Odds and Ends

We had our first Down syndrome play date, yesterday! I was so excited to get to spend time with Laura and her adorable little girl, Lilly! They are former neighbors of our pastor's family and his wife, Julie, graciously invited us all over so we could connect. Lilly turned 2yo yesterday, and is just so cute! She's been walking since she was 14 mos. and is so fast. She's also the busiest little thing I've ever seen! I think she opened every available drawer and cabinet. I jokingly told Eon that I'm sorry I ever pushed for him to start walking! LOL!

Speaking of walking, our little man turned 18 mos. on Thursday and celebrated the day by taking his first steps! After standing independently in the middle of the room for months, we were all excited when he took it a "step further", so to speak. Unfortunately, I started clapping and cheering just as he fell, so he decided that falling was the thing we were celebrating. For the rest of the evening, he proceeded to stand up, fall, and clap for himself! LOL! Timing is everything.

I've had several people ask how the pregnancy is going. I'm 25 weeks and feeling okay. We skipped all screenings except the level 2 u/s this time around. My reasoning was that of all the things they screen for (with the exception of CF), T21 is the only thing that doesn't have definitive markers readily seen on a level 2 ultrasound. We are not worried about this little one having Down syndrome, so it really made no sense to me to go through the screenings when anything else would be found on the u/s. That being said, I went into that u/s with much fear. I was terrified that they would find something fatal! They did not. :) Everything looked great and within normal limits. I was very relieved. I was quite excited to discover that our tie breaker is a little girl, too! After three boys, I am very ready for pink again. :)

Some pregnancies are easier than others and this is not one of the easy ones. I've experienced near fainting due to blood pressure dips, almost constant itching that has prompted some bloodwork for possible liver issues, and a strained back that left me bedridden for a few days. I'm thankful to know that this is just a temporary inconvenience for an eternal blessing, though! We are anxious to meet this little cutie and see what she brings to the table. :)

I see Down syndrome

When Eon was a few weeks old, I asked a question on Babycenter's Ds board: "When will I stop "seeing" Down syndrome?" Most of the responses were among the vein of "when his personality develops", "when he starts smiling", etc. I noticed Down syndrome every time I looked at him. I think I was looking for it in his features; some indication that it was actually part of him.

Our son, Zak, has blond hair. It is really, really, really blond. I see it every time
I look at him. I can tell when he's been in the sun because it practically glows. I notice if it seems a tad long or if Daddy missed a spot when he buzzed him. It is very much a part of his cool "surfer-dude" personality and I love it about him.

Likewise, I see Down syndrome every time I look at Eon. I can tell when he's tired because his features seem more pronounced. I look at him with wonder that he can look so much like his siblings, and yet, also like thousands of kids across the planet that have Down syndrome, too. I look at him with joy that he is special and different. Sometimes, I look at him with concern and wonder if there is more I should be doing for him. But, I never look at him and fail to see Down syndrome. It is part of his charm and I love it about him.

His cheering section

Eon has been standing from the floor independently for awhile. He's even picking things up from the floor while standing and unfastening his shoes. However, he only does it at home. I think he's too busy checking out the sights when we go somewhere.

That changed at VBS the other night, however. He was crawling around the church foyer playing with some kids while I was talking to some friends. I heard someone say, "Wow! Look at Eon." I glanced over and saw him standing in the middle of the room with a big grin on his face. Several other people noticed and exclaimed over him. I even had a quite a few people tell me about it later. They were all grinning and obviously excited for him.

It occurred to me that all of his typical peers started walking in the last few months and no one seemed to notice. It was a complete non-event to everyone except the parents. Eon stands once in public and causes quite a stir. Everyone notices and cheers.

We are blessed to be part of such a caring group of people who love our son and celebrate his abilities with us!

My chip

I learned something this week. I have a chip on my shoulder. When it comes to Down syndrome, I am starting to expect the worst from people. It started a few weeks ago when I was discussing Eon's transition into the toddler room at church with the coordinator, who is also a good friend. I thought it would be helpful to have our oldest daughters take turns being in there with him to assist him if needed (mostly because he doesn't do well without "his people" around).

