What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Friday, December 12, 2014

A Photo Post

Now that two months have passed, I've decided to start blogging again.  It takes some effort to exercise the writing muscles after a break, so I'm stretching first.  It's hard to find the words when I haven't written in a while.  So ... here are some photos from the past couple of months.

Corrie and Ben waiting while Evan got a haircut:

Corrie and I hosted a party for the adults in the Down Syndrome Association.  Corrie wanted us to match, so she put on jeans like mine, found a necklace, had me put her hair in a ponytail, and told me to wear my apron.

Evan crashed a photo before the DSA party.  

Corrie and I went to a glamorous birthday party - she had makeup on, and her hair and nails done.

Here's another one from the haircut day.  Corrie sang Laurie Berkner's song "I'm Gonna Catch You" and Ben danced.  Here he is doing the "I heard a sound" line.

Shopping at Target on a drippy day.  Ben pulled his shirt over his head since he didn't have a hood.

This was around Thanksgiving (note the headdress).  This is one of Ben's new expressions.  Makes me smile.

Corrie and Ben while we were reading books before bed one night.  They are very sweet together.  Also, I don't take photos when they are yelling or complaining about each other.  

Evan and Ben eating pears and relaxing on the couch.

I'll try to write more soon.

Sunday, October 5, 2014

31 for 21: Day Three of Five: Seven Things

I've noticed other bloggers posting 21 things about their child with Down syndrome.  I think that is a great idea!  I'm going to break mine up into three posts, since I am not keeping up with my daily posting goal for October.  

Seven things to know about Ben:

(1) He's a music lover.  He started with Signing Time, then fell in love with Laurie Berkner, then it was Elmo and the Sesame Street celebrity songs on youtube.  For a while, Mother Goose Club intrigued him, and now ... he likes the music from Frozen.  If I have a chance, I'll try to video his interpretation of "Let It Go."  He doesn't really sing at all, but he knows all of Elsa's moves.  You can't help but smile.

(2) Ben has over 200 signs.  He's been slow to speak, so sign language has been a great help!  

(3) He is Mr. Independent.  I appreciate that Ben wants to do things himself (get dressed, walk up/down stairs, take the bottle of juice out of the fridge), but it also makes me a wee bit crazy.  I'm learning patience.

(4) Favorite food: pizza.

(5) Ben is fascinated by doors.  He LOVES the automatic opening doors at our church.  Every time we are in the lobby, he has to go in and out of the automatic doors.  He walks out, then moves to the right to stand next to the building while the doors close.  Once they close, he steps up so that they'll open again, and then he strides in again.  But he's not particular - he likes regular doors, too.  Emmett and I used to joke that if we could only find a toy (kind of like this one) that was just a door to go in and out of, Ben would play with it all day long.

(6) Ben's got a little Russell Westbrook in him.  If we're outside playing basketball, Emmett will pick him up so Ben can throw the ball in the tall hoop.  Once Ben's on the ground again, he has a whole taunting/celebration act that he does - lots of arm waving and yelling.  We're perplexed, because our house is tuned into Spurs basketball, and we know that Duncan and Leonard don't go on like that.

(7) Ben has been saying more words.  His first and most reliable word is "up!" accompanied by a finger pointing in the same direction.  Otherwise, he says "bubble," "mama," "dada," "papa," and just this week busted out "blue."  Preschool has had a huge impact on his verbalization.

This is a photo from last summer.  He looked so little then.  

Friday, October 3, 2014

31 for 21: A Busy Week

One of the best things about participating in the 31 for 21 blog hop is that you don't *have* to talk about Down syndrome, you can talk about anything.  You're just supposed to try to blog every day.

I've been talking about Down syndrome to people in real life all week long!  We're gearing up for our second annual Step Up for Down Syndrome walk, and I have been consumed by the details - Tshirt distribution, last minute vendor additions, layout for the walk pavilion, meetings with city officials.  I have a persistent uneasy feeling that I've forgotten something.

