DS

For some time now I've debated on writing more specific posts on Down syndrome partly because this blog was intended as a journal for our family. After a while things just got busy and life kept happening so quickly I barely had time to breath let alone post on the subject. Thankfully things have slowed down (and I'm finally caught up on my posts!) it's come back to me as something I ought to include, after all educating others about Down Syndrome is a part of our family. Isaac brought that to my attention. Whenever someone remarks on how cute Elias is Isaac will reply that he has Down Syndrome and that he loves him. It's sweet.

Down syndrome was so named because a doctor John Langdon Down was one of the first to describe extensively the physical attributes of those with the condition. I have to laugh a little because I recall how the social worker that I met in the hospital when we first received Eli's diagnosis said it was the worse name possible and it should be named 'Up Syndrome' because the children were so positive and always up. As you might guess I had a great inward rolling of eyes at the moment but I recognized that she was uncomfortable and did my best not to give a rude retort. I think it was her way of comforting me, a total stranger.

Some people are surprised when they hear of this of Eli and often say ,"Well he doesn't seem to have it all that bad." Down syndrome is literally an extra chromosome on the 21st pair (hence it is also known as trisomy 21) and it is reflected in every cell of the body. You either have it or you don't and only in extremely rare cases is it otherwise. I had one nurse remark that she thought it was a lucky thing that Elias didn't appear to be "Downs" so bad so perhaps people might be kinder to him. Ironically I was fearful of the exact opposite, that people wouldn't recognize it in him and have unreasonable expectations of him because of their ignorance.

Up until I had Elias I never found anything wrong with referring to someone being "Downs" but I see now a distinction in the wording. It is preferable to say a child who HAS Down Syndrome (shortened as DS) rather than a Down syndrome child. The condition does not define the child just as our inabilities do not define us.

Now I'm sure some of you reading this post are combing through your memories to see if you have ever said such things to me and cringing at it. Please do not worry, I don't offend easily. After all a little less than a year and a half ago I was ignorant of such things. And even if it slips in now and again don't fret too much - we are all learning. That being said I have at times felt the awkwardness of questions hanging in the air unsaid because someone was fearful I would take offense. Please feel free to ask me questions, I want people to understand those who deal with DS and most of all I want people to be able to distinguish my son apart from the condition. We are all more than what we appear to be outwardly thank heavens!

Here he is playing superman with his Baba. Love this little guy!

Eli's Growth Markers

This guy has stayed little for so much longer than my other children that he really takes me by surprise when he hits a growth marker- it's one of the pluses of having a child with DS, I enjoy the baby phase longer! Back in May on our CA trip we discovered the beginnings of his first tooth. When I was first pregnant with Elias the kids wanted to name him toothless and we were beginning to wonder if that was what he'd really be, after all the other two had their first tooth at 3 months! (Nursing was a beast!). By the time they were a year old they had a full set of teeth and here was poor Eli nearly a year without a single one!

So he's been sporting a cute new smile with that one pearl but we saw nothing until just the other day when I stuck a cookie in his mouth and yelped! Apparently three are coming in at once, the incisor on the bottom and his two upper canines. Kinda weird for order but were excited since he loves food and at times it's difficult to modify it for his gummy mouth.

I had been working with him on learning to sit up from a prone position but he showed no desires of doing so until I left for my trip to Maryland. The stinker! I was a little sad to miss it but Kent got it on camera for me.

But this new skilled posed a problem of sorts, whenever he was on his tummy he'd pop up to sitting and refuse to take steps towards crawling. It was such a circus act with Kent holding up his backside pushing his knees in walking motion while I moved his hands. We'd use all sorts of motivators, food, moving all toys a distance away, etc. He finally figured out this was not going away and began 'crawling'. I say this in the loosest of terms since its some strange movement between his sitting up, lunging forward, arms doing an army crawl and toes gripping and pushing. It was effective on the carpet but useless on tile (funny to see though!). At times, due to fatigue, he'd just plant his face sideways in the carpet and put his bum up in the air and push himself along earning a nice rosey cheek for his trouble. Just today though I think he's gotten the hang of it and moves quickly to follow us from room to room. There'll be no stopping him now!

Just last week he was sitting on the floor playing as kent and I were enjoying our Sees candy lollipops. Apparently he wanted some and kept grabbing at me but I was a little preoccupied with my show. The next thing I lockdown to see him standing next to me, he had pulled himself up and used the couch to prop himself so his little hands could reach for the candy. With all that effort I just had to reward him with a few good licks. Unfortunately he refuses to do it when our therapist is here and just gives that impish smile when I try to encourage him! Such a cutie pie!

Carlsbad and Mission Bay

Still playing catch up and I almost didn't both posting this since it dates back to May, but I looked through our pictures and couldn't resist.

Kent had a conference located right in Mission bay, CA. The lodgings were paid for and had plenty of space so I took the opportunity to pack us up. We stopped in Carlsbad for 2 days and spent Mother's Day seeing the flower fields and picking strawberries.

While there we used our Yelp app to find the best places to eat and found this treasure, it was rated 5 stars by almost every single person. Comments detailed it being a mom and pop shop with amazing authentic Japanese food that often ran out by 11 am. With all the fuss I had to stop in.

