Stoll Life

March 21, 2012

3.21

Filed under: Family — Tags: , , , , , — Tara @ 8:55 am

So you think you know what Down syndrome is? I’m not challenging you…or being intentionally biting. I really think most people think they know what Down syndrome is; what it looks like; what it means. And while they think they know, they probably don’t have a clue.

I used to be that person, too. I’m the one who felt sorry for any family member “burdened” with the care of a loved one with Ds. I’m the one who knew “those” people couldn’t really do much. Not really. I mean, people say they can, but come on…

Yes, I used to be that person, and now it is that person that I work hard to inform and educate. It’s not necessarily a fight, because generally, people are very kind and understanding. But it’s an on-going war for sure. Fighting stereotypes is bloody work. But no one fights a war they do not believe in. And so we rally on…

Here’s the truth. And these are facts; not hopes or dreams or wishes or my concocted fairytales. FACTS:

  • College
  • Honor Roll
  • Marriage
  • Driving
  • Living alone
  • Career

These things are happening for people with Down syndrome. Right now. Today. This is not a stretch, people. And there’s no need to be impressed.

And yet we are. Hell, even I get goosebumps when a story comes across the wire about a person with Ds doing something “amazing”. But I think I’m just so grateful that it’s happening. Because without support, it would not. And there’s the difference if there ever was one: people with Ds just need a little extra time and support and understanding to meet their goals. Just a smidge. Is that too much to ask? For Olivia’s sake, I hope not.

So here’s how Eric and I live our lives with Ds. Are you ready? Because it may sound blunt.

Most days, we act as though Ds doesn’t exist. We live our lives normally, just as we did before Olivia was born. She fits into our family perfectly, and we didn’t have to force her in.

We expect her to behave, just like her big sister. We ‘time out’ just like other parents. We work to provide good lives for them. We nurture them and love them. The same.

Girls in yellow and blue

Girls in yellow and blue

We work, we play, and we grow and learn together. Nothing remarkable here, except life. And so what if we go to the doctor a little more often? So what if Liv is saying two-word sentences instead of paragraphs? So what if sign language is a staple in our house (along with pretzels and string cheese)?

Yup, nothing remarkable or that different here; just life.

So today, as we celebrate 3/21 (World Ds Day) as a family, we’re thankful to have our “normal” routines and lives. But at the same time, we have something cool and different to celebrate. Because, seriously, she’s a cool kid. And our family is pretty lucky to have Olivia as a part of it.

Is this…all that I describe here…is this what you think of when someone says “Down syndrome”? I hope so. Because that’s really all it is. Life. With a little something extra.

Happy 3/21, my friends and family. And thank you for your support and love.

January 25, 2012

Lessons from a special needs mom, pt. 1

Filed under: Family, Personal — Tags: , , , — Tara @ 2:53 pm
Mommy and Liv
Disclaimer: These are based on my experiences only. They’re the only experiences I have experience with. :)
  • Lesson 1: Before becoming a mother, and during pregnancy, I feared the worst imaginable fate: having a child with special needs. “God, no!” #sheeshthatwasdumb … I now realize that the worst imaginable fate for any parent would be to have a child with special needs and fail to realize how awesome they really are. Cause they really are.
  • Lesson 2: See Lesson 1. My kid is cool. If you fail to see it, then you’re not.
  • Lesson 3: Down syndrome doesn’t have to define my life. It’s a small part. Important, yes. But small, just like everything else.
  • Lesson 4: Pick your battles. Wendy’s forgot your fries? Move on. There will be much larger battles to fight, believe me.
  • Lesson 5: Patience is key. Olivia walked at 2. But she walked. She’s talking at 3. But she’s talking. She’s living her life, so we let her do it on her own terms.
  • Lesson 6: People might stare or ask questions. Easy with the Mama Bear routine. They might just need some education, and like it or not, that’s your job. Do it willingly. Do it kindly.
  • Lesson 7: Make friends with your child’s therapists/teachers.
  • Lesson 8: see Lesson 8. Buy gifts for your child’s therapists/teachers. It’s shameless, yes, but not insincere. They deserve the best, yes?
  • Lesson 9: You get what you expect out of your kids. But make your expectations realistic. It’s a fine line, but you’ll find it.
  • Lesson 10: Absolutely, under no circumstances…believe me…do NOT compare your child to other people’s children. No good comes from it.
  • Lesson 11: Support is necessary to raise kids. Let people help you. Ask if necessary. Without Olivia’s grandparents and some amazing friends, I would be in a coffin by now. Or a mental institution.
  • Lesson 12: Otherwise known as EPIPHANY. These lessons can most likely be applied to all moms. A kid is just a kid, afterall…special needs or no. And that is probably the most important lesson of all.

