Easter 2013

 The angel said to the women, “Do not be afraid, 

for I know that you are looking for Jesus, who was crucified.   

He is not here; he has risen, just as he said. 

Come and see the place where he lay.   

Then go quickly and tell his disciples: 

‘He has risen from the dead and is going ahead of you into Galilee. 

There you will see him.’ Now I have told you.”

Matthew 28:5-7  

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Today is Easter.   We took a quick family picture after we got home from church this morning.  It's impossible to get Ben to look straight at the camera when we use the timer.  He's always so distracted when Dad hurries over to get in the picture.  :)

Here are the three kids hanging out.  They are so fun.
 

One of the traditions in our corner of the world is to dye and hunt for confetti eggs (cascarones).  I cheated this year and didn't make any myself - I just bought a couple dozen at the grocery store.  

We dyed hard-boiled eggs just like we did when I was growing up - I think we'll be having deviled eggs and chicken salad this week.  :)

Did you notice that we mixed up the green and orange dye in the colored cups? 

I also had cookie dough left over from my
cookie-baking extravaganza last week, so we made Easter egg cookies.  Yummy!

 We celebrated Easter with an egg hunt and dinner with a family from our church.  

The confetti eggs are always a big hit with the kids.  Ben was a favorite target, since he was so close to the ground - all the little kids could reach him.  Notice the many egg fragments and confetti pieces surrounding him.  

I was also a target since I hung out with him for most of the egg hunt.

Evan and Corrie were the biggest kids there, so they had to wait a while before they got a turn to find eggs.  Fortunately, there were TONS of eggs out there to find.

Corrie found lots and lots of eggs and shared them with all the other kids. 
 

Evan enjoyed his older kid status and cracked eggs on everyone else until ... I got a hold of him!  Then the little kids attacked!

Meanwhile, Ben sat amidst the shells and tasted the plastic eggs.  Yum. It was a sweet day together.  

Happy Easter!

What I Did for WDSD 2013

World Down Syndrome Day was a busy day for the Tomai family.  The craziness started a few days beforehand, when I got busy baking cookies.  I'm not a gourmet baker or elite cookie-decorator or anything like that, but I got it into my head that I wanted to make cookies ... so I did.

 In case you didn't know, the colors for Down syndrome awareness are blue and yellow.  

I made blue and yellow ribbons, plus cookies that are supposed to look like ribbons.  :)

On the morning of March 21st, I took lots of cookies and ribbons to my MOPS meeting.  The moms there are great - they have encouraged me and supported my family through assorted ups and downs over the past three years, and they all love Ben.

After MOPS, a sweet friend took Corrie to the park to play, so I could take Ben home for a nap.  I had to wake him up a little early so we could get to our next gig: a Down syndrome awareness presentation at Evan's school.  I was nervous about this one.

I started by reading "We'll Paint the Octopus Red," then did a modified version of this Powerpoint presentation - only with pictures of Ben and other kids that I know in real life.  It was great.  The kids in Evan's class already know and like Ben because we've visited Evan at school before.  They get a kick out of having a toddler in their classroom.

One of the points in the presentation is that Ben isn't sick and Down syndrome isn't catching.  He has 47 chromosomes in each cell and he will always have 47 chromosomes.  One of the boys raised his hand and asked, "Will he always be so cute?"  Sweet kid!

The students listened well and had lots of comments about how we are all different.  Emmett had challenged me to consider how I talk about bullying with the kids.  He said that instead of focusing on what not to say (i.e. the r-word), I could challenge them to be brave, to be kind, to be the kind of people who include others and stand up for kids who are being mistreated.

And then that night, a party!  But I will save that story for another post.  

Let me leave you with a picture of Ben after I woke him up from his nap.  He wasn't thrilled to be awake, but he turned it around when we got to the school.  He signed, he smiled, he scooted all around the room.  He's quite the performer.
 

Sad to be awake!  

I don't know if you can tell, but his shirt says 3*21.  It was handmade by one of the moms in our local parent support group.

World Down Syndrome Day

Today, March 21st is World Down Syndrome Day.  

Why 3/21?  

Down Syndrome is officially known as Trisomy 21 - individuals with DS have three copies of the twenty-first chromosome.

