Conversations

Blue Blankie, photo taken by Corrie

In the car:

Evan: Corrie, who do you love the best?
Corrie: God and blue blankie.
Evan:  What?  You can't love blue blankie the best.  He can't even talk.
Corrie:  Yes, he can.
Evan:  No, he can't, Corrie!
Corrie:  For pretend, Evan.
Evan:  It hurts my feelings that you like blue blankie more than our family.

Talking about Kiki Camarena (DEA officer whose 1985 kidnapping and murder inspired Red Ribbon Week in the U.S.)

Evan: Why did they kill him?
Mom: Because he was doing something important.  He was trying to stop people from selling drugs and using drugs to hurt themselves and other people.
Evan:  Was he doing what Jesus wanted him to do?
Mom:  I think so.
Corrie:  Did he flush and wash his hands?
Mom:  Yes.

In case you can't tell, we've been talking a lot about good hygiene and potty routines at our house lately.

The Rest of the Story ... part 2

I wasn't able to see my OB/GYN until I was 10 weeks along.  When I met Dr. Flores, she did an ultrasound so I could see the baby, and we talked about the pregnancy.  She mentioned that she might want to induce me at 39 weeks, due to my Advanced Maternal Age.  (I turned 35 in August of 2010, became pregnant that November).  I hadn't really thought of myself as an old mom before.  Then again, I didn't think of myself as a young mom, either.

For each of my pregnancies, we've done the early blood test.  My husband's brother had severe spina bifida, and we are at a higher risk for having a child with spina bifida.  With my first pregnancy, it was the triple screen.  Second pregnancy, the quad screen.  And this time, the penta screen.  Before this pregnancy, I didn't even know how the results came back - there was never any cause for concern.  This time, my doctor brought me over to her computer and showed me a list.  There was a list of various conditions (is that the right word?) on the left of the screen and ratios on the right.  I looked for spina bifida first; the number was something like 1 in 2500.  That was a relief.  Then as I scanned the list, I saw that the ratio for Down syndrome was 1 in 19. 

My doctor said that it was a pretty high chance for having a baby with Down.  She recommended that we have a level II ultrasound at a special clinic.

The day of the ultrasound was horrible.  I had a MOPS steering meeting that morning, then I had planned for a friend to babysit Corrie so Emmett and I could go for lunch and to the ultrasound.  A mini-date!  Unfortunately, while I was at MOPS, Corrie was not acting like herself in the childcare room.  The workers came to get me, saying that she seemed sick.  Poor girl!  I brought her home and sure enough, as soon as we walked in the front door, she threw up all over herself and me. 

I couldn't leave Corrie with a friend if she was sick.  I called Emmett, and he came home to keep Corrie while I went to the ultrasound by myself.  I was nervous, and I was sad that he wasn't going to see the baby.  He had gone with me for the ultrasounds for each of the other two kids. 

I had kind of a weird conversation with the nurse beforehand.  She commented that 1 in 19 is a pretty good chance of having a baby with Down Syndrome, and she would terminate.  She also said that she doesn't have any children and may not want to, after realizing all the problems there can be.

The ultrasound tech was pleasant, gave me some pictures of our little boy - he was active, moving around a lot.  Fun to see!  Then the doctor came in to talk to me.  She was nice, too, explained things when I asked questions, and seemed very willing to talk through things.  Good news: none of the major markers for Down Syndrome were there.  Not as good news: the baby had an echogenic bowel, which is a minor marker.  She said that it could be there for any number of reasons - Down, cystic fibrosis, and some other minor reasons.  I'm a carrier for cystic fibrosis, so she recommended that Emmett be tested.  She also said that the baby's femur was measuring a little short, not short enough to consider it a major indicator of Down, but just a little short.  (Both our other babies have huge heads, so if they were comparing the leg to head circumference, then it wouldn't surprise me that the leg might come up a little short).

I told the doctor that we were not going to terminate, and I didn't know whether I wanted an amnio.