In the meantime, I also spoke to my MOPS (Mothers of Preschoolers) group about Down syndrome awareness month, and I spent today at a conference booth talking to medical professionals who do perinatal care.  The moms in MOPS were incredible - the last five years in that group have been some of my most challenging and rewarding as a mom.  It was a real privilege to present for them.

I keep telling people that it's a wonder that I can speak in complete sentences.  My brain is fried!

Evan, Corrie and Ben have been incredibly patient with me.  I have dragged them from one end of town to the other while I'm running errands and making phone calls, and I'll keep carting them around for the next week.  McDonalds and Chick Fil A are getting a lot of business from the Tomai family.

We did manage one family fun night last week.  Here we are:


Wednesday, October 1, 2014

31 for 21: Day One!

I have many plans for this October, and one of my plans is to post every day in recognition of Down Syndrome Awareness Month.  Since it's already after midnight on the first day, I'm clearly not getting off to the best start.

So ... meet Ben!

Ben and I enjoy taking selfies together.  I finally got an iphone, and now I'm going crazy with the selfies.  I try to control my posting on facebook, but I may indulge on the blog this month.

He's such a cutie!  


Monday, September 1, 2014

Let's Talk Preschool (1)

Oh, the drama!  Before having Ben, I was completely unaware of the process that children with disabilities go through before starting school.  Now I know (and we are only at the very beginning).  

To put it simply ... it's complicated.
The federal government provides Early Intervention (EI) services until a child turns 3.  If a child has a demonstrated need (or diagnosis), the school district becomes responsible for providing therapies and services for the child on his/her third birthday.  In order to determine what services the child should receive, the school district evaluates the child.  For Ben, this involved three separate sessions (one with a speech therapist, one with an occupational therapist and one with a physical therapist).  I also had an interview with a diagnostician, and then filled out a separate evaluation form.  Ben's current EI therapists (OT and PT) and his case manager submitted evaluations as well.

After the evaluations, it is time to determine what services the child will receive.  I do NOT understand all the complexities of IDEA (Individuals with Disabilities Education Act), but basically, it provides for each child to have an IEP (Individualized Education Program).  

This is a formal document that directs educational services including 
  • therapy (what kind, how often, etc) 
  • supports (a one on one aide, modifications to curriculum, etc). 
  • location (in the resource room, in a typical classroom in the special education classroom)
It is intense!

Since Ben turned three in July, we've been trying to figure out what his school year might look like.  Here were some of our driving thoughts/concerns:

(1) Evan and Corrie both went to a small Christian preschool 3 mornings/week when they were three and four years old.  I stay home, and that was just the right amount of time for them to be in the classroom, have fun time with other kids, and still get lots of time with me.  And it's a wonderful school!

(2) The school district provides a 5 day/week special education preschool with a great teacher/student ratio.  Right now, there is one teacher, two aides, and less than five kids.

(3) Ben is predominantly nonverbal.  He has one definite word: UP!  He also knows 200+ signs and is a pretty effective communicator, even without words.  

(4) Ben scored near average on the assessments.  There were some distinct areas of delay (notably, speech) but other areas where he is close to his age in cognition. 

(5) We haven't really started potty training yet.

(6) Research shows that inclusive classrooms (with typical kids and kids with special needs) produce better results for ALL the kids.

(7) Ben, Corrie and Evan would get a kick out of going to school together.

In anticipation of Ben's third birthday, those thoughts have been rocketing around my brain for the past year.  We want to get Ben off to a good start.  What does that look like?
To be continued ...

 Dropping the big kids off on their first day ...

 Putting shoes on with Corrie before she leaves for school.

Friday, August 1, 2014

Rewriting the Story

Three years ago Wednesday, I had a baby boy.  My doctor held him up and announced, “He’s beautiful!  Perfect.”  And I will be forever grateful for her words.