I don't have any new insight into Down syndrome - and I am planning to spend the day advocating in my local community, so let me suggest that you check out some other blogs:

This post at Just a Little Muchier Muchness is right on target:

socks, really?

I participate in World Down Syndrome Day and the 31 for 21 blogging initiative for Down Syndrome Awareness, not for you to know about my kid, to be aware she exists...hey, you can look at her and realize she's not like all the other kids...it's so you can understand more about my fears for her, my child's triumphs and struggles, and maybe become more encouraging and supportive...maybe make a difference and a more inclusive future for her later... 

And you can hear from four different moms at Not Alone:

Mothers Share Truths Learned Because of Down Syndrome

The truth is, most of us did not choose to become special needs parents. For many of us, dealing with the diagnosis was hard, we had to let go of hopes and dreams. Yet, as time goes by and we find ourselves parenting and loving our children with Down syndrome, we change. We begin to use words to describe them, like “gift,” or “blessing.”

If you want to spend some time reading about other families who have kids with Down syndrome, there is a wonderful list at Down Syndrome Blogs.  If you scroll down, you'll see a ticker with everyone's recent posts on the right.  There are some amazing kids out there!
 
I also should share the following video, but before I do, I want to make a comment on the song.  The first time I saw this video, I was disappointed.  Not because of the pictures or the message - they are beautiful! - but because of the music.  It seemed negative and so defiant to me.  There's a recurrring refrain that "You don't like the way I walk, you don't like the way I talk" in the middle of the singer announcing that she will be herself - anyway.  "It's who I am!"

I listen and it makes me uncomfortable - maybe because it's presented with these wonderful images of kids and adults who are loving their lives.  I am a diva ... compassionate ... sassy ... confident ... a dancer ... a ladies man ... And I think to myself, who doesn't like the people on this video?  Who would stare or glare at them? (Another lyric).

And then I think ... well, maybe that's the point.  So far, nobody has stared at Ben.  Or glared.  To meet Ben is to love him.  

But that may not be true for his whole life.  As he gets older, he may be teased or laughed at or just plain not-liked because he has Down syndrome.  And maybe the point of that particular song with these images is to make people stop and think.  Do I stare?  Do I glare?  Do I judge people who are different than I am?

Can I just be me and let Ben be Ben?  And not treat Ben any differently - or see him as someone who is less than - because we're all just trying to be ourselves.  Whoever we are.  Whoever God made us to be.

Check out the video:

Thanks for loving my boy.

And have a happy World Down Syndrome Day! 

   

Los Spurs!

My in-laws just left after a 10 day visit.  They blessed us by grocery-shopping, making meals, doing dishes, entertaining children and just hanging out.  It was so good to see them.  

The best gift they gave us was babysitting the kids for 3 days and 2 nights so Emmett and I could go on a much-needed mini-vacation to San Antonio.  It was amazing.  Super great.  So fun.

The last time that we had been away for more than a night without the kids was over 3 years ago, when Evan was four and Corrie was around 18 months.  That was right before we left Chicago - Emmett's parents watched the kids while we flew to Texas to look at houses and schools.  Sure, we've had date nights since then - we have some great local babysitters and friends who trade with us - but we haven't really taken a trip together in a long time.  

The highlight:

We went to the San Antonio Spurs game.  I don't know if you can tell from these pictures, but we were up almost as high as you can go in the AT&T Center.  There was only one row behind us.  We are not big spenders, so we tried out the $15 tickets. 

 And our cheap seats were great!  We could see everything.

Emmett has been a Spurs fan since David Robinson was drafted, back in 1987.  He - and therefore, I - have listened to countless games on the Spurs Radio Network, courtesy of the NBA Audio League Pass.  We were always excited for the playoffs, because then we could see them on regular TV.  :)

It was even better to see them for real.
 

 
Especially since the Spurs won! 

Riding a Bike

My 8 year old learned to ride his bike without training wheels - in the span of an hour.  Evan was so happy and proud of himself.  Once he gained a little confidence, he even started riding along with his feet off the pedals and trying to do tricks. 

