when I found it, and looking at it again now, it brings me to tears. Something about it is so intimate.  It speaks to me of wanting to be known.

And for this lost soul, halfway across the world, I longed to be known.  And in those weeks, I began the journey of knowing myself.

The Catharsis in Seam Allowances

People often comment that it's surprising I get anything done with 4 kids, or that I have the patience to quilt.  It has very little to do with quilting, and everything to do with release.

Quilting, for me, is release.  It's relief.  It's a chance to think about life and my next steps, without any interference or judgment.  It's me, a machine, and silence.  Making something from nothing.  Taking all the chaos of my brain and making it orderly and beautiful.

For that reason, all the quilts I've made after my initial 'learning to quilt' time have a strong theme in my mind.

While I was learning to quilt, I made these.  They were more "learning steps" so don't have any theme beyond that:

1) Sam's throw
2) Izzy's throw
3) Abby's throw
4) Alexander's throw
5) Thomas Quilt (for Alexander)

These are all the quilts I've made since:

6) pink quilt - sent to mom
7) Star Wars Quilt - Sam for Christmas
8) Stripe Throw - sent to Katie Biron
9) Abby's Pinwheel Quilt - 1/1/14
10) Izzy's Pinwheel Quilt - 1/25/14
11) Snapshot Quilt - queen - 2/27/14 (89"x101")
12) Forest Animals One Block Wonder throw - 5/17/14 (54"x62")
13) Rainbow Chevrons - 5/28/14 (74"x97")

The dictionary defines catharsis as the process of releasing, and thereby providing relief from, strong or repressed emotions.

I can state, with no question, that the last years of my marriage were filled almost entirely of strong repressed emotions.  Quilting, quite accidentally, has become my release.

Each quilt I have made has been an essential piece of the healing process.  Some, quite unexpectedly.

Since my first five 'learning to quilt' projects, the physical steps in quilting haven't changed, but my thought process has.  I quilt for me, and end up with a beautiful item in the end.

*Pink Quilt
When I started the pink quilt I sent to my mom, it was maybe 2009?  I don't even remember.  I sewed the quilt top, the seam allowances were slightly too big, and then I got stuck.  I didn't know how to finish it, so I stuck it in the basement for a few years.  I found it once I had started quilting my kids' throws, and thought about finishing it.  The entire project was full of imperfections.  The seam allowances were 'off', I couldn't find more fabric to match it, and I thought the whole thing was ugly.

Slowly, and with lots of thought, I solved each of those problems.  I added an inner border to deal with the seam allowance differences, I looked through my entire fabric stash and discovered that I had bought more of the same fabrics and misplaced them, so I had matching fabric.  But most of all, I just kept going.  I called it 'the ugly quilt' the entire time I was sewing it.  But once I finished it, I fell in love.  It wasn't my taste, but it was beautiful.  While I was making this quilt, toward the end when I was realizing its beauty, I started thinking about things that seem ugly but turn out beautiful.  I thought about unexpected turns in life and about doing the next thing.  The release in this quilt was my slow, beginning realization that not everything has to be beautiful and shiny and perfect.

*Star Wars Quilt
For the rest of my life, when I think about the Star Wars quilt, one mental image will come to mind.  It is me sitting in my sewing chair, turned around looking at all the blocks on the floor, and talking to J, who was sitting across the room, about divorce.  This is the quilt that was laid out on the ground while we discussed divorce.  This was the quilt that sat in a bag at Kayli's house while I lived there for 2 months because I was homeless and waiting for support.  This is the quilt that I finished for Sam for Christmas, while I lived at Kayli's house, knowing that it was for a bed that didn't exist, in a house I had never seen.

In my mind, I call this Sam's divorce quilt.  I thought about how the divorce will affect him as I quilted it.  I thought about the baby he was, and how excited and hopeful I was to have him, and about watching him grow up and about how I felt like I was losing my way as a mom because I couldn't help him.  Quilting this, I thought about how much I love him, and how much I worry about him.  I desperately hoped that he would be ok in this divorce process.  There are so many sobbing tears sewn into this quilt - not of hopelessness, but of change.  This quilt showed me how very little control I have over my life, related to Sam.