My friend had picked Evan up from school, so I got him, then came home.  Corrie still had a fever, but hadn't thrown up again.  Emmett had to teach a class, so he ran out right away without talking about the ultrasound.  And I missed Evan's open house at school because Corrie was sick.

I felt emotionally wrung out. 

And hungry!  I didn't want to cook and I didn't want to drag Corrie out to the store to get sick kid feeding supplies.  So ... I ordered pizza and a Sprite.  It may have been Corrie's favorite sick day ever since she got to drink Sprite all evening to calm her stomach.  :)

The Rest of the Story ... part 1

 

Emmett and I figured that we would have three children.  We each come from a family of three kids – two boys, one girl – and we both liked growing up with more than one sibling.  I can’t really remember when we started trying for #3.  I think it was late 2009.  Technically, we weren’t trying.  We just weren’t preventing.  I wasn’t keeping a calendar or anything. 

We had also talked about adding children to our family via foster care or adoption, so we started the process of applying to be foster parents with a local agency.  Over the summer of 2010, Emmett began to feel a little reluctant about foster care – and I didn’t want to push our family into something that we didn’t all agree on.  So we paused on our foster care application and focused on other things.

I don’t think either of us thought that we would actually get pregnant.  It was taking a long time, and I turned 35 in August 2010.  We were going to stop “trying” soon, just hadn’t gotten around to making the decision. 

In early December, we had plans to go away for a weekend to celebrate our anniversary.  Two sets of family friends had agreed to keep the kids, and we were going to drive up to Dallas to see a good friend (Jeremy) from college, then head back to Austin to have a night out for just the two of us.  We were scheduled to leave on Friday and return late Sunday.

On a whim, I took a pregnancy test that Wednesday.  It was positive.  What?!?!!!  Big exciting surprise!

Since we were going away, I wrote Emmett a card to tell him the big news, and I waited – on pins and needles – for Friday to come.  Then Corrie got sick.  Strep.  We canceled the first part of the trip and stayed home an extra day to give her the needed antibiotics.  Friday night, while he and I sat up bemoaning that we wouldn’t get to see Jeremy, I finally couldn’t stand it anymore.  I handed him the card.

He was delighted!  Totally surprised, but so happy.  Once Corrie had been on the antibiotics for a while, we took the kids over to our friends’ house.  They stayed for two days and one night, while Emmett and I left town.  We celebrated our life together and the new life coming to join our family.  

Morning

It's Friday morning.  Ben and I woke up at 5:30 (I woke him up) to nurse and pump.  He ate for a bit, then fell asleep again.  I'm sitting in the dark living room while he sleeps on a quilt on the floor in front of me.  Pumping is done.  I read the verse for the day, checked out the news on yahoo, and visited a few of my favorite blogs.

Emmett and Evan will be waking up in about 15 minutes.  Corrie will hopefully sleep a bit longer.  She's had a cold all week, so we've been hanging out a lot at home.  I hope the rest of us can avoid this illness.  Ben, especially.  My nose is stuffy today.

There is much to accomplish.  I'm having some girlfriends over this evening, so I'd like to do some cleaning and make a few refreshments.  The kids have soccer tomorrow, so I should find their uniforms.  I still haven't found a pediatrician for Ben, so I should make some calls about that.  I'd really like to take a nap.  Other ideas: take the recycling, email Evan's teacher, clean out the garage, laundry, write some thank you notes, call a friend, paint my nails, etc.

At this time in the morning, the day has so much potential.  What will happen?

Trying again ...

Now I've missed a whole week of 31 for 21!  I'm going to blame my husband.  :)  He had to travel to a conference in California this week, and that threw things off for the whole family. 

Fortunately, we were able to hang out with other family members while he was gone.  First, the kids and I drove up to meet my sister-in-law, my niece, nephew, and my mom at a cabin north of San Antonio.  All told, we had three adults, a 6 year old, two 3 year olds and two babies (2 and 4 months).   It was a little crazy.  We stayed two nights and drove back to the Valley on Monday.  Then my mother-in-law was able to come stay the week with us.  She did a lot of laundry, made meals, and entertained children.  It was great.

