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Three Long Years

We are rapidly approaching the time when it will have been three long years since our precious Miss Elliott passed away.  A scant four months later and then we will forever enter into that tragic time period that we will live in for the rest of our lives; the one in which she will have been gone longer than she ever was here.

I worry about that time.  I worry about her memory.  To so many people that I meet she is now only a story, and idea, if even a remembrance, but not a living person known unto them.  She is alive in my heart and soul.  She is imprinted onto my being.  I vow to spend the rest of my days spreading her message in her stead about the beauty, value, and importance of every life, no matter how short, no matter how small.

“Serenely I could while away the hours.  Stay in contentedness with her forever, just staring at her beauty, stroking her face, holding her head and massaging her hands and feet.  This was our life, the one we share.  It didn’t look exceptionally pretty to others.  It was expensive, but not fancy, cumbersome, and not at all convenient, imposing and difficult.  No one coveted it.  I kept it close, as close as I could, for as long as I could.  No matter how unattractive this life was to others, it was mine and it was my most prized possession.”

-excerpt from Three Short Years: Life Lessons in the Death of my Child

It’s been just over a year since I published Miss Elliott’s book.  I sincerely hope that everyone who reads it takes her message to heart and learns some of the many lessons she bestowed on us with her presence while she was here.  She taught me so much about life itself.  I am eternally grateful to have had the opportunity to be her mother.

To get your copy of Three Short Years, and learn more about Miss Elliott’s life and our journey with her, click here:

I Was Too Ashamed, So I Lied.

Last night at the elementary school my daughter attends we went to watch her and the other fifth graders give their presentations at Night of the Notables.  It’s an evening where they present their research projects on historical figures who helped shape America as we know it today.  I think this is a great idea.  When you combine history and research, then couple it with presentations, it’s an active and engaging way to learn.

What I wasn’t so stoked about was my daughter coming to me on Monday morning telling me that she had to dress up like Queen Elizabeth I for her presentation…tomorrow…night at school.  “Oh yeah, I had a flyer about it in my Friday folder,” she said  Great, I thought.  Time to get creative.  In a mad dash to the nearest thrift shop I was on the hunt for some Elizabethan type anything I could fine.  Since it happens to be the week of Halloween there was actually plenty of items to choose from, if I wanted to shell out $39.99 for the dress plus additional money for accessories that is.

I did not.  Maybe if she would have been using it as her Halloween costume as well, instead of just for an hour at a school event I wouldn’t have minded so much, but she wasn’t.  So instead I found some used junk I thought I could piece together and for $12.00 and change I created an (albeit more Victorian than Elizabethan) dress for her to wear.  I sewed all day.

Before and after:

I knew this would be good enough for the fifth grade home room event, but I also hopped my daughter would like it.  That she would appreciate it and the time I put into it, not just expect it to materialize without a second thought.  Truthfully, it annoys the crap out of me that schools tell kids they have to dress up, and that part of their grade it dependent on it.  Just like it frustrates me how much parents are asked to spend on school supplies or even field trips these days.  Let alone, pictures, sports, events, classroom magazines and other materials.  Yes, some of these are required, and some are “optional”.  But even for the ones that are “optional”, if you don’t “choose” to participate, your creating an outcast of your child.  A line drawn in the sand of haves and have-nots, of doers and don’ters.  We’re just lucky that we’re able to be a family who has the ability to pay for this never ending list of school room needs.  What if other families honestly don’t have the money for any of it?  It’s not always as simple as being a lack-luster parent who’s not engaging enough and not putting enough care, concern, or emphasis on education.  Sometimes it’s about not having the money to do so.

The reason I was so gung ho to track down an outfit that day, to pay money for it, and spend my time sewing it together was simple:  I didn’t want my daughter to feel like I did.  I too had a time when I needed to dress as a historical figure in school…and my grade depended on it.  It was seventh grade, and I was Helen Keller.  I remember so clearly how all the popular girls, the ones who wore Calvin Klein and Doc Martens, got together over the weekend and rented period specific costumes from the local community college’s drama department.  I was so envious of them standing in their exclusive circle talking about how they went together with their mothers over the weekend to make sure they had the perfect costume to wear that day.

I wore a ribbed white t-shirt, Levis, and imitation combat boots from K-Mart.  I thought these things were nice because they were all store bought, and for once not from a yard sale, but I still knew they weren’t cool.  I knew better than to even ask my parents to help me put together a costume.  There was nothing in the house to use and I knew the money wasn’t there to buy anything.  There was no extra money in our house, period.  And I didn’t want to make them feel worse than they already did by asking.  I already knew they wished they could give me more.  I knew that if the money had ben there my mother would have happily driven me down to the drama department and I would have had a fabulous period dress on that morning too, but I didn’t.  So I lied.  I got up to make my speech and included a completely made up portion about how I dressed this way because my (Helen Keller’s) favorite thing to do was to wear my brother’s clothes because they were more comfortable to run around and play in.  The teacher didn’t buy it, and I got marked down for “not dressing up”.

Of course I knew it was wrong to lie even then, that it always is, but at that moment I wasn’t strong enough not to.  I was too ashamed so I made what felt like the easier and less embarrassing choice.  In reality, no child should ever be made to feel this way over something so completely superficial and out of their control, but in reality they do.  I’ve never told my parents, or anyone about that day.  Like I said, I didn’t want them to feel even worse because they couldn’t provide what I “needed”.  As a twelve year old girl, I wasn’t as attuned to speaking up for myself back then as I am now, so I just took the lower grade my teacher doled out and went on with the day feeling crummy.