Later, as I waited to hold him, I noticed some sideways glances and head nods among the nursing staff.  And when I finally held my son, I thought, he has Down syndrome.  I waited for someone to say something, to confirm what seemed obvious to me, but no one did.  So I wondered – am I wrong? 

They took him away, and I remember lying in the hospital bed overnight, just wondering.  Praying.  Waiting for my husband’s flight to get in so that he could wonder with me.  I felt fear.  Worry.  And the most protective love I have ever felt in my life. 

Eventually, the hospital pediatrician peeked his head into my room.  “You know about the Down syndrome, right?”

And that was it.  No information.  No local contacts.  Just a casual comment.  My feelings of ignorance and isolation lasted for months.

Fast forward three years.  I stood with two of the other women from our local Down Syndrome Association – an organization that didn’t exist when Ben was born – in the conference room of that hospital.  We were there to do a short presentation for the OB/GYNs who deliver there. 

“We are here to help. 
Here is a pamphlet about how to deliver a Down syndrome diagnosis …
here is an excellent booklet with accurate information about Down syndrome …
here is information about the Early Intervention program …
and here is information about our organization.”

Before any of the doctors arrived, I walked around the conference room and prayed.  I thanked God for the local relationships that exist now for families of children and adults with Down syndrome.  I thanked Him for the opportunity to talk to doctors about how they deliver the news, and I thanked Him for Ben. 

After the doctors heard our spiel, they had good questions about prenatal diagnoses, about the DSA, and they asked us to bring more information for the hospital social workers and staff.  The physicians commended our organization and requested extra packets for their colleagues.

It was surreal to be in that place, to remember the fear and loneliness of those early moments, and to contrast them with the sense of hope and community that I feel now.  Ben is a great kid, an essential element of our family, and the Down syndrome community (local and beyond) has been a gift to me.

I may not be able to change the story of Ben’s birth and my fear, but I hope that what we did on Wednesday will help other new moms and other babies to have a better start.

Look at my 3 year old!  Isn't he something?


Monday, May 12, 2014

Corrie's Summer Plans

Our family is ready for summer!  We have big plans: a trip to Hawaii, a trip (for me!) to Chicago and Indianapolis, possibly a Mississippi visit, lots of pool time, sleeping late, and more.

I asked Corrie if we could make a list of fun activities that she and I could do together - just us girls.  She ran with that idea, and now I have a list of 49 fun mother/daughter activities. 

Highlights include:
  • travel ideas (Disney Land, Disney World and Kansas)
  • cooking (bake cookies, cakes, pies, pancakes, waffles and pizza)
  • napping on the couch
  • relaxing on the couch
  • entertainment (the Nutcracker and Rio 2)
  • crafts (flowers and bracelets)
  • make a video
  • puddle stomping
  • eat popcorn
  • eat candy
  • eat apples
  • eat pears
She even added some self-improvement goals:
  • jogging and exercising
And a few things that we don't know how to do:
  • play guitar together
  • sewing
And she recognizes that even chores will give us time together:
  • cleaning the house
  • grocery shopping
But my favorite item on the list is "a wedding."  So if anyone I know is getting married this summer, I have a 6 year old girl who would like to be my date to your wedding.  

I don't think we will manage to do everything on the list.  I'm pretty sure Disney (on both coasts) is out.  And I doubt we will even attempt to master the guitar in the next two months.  Jogging is questionable, too.

But I look forward to eating pears and relaxing on the couch with my favorite girl.

Thursday, April 24, 2014

Work/Life Balance

Here's a piece of advice: don't ever ask me for advice on work/life balance.  I don't know how to do it.  I've been pulled in multiple directions lately, and the whole family is feeling it.  


Ben is starting preschool next year - in a private church-based preschool 3 days/week, and in the public school's special ed preschool class 2 days/week.  Ben has to undergo some evaluations, and then Emmett and I will sit down with representatives from the school district to figure out Ben's IEP (Individualized Education Program).  We'll have these IEP meetings at least once a year until Ben finishes high school.  I've been researching Ben's rights and thinking/praying about how to advocate for him in this situation.