Emmett finally came home last night, and we're all so glad to see him.  The kids can't stop touching him - lots of hugs and patting and wrestling.  It makes my heart happy to see them love on their daddy. 

In other news, I'm probably going to call the cardiologist tomorrow.  Ben's eating seems to have slowed down a bit, and he's sweating more.  I'm not sure how worried I should be. 


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Resources

I totally failed at 31 for 21 yesterday.  I intended to post something, but ...

Today I thought I'd give you a list of some of the resources I've found over the past 2 months.  Ben's postnatal diagnosis meant that I had (have!) a LOT of research to do.  I feel like I have so much to learn, and I need to learn it quickly.  The following books, websites and organizations have helped.

Babies with Down Syndrome is a book that gives a good overview of some of the medical issues that kids with Down syndrome might experience.  I have appreciated the comments from other parents, and I particularly like the way the book gives an idea of how prevalent the medical issue might be (i.e.  "this affects many children with Ds" or "this condition applies to only a few children with Ds").  The book talks about more than medical issues; it seems like a good reference book to have on the shelf.

The moms and dads that participate in babycenter.com's Down syndrome group have a wealth of knowledge and experience.  It's a friendly place to ask questions.  They also have a blogroll with lots of websites.  I have loved reading about birth stories, heart surgeries, achievements and therapies. 

Choosing a doctor has been one of my biggest concerns lately.  This page gives the guidelines for what tests should be done and when.  I'm planning to take with me when I talk to pediatricians over the next week or so.

Down by the Border is our closest Down syndrome association.  They do special events every other month - we'll go to our first event later in October.  Down by the Border also gives newborn baskets to new parents.  I picked up our basket on Wednesday and it's great: some fun stuff for the baby (a toy, a cute outfit, a baby bath) and lots of information.


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Baby pictures!

Tummy time!

He's so much bigger now - fits in the car seat a little better.

Ben's started talking to me.  Coo!

Such a happy boy!  I'm so glad I finally caught a smile on camera.  :)


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Soccer begins ...

Evan and Corrie are both playing soccer this fall. 

The kids have played two games apiece.  In Evan's first game, his team lost by many, many points.  This could be because their best player from the past two years opted to play football instead of soccer this fall.  We miss J.  In Evan's second game, he played more aggressively than we've ever seen him, and so did the other boys on the team.  The game ended in a tie: 3-3.  It's been fun to see the boys on the team grow in their soccer skills.

For the past year, Corrie has said that "when I grow up, I will be a soccer girl!" She even got a hot pink soccer ball in her Easter basket.  This is the first season that she's eligible to play on a team.  She likes soccer practice OK (especially the snacks), but something about the games makes her nervous.  Corrie loves wearing the uniform (of course!), but has little desire to actually get in the game.  She didn't even go on the field in her first game.  I finally told her that she had to sit with her team and cheer for her team in order to get the after-game snacks.  Snacks are very motivating.  For her second game, we talked to her about going IN the game.  And she did!  She was on the field two or three times, for maybe 30 seconds total, but she got to do a throw-in.  Corrie stayed very far away from the ball.  I'm curious to see what will happen next.

This is a good reminder to take the camera to the games, because this may be Corrie's only season of soccer. 


Ben has slept through all the games so far.  He's got one of those cute baby outfits with a soccer ball on his bottom, so he shows some spirit even while he's knocked out. 

Taking the whole family to the soccer field on Saturdays brings back some fond childhood memories.  I was a somewhat reluctant soccer player, but my brothers were both big soccer buffs.  And my dad got really into it - he would sit at our kitchen table drawing soccer fields on graph paper and making notes about plays and players.  It makes me happy to think that my kids are doing something that their Grandpa Frank would have enjoyed.  I wish he were here to see them!

 (I am trying to post every day to raise awareness for Down syndrome, but I don't know enough to actually post about Ds every day.  If you're curious, click the button and check out some of the other blogs.  Very informative!)