*Stripe Throw
In between working on quilts for the kids, I signed up for a Christmas gift swap on Make Laugh Love.  I chose Katie Biron as my partner, and knew I wanted to make a throw in her favorite colors.  I had seen a similar quilt, I thought, but couldn't find it online when I wanted to make mine.  So, I just figured it out as I went.  I chose a jelly roll in 'sunset' and went to work sewing the strips together.  It went together smoothly and then I meandered the quilting.  I thought about Katie and her sweet girls and Andrew and all the ups and downs in his birth and first few months.  I thought about unexpected events in life, about rolling with changes, and about how much I love the friends who hold me up.

*Abby's Pinwheel Quilt and

*Izzy's Pinwheel Quilt
When I moved to Florida in June of 2013, it was with 4 kids.  Their dad was still in Seattle for 6 more weeks, so it was just me.  Sam was sleeping 2 hours at a time, and then in 15 minute stretches.  Rather than be woken up thirty or more times a night, I chose to stay up late until he fell asleep for his 2 hour stretch.  That meant I had hours every night to spend sewing.  It also meant I spent hours online talking to my ex, reassuring him that everything was going okay, I was trying to work on marriage issues, etc.

While I babysat online and dealt with Sam's night wandering, I sewed.  I started by sewing a few pinwheel blocks from a swap I had done online several years prior.  Then, I sewed more.  And more.  And more.  Eventually, between June and December, I sewed 320 pinwheel blocks.

I laid out Abby's pinwheel quilt in Kayli's living room, with her telling me which blocks looked better where.  The colors came together better than I could have imagined, and I sewed the blocks to the sashing and into a quilt top in my new condo during late nights.  Tears upon tears went into the creation of the quilt.  I worried about the effect divorce would have on Abby.  I worried that she would blame me or hate me.  I worried that she would feel unloved.  I hoped and prayed that she would come out the other side stronger and more confident.  Finally, I finished the quilting the day she broke her arm.  It was wonderful to go home and place a quilt on her as a comfort and hug from mom as she was hurting.

I also laid out Izzy's pinwheel quilt in Kayli's house.  I chose rainbow order and a crazy bright border, which fits everything about Miss Iz.  I joined all the pieces to the sashing, and then quilted it all in the first weeks in my condo.  I spent so much time worrying about Izzy's sweet tender heart, and if she would ever recover from the feelings of fear and betrayal she felt at being away from me.  Sobbing tears were quilted into her 'divorce quilt', in the hope that her life would see more joy after that.


There were more catharsis quilts to follow, but I'll save those for later.

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Quilting Imitates Life

Wrote this draft in September 2014.  There's more to the story than this girl ever knew.

The more I consider which quilting posts to write next, the more I realize how inextricably my life and its events are linked to my learning to quilt.  And how writing only about quilting is hollow to me.  It tells only a fraction of the story.

But starting at the beginning seems both unwieldy and unnecessarily boring.  So I'll start with the good stuff - the sewing.

For years, I made quit tops and never did anything with them.  I loved the math, the symmetry, the challenge of choosing colors that worked well together, and the beauty and art in the orderly.  But I didn't know the next step.  I watched a few tutorials about quilting, but never took the next step and tried it.

This also corresponded to a time in life when I was busy having babies and being a full time mama.  Maybe it's just me, but there's something in full time stay at home motherhood that, while rewarding for what it is, made me wonder if I had lost brain cells and skills.  I doubted that I could learn anything new.

So my quilt tops sat in a box, moved between houses as more and more children entered the family, I lost more and more of myself.

At the end of 2012, I decided that something needed to change.  I was tired of feeling unaccomplished. I could make a budget, run a household, mow the lawn and make a home, but those seemed so. . . repetitive.  Unfulfilling.  It likely didn't help that I had the constant "you're not enough" being whispered in my ear by my ex-husband.  He never directly said it, but he would ask what I did all day, or he would comment "if you were smart like us" to me when he was around friends.  I started to believe it.  I believed that I couldn't learn new skills or make decisions or control my own life.

For Christmas 2012, I quilted little doll quilts for my girls.  Then, I decided to make Christmas gift throw quilts for my kids.  I didn't actually finish them by Christmas, but they were great January gifts.  And I started something and saw it through to completion.  And I learned a new skill.  And something in my brain changed in a dramatic way.