Meanwhile, Evan and Corrie are both excited about the church Mother's Day musical.  Just typing those words reminds me that we totally missed rehearsal tonight.  Oops.  We ran errands instead.  I took all three kids to the grocery store, Hobby Lobby AND Wal-Mart, plus we picked up milkshakes from Sonic and visited Emmett at work.  Then I fed them frozen pizza and put them to bed - we skipped baths.


And Evan is still playing soccer.  Note to self: don't forget practice tomorrow!


Plus ... we have exciting plans for the RGVDSA this year, and I have a long to-do list.  It has been wonderful to see the organization grow, but there's a lot of time and work involved.  And my vision feels bigger than my abilities.


Ben and I drove up to the school district this morning to drop off some paperwork, and I realized that sometimes it is just hard to be a parent of a nonverbal kid.  Ben babbles - he's very expressive - but he has no reliable spoken words yet.  He has tons of signs, so if I'm looking at him, we can have conversations.  But in the car, I can't see his signs, so it's easier to just turn on the radio or talk to someone on the phone.  

Part of me is grateful to have one quiet kid (Evan and Corrie talk all the time) but it's not fair to Ben for me to view his silence as my free time.  When I would drive with the other kids, we would sing in the car or point out the windows at trees or machines.  And I remember to do that with Ben some of the time, but I often find myself just forgetting to interact with him.  My mind goes straight to that to-do list.




I have similar moments with Evan and Corrie.  "Just wait ..."  I say, while I type one more email.  "Instead of running in the race, will you sit with me at a table to hand out info about Down syndrome?"  I ask.  They lose some of my time and attention so that I can be an advocate for Ben and for other individuals with Down syndrome.  It is their sacrifice.


So ... tonight while the kids and I were running errands, I asked all three of them, "Do you mind?  Is it OK that I do stuff for the Down Syndrome Association?  How do you feel about it?"  I want them to know that they are the most important people in my life.


They responded immediately.


"It's great, Mom!  You do a walk, and then there's cotton candy!  And popcorn!" exclaimed Corrie.  "And it helps the best baby in the world - Ben!"

"It's the right thing to do," said Evan.  "You help people."

And Ben smiled and waved and signed a song.

I think this will be a long journey - figuring out the balance between family and service.  For today, I am just thankful that these three (and Emmett!) are on my team. 

Monday, April 21, 2014

March and April in Five Photos

I'm a terrible blogger!  I have so much to say in this space - and I barely say anything at all!  I'm throwing this post together just to get my mind back into a writing zone.

For inspiration, I checked out the photos from the last MONTH AND A HALF.  I can't believe it's been that long since my last post.

Here's what I've been up to:

(1) Meeting - and sledding with! - one of my favorite kids from the blogging world (and her awesome mom and dad).

(2) Showing some Chicago love by getting Ben a football hat with Bears colors.  Yes, I know we live in south Texas and he will probably only wear this a couple of times next winter.  (Corrie actually stole it from him and wears it around the house occasionally - pretending she has beautiful braids).

(3) World Down Syndrome Day!  This is the third time our family has recognized this day.  The first year, we had a potluck dinner with 7 families.  The next year, around 100 people came to a celebration at Chuck E. Cheese.  This year, we had 250 people meet at a park for hot dogs, games and a balloon release.  I'm amazed every time I think of it.  

Note: We took this picture first thing in the morning - right before the kids headed off to school.  Ben's not normally dressed and ready to go at that time.  He looks a little sleepy still.  Ha!

(4)  We celebrated something else ... but I can't remember what it was.  This is why I need to blog more often.  Corrie got to go to Build A Bear to make her own Rainbow Dash (from My Little Pony) - she's been saving money, and we've been hoarding gift cards.  Then we all enjoyed root beer floats!