Thinking aloud, my friend thought through potential issues with this arrangement and I became ridiculously defensive. I erroneously assumed it was turning into a fight for my son's "rights" and became loaded for bear. Turned out to be a complete non-issue.

This week, I'm working in the nursery for VBS (vacation Bible school). There is a petite little girl in there who is 2yo. Eon tends to crawl like a boy on a mission with his head down and really fast. The first night, he almost ran into the little girl and she freaked. From then on, she'd whimper when he got too close and point him out when he made too much noise. My assumption was that she was scared of him because he's different. It made me sad.

Fast forward to the next night. A typical little girl, Eon's age, got too close to the first girl and she freaked again. After that, anytime that girl got too close, she whimpered. She forgot all about her fear of Eon. I realized I just assumed the problem was Down syndrome, not that the little girl has space issues.

I'm the one with issues. I have to lose this attitude I've begun to carry around! There is nothing wrong with being an advocate, but not to the point that I alienate those around us. What does that communicate to people, if I'm constantly expecting them to treat him differently? I think it just showcases his differences and certainly doesn't convey the intended message that he's more alike than different.

The Day is Coming

I have not been upset or saddened by Eon's developmental delays. In fact, I've relished the extra time we have to enjoy all his stages and phases. I thought I was enjoying them because he was to be our last, but the knowledge that his baby sister will be joining us in November hasn't changed anything. Unfortunately, he seems to be growing up at an alarming rate.

I find myself in near panic attacks about how fast he's growing. I finally realized that I want to keep him little forever and why I feel that way.

He gets attention where ever we go. It's only positive attention at this stage. People acknowledge his engaging personality and comment on how cute he is. Even when he's being shy and stubborn, people smile at him.

Unfortunately, I know the day is coming when he will continue to attract attention, but it will be because he's different, not because he's cute. My heart breaks to think of that day. The positive attention will invariably turn negative when he loses his childhood charm. We live in an ugly world. I'm certain that he will still receive some smiles from experienced or kind-hearted people, but other people will look away, uncomfortable by his presence. Some will stare and others may say hateful things.

What he will not have the luxury of is anonymity. He will not be unnoticed.

I've experienced that a little in the last few years. We have a large family. If we go somewhere together, people notice. I've learned to plant a smile on my face and let them stare (and count). If everyone looks cute and is well-behaved, I enjoy the extra attention. If we're having a "Beverly Hillbillies" kind of day, not so much.

When I want my anonymity back, I go somewhere alone. If Eon wants his, he'll have no recourse.

And so, I want to snuggle him and hold him close. I want to listen to him giggle as I tickle him and raspberry his fat belly. I want him to stay small and safe, shielded by his cuteness and protected from that day.

Processing

Simeon is 17 months-old and I am just starting to see some of the processing differences in him. Rather than just being delayed or behind on milestones, he takes a little longer than his typical peers to process information. An example of this is his tendency to take a nose dive off the bed if not watched closely. He stands and cruises independently, but he has yet to figure out how to safely get off the bed. I've been providing verbal, visual, and tactile cues for this task for months, but he insists that head first is the only way to fall....and fall he does on occasion. Thankfully, other than a bruise or two, he has escaped these incidences relatively unharmed.

Even with his slower processing, he often surprises me. I've been playing the "where's your nose" game with him for a few weeks, to no avail. He simply looks at me blankly whenever I ask. But, the other day, I asked a different question: "Where's your head?" Immediately, he smiled really big and patted his head. I have no idea where he learned that. Silly mom's just been asking the wrong question all this time! :)

Excellent article on "More"

I found this article to be very helpful (in an abstract sort of way) in understanding intellectual disability.

More

Interested to see what our "more" looks like as Eon gets older. I could relate to much of what she had to say in regards to our other son without intellectual disability. Sometimes our world is difficult to describe to those around us.

Water Baby

Eon had a great time playing in the pool on our vacation last week!