My brown eyed girl...

Over the moon excited to see our Sara featured over on the International Down Syndrome Coalition blog today!!  Pop over to read and share :)

This girl puts purpose in my life and a smile on my face!

It's not what I expected...

Yesterday I had the lovely opportunity to speak to another momma of a little with Down Syndrome.  As we spoke about our experiences, I was marveling at how similar our feelings and outlooks are in raising kids with DS.  Her birth story and finding out her daughter had Downs was eerily similar to mine 21 years prior.

I find it fascinating that as moms we can connect and because we have shared the shock, pain, grief, love, work, therapy etc. we speak the same language.  A sorority of sorts.  I shared the story of grieving that my little girl would never go to prom (ha! so wrong on that one) and that she would never be like other girls.  Grief is one of those things you experience in waves and at the most unexpected times.

The flip side to that is raising four kids and realizing that no matter what their chromosomal make-up, they all have issues, difficulties, failures, and accomplishments.  There are no guarantees in life as to how a person will end up.  Sara was certainly not what I had expected as a 22 year old mom to be.

She ended up being so much more.



PS- I promise to get back to some decorating and DIY this weekend.  There are some special things in the works regarding Sara, and I have been doing a lot of reflecting and writing on the subject.  Pretty material and a room makeover coming soon :)

Tell me about the day I was born...

No matter how old Sara gets her favourite story for me to tell her is about the day she was born.  If I say anything about her as a baby/young child she will ask, "How old was I?" and then follow that up with, "Tell me about the day I was born."

I've told the story so many times, and every time I recount that day she smiles and laughs as if it's the first time she's ever heard it.  Mind you, it's not a perfect birth story.  For starters I was alone during her delivery, and she was blue and non-responsive when she came out.  I was in a very abusive marriage, and the fact that I carried to near term was nothing short of a miracle.  I leave those parts out, and focus on the moment she arrived.  She will never know that the extra chromosome she carried was one of the main reasons I left her birth father- that she was the one who saved my life.  

This year Sara will be 22 years old, which seems crazy to me since we just celebrated turning 21...

For her birthday this year I sat down and wrote down the story of the day she was born.  I used Blurb.com  and I know it will be a hit with her.   It's so important that we know our story, the interactions, events, bits & pieces that make up our "who".  I always want Sara to know how very wanted and loved she was as a baby.  I didn't know Sara had Down Syndrome before she was born, but had I known it wouldn't have changed a thing for me.   22 years later she is still teaching me, and in so many ways still saving me.

The world through Sara's eyes...

Sara received a camera this year for Christmas from her dad.  She carries it with her everywhere, and while downloading the pictures it occurred to me that this is a way for us to see what the world looks like through Sara's eyes, and I have to say- it's a lovely view...

Have a lovely Monday- find the beauty around you wherever you go...

The perfect fit...

When I was a kid we lost everything we owned during Hurricane Alicia.  I remember my mother yelling at my sister and I to grab some things right before we evacuated our home.  The carpet was squishy under our feet as water was already beginning to come in.  So like any sensible minded ten year old I grabbed my French phone and my tap shoes.

Yeah, not much has changed about me in thirty-plus years.  I'd probably grab similar useful items today.

After the waters receded and we surveyed the damage we were left with near to nothing.  Since we had evacuated during the night this also meant that my sister and I didn't have any shoes.  Well, I had my tap shoes, but other than that I was shoeless.  Our neighbor had just returned from a trip to Mexico and had brought back several pairs of Mexican huaraches.  They are made of woven leather, and to say that they squeak is an understatement of gigantic proportions.   To me they were the ugliest shoes in all of creation, but to my sister they were the best thing since her polyester Snoopy dress.  She adored those squeaky leather shoes.  They were, in her opinion, the perfect fit.  Did I mention that they are not exactly fashionable?  And they squeak.  I remember the mortification I felt walking into Palais Royal, my sister and I squeaking our way to the back of the store where the shoe department was.

