End of an Era

Well, it had to happen sometime...and honestly, it's probably a good thing. Due in part to preschool, I think, Brighton has had an absolute language explosion. She's coming out with new phrases and colloquialisms all the time (this can be quite hilarious) and is phasing out some of her "baby" words. I realized this morning, that her name for Pacey, "Doodoo" seems to have made it onto the retired list. While it's completely adorable to hear her little voice say "Pacey", it's a little sad to see the end of her baby name for him.

The two of them definitely go through cycles of getting along really well and...not so well. Happily, after the first few weeks of school transition they are firmly in a phase of adoration. I think the time apart from each other is doing them a lot of good, in addition to the fact they know each have something purely their own during the week.

As a complete aside, on the subject of school, Brighton's teachers have set up a (private) Shutterfly site that they upload pictures to from each of their school days. It's so cool to see what they get up to during the day, and to have that chance to see how your kid acts/interacts when you're not around. But what's really awesome? I get to see firsthand (well, secondhand I guess) exactly what I pay preschool tuition for: gigantic, joyful, educational messes that I do NOT have to clean up!

Anyway, it's been really fun just watching the two kids playing with each other lately, and I've captured a few sweet moments on film.

My efforts on the reading front have started to pay off...I catch
them reading unprompted more and more often

B's new favorite game: Brush Each Other's
Hair. She's so very gentle when she brushes
(and doesn't mind that neither P or I has much
to brush!)

He is SUCH a good sport

She loves to try to do everything he's doing.
They're well matched...she can run faster
but he blows her away on climbing :)

Think I take pictures of my kids a lot? This
was a spontaneous gesture by P when he saw
my camera. I love that he's such the big brother

And finally, completely unrelated but...have you EVER seen
a child that looks less like her mother? I have the scar to prove
she's mine, but otherwise...

Aware of what?

I'm a little wary of the moniker of Down Syndrome Awareness Month. To me, the concept of an awareness month is usually geared towards a 'problem' - one that needs people to be aware of, help raise money for, etc. And I'll just go ahead and spell it out, I don't think Down syndrome needs 'fixing.' I think some of the research into helping people with Ds maximize their potential is interesting, but I have no interest in the pursuit of a 'cure.' I have plenty of thoughts about the research into earlier, less invasive and more accurate prenatal testing, but I haven't decided yet whether this blog is a place I'd like to write about it.

So, having said that, why am I participating in this exercise? Well, there ARE a lot of things I'd like people to be aware of. When Pacey was born, I had zero experience with Down syndrome. Literally zero. I hadn't known anyone personally with Down syndrome, although I suppose I did remember that character on that terribly depressing show, Life Goes On.


So I guess I'd like to help people understand what it's like to be a parent of a child with Down syndrome, as well as how...not so very different Pacey is from other kids. There's a great campaign out there regarding the awareness of Down syndrome with the tag line (motto?) "More Alike than Different." I love this line for its simplicity and accuracy, and it really speaks to some of the myths surrounding Ds (no, my child is not always happy. He has a generally good-natured personality, but experiences the entire range of emotions like any human being)

I also like to think that maybe these blogs can help someone facing a diagnosis of Down syndrome, either in utero or at the time of birth, maybe to help dispel some of the fear surrounding the thought of raising a child with disabilities. I feel like I would have gained SO much comfort in reading some of these blogs after Pacey was born - seeing the adorable faces of the kids, the completely typical relationships many have with their siblings, and reading the words of people having traversed the path ahead of me. And don't get me wrong, I like to read about the challenges as well as the touching moments. I'll be honest and say that any blog I read in which the author asserts that raising a child with Ds is like raising any other child just doesn't ring true for me. Raising Pacey is different than raising a typically developing child. Not always harder, either. Hands down, right now, my daughter is far more challenging to parent than Pacey.

Anyway, this is a bit of a ramble but I thought this might be a good reminder for me to look back on as the month progresses, to remind me why I think Down Syndrome Awareness Month is important. I hope you do too.

When We Knew

I'm not going to talk much about what Trisomy 21 is...chances are, if you're reading this blog, you're familiar with what the chromosomal "cause" of Down syndrome is. I'm not sure I've ever written about when we found out Pacey had Down syndrome though, so that seems like a good place to start.

I had routine prenatal screening done during my pregnancy with Pacey; at that time, what the HMO authorized was a triple screen and high-level ultrasound at 20 weeks. I had both done and nothing abnormal showed up to indicate the possibility of Down syndrome. In addition, I was 25 years old - a maternal age at which the number of babies born with Ds is about 1/1100. This number is different, of course, than the number of fetuses conceived that have Trisomy 21...many of those are miscarried and some terminated.

Basically what the above paragraph means is that a genetic abnormality in my baby was literally as far from my mind as possible. I had a very uneventful pregnancy up until 30 weeks at which time I noticed the baby had stopped moving and ultimately had a c-section the very same day. No one knew quite what was going on with him until he had surgery 4 days later. In retrospect, I believe the NICU staff thought they'd find an intestinal atresia, which is more common in babies with Down syndrome. What was actually discovered was an annular pancreas, an unusual condition in which the pancreas grows in a ring around the intestine, causing a complete blockage. When we received that news from the surgeon, I wholeheartedly believed that that was the extent of our surprise.

I was discharged from the hospital five days after Pacey was born - a painfully beautiful November day in Southern California. To this day I can remember how the air smelled and felt. It was emotional leaving the hospital without him, but frankly in the grand scheme of all that had transpired in the previous five days, I was mainly happy to be heading towards something of familiarity. We arrived home, my mom and husband made me a nest on the couch and my mom had just made me some food when the phone rang.