Evan used to love riding his bike.  When we lived in Chicago, he would ride his bike (with training wheels) to his preschool class, around the block, and to the local park.  I would push Corrie in the stroller and he would race ahead to the next corner or driveway, then pause and wait for me.  After we moved to Texas, he enjoyed riding in our cul-de-sac in the evenings when his dad came home from work.  

Eventually - I think he was around 5 years old - he grew too big for his first bike.  So we got him a new one!  Actually, I think it was a Christmas or birthday gift from Grandma.  :)  Thanks, Grandma!  Emmett and Evan picked out one that was a little too big - so he would have room to grow.  Evan liked it, but he didn't feel super steady, and when we broached the idea of taking off the training wheels, he was reluctant.  One good fall, and he lost all interest in biking. 

 After a 2 year pause in his biking adventures, he has returned to the sport! 

I think he was motivated by a desire to keep up with the neighbors.  He has a couple of friends nearby who like to ride bikes, and he didn't like the fact that his still had training wheels.  Today, Emmett asked if he would like to try riding without the training wheels.  After some brief consideration, he decided to risk it.

I'm so glad he did.

The R Word

Could you just not say it? 

I rarely hear anyone use the word "retarded" anymore.  I don't know why.  I don't know if it's the people I hang out with or that the word has fallen out of favor with the general public, but either way, I am glad.

It's a hurtful word. 

You may think that when someone says, "That's so r-" or "I am so r-" that they aren't really thinking about people with cognitive disabilities.  It's just another word that means foolish or forgetful or uncool or dull.

But it's not.






According to dictionary.com, there are two definitions of "retard" that are disparaging slang:

1. a mentally retarded person
2. a person who is stupid, obtuse or ineffective in some way. 

I don't think Ben is stupid, obtuse or ineffective.  But he will likely have the diagnosis of mental retardation (now termed intellectual or cognitive disability).

When you use the word to describe yourself or a friend or a situation and you mean something negative, it reflects on my son.

Even if you don't mean it that way, could you choose to be kind and leave it out of your vocabulary? 

Today, Wednesday, March 6th, is Spread the Word to End the Word Awareness Day.  You can find more information here. 

  

This sweet, huggable, smart, funny, mischievous, completely adorable little boy

~ and his family ~

thank you.

 

Boys Are Different Than Girls

  

Today I got a call from the school right at 3 p.m.  I wondered if Evan had missed the bus or if I had forgotten a club meeting today.  Instead, the school nurse was on the phone.  She informed me that Evan had vomited in the restroom several times and then again in the classroom.

He went to the nurse’s office but since it was already the end of the school day, she just sent him home on the bus and gave me a call.

I could just imagine how embarrassed Evan must feel – I always hated getting sick at school.  I waited in front of our house for the bus to arrive.  Would my poor boy arrive with a look of shame on his face?  Would he be sweaty and pale? 

The bus pulled up.  Evan and the neighbor boys tumbled out.  Was he drooping?  No.  Pale?  Nope.  Fatigued?  Not really.

He sat on the couch and told me all about it.  He threw up 3 times in the bathroom and then threw up (“A LOT!” – he exclaimed enthusiastically) in the classroom trashcan.  I rubbed his back and made him a comfy spot on the couch.

“You know what the good news is, Mom?”

“What, honey?”

“I totally beat Luis’ record!  He threw up five times in one DAY, but I threw up four times in an HOUR!”

I guess when you’re an 8 year-old boy, that is good news.

Fortunately, he hasn’t had any stomach problems since he came home, and he doesn’t have a fever.  I’m hoping that whatever was bothering him is out of his system now. 

And I did ask if he and Luis had discussed the vomiting record PRIOR to Evan’s amazing feat.  I wouldn’t put it past him to rise to the challenge, if someone suggested it.  He has a real competitive streak.

He said that the subject didn’t come up until later.  (Whew.  I could just imagine the parent/teacher conference if he had been vomiting on purpose).

~~~~~~~~~~~~~~~~

When we picked Emmett up from work, both big kids were talking at the same time.   

Corrie was happy to see her Dad:  “Dad, could you tell me a high and low of your day?  Or a mad and sad?”

After Emmett answered Corrie’s question, he turned to Evan.  “What did you want to say, Evan?”

“I just had one question.  What is 15 times 300?”  

(I think he had been thinking about buying some special airship in a computer game).

Boys and girls are different.