It shouldn’t matter, but I want to make sure my daughter always has  what she needs to be successful in school, like the perfect costume.  It shouldn’t matter, but it does.  I want to make sure she succeeds, and in my mind part of that means making her feel like she fits in and doesn’t have to hold back because the money isn’t there.  My husband grew up in the same type of household and he too understands and shares the same feelings of being an outcast because your family didn’t have money for new clothes or extravagant Christmas presents like other kids’ families did.

Adolescence is an awkward time that’s hard enough with the pressure you get from other kids.  Children shouldn’t have to worry about it coming from the adults in their lives too.  Teachers should know better than to add to it and should be more sensitive toward these situations, especially in the public school system where you encounter all ranges of diversity. Furthermore, as adults (who interact with children daily) they should understand, without a word, when a child cannot willingly or openly share how uncomfortable they are when they may not be able to ante up, so to speak, along with the rest of the group.  And they most certainly shouldn’t be docked participation points for it.

Queen Elizabeth I in action:

I think her smile shows just how proud she was of her costume, and from
a child who’s already gone through so much, that smile’s all I need to see.

What Could Have Been Never was to Be.

We walked slowly, strolling around the shopping center aimlessly, my husband and I.  It was a Saturday evening and we had reservations at an upscale restaurant overlooking the water on the twenty-first floor of a building in downtown Bellevue, WA.  We were dressed quite nicely, in my opinion, and as I walked, hand in hand with my lover, my friend, and my confidante of fourteen years I thought about what we looked like, and what we felt like.

It was Loren’s birthday and I was taking him to a premier local steakhouse for dinner.  We were too early to arrive for our reservation so we chatted about nothing in particular as we strolled.  Then we passed a little boy who ran out of a storefront across our path to his mother.  He was young, maybe four years old.  Nothing remarkable happened.  And then Loren said “That little boy had Down Syndrome”.  “He did?”  I replied.  I told Loren that I hadn’t noticed which was odd, because I usually find myself gazing intently at children who are different.  He had noticed this about this little boy for the same reason I usually did.  I feel so connected to them.  I stare so lovingly and longingly whenever I see such a childI told him how I sometimes worried that the parents would catch me staring and think- “That you’re staring for the wrong reasons”, he said as he finished my yet unspoken thought.

“Exactly. Look at us”, I said.  “We look like two young affluent city-ites out on the town without a care or a clue.  No one knows what we really are.  No one can see it.  They would never know that in many ways we’ve lived their life, or at least a completely different one than we appear to live now.”

It feels odd for me to be out without my children.  I feel naked somehow.  Not in a shameful sense, just too exposed and a little disconnected.  It feels as though a part of me, a part of my identity even, is missing.  Although Elliott is gone, she will always be with me but you can’t see her.  And Skylar, who is here was away for the night.  She’s growing up and living her own life.  She had plans of her own that didn’t include us, which is good and constructive for her as a person, to be her own person and not just our child, but that’s a whole other lesson of it’s own in letting go as a mother.  One I’m hoping to navigate in tiny instances such as these over a long, long period of time.

It’s a problem that often plagues me: the feeling of being an outsider in society.  I further remarked to Loren that his turning thirty-two that evening, now made him twice the age I was when we met.  “Thirty-two”, he repeated while pondering the meaning of the number.  We regarded our lives together, and how we’re not as young as the teenagers we once were, but we’re not that old either.  They didn’t card us at dinner for our glasses of wine. Either we don’t look young enough to be carded anymore, or they just don’t care as long as you can afford to purchase one of their sixty dollar steaks.  We laughed together at the prospect of somehow feeling seventy-five and twenty all at once.  So young, but so much life lived and so many lessons learned already.

After dinner, while walking back to our car we came upon the Disney Store.  I stopped at first to go in, but soon realized our nearly ten year old daughter has mostly outgrown her interest in this store.  I also had the overwhelming urge and want to be able to buy an Elsa dress for my five year old like everyone else in America is doing right now.  I miss so many things about my daughter, and as time goes on, I miss seeing her grown up and have the experiences that I see children all around me experiencing.  Of course I wish she had never died, but I also wish she never had Tay-Sachs to begin with.

Loren’s thirty-second birthday which is actually today, May fifth: Cinco de Mayo, marks the beginning of change in our lives.  He accepted a new position at a new company in a new city, which he started today.  This will entail the selling of our home and our moving to this city, which is several hours away.  After waging a civil war, of sorts within our own lives over the last few years we see these events as our own personal victory and newfound sense of freedom. Cinco de Mayo, how apropos.

So much change always makes me emotional and nostalgic.  I suppose it does for everyone.  Change is difficult, even change for the better.  So much of it so fast could potentially be unsettling for anyone.  I began to cry at the thought of Loren leaving for his new position.  I would miss him while he was away, and before we could come join him, but it was my feelings of missing Elliott that were heightened with all these changes swirling around us.  It was another new chapter in our lives, that would only involve her as a memory.  It would be the same for every new chapter from here on out.  I told Loren that I still wish she could have been here and been with us as we move forward, doing all the things a five year old would do and being a living part of our lives.

He held me tightly and consoled me and also told me that he knew I did, but that it just never was to be.

And of course, he was right, but it still doesn’t make those feelings any easier. C’est la vie.