(5)  Emmett and I went on a cruise to celebrate 15 years of marriage!  OK, so our anniversary was back in November ... and this was actually a work-related thing for Emmett (he had a conference onboard) ... but still, a CRUISE!  My mom took care of all 3 kids while we vacationed for 5 whole days.  I napped.  And read books.  And napped some more.  It was so restful.

And we had a wonderful Easter, but I plan for that to get its own post.  Possibly in June.  :)

Thursday, March 6, 2014

Advocating for the ABLE Act

Guess where I went last week?

To Capitol Hill!  

I joined a group of advocates from all over the United States to talk to our senators and representatives about the ABLE Act.  The current version of the Achieving a Better Life Experience Act was introduced in February 2013 and would allow individuals with disabilities or their families to open a tax-sheltered savings account to pay for certain long-term expenses.  

I'm terrible about remembering to take pictures, but I visited the offices of Senator John Cornyn, Senator Ted Cruz, and Representatives Stockman, Granger and Hinojosa.  I met several other parents from Texas, and had a meeting with David Egan, an amazing self-advocate.

I even got to meet Sara Wolff, the woman with Down syndrome who has collected more than 200,000 signatures on Change.org in favor of the ABLE Act.

It was inspiring to spend a day on the Hill talking to people about the ABLE Act.  This article explains the legislation a lot better than I can, but I'll try to share how the ABLE Act will impact our family.  As the law now stands, people with disabilities are only allowed to save $2000 before they lose eligibility for needed governmental services, like Medicaid and SSI.  As a parent, this means that I can save money for Evan and Corrie under their names (for college, or a car, or whatever) but I can't save any money in Ben's name.  He's forced to remain in poverty in order to receive services.  Keep in mind, he doesn't receive any of these services now.  He's on our private insurance, and we pay a monthly co-pay for Early Intervention.

This was my message to our congressional representatives:
Ben has gifts, strengths, talents and opinions.  I have hope and confidence that he will want to participate in our community life - and that he will be a valuable member of our community.  Ben has so much to offer, and the ABLE Act will allow our family to save for his future just as we are saving for our other children.  We have high expectations for all three of our kids, and I promise that we will do our best to give all three a great start.
Over 400 members of Congress are signed on as co-sponsors of the ABLE Act.  If it came to a vote today, it would pass.  We just have to get the bill to the floor.

I was astonished by the amount of people wandering the halls of Congress to talk about different causes.  There were ladies from the Garden Club discussing environmental issues, young people addressing the need for suicide prevention, and more.  I'm grateful to live in the United States and have access to our elected officials.  Never in my wildest dreams would I have imagined that I would go to D.C. to advocate for my child and others like him.  And yet, here I am.  

This boy - and his future - are worth it!

Tuesday, February 4, 2014

Slowing Down

I have big news!  Ben is walking.  At 30 months old, he can walk confidently on his own for a good 30 steps.  Now, he is not walking full time.  His gait is wobbly.  He still opts to crawl if he's in a hurry.  And occasionally he will use his signature butt-scooting move to go a short distance.  But ... this boy can walk.

It has been a long time coming.  When he was a baby, I used to try to pull him to a stand.  He flat out refused to put any weight on his feet.  I would lift his arms to pull him up and Ben would remain in a sitting position - just sitting on air instead of letting his feet drop down to touch the floor.  He learned to roll over before he was a month old, but it took forever for him to get on all fours.  He army-crawled for months.  And then instead of crawling, he developed a silly way of scooting on his bottom. Man, was he fast!  If the kids left the garage door open while I was distracted, Ben would be in the garage, across the driveway, and halfway down the sidewalk to the neighbors' in a flash - all while scooting on his bottom.

I knew that he would learn to walk eventually.  And I didn't really mind the wait.  The scooting was funny, and when he figured out crawling, it was great to watch him motor across a room.