My new desire to be more independent and more in control of my life didn't go over well everywhere.  My husband felt very threatened by any desire on my part to change.  Several times, he told me "I liked the girl I married."  I agreed that she was sweet at 22, but no one stays 22 forever.  People grow and mature and become something new.

To be continued...

Resolution Update

In January, I wrote a list of areas of life I planned to improve
.  Here is the update.

This year, I will work toward:

1.  Loving my kids well.
If I have succeeded in nothing else, I am doing this.  My entire outlook on mothering has changed. I treasure my time with my children, and they constantly ask to spend more time with me.  I love it.  I spoke with each of them separately as they fell asleep last night, and each affirmed what I have known in my heart for awhile now - they feel loved and safe.

As for the honest side:
This is hard.  I often wonder if parenting his this difficult, exhausting, and intense for everyone.  Does this somehow mean I'm doing it wrong?  Or that I'm not cut out for it?  Or that I'm somehow inadequate?

In reading books by Brene' Brown, Glennon Melton, and similar, I am coming to realize that maybe I am feeling parenthood as an intense experience because it is.  I am giving everything I have and more, and it leaves me absolutely empty and drained at the end of the day, sometimes even crying at the sheer exhaustion.  Then I go to sleep, wake up, and do the same the next day.  In this way - in this beautiful, brutal calling to empty myself daily, I am doing exactly what is meant for me in this stage of life.  Maybe this is difficult because I'm all in, trying to keep treading in the deep end, while the water rages.

2.  Developing a plan for Sam.
If effort counted for anything, I would be lightyears ahead of where I am now.

I interviewed the director of the perfect school for him.  But it requires that he have ABA set up.  Sam's dad changed jobs on May 1, which changed his insurance to one that specifically excludes ABA.  So.....back to square one, and in the last week of the school year.  This is causing quite a bit of stress, and feelings of inadequacy.  It's difficult to count on someone else to look out for my boy's best interests, when it seems to me that's clearly not his first priority.

3.  Enjoying singleness
I have made great strides in this area.  I still find myself deeply lonely at times, but this no longer means I look for short term relationships.  I am learning to enjoy time to myself.  It's a small, but dramatic change.  I still have considerable work to do in this area, because I don't know that I'm anywhere close to ready to date.

4.  Finding a job that suits my talents better (with insurance)
Hmmm.  Can't say I've done this.  But I'm moving to something better.  A week ago, I signed up for real estate courses, and am progressing through them well.  If all goes as planned, I should be able to take the licensing exam by the end of June.  It won't provide great insurance, but it is a flexible job that will utilize my talents.

5.  Better balancing work and parenting
I am happy to report that this one is being done.  One day a week, Alexander visits "kid sitter" while I work.  Otherwise, I've been working while the kids are gone.  My workload is much lighter, so I am enjoying free time while kids aren't with me, too.

6.  Blogging consistently and honestly
Um, oops!  I've been thinking of blog posts, but they haven't come to fruition.  There have been massive changes with Sam, mostly good, and I haven't really updated them.  He is also back to very intermittent sleeping, which has made doing anything else. . . trying.

7.  Publishing 2 patterns on Etsy
Haven't done this at all.  Not even the first step.  But I'm sewing again, which is making me happy.  And I have patterns in my brain.  So it's possible by December.

8.  Making a five year plan
I do have a five year plan.  I need to write it out.  It involves real estate, learning house repair and millwork, and paying off debt.

9.  Making my house a home
I am doing this!  I'm proud to say my house, for the first time in 10+ years, feels like home to me.  We live here.  It is a place we are happy and safe.  It is not just a place for our stuff.

This year has been nothing like I expected, but I am making positive steps.  Onward and upward!

Wading into Deep Water

I know I should stay out of the internet vaccine debate.  All logic would dictate so.  But the more I read, the more I realize that my unique viewpoint has not been voiced.  And rather than silence my inner protective mama bear, I will let her out on the printed page for my own solace.

In recent days, I have heard several variations of the statement, "There are worse things than being autistic.  I'd rather an autistic child than a dead one."  On the surface, yes.  I wholeheartedly agree.  Like everyone else, I would prefer living children.