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What to Say

I've had two conversations lately where I felt thrown for a loop. 

The weather is cooling just a bit, and it's wonderful to be outside in the afternoon.  After dinner, our crew headed out front to enjoy the evening.  Our next door neighbors were outside, too, so I took Ben over to show him off.  :)  We were talking about how beautiful he is and what color his eyes are (blue!) and so on, when my neighbor commented that she could see that he was part-Asian because of his eye shape.  I agreed, and then told her that he has Down syndrome as well.  She was super-positive, just kept loving on him and saying how sweet he is (like sugar!).  She's a nurse, so she gave him the once-over and told me that he really looks great. 

Then today, we went to Evan's report card pickup (he did great - all scores in the 90's), and stopped to talk to the school secretary.  She's half Japanese and likes our family because Emmett's half Japanese as well.  She and some of the teaching staff all stopped their conversation to admire Ben, and she made the same comment about his eyes!  "Oh, you can see that he's Japanese because of his eyes!"  This time, I just smiled and agreed; I didn't say anything about Down syndrome because I felt awkward.

I'm not ashamed of Ben at all - or ashamed of Down syndrome.  I'm just not exactly sure how to work it into conversation.  Is it that important to mention that he has it?  Or can people just tell from looking at him?  I look at him all day long, so I don't notice anything different.  He just looks like a baby to me - although I do think he's more beautiful and amazing than any other baby I know.

 I need a conversation strategy.


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Funny Girl

Again, no pictures!  And I'm really sorry because this would mean more with pictures.

Corrie and Ben and I had such a good day.  We hung out at home all morning, then Corrie went out for lunch and a park playdate with her friend Zoe.  Most of our time at home was spent doing laundry, reading books, and playing games on PBSKids.org.  Corrie is a great helper, and she loves to do laundry with me. 

But what she really loves ... is dressing up.  While I folded clothes, Corrie put together her outfit for today:

• blue striped tights
• pink Hello Kitty socks
• black pants
• flowery pink skirt
• blue Hello Kitty jumper
• orange polka dot dress
• Tinkerbell sneakers

And she wore it ALL day long.  I suggested that wearing all those clothes would make it difficult to use the potty, but she didn't care.  What's a little discomfort when one's goal is high fashion?

Just to show off Corrie's sense of style, here she is at "Meet the Teacher" day at her preschool.  So glamorous!



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Some Daddy Pictures

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I just realized I hadn't put up any pictures of Emmett and Ben.  That's partly because if Emmett has Ben, then I'm probably 

   (a) sleeping

   (b) accomplishing something around the house 

   (c) pumping!

   (d) entertaining/refereeing/separating Evan and Corrie or

   (e) running errands.

I'm not hanging out taking pictures!  :)

Here's a couple of quick pictures for your viewing pleasure:

Emmett is a great dad!

National Down Syndrome Awareness Month

Hello, October!

This is National Down Syndrome Awareness Month.  There are lots of activities happening on-line and in real life to educate and inform people about Down syndrome.  I am thankful because I have a lot to learn.

We didn't know that Ben would have Down syndrome when he was born.  We knew that it was a possibility, but we didn't really think about it much.  We prayed for a healthy baby, and we talked about how having a third child would change our family, but we didn't anticipate having a baby with special needs.

Maybe sometime later this month, I'll write about the prenatal testing and the diagnosis at the hospital.  I don't have the time right now to find the words.

I will say that I spent Ben's first month worrying more about his eating, peeing and weight gain than I did about Down syndrome and congenital heart defects.  However, now that he is 2 months old, with a good eating schedule and gaining weight, I am trying to learn more about Down syndrome. 

The most fun thing has been reading blogs.  There's a challenge going on right now called "31 for 21" - the idea being that people should post once/day for a month to raise awareness of Down syndrome.  I'm not participating because I'm only 2 months into the journey.  However, I plan to READ LOTS of these posts.

You are welcome to join me!  :)  And please, give me a heads-up if you know of a great resource or read a fantastic post.


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