There were pangs, though.  Moments where I realized how hard he was working to feel comfortable on his feet, and times when I saw other little ones striding across a room while Ben sat comfortably in one spot, not ready to move or explore.

I wrestled with my expectations.  How much should I push him?

We built in a little walking and exercise time every day.  He saw (and still sees) a physical therapist once a week.  Big brother and sister called "walk to me, Ben!" as he took tentative steps from a couch to a sibling.  We laughed as he applauded himself.  A friend brought over a great walking contraption made out of PVC pipes.  Ben did laps.

What made the difference?  I'm not sure.  It could have been the tubes in his ears.  Maybe he had some balance issues that were remedied by getting tubes.  It could have just been the right time;  he was finally ready.  He got more standing toys (like this sand table), and his stamina increased.  

But I think a big part of Ben walking more now has to do with me and my willingness - finally - to slow down.  

It takes a lot of patience to hold his little hands and walk together down a sidewalk.  My back ached from bending over to hold fingers.  And honestly, I am often in a hurry.  Impatient.  I have things to do and places to go.  Life is much simpler when you can swing a baby onto your hip and tote him around.  Or stick him in a shopping cart while picking up a few items at the grocery store.  I got in the habit of carrying him everywhere because (1) he's my baby and (2) it was just plain easier.

Over the past month, I have deliberately given Ben opportunities to walk.  I have slowed myself down to walk with him from the parking lot into church.  I have let him out of the cart at the grocery store so that he can help me push.  I have left the stroller in the trunk while Ben and I mosey around the park.  

This kind of practice is fun for him even if it feels painfully slow to me.

But it has been good for both of us.  I need the reminder to slow down, to spend time on the important things, not just the urgent.  To give my attention to the significant people in my life.  To let my loved ones have a say in how we spend our time together.

And now Ben is walking.  Ironically, this is probably going to speed us up all too soon.

To see him walk, check out this video.

Wednesday, January 29, 2014

Thoughts on Sign Language, Speech and Communication

Ben knows many, many signs.  I really should make a list.  I know he's got more than 100 words, but I haven't bothered writing them all down.  Maybe he has 200!  Or not.  :)

For a long time, it seemed that Ben would rarely begin a conversation himself.  He would respond to questions (ex. "Would you like something to eat?") with appropriate signs ("banana," "eat," etc.).  He clearly understood what we asked, but he rarely made the first move.

Lately, he is using sign language more effectively - and he is initiating conversations.  

When we were sitting in the living room on Friday, Ben pointed out the window and signed "outside.  slide."  Of course, it was 32 degrees, so I told him that we could not go slide outside, but I loved that he requested something that wasn't food or Signing Time.

If I'm attempting to put him in his crib (and he doesn't want to go to bed), he will point at the door to the bedroom, signing "Go.  Please.  More."  

He signs "book" when he's ready for storytime.  He will often sit with a book and sign all the words to himself.

Corrie loves to play with Ben, but she often provokes him.  They will play in some rough and tumble way, and he will communicate his displeasure by grunting.  She won't stop, and then he responds by pushing her.  Now it is not right for Ben to push or hit, but I can see how it frustrates him when he is "telling" her to stop and she continues the behavior.  We have had several conversations about how Corrie and Evan have to pay attention to the ways Ben communicates - even if he doesn't have spoken words yet.  Well, the other day, she was messing with Ben, and he grunted a couple of times, then he stopped, looked at her very deliberately, and signed emphatically, "STOP."  It was great to see him use a sign at the right time, in the right context.  And she knew what he meant.

I hope and expect that Ben will learn to talk.  He can make lots of noises (you should hear him when he "talks" on the phone) and he moves his lips into the appropriate places for sounds (Mmm, Bbb, Ppp), but he hasn't managed to connect the sounds with the lips yet.  He just got tubes in his ears, so I'm hoping that we'll see an improvement in his speech.  I don't hear him use many consonants, and I wonder if that has to do with his hearing or fluid in his ears.