This is part one of many posts, I’m sure, as lessons come daily. Thank you for reading.

January 18, 2012

Progress report

Filed under: Family, Personal — Tags: , , — Tara @ 10:27 am

I clinch up like a fighting fist when I hear those words.

“Olivia’s progress report is in her backpack.” Actually, with her sweet teachers, it sounds more like this: “Olivia’s progress report is in her backpack!! :) :) ”

But still, I remind myself to breathe.

I don’t look at it for 3 or 4 days. Somehow, I think that through time (like if that paper lays on our kitchen counter long enough) the report will improve dramatically. If it even needs to. I don’t know. Hell…I don’t know if I want to know.

I do this with Amelia’s report cards, too, just so you know. And mysterious mail… i.e., “Eric, open that, please.”

Insert your cliche of choice here: “Out of sight, out of mind” perhaps? Or “No news is good news” ?

Or perhaps I’m a slave to Mr. Murphy and that annoying law.

I don’t know. It could be fear. Horror movies do this to me, too. “Tell me when it’s over!” as I cover my eyes like a 7-year-old. Yes, I really DO do that…if I even choose to watch the film. See, my first choice is to avoid it. Yes, that’s it: Avoid the potentially unpleasant.

But see, I can’t do that when it comes to my girls. (Even though I did have Eric read Olivia’s progress report first…)

And so I pick up the progress reports, the grade cards…and the mysterious mail. With clinched fists, I read. And I relax…because it’s never as bad as Mr. Murphy would lead me to believe.

School days

p.s. Their reports were both amazing. Oh, and that mysterious piece of mail was a tax form. :)


January 1, 2012

It’s 1:15am. Do you know where your resolution is?

Filed under: Uncategorized — Tara @ 1:27 am

I haven’t stayed up this late in months; maybe a year or more. This ‘New Year’ blog has me stumped. I want to write about resolutions and inspiring new beginnings, but it’s just not coming to me.

Right now, all I know is this.

2012

2012

I know I have an amazing and loyal husband. I know my kids are safe in their beds. I know we are all healthy (and lucky to be so).

2011 was good to the Stolls. Here’s hoping 2012 is just as amazing.

I suppose I’ll sign off now. After all, it’s 1:24am… But I’d like to leave you with this: May your goals be met and may your dreams come true. Additionally, may you own your faults and do your best to remedy them. No one is perfect; don’t try to be. Just be good to others.

Happy 2012!

December 22, 2011

Gifts, the letter “O”…and feeling grateful.

Filed under: Family — Tags: , — Tara @ 9:39 am

2012. Woah. Really? Forget 2011; where did 1996 go?

Yesterday I was heading off to college in my Buick Regal (bag phone snugly in console); today I’m a wife, mama…and only three short years from 2015…the year immortalized by Marty McFly. (Mark it on your calendar, cause the Stolls are having a BTTF party).

I love this time of year. Giving to those I love is such a reward and blessing. And experiencing the joy of my kids as they live the magic is priceless.

Especially this year.

A touch over three years into our “new” lives living with Ds, and Olivia is doing awesome. Many fears remain,  but many have been swept away…simply by her being here. An amazing child with a wonderful sense of humor, she loves (and picks on) her big sister. She’s in preschool, is adored by her classmates, is learning to read, knows her ABCs and 123s, and can spell her name. What?! you say. Ok, ok, we’re working on it. (There are “Os” all over our house, written in bathtub crayon, chalk, etc.)

Her Nana spends time with her every day, and they work on flash cards (signing and saying the word), spelling her name, and countless other fun activities. We are so grateful for such a wonderful Nana. Not because she’s a teacher, but because she loves our girls so much and would do anything for them.

Fear is a funny thing. It grips me so tightly sometimes; and at odd times, too. I can be lying in bed watching TV at the end of the day, and I suddenly fear for my girls’ futures. I can’t explain what triggers it; but I close my eyes tightly and hope the fear is gone by morning.

It usually is.

I’m rambling and really don’t know where I’m going with this. I suppose it’s just that I’m grateful.

I am grateful for an amazing husband. I am grateful that Olivia continues to amaze us. I am grateful that Amelia loves reading and is a kind child. I am grateful for supportive and amazing family and friends.

I’m grateful that these three years have passed…squashing some fears…

And…I am very grateful for “Os” being etched all over my house. Even on the walls.

