21 Things about Wil that have nothing to do with Down syndrome

Get It Down; 31 for 21


1. He is the rough one in the family, loves to roughhouse with dad and brothers.

2. He loves swimming. . .

3. as long as he is in control. Don't even think about pouring water over his head.

4. He likes to swing and swing high.

5. He laughs with ease.

6. His favorite food is bug macoroni with vegies.

7. He does not like to wear hats.

8. He likes to be tickled.

9. He loves being outside.

10. He likes music and seems to have a propesnsity toward bluergrass, demonstrated by big grins, swinging legs if in the car, or rocking on hands and knees if in the house.

11. He likes books, he is often found with legs spread flipping pages pointing to his favorite images.

12. He has a healthy self-esteem. He often takes time to stop and applaud himself after accomplishing something. anything. :)

13. He has an eye for detail.

14. He can destroy a clean room in under 30 seconds.

15. He is great at putting things away, especially if you are singing the "clean up" song.

16. He is the best "medicine taker" in this house.

17. He likes to climb up the slide.

18. He makes sure all doors in the house are closed at all times.

19. He loves to play with his brothers.

20. He can smell a doctor a mile away, okay maybe that does have something to do with Ds but it is pretty darn smart!

21. He is as handsome as they come!!

Hidden Treasures?

Every so often I must stop what I am doing to conduct an all out search for Wil's glasses. This happens because a quick glance around proves a more thorough search is needed. Timothy is normally responsible for removing Wil's glasses. Wil takes them back, tries without success to put them on, then hides them. Wil has become quite good at hiding things so this has turned into a time for me to find all sorts of interesting items. Like old disgusting milk bottles or rocks. Today I found this. Having a hard time making it out? Hershey kiss candy wrappers. Lots of them. On the floor. Between the sofa and a stack of books. This is in our "sitting" room and it is on the far side of the room so it is not generally visible, unless you are looking for a pair of glasses. As I look under the sofa I find more. In addition to more wrappers I find a stash of unwrapped kisses.

So I clean it up, pull out the six or so whole pieces and put them on the kitchen island. When Luke gets home from school he spots them. I see him eye them. He looks at me. He looks at them. Then he walks over to see if I have placed more candy in the bowl on the buffet. No. He comes back, still quiet. Then he says, "I think Wil is stealing candy." lol!

Wil is just looking at me smiling while he eats lunch, signing more, oblivious that his big brother is trying to make him the scapegoat. Or maybe he's not. I'm pretty sure he is the kind of guy that just might cover for his brother. I can't wait to see how this relationship unfolds.

Get It Down; 31 for 21

3 Croups and a Sinus Infection

So here it is after 8pm and I have not made my Get it Down:31 for 21 post for today. Of course, had I not committed to this challenge I would be lying on the sofa with my Southern Living and a sweet tea right now but the "rule follower" in me is drawn me to the computer.

The reason I am just getting to the computer? I have had three sick kids for a week now. Today we made our fourth trip to the doctor, Wil's second, since last Friday. They have all had croup and obediently taken their steroids (Luke even got two shots to the legs which let me tell ya was not fun!) but Wil, poor Wil, whenever he gets any type of cough or congestion it almost always develops into other types of infection. And that is what we found out today - a sinus infection and two more weeks of antibiotics. It's hard to see the little guy so uncomfortable but we know the drill so hopefully we can get him cleared out soon. For those of you that don't know kids with Down syndrome have smaller airways so they get clogged up pretty easily and therefore when they get colds (or croup in this case) they tend to last longer and often lead to various kinds of infection. So this time of year is tough. And for us this week has been tough and it all seemed to culminate today. Or maybe I just completely ran out of resources today. Either way, it's been a long day, a long week and I am glad it is behind us.

Oh (please inject a hint of sarcasm here) and did I mention that while I was sitting in our den this morning trying to console Wil I looked up and noticed that our ceiling was wet? It is a second story ceiling, nothing above it but attack space sooo. . . could it possibly be that our new house, with a three month old roof is leaking?! It was almost too much for me to consider at the moment but thankfully our warranty department is on the ball and sent someone right over. Turns out it was the A/C, which is housed in the attack, that was backed up and leaking. Problem solved, but now we have to have the drywall guys come in and set up scaffolding in a week or so to repair the ceiling. There is always a convenient time for that with a 1, 2.5, and 4 year old running around! lol

Okay, well, I had some pictures of our sickly brood for you but those aren't uploading for some reason and I am too tired to figure it out.

Quiet moments

I have a great husband. He is kind and generous. He is funny, smart - really smart - great with our boys and very thoughtful. This morning we woke, as is ususal, to the sound of Luke down in the kitchen trying to make his own breakfast. That's his newest thing. Being thoughtful like his dad he doesn't want to wake us so he makes it himself, only problem is he doesn't have the quiet thing down yet. Anyway, James sends me out for some coffee and time to myself with instructions to be home by 10:00. So I did just that. It was really nice.
When I walked in I found our little troublemaker up on the kitchen table rolling the pumpkin to the hardwood floor. I made it over in a few leaps and caught if before it went splat. Luke is sitting next to him coloring like he has no idea there is anything unusual going on. Timothy is crawling around with Wil's glasses in his mouth and James is in the shower. I look around and the place is a mess. The clean dishes have not been emptied from the dishwasher and the sink is full of the mornings mess. The sofa is torn apart and all the cd's are emptied from the armoir drawer. Then James dashes downstairs and out for work. I was left wondering if it was really worth getting out. Ultimately I decide it was. I will grab quiet moments when I can get them and am thankful for a husband who knows I need them and more and more I am learning to embrace the chaos that is our lives.

Get It Down; 31 for 21

Starbucks take me away. . .