Lately, I've been thinking about preschool.  Ben turns three this summer, and he will start preschool in the fall.  In my ideal world, he will attend a local church-based preschool 2-3 mornings a week, and go to the public preschool the other 2-3 mornings.  I have great confidence in Ben's ability to be part of both preschools.  His receptive language is on track for his age, so he should do fine following directions for circle time, songs, crafts, etc.

I'm not sure how preschool will work with Ben's signs.  I want him to be able to communicate with the other kids and teachers, and the best way for him to do that right now is through sign.  However, I also want him to talk.  I wonder how that transition from signing to speaking works.  We use sign and speech together, so I'm hopeful that he will do the same thing - learn to say the word while he makes the sign.  

I spoke with a mom of a teen with Down syndrome the other day.  Her child has wonderful speech, but even so, the mom said that that her daughter will sometimes get frustrated because she will think the words faster than she can say them.  

It is easy to think of speech as an indicator of intelligence, but I begin to understand that it is not.  Low muscle tone and poor motor planning can create a physical barrier between the words in the head and the words that come out of the mouth.  

I want Ben to be able to communicate in a meaningful way.  Right now, he does.

Sunday, January 26, 2014

Weekend Update (mostly Evan)

This was a big weekend for our family.  Emmett and Evan share a birthday: January 24th.  On Friday, Emmett turned 40 (!) and Evan turned 9.  

We celebrated all weekend long.  On Friday, Emmett and I saw the second Hobbit movie while the kids were at school.  A sweet girl from our church came over to hang out with Ben while we had our matinee date.  Immediately after the movie, I stopped at the elementary school to pass out cupcakes and juice boxes to Evan's class.  

Evan's party was Saturday afternoon.  Emmett managed to borrow Minecraft accounts from several friends and family members, so that Evan and 10 of his closest friends could play a massive Minecraft game in one of the university computer labs.  They had a GREAT time.  We took a short break for pizza and ice cream cake, and then they dove back into the computer game.  Afterwards, several parents hung out on campus while the kids ran around playing freeze tag.  I think this was the easiest party ever ... and now I have several elementary school boys asking me about when they can have another game day.  We might have to make this a regular event.

Emmett had his own game night on Saturday.  He played XBox online with several friends from around the country, and they played until after 1 a.m.

On Sunday, we finished the weekend by ordering Chicago-style pizza from a local restaurant.  It was yummy, but not quite as good as Lou Malnati's or Gino's East.  :)

* * * * * * * *

It's hard to believe that Evan is nine.  That sounds so grown up!  Only one more year until double digits.

Things I want to remember about Evan at this age:

(1) He loves to read!  This year, he has devoured the Percy Jackson series, the Chronicles of Prydain by Lloyd Alexander, and he's just diving into Harry Potter.  I loved reading when I was a kid (and I still do!), so his fascination with books delights me.

(2) He is a Two Square and Four Square fiend.  I don't remember playing these games at all, but they are all the rage in our neighborhood.  The kids play Two Square or Four Square at recess, and then they play in our driveway for hours after school.

(3) He still loves hot sauce.  He douses his rice, eggs, tortilla chips, etc. with Tabasco or Louisiana Hot Sauce every time he eats.  I worry about his stomach.

(4) He roots enthusiastically for the Seattle Seahawks.  We will be a divided house when the Seahawks and Broncos play in next week's Super Bowl.

I have more thoughts about the person that Evan is becoming - his commitment to training and practice (in math, sports, and more), his sense of humor, his growing friendships with kids at school and in our neighborhood, and his strong sense of justice ... but all those things are more difficult to explain.

I am thankful that I get to be his mom.