According to the CDC website (cdc.gov), 121 people in the United States have contracted measles between January 1 and February 6 this year.  The current population of the US stands at 316.1 million people.  So anyone living in the US stands a 0.000038% chance of contracting measles.  Measles kills an average of 1 of every 1000 people who contracts it, so the chance of dying from measles is even lower.  However, I realize that no risk is zero, and any child dying of a preventable disease is truly horrific.

On the other hand, the autism rate in the United States is 1 in 88.  For boys, it is 1 in 54.  My son, as I have written before, is one of those children.  He is also in the process of being diagnosed bipolar.  When making statements like the one above, I believe that most parents look at autistic individuals who lead happy, fulfilling lives.  People with autism who may have completely different life goals than neuro-typical people, but who function in a fashion that makes them happy.

Let me tell you about my sweet Sam. 

Sam is ten years old, and he is scared.  He is scared all the time - of himself, that he will hurt himself, and that he will hurt other people.  His fears are not unfounded.  In the past two months, he has injured himself during a psychotic episode (sustaining bruises from banging himself against walls and furniture), and has injured me (he bit me, dislocated my nose, gave me a black eye, and I was covered in bruises).  He has also punched his younger siblings and attempted to do more, but I have intervened.  Once these episodes end, he is apologetic and doesn't remember details, or why he lost control.

I am in the middle of the hardest process of my life - losing Sam into his own brain.  Even with powerful, somewhat frightening antipsychotic medication, he is losing memories and parts of his personality.  The child who used to love Legos, barely remembers how to play with them now. 

I appreciate the medication, truly.  He now knows my name and recognizes me again.  But he is regressing, slowly and surely.  Also, any individual antipsychotic medication usually only lasts 18 to 24 months before it stops working.  So we have bought time with Sam being somewhat lucid, but we are in the process of a long goodbye.

For this reason, I understand vaccine fears.  I will not surmise that a vaccine caused or contributed to his autism.  But since he does have what the CDC calls "an unstable progressive neurologic problem," any further vaccination is contraindicated.  The CDC also advises caution in vaccinating blood siblings of individuals suffering from progressive neurological problems.  For this reason, I am vaccinating my other children, but on a schedule that their pediatrician has recommended for each child.

I would rather have a child who is alive than dead, but I would not wish this type of mental illness on anyone.  Saying goodbye to a child who is loved and adored is painful, and even more painful when their body still works wonderfully, but they fear their own brain.

I know Sam's case is rare.  I understand that herd immunity matters.  But I wanted to take a moment to share the reason that I take issue with blanket vaccination recommendations.  I do not think that my children are somehow unique, but I view it as my responsibility as their mother to protect them, and this includes sometimes doing things differently than is normal.

Ten

One decade.

On Friday, we celebrated Sam's first ten years on earth.  His first decade.  It was a low key, relaxing day.  He ate cake and opened presents.  We sang to him.  A great, relaxing day.  He had a 'good brain' day, so everyone relaxed and enjoyed the day.

Then, on Saturday, the kids were getting ready to go to their dad's house, and Sam became agitated about his new headphones.  He argued that he needed them at dad's house, and his life would be bad without them.  I held firm - we don't transfer belongings between houses, and he has headphones at dad's house.  This became a big issue - a fit, refusal to get in the car, refusal to buckle, and then refusal to get out of the car.  He banged around, threatened his siblings, and shoved Alexander.  Thankfully, the car ride to their dad's house is less than 2 minutes, because he was getting wound up.  His dad ended up pulling him out of the car and into dad's house.

As I drove off, I felt a mixture of relief, fear, and sadness.  It's always a relief to have that time to work, to sleep, and to recharge.  And then there's the fear for my other kids.  I worry about them constantly.  I think about their safety and wonder if I will get a call that Sam has injured one of them.  Each of my sweet babies, who grew inside my body, away from my vigilance, and at Sam's mercy. My mind races with those thoughts on Sam's 'bad brain' days.

Later that evening, as I perused Facebook, I my eyes caught several sets of pictures from friends' children's 10th birthday parties.  Parents celebrating budding independence.  Parents mentioning seeing collaboration and friendships.  Smiles and presents and lighthearted joy.  And my heart shattered.