As all moms of more than one know, getting out of the house to do just about anything with the kids in tow can be challenging. I find this to be particularly true at times because two of my three cannot be reasoned with and the third is determined to challenge everything that rolls off my tongue. I had one of these days last Thursday.

Luke and Wil desperately needed haircuts. Now, to start with I knew this was not going to be enjoyable because Wil flat out does not like to be touched by hairstylists, doctors, or dentists – or anyone else who appears to have an interest in anything attached to his head. (the fact that he keeps his glasses on is an act of God! There really is no other explanation.) So Timothy and Wil are in the double stroller watching Luke, the big boy get his hair cut. I am playing referee as Timothy cannot resist pulling Wil's hair (remember Wil does not like this). Luke does a fine job with his hair cut with the occasional complaint about stray hairs irritating his skin and Wil clapped proudly for him when he was done. I thought this was a good sign. Maybe Wil was going to cooperate this time. Nope.

Here’s how we do it. I sit first, am drapped, then Wil sits on me. He does not like the drape on me at all and is working feverishly to remove it, then it gets really complicated when he gets his own cape. That is when the screaming starts. My job is to try and hold his arms down while the stylist cuts. This is no easy task. Wil is strong and very determined to push Kelly, the evil woman with the scissors, far away from his head. He breaks free several times giving her a good shove, she backs away, then moves back in and keeps cutting. All the while his head is swinging from side to side, face down, cheeks beet red with big ole crocodile tears rolling. It is really remarkable that Kelly is able to give him such a good cut. She deserves some sort of special honor for this.

Now you should know that while this is going on Timothy is screaming intermittently. Timothy shrieks by the way. It is piercing and when in public we do our best to preempt this to spare all those within earshot. Crackers, I have crackers. “Luke. Luke,” I call out. He is so engrossed in some completely inappropriate show on in the waiting room that he does not hear me so I get louder. He finally alerts and gets some crackers for Timothy. We go through this more times than I would like even though I asked Luke to sit with his brother and keep the crackers coming. But there I was with screaming Wil on my lap, not exactly in a position to get down and talk with Luke about cooperation and the objectification of women. Sigh.

So on the way home I treat myself to a Starbucks. I think I have earned it. Getting them all inside to get my drink is not without difficulty – or comments from others – but it is worth it. On the way home they are happy listening to Buzz Buzz and I get to enjoy my Iced Toffee Nut Iced Coffee. Thanks Leah!

Get It Down:31 for 21!

Did you know before he was born that he had Down syndrome?

This is probably the most frequently asked question we receive concerning Wil. I’m always a bit curious what prompts this question. When it is raised by women in the “babymaking” years I realize I may represent one of their biggest fears - having an “unhealthy” child. When it is raised by medical professionals they almost always assume we did not know before he was born otherwise we would have aborted. And then I assume some people are just genuinely curious about our journey and how we received the news that would change our family in countless ways.

We did not know Wil was carrying that extra 21st chromosome before he was born. The day I “knew” was not due to his karyotype results or a conversation with a geneticist, it came from Wil. He arrived early, 32 weeks, and was in NICU III doing very well. We received great reports, he was breathing room air, his lungs looked good and his hematocrit looked good which was the most immediate concern. We were thrilled. Then the murmurings started, “He has the look,” some of the nurses were saying. They began pointing out some characteristics that are often seen in children with Ds. “But,” they would say, “he doesn’t have the palmer crease or the space between his toes.” Every time we went in those first couple of days they were back and forth. One nurse would say, “nooo. He is just puffy from all the extra fluid, I just don’t see it.” Another would say, “yes, I think he definitely has some characteristics.” The neonatologist was just as uncertain and to my surprise so was the geneticist after a bedside exam. So the karotype was ordered.

In the meantime I did what I do best, for better or worse, I went into “control” mode. I devoured everything I could get my hands on concerning Down syndrome. I didn’t even have a clue what it was, I just had all these false images rolling around in my head. I read and read and read. James and I were overwhelmed with information and we didn’t even know yet whether our second son would be carrying us on this journey.

Back to the day I “knew”. Wil was five days old. James was at home with Luke and my mother drove me to the hospital so we could visit with Wil. His nurse, Elvie, was there and she was our favorite. Being from New Zealand she had a great accent so it made listening to all the medical jargon easier and most importantly she cared so tenderly for Wil. As we stood by Wil’s isolette she was talking with us about his night and her impressions when Wil opened his eyes and looked up at me. It was the first time he really opened his eyes. That’s when I “knew”. Those beautiful crescent shaped eyes met mine and I knew that our lives were going to be very different than we had imagined. Now don’t get me wrong, I wasn’t all sunshine and light with an understanding of the joy Wil would bring us. Actually I walked into the waiting room and fell into a pile of tears until my mother and Elvie came and scooped me up. After that I finally got to hold Wil for the first time and I knew everything was going to be okay.

Get it Down:31 for 21! with 29 to go.

Down Syndrome Awareness Month

This month, hopefully, you will be reading and hearing more about Down syndrome. October is Ds awareness month. I am going to play my part in spreading the word about Down syndrome by participating in Get it Down: 31 for 21, in which many bloggers with ties to the Ds community will be logging in and writing. I am also going to do my best to get some of my fellow bloggers links up in the next few days so that if interested you can check them out too.

So, that's my goal. To share about our lives with Wil over the course of the next (okay, let me stop right here and tell you that my 'x' key does not work too well because a certain 2.5 year old removed it from the computer last week! so if in my haste to type you find I have missed an 'x' where there should be one you will know why) month - how he entered the world, his first weeks and months, his impact, his siblings, and more. Stay tuned. . . One down, 30 to go.

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