Today I got a phone call from Sara's teacher of six years.  I adore this woman and I think she hung the moon when it comes to Special Education specialists- she is committed to her students and passionate about what she does.  The phone call didn't go well, in fact it went poorly.  There is an upcoming ARD (Sara's last for her public school career) and we are to discuss her transition.  As in transition into "you don't go to school anymore so you need something productive to do- GOOD LUCK!"   Because really, there isn't much out there.  There are a few programs, but none of them are a fit for Sara.  Public transportation unaccompanied by an adult?  I don't think so.  Classes on a junior college campus without an aide?  Yeah, no.  Day-hab/respite care?  Hell to the no.  

It's not that we don't have a plan, we do, but it doesn't seem to fit the school district's definition of "productive".  I am wondering if they know my child as well as I thought they did after being with her for six years.  She's an introvert, does not initiate, but waits for instruction.  She is very trusting and childlike- gullible, so I can't see just setting her loose in the world as a safe option.  She has been working with me in the workshop and seems to love it.  Why can't that be good enough?  Why does she need to "fit" in a position that clearly doesn't fit her?   What happened to looking at the child as an individual?  My daughter was compared to three other students during the course of the phone call.  Three other students that are nothing like Sara.   To compare them was like comparing the opinions of those shoes between my sister and myself.

Navigating the road for her becomes more challenging the older she gets, as I knew it would.  One of the things that comforts me is that I know my girl, I know what she needs, what she loves, and what she wants.  She wants to be around her family, time with friends, nights out, movies, a boyfriend, photography and to create things.  She wants to be happy.  I'm confident that we have found a way to make that a reality for her, even if it doesn't look like what the district thinks "productive transitioning" looks like.

Sara's transition plan is a lot like those huaraches.  You have one side that sees the beauty in the craftsmanship, the simplicity of design, the comfort of the leather.  The other side only sees an ugly, squeaky pair of shoes- that for them are far from the perfect fit.  But for Sara nothing could fit better.

Celebrating love everyday...

This is Sara's last year of school.  It's kind of a big deal that after 18 years of schooling, come this June she will be finished.  No more ARD meetings, IEP's, parent/teacher meetings, dinner or coffee with her lovely teacher to discuss job transitioning- just a grown up 22 year old with Down Syndrome out in the real world.

So I am planning on doing things a little extra special this spring, starting with Valentine's day.  In the past we have always run to the store and bought a box of whatever Valentine's looked like something she was into.  Hello Kitty!  Hannah Montana....but this year we are doing real Valentines that reflect Sara's personality, not just the characters or pop stars she's into at the moment.

I started looking around on Minted's website.  If y'all haven't experienced the loveliness of a Minted card, then you have been missing out.  They really are worth the extra money, because the quality is just that good.

I ordered these for Sara to hand out to her teachers and classmates...it's just a preview from the order, so the quality is not that great.

This shot was taken by my very good friend Brittany of Brittany Rae Photography & Design.   I love how she captured Sara's personality in this shot.  She had jumped on her bed, crossed her legs and just beamed up at the camera.  You should hear her say, "Cheese" through clinched teeth and a smile.  Cracks me up every time.

Valentine's Day has always been one of Sara's favourite holidays.  She is never afraid to tell someone she loves them- when she spends time with someone she never leaves without letting them know how much they mean to her.  An example we all should follow.

"School" may be coming to an end for this girl, but I have a feeling that we all have so much more to learn from her.

A note to Glee...

Last night we tuned in to watch Sara's favourite show, Glee.  It has become her favourite show simply because it is one of the only shows on television that has a character with Down Syndrome.  Not to mention the fact that she is a high school student just like Sara.

Last night we were beyond shocked and disappointed when Becky's lines included things like, "Are we going to have a three way?" and "Make out and touch my boobs",and then when we thought it couldn't get any worse, "Show me your purple mushroom".   Yeah.  We were done at that point and Sara was a bit mystified as to why her character was acting that way.  I'm not sure Sara understood the full meaning behind what Becky was saying, which makes me wonder if Lauren Potter, the actress who plays Becky, fully understood what she was saying either.