I answered the phone and it was one of the NICU doctors, as well as a geneticist on the line. He proceeded to tell me that a genetics test had been performed and showed that our baby had Trisomy 21. I don't remember much else that he said at that point.

The next part feels a little too private to share. I will say that my husband was an absolute rock, and that day was one I considering to be a defining point in our relationship. Some hours later, we went back to the hospital and visited our son, a three-pound wrinkled little bundle who'd already changed the course of our lives. I remember that we went to Target from there, to pick up my pain pills and some champagne (classy) to celebrate. I was familiar with the pharmacist there and she asked with no small amount of concern if I was alright...I can only imagine how I looked, having cried for hours and feeling rather tender five days post-op.

In that moment I was about as far from alright as you can get, but now I - we - are better than alright. I wish I could go back and tell that terrified new mom just how ok it would be, but I wouldn't have believed me.

I will say that the first glimpse I had of the fact that we'd be ok was when I saw the picture below. It was the first time I'd held Pacey, probably about a week after he was born, and a nurse took our first family photo. I looked at that photo and somehow, seeing that I looked exactly the same and my husband looked exactly the same was so comforting. Sure, things were different than we had planned for, but we were still US and we'd be fine. And we are.

Edit to the above description: we looked exactly the same but REALLY tired

31 for 21

October is Down syndrome awareness month, and I've decided to participate in a challenge to post everyday this month (31 posts to raise awareness about Trisomy 21). I'll be writing a bit about Down syndrome and our experiences with Pacey, so if you have any questions you'd like to ask, leave a comment and I'll do my best to answer!

I read quite a number of blogs written by parents of children with Down syndrome; Tricia over at Unringing the Bell writes about her daughter who is a month younger than Pacey and is the creator of this challenge. Over at her blog you can see a list of people participating.

Now let's see how many days I last until I resort to posting silly pictures...

Sweet Spot

I'm posting this largely so I can look at it in the middle of February and be reminded that there are so many lovely times of year here, and winter won't last forever!

We've hit the seasonal sweet spot here in MN. It's a stunningly bright and beautiful day, with just a few wispy clouds in the sky. Most of the trees are still green, but there is a particular variety, like the one below, that are absolutely ablaze with color. Short sleeves are comfortable, but no need to get the shorts back out at 70 degrees.

It's dark out by the time the kids go to bed, but light when we need to get up in the morning. The air is fresh and slightly crisp, and every day that it's warm enough to play outside comfortably is a bonus from here. We have Halloween to look forward to, and a birthday season, and then the holidays and a visit from relatives.

Days like this, I feel like I've hit the jackpot.

(Note to self in February: Winter will end. Winter will end. WINTER WILL END)

Betrayal

Sunday morning we were discussing what chores we needed to get done and negotiating how much football was going to be watched when Chris suggested we see if there were any cheap tickets available for that day's Vikings game. I'm usually the naysayer for these sort of spontaneous activities, but the weather was gorgeous, I was itching to get out of the house and I hadn't been to see a game in quite awhile (and never a Vikings game). So I agreed and, once he'd picked his jaw up off the floor, Chris made short work of finding us tickets online.

We ended up having a really fun time, and the kids did surprisingly well. Well, actually it's only surprising that Brighton behaved ok, as football is probably Pacey's favorite pastime (just ahead of jumping off of things). I've been to Qualcomm Stadium a few times to see the Chargers play, but as I said this was my first Vikings game. They do put on a heck of a show, but it was a little weird to be under the dome. Also, kind of smelly. Someone near me was having some intestinal issues and there was a distinct lack of fresh air to dilute the stench.

Still, awesome day and successful spontaneous outing which is not easy to come by with two small kids. The title of this post references the fact that we were all decked out in Vikings gear despite my husband and son's undying love for the San Diego Chargers.

One other funny story - at one point the Jumbotron (is that a real word?) flashed up with the question "Jennifer, will you marry me?"We giggled at the thought that there were probably about 30 hopeful Jennifers in the crown whose boyfriends were feeling a little hot under the collar...

Big and Little

Yes, that's totally a giant Viking horn. Jealous?

My secret weapon to keep Brighton entertained

Couldn't quite tell who this guy was rooting for...

"Yoooook Mama! Dancing!!" She was rather taken with the
cheerleaders (over my dead body)

Food Friday - Fall Baking

One of my very favorite things about fall is baking. I love to bake anyway, but it's so much more satisfying when it's chilly enough outside that turning on the oven is a comforting act, rather than one of torture. I am a big fan of what I consider to be the fall spices as well...cinnamon, nutmeg, cloves.

So, since I was hosting a meeting at my house last night I took the opportunity to try a new recipe: Applesauce Cake with Caramel Glaze. I found the recipe on one of the food blogs I like to read, Food Lush, this summer and bookmarked it for just such an evening as this.

The cake was really easy to make, incredibly moist and not too sweet. The glaze adds a nice contrast of sweetness and a deeper flavor. I followed the recipe exactly for the first run through, and the only thing I might do differently is to boil the caramel a bit longer to get a slightly more robust flavor. All in all though, this one gets a 10 out of 10. Judging by the empty plates I cleared up, my guests would agree.

I might or might not be eating a piece for breakfast...

Find the recipe here. Drool-inducing photos below.

Pre-glaze

I love the extra fancy-factor of bundt cakes

I had to work hard not to eat the extra glaze
with a spoon.