Tuesday, January 21, 2014

Blog Hop: A Truth, A Tip and A Photo

Truth:  I'm not sure what truth to share here.  Do you want facts about Down syndrome?  Here's one: 30-50% of individuals with Down syndrome have a congenital heart defect.  Ben has a moderately-sized ASD - an atrial septal defect.  It's a hole between the two upper chambers of his heart, and we will probably eventually have it surgically corrected.  When Ben was born, I worried more about his heart than anything else.

Tip:  Join a local group.  When Ben was first born, I didn't know anyone near me who had a child with Down syndrome.  I found a lot of information and helpful advice on the internet, but I felt very isolated from the people around me.  Now I know several great families in my town (and even in my neighborhood!) who have children with Down syndrome.  We go to playdates and birthday parties together.  We share advice about doctors, therapists, schools, etc.  I love that my kids will grow up knowing people of all ages who have Down syndrome.

Photo:  Ben likes to help with the laundry.

Sunday, January 19, 2014

A Few Days Without Daddy

My husband has been out of town for a few days.

He doesn't travel often, so when he does, the kids and I bumble around a bit.  We miss him.  

This week, we have eaten lots of chicken nuggets and fries, frozen pizza, popcorn and M&Ms.  The kids also ate fruit, but I'm honestly not sure if they've even seen a vegetable since Tuesday.

On Wednesday, I took them to school ... late.  I was overly ambitious when I made breakfast - scrambled eggs and toast.  By the time we got to school, the teachers and crossing guards had left their posts and there were no other cars at all in the dropoff lane.  Oops.

Wednesday afternoon, Ben had to see the ENT before I pre-registered him at the hospital for ear tube surgery.

Thursday, Ben had surgery to put tubes in his ears.  The procedure itself was simple and short, but I was still nervous.  Anesthesia!  Fortunately, my friend Beckie came to hang out with us at the hospital.  And Ben was a rock star.  In and out, mostly happy.  The nurses kept saying how cute he is.

We picked up lunch for the big kids and met them at school.  They both enjoyed showing Ben off to their classmates.  Evan's class know Ben pretty well; they have seen him at school for programs for the last 3.5 years.  Corrie's classmates got to meet him for the first time.  Ben basically spends his time at school crawling or walking around the gym surrounded by a dozen other kids, who are all trying to give him a high five or throw him a ball or something.  He's quite popular.

Our other daddy-less activities included: two Star Wars movie nights and the Run or Dye 5K.  (And a couple of facetime chats with Daddy, Gamma, Papa and Auntie Jen).

Originally, I thought I would run the 5K with Evan.  He loves to run, and I didn't think he would have any trouble doing 3.5 miles.  However, I didn't realize that Emmett wouldn't be there to watch the other kids ... and then I did absolutely no training after one initial run with Evan in early December.

So ... I walked with Corrie and Ben.  Evan ran ahead and finally walked us for the last kilometer or so.  

Evan felt that dodging the color would demonstrate how fast he was, so he tried to avoid the dye as much as possible.  The blue guys got him the most.

Corrie got lots of color.  After our first dye-ing experience, she sighed, "Mom, I got a LOT of color thrown at me.  It's because I'm so adorable."  No self-confidence problems here.  

Ben ended up with more color than the rest of us.  Every time we went through a color station, the volunteers would squeal, "A baby!" and gently throw color at him.  It occurred to me during bath time after the race that I might should have protected Ben a little bit more.  He wasn't bothered at all, but his ears are still tinted blue and yellow.  Maybe it wasn't a good idea to throw powdered dye at someone who just got tubes put in.  Live and learn.

All in all, we survived pretty well without Dad.  We failed on healthy eating and boy did I get impatient at bedtime, but we did manage to navigate one surgical procedure AND a 5K run/walk.  I'm satisfied.

Thankfully, Emmett arrived home this morning, and we have been relishing his attention all day long.  He has danced with Corrie around the living room, listened to Evan recap the latest Minecraft adventures, and shared his dinner with Ben.  We watched football and napped on the couch.  All is right with the world.