_DSC0003_DSC0006_DSC0050 14-03-39

November 8, 2011

Attitude adjustment

Filed under: Family — Tags: — Tara @ 6:28 pm

When you have a six-year-old little girl, you start to fear the teen years. Not because you remember your own teen angst, but because every once in a while, a little window of adolescent hell opens, quickly flashing something that scares the bejesus out of a poor, unsuspecting mother.

I don’t know where Amelia would get his from. :)

Ok, we know it’s normal, but lately we’ve had a lot of discussions about “attitude”. A person (big or little) can display a GOOD attitude or a BAD attitude. And when a LITTLE person fires out a BAD attitude…well…let’s just say the BIG person isn’t close behind.

So the other night, after a movie theater fiasco, we talked extensively with Amelia. “The attitude needs to go far away, Amelia. Now.” We then showed her how to physically take her attitude (picture grabbing a piece of lint off your shoulder) and literally toss it as far as she could. Done. “It’s in the desert,” she said. Oh thank goodness.

Tonight, though, the attitude returned with a vengeance. (It doesn’t take much.) You see, it seems that when a mom doesn’t allow her little one to play on the computer while eating dinner, it causes Miss Attitude Pants to come forth. Stomping.

“Amelia, what happened to your attitude? I thought it went far away.” “It came back,” she spat. No kidding.

So after a few minutes alone in her bedroom, a ban from the computer and candy for the night, and another talking to, Miss Attitude Pants left again. This time the attitude went “far far away”. Where to, you ask? “It’s in California, Mom.”

Oh thank goodness.

October 26, 2011

Amelia

Filed under: Family — Tags: , — Tara @ 9:28 pm

Not to state the obvious, but I haven’t blogged in a while. Fleeting thoughts come and go, but tonight I have a very good reason to write.

Amelia’s parent/teacher conference was this evening. Eric went, and I stayed home with the girls. Liv is still getting over her flu bug, so the girls and I cuddled in the big comfy chair. All at once, a good night turned great. Eric came home and immediately hugged Amelia. The pride was in his eyes, then he told me all about it.

Amelia’s progress notes are wonderful. Academically, she’s right on track, if not a bit ahead. Sure, she gets a little distracted when writing numbers, but who doesn’t? :) Behaviorally, she’s doing very well. She follows directions and pays attention. (She must use it all up at school) ;)

Socially…well…here’s where I get teary-eyed.

I think I’ve mentioned this before in my blog, but it bears repeating for this particular entry: When Amelia was very small, I felt an overwhelming need to teach her socially responsible behavior and compassion for others. I agonized over how we, as parents, would show her all sides of life. I wanted her to realize that she is very blessed to have food to eat and a bed to sleep in; she’s not entitled to anything. Most importantly, I felt the need to teach her that while everyone is different, everyone is important. To sum it up, “We’re all in this together, so let’s help each other out.” (Hippie thought.)

The strange thing about all this is I never gave this stuff a second thought during the decision to bring a child into this world, during pregnancy, etc. It was only after she was here that these thoughts fell upon me. But, my goodness, they were astounding thoughts.

Then, as though the universe was listening with every intent of helping…Livie was born.

Amelia’s teacher was most proud, as are we, of Amelia’s compassion for her friends. Her big heart has driven her to take a specific friend “under her wing”. The important friendship has helped this child “more than anything”, their teacher told Eric, eluding to some challenges faced by this child.

I think it goes without saying how proud we are of Amelia. I want her to be smart, healthy, happy, and loved. And I feel that her compassion for others is a vital part of her well-roundedness.

No one can say for sure if Olivia’s presence in our family has helped foster Amelia’s compassion. I’d like to think it wouldn’t matter…and it really doesn’t matter at this point. All I know and bask in is that Amelia is learning precisely what we hoped she would. Proud parents, we are.

Amelia

August 16, 2011

To everything

Filed under: Family — Tags: , — Tara @ 9:31 pm

There is a season, and this is the season of firsts. Many parents (some are my friends) are sending their kids to kindergarten in the next few weeks. Today was our turn. Amelia started her school career today! The last few weeks have been spent supply shopping, discussing what kids do in “big kid school”, and the daily question. “How many more days, Mom?!” And now here we are.

All day long, I couldn’t wait to hear about her first day. So when she came in the door, after Dad picked her up, my question was poised. “How was it?!” But I didn’t even get the chance to ask. Her first words were, “I saw Justin Beavert at school!!” Ok, first of all, she means Justin Beiber, which I’m sure you could decipher. Secondly, I don’t even know if I spelled his name correctly, but I’m sure of two things: His name isn’t “Beavert”, and he probably wasn’t at Amelia’s school today. Did I try to figure out what she meant? Yes. Did I get anywhere? No. Does it matter? Not one bit. A child’s excitement shouldn’t be squashed, and I love her for having it.