So this morning I went to both Lauren Potter's and the Glee FaceBook pages and posted this:

We love your show and for our daughter Sara, who has Down Syndrome, she has an idol in Becky. After watching last night we were disappointed in the language and sexual filth that was coming out of Becky's mouth. Sara was confused by what she heard and honestly I don't think she will be watching anymore. Why do you feel the need to portray Becky in this way??

I'm not a prude, and I am not opposed to seeing Becky acting and speaking like any other high school student on the show, but NONE of the other characters speak that way.   Why would the show portray a girl with Down Syndrome to speak like a piece of trash?  Shock value?

 If it is for shock value, then it worked, because we were shocked to the point of never watching it again.

Can't/Won't to Can/Will...

October is coming to an end, as is Down Syndrome Awareness month.  I want to share a little with you about Sara and her journey, and how I overcame the "can't/won't" syndrome.

When Sara was born I remember sitting on the sofa and crying to my mother about the proms she'd never attend, school she'd never know, boyfriend she'd never have, and the graduation that wouldn't be.

Remember the scene from the movie Moonstruck where Cher slaps someone and says, "Snap out of it!"  Yeah, my mom did just that for me.  But inside I still felt as if all those things were out of Sara's reach.

Boy, was I ever wrong. Over the past 21 years I have witnessed firsthand my "cant's" turn into "can" and my "wont's" turn into "will".  Over, and over, and over again.

This kid has been to prom.  FIVE times.  She can rock prom like nobody's business.

She is VERY involved in Special Olympics- both swimming and bowling.  She even lettered in it...

Boyfriend?  Check.  We adore this kid!

One of the happiest days of my life was watching Sara walk the stage...

This is Sara's last year of public school  At 22 she will age out of the system.  What's next?  No idea.  But I can promise you one thing, her future is FULL of Can and Will.

The ups & Downs...

This month is Down Syndrome Awareness month.  I consider myself an expert on trisomy 21- it is my life, my child, my world by diagnosis. But Sara is so much more than just an extra chromosome, and it is hard to distinguish characteristics of Down Syndrome from what simply makes Sara who she is.

Down Syndrome was named after the English medical doctor, John Langdon Down, who first published an accurate description of a person with Down Syndrome. In 1959, the French physician Jerome Lejeune identified Down syndrome as a chromosomal condition.  Instead of the usual 46 chromosomes present in each cell, Lejeune observed 47 in the cells of individuals with Down Syndrome.  It was later determined that an extra partial or whole copy of chromosome 21 results in the characteristics of Down Syndrome.  (taken from NDSS)

typical cell division 

Trisomy 21 cell division 

That's the medical terminology, but what about Down Syndrome and what it means to a mom?  It means a lot of different feelings and experiences- some good, some ugly, some frustrating and some rewarding.  A lot like parenting a "normal" kid- but in some ways intensified.   Sara's accomplishments are celebrated in a big way, but is tempered with frustration when she cannot tie her own shoes.  She knows enough to know that she is not "keeping up" with what other kids her age are doing, but confident enough to feel validated in doing the things she does well.  It's like living extremes sometimes, and forgetting every once in a while that the extra chromosome is lurking about because sometimes things just seems so damn "normal".

Would I change her if I could?  That's a hot topic issue right now with all the new technology and discovery in gene manipulation.  The answer to that is a mixed bag for me.  If I could make the medical concerns go away for Sara- yes, I would.  Not having to worry about her heart, diabetes, leukemia, or early onset Alzheimer's?  Yes, I would manipulate those genes in any way possible to keep her medically safe, but to change her to "normal" for normal's sake?  My honest answer to that is "no".  I used to wonder about things she did and ask myself if it was a Down Syndrome thing or just Sara being Sara.  Now I really think the two are so intertwined and connected that it is a bit of both, and to change that chromosome would be to take away the essence that makes Sara who she is.  And to me she is just Sara, perfectly, wholly, beautifully, and phenomenally- 47 chromosomes and all.