It seems that parenting grief comes in waves.  Loss in this way is not one event that can be sorted and filed in one's brain.  It is an ongoing loss - missing more and more of my child as he disappears into his beautiful, Escher-esque mind.  Especially with a severely mentally ill child, most of my time is spent trying to keep everyone safe and to meet each of my kids' most basic needs.  So many issues become crises.  This prevents me from having to stop and think about the future, or about the reality of looming diagnoses.  It is parenting by putting out fires, rather than carrying out a well-executed plan.  This busyness also allows me not to reflect or internalize the magnitude of these issues.

But as I looked at the pictures of 'normal' ten-year-olds, there was no keeping kids safe.  There was no work.  There was no juggling everyone's needs and praying for a calm, injury-free day.  There was no crisis intervention.  So the pain came.  I cried for the child I had hoped to have.  I cried for the little boy who lives in Sam, who is scared all the time.  I cried for the sad little boy who just wants to be loved.  I cried for the normal life and the friendships he will never experience.  I cried for each of my other children who will never know life without constant, penetrating fear in their own house, from their own sibling.  And I cried for me.  Because as much as I love Sam, I am scared of him, and for him.  I don't know the best way to help him, even though I desperately long to make everything better.

I am so exhausted.  I can't explain how bone tired I am from being on alert every moment of every day.  I can't even explain it in words - this level of tired.  I've told friends that Sam doesn't sleep.  And I get well-meaning "oh, my toddler didn't sleep well either" stories.  When I say Sam doesn't sleep, I don't mean he is a little restless at 3am.  I mean Sam spent several years sleeping 2-4 hours a night, with little 15-minute sleep jags outside of that.  Since he is a danger to himself and his siblings, that meant I spent several years sleeping an average of 4 broken hours a night.  And as anyone with a newborn will attest, it breaks you.  Now, on an antipsychotic, he sleeps 8-10 hours.  I find myself waking up intermittently at night, in a panic, checking on each of my children.  It sounds ludicrous, but I spent so many years ensuring everyone's safety at night that it is etched into my consciousness.  I awaken at night for safety checks.  And even now, as he wakes up and talks to his imaginary friends at 1am before falling back asleep, I hear it.  I hear everyone's night movements because that type of protectiveness is so engrained in my body.

If the physical exhaustion wasn't enough, there's also the weight of the future.  And the weight of the 'now.'  Right now, we're seeing an autism specialist, a neurologist, a psychiatrist, and have an EEG scheduled, and are waiting for a call from a local hospital to schedule an MRI.  These are all appointments in the next 6 weeks.  There is the time spent going to these, the time explaining them to Sam because he fears all doctors, the time arranging for childcare (since dad won't attend most appointments, but won't watch the other kids), and the missed work and family time.  Then there's the wondering about the future, not to mention the financial toll of specialist visits and medications.

And I have 3 incredible other children, each of whom deserves all the time and attention in the world.  I wonder who they would be if given the chance to shine.  

But as it stands, we're a decade in.  Here's to a calmer decade to come.

Knock knock, who's there?

Every morning, as Sam knocks on my door at some ungodly early hour, I bolt out of bed wondering exactly who I will meet.  Will it be the confused kid who can't remember that I'm Mom?  Will it be the agitated child who just repeats "iPad, iPad, iPad" until I find it?  Will it be the calmer child who just needs iPad and breakfast *now*?  Will it be the angry child who was somehow wronged in his sleep or dreams, and is out to hurt everyone he sees?  Will it be the delusional child who mistakes me for some other relative, or some part of his dream?

This 'unknown child' has been an interesting part of our morning routines for some time now.  The other kids ask "How's Sam?" when they wake up, almost as soon as they've cuddled and said good morning.  It's just part of growing up with the unknown.

But for the last few days - the last few glorious, wonderful days - things have changed.  Sam has slept for more than 5 hours in a stretch.  He wakes up calmer - still needing the iPad immediately, but not hurting anyone.  He recognizes me.  He recognizes his siblings and doesn't try to hurt them as they get out of bed.  I've smiled and whispered "He's having a good brain day" to each of my little kids, these past few days.  Their bodies change.  Their demeanors change.  Watching their bodies physically relax, and knowing that their minds are doing the same thing, is making all the searching for help worthwhile.

We haven't reached the end of this journey by any stretch of the imagination, but having a few 'good brain days' can't be a coincidence, and we're treasuring the time that we have with "the Sam we know is in there."

Sam and mom on a good day.  He snuggled up next to me and said, "I love you," while giving me a hug!