So after a long dinner and trying as hard as I could to pry this child’s events from her noggin’, I learned five things (besides the Justin Beavert thing, which was clearly the most exciting event, because she repeated it several times):

  1. She has a friend with dark hair
  2. She loves her teacher
  3. She likes music class, because there is a dancing flower, and if you sing loud enough, the flower moves (remember those?!)
  4. She ate a peanut butter and jelly sandwich instead of hot lunch
  5. She learned what an armpit fart is

Aside from number five, it seems like her school career is off to a good start. Then again, I feel all lessons are valuable; teaching moments, if you will. Hey, she was bound to hear about it at some point.

I couldn’t be prouder of my little lady…

Amelia's 1st day of kindergarten

Amelia's 1st day of kindergarten

Amelia's cubby

Amelia's cubby

July 27, 2011

This week

Filed under: Uncategorized — Tara @ 9:51 pm

What. A. Week.

Ever hear the expression “running around like a chicken with its head cut off”? I’ve always thought that analogy was gross, but I admit it’s definitely correct this week.

Tomorrow is Amelia’s 6th birthday. Six. Holy cow.

Ok, so now that I’ve expressed my disbelief, I need to get the house ready for a party. Oh. Two parties. Cleaning, buying gifts, party favors, a cake (don’t judge me; I made it last year). Then back to Target for some last-minute-things-we-can’t-live-without-at-a-six-year-old’s-birthday-party.

All of this plus crazy time at work. DVD duplicator isn’t working? Oh well…we don’t need those DVDs until MONDAY. (This is the part where I stress out a little).

Along with the chicken with no head, there is no lack of emotional fullness this week either. Besides my oldest turning six, which is emotional enough… we remember that two years ago on July 29, Liv had her heart repaired. We are due for an echo soon, which I’m sure will reveal what we already know: Olivia is a stinker with so much energy and sass, she matches her almost six-year-old sister! Thank goodness. :)

This week I’m also remembering that Eric’s sister (well, she’s my sister, too) returned to work today after being at home for 12 weeks with her new baby. It’s so hard being a mom. We have so many choices to make, and almost all of our decisions come with guilt. Hang in there, Steph. Motherhood isn’t always easy; but it’s always rewarding. And totally worth it. Love you.

I’m sure there’s more, but I’m just too busy to remember it right now. Or too tired.

July 19, 2011

GQ’s attempt at humor…and my response to it.

Filed under: Family, Personal — Tara @ 8:22 pm

Some of you know about this, either because you’re in the “know” as a Ds family, or because you’re my friend and/or family member and therefore bare a vested interest. For those of you who aren’t aware, GQ recently published an online article that contained offensive language to say the least. Something about the 40 worst dressed cities in the country and Boston being one of them– ”they suffer from a form of style Down syndrome where you add a little something extra and it ends up ruining everything”. Thank you, John B. Thompson, for educating me about Boston’s dress. Now let me educate YOU.


Ok, ok, I didn’t rant in my response. Truth be told, I tried forgetting about this. Why? Because this kind of stuff happens a lot, and it’s simply exhausting. Sometimes, tuning it out is in my best interest if I want to be a sane mother rather than a Down syndrome cop. On the other hand, sometimes my duty as an advocate takes over. So this was my letter to GQ today:


Dear John B. Thompson:

Your recent attempt at humor has failed. Miserably.

No doubt you’ve received countless responses to your article about the 40

worst dressed cities in the country. Here’s another.

I have a beautiful little girl named Olivia who happens to have Down syndrome.

She’s amazing and has that “little something extra” that you, so viciously,

describe as “ruining everything”. That “something extra” happens to be drive,

determination, and compassion.

Please educate yourself before you further embarrass your fellow employees and

management.

An apology is in order.


Sincerely,

Tara R. Stoll


Less than one hour later, I received this response from GQ:


Dear Tara,

We received your letter and absolutely understand that we have caused you

and your loved ones pain. Hurting anyone’s feelings or being disrespectful

or cruel was certainly never our intent, but your letter helped us

understand how poorly chosen our words were. What we initially posted was

insensitive and ill-informed, and we’ve removed the offensive language from

the website. We deeply regret our error in judgment. There is no excuse. We

are both very sorry.

Sincerely,

Sean Fennessey, editor, GQ.com

John B. Thompson, writer, GQ.com


I will give credit where credit is due, even if it is in the shape of a form letter. So thanks for that, GQ. But I happen to think they owe an apology to the country. Perhaps I should have specified. ;)

Older Posts »

Powered by WordPress