The fish was amazing! Kent is never that fond of sashimi but he couldn't get enough of this stuff. I bought 2 heaping bowls filled with giant chunk of avocado, sashimi (tuna) and some seaweed salad with some wonderful sauce, each price at just over $6. The two sushi rolls we bought were a nice addition. Apparently the elderly gentleman's wife was feeling ill that day and I was sad not to be able to meet her. I love that they are simple folks trying to make a living at their age and downtown Carlsbad has totally embraced them.

We then dropped kent off at his conference and I took the kids to get settled in our hotel, The Dana. Something was bothering Isaac because he turned down his hot dog at lunch and sure enough once we had parked outside of our room he stepped out of the van and threw up all over the pavement! Boy was I grateful that happened AFTER he got out! The evening was pretty rough but it was only 24 hrs thankfully. We spent the days quietly playing at the beach, flying kites, climbing trees.

Somewhere we have an old pictures of Isaac sitting just like this when he was just over a year old. He loved this panda and I would love to dig it up and compare the shots ... in my free time! (Ha! I guess that won't happent soon!)

On one of my runs in the morning I came across this amazing tree. This thing is huge! The roots snaked out like arms everywhere and I just had to take a few hours to play around with the camera to try and capture it. Some of the roots were as high as Keila's knees, some even taller. While I know the perspective is a little skewed since its from the ground, it still was really rather impressive. The kids had fun too.

Not a good shot but you can see the roots are as high up as Keila's thigh!

I have no idea how old this tree is but there something about it, the immensity of it and its age that makes it a beautiful backdrop for the children climbing it. We really are such tiny beings compared to life!

Since sea world was right next door we considered going but I was glad we didn't in the end. The quiet was refreshing and we stayed much more relaxed with simple activities. I really doesn't take much to be happy and have fun.

Summer!

Typically I've dreaded summer and trying to keep my children busy and happy without the relief of just sending them outside to play. AZ summers are hard that way. But this year was different. I hadn't realized how worn out I was just with the routine of getting the two older ones to preschool and being the permanent aide on other days. It's been nice just to get up slowly and enjoy the morning without needed to rush off. I've been more relaxed and so have the children and we've enjoyed each other much more!

We did enroll Isaac into the Bellair swim team, in part to improve his swimming abilities (and thus help with my anxiety of having 3 little ones in the pool at once) but also to help him deal with his fears of athletics and find confidence in competitive situations. Being the cheap Asian that I am, I can't help but love that he has daily swim practice for a mere $110 for six weeks! Hard to beat.

The anxiety before the race ....

Leaping at the start!

Enjoying some summer treats! The drumsticks were our celebration treats post-meet.

He's grown by leaps and bounds! Not only has his freestyle and back stroke improved in technique, but he is much more comfortable in water. He has also learned breaststroke and even butterfly and with each swim meet his times improve. I wondered initially if was doing it to please me, but despite the anxiety he has grown a love for it and his improving skills. Of course winning ribbons helps motivate too!

Keila has also done some swim lessons and is ever our mermaid princess, fearless in the water! Had I known she had such confidence I'd enroll her into swim team too. We will next year.

Eli was constantly surrounded by adoring kids.

Initially I dread getting everyone into swimsuits and ready for yet another meet. Is hard managing all the kids there in all the craziness, especially for Elias and the noise but in the end I never regret it. One thing this been nice is the fact that Keila cheers Isaac along. Her eyes echo his anxiety before the race and she offers a fervent prayer for him and a quick hug. I see the admiration she has when he succeeds on finishing and loves how she cheers continuously. We've even developed our own cheer and song for each other. It's been something that has brought us together as a family and an unexpected gift.

Keila also had the chance to participate in a summer week long dance class done by Ella Bingham. I remember when she Keila's age and now she's grown up. Apparently she remembers me and our pet rabbit Sunshine. She had a grown up so much! She taught a range of girls from 3 to 10, Keila being the youngest and they did pieces from Beauty and the Beast. Apparently during practice Keila was a fairly active participant. Keila being who she is would duck out and refuse to take part when she was tired but Ella said she never got in the way and would jump in when she was ready.

She was so excited when Isaac, Elias and I showed up for the recital that she clung to us more. Perhaps it was the crowds, she's shyer than Isaac, or lack of sleep but for much of it she kept wandering back to us. Isaac was a little indignant at it and would push her back up front saying, "I'm supporting you in dancing so you better dance!" Which had me chuckling, it reminded me of the one swim meet when Keila was so anxious for him stopping in the lane that she simply screamed as long as she could at him. Loving sibling support!

I've never been really into sports, but I've found its a way to discipline ourselves to do hard things and somehow it means a lot when we know we are not alone but cheered on by those we love. A metaphor for life if you will. I'm proud of Isaac for his hard work and determination to face his fears. I'm proud of Keila and her sweet spirit and strives with him in heart. I hope and pray we will always be such with each other!

Another Year Already!

I'm a whooping thirty eight years of age and while it didn't sound too old to me it tends to feel old since all the other mothers with young children like mine are more than a decade younger. The biggest part of my birthday gift was the trip out to Maryland but a cake "has to" happen according to my children. So on our date night Kent and I got one at the Asian market. I love that the icing is light and fluffy, perfect for the summer heat! Without needing to say much, the kids were really good with minimal of fighting - not much more a mother could ask for!

At the end of the day Isaacs comment was that he never got me a gift and I told I'm he did with his good behavior. He seems rather pleased with himself and made the comment, " oh good, I'm glad I did, it's a nice cheap present!" That's definitely my boy!