Thursday, September 27, 2012

Improved--or maybe just Improv...

My day did make a comeback yesterday. By 3:00, not only had I done the basics (put the groceries away, cleaned up the kitchen, made lunch, cleaned up the kitchen again, etc), but I had spent a long time just playing with Roo (yay!), made a big pot of chili (which I later enjoyed with Fritos), folded two loads of laundry, and put together a delicious baked apple treat for my big kids to have as their after-school snack. AND I did it with a good attitude--Mr. Fantastic even mentioned how happy I sounded when he called. (Should it worry me that he takes notice when I sound happy? Is it that rare?)

And if that weren't enough, I had Monkey's antics to keep me giggling in the afternoon and evening...

Monkey: "If you see me wear a black belt to school tomorrow, that's just because it's my secret agent belt. I wear it when I'm on a secret mission."
Me: "Wow! What's your mission?"
Monkey: "To figure out why so-and-so keeps chasing us on the playground at recess. First he chases me, then he starts chasing my friend."
Me: "Does that bother you?"
Monkey: "It's so much fun!!! Except that I don't really like it."
Me: "Oh. Well, you know, if you don't run, he can't chase you."
Monkey: "Yeah. But I always run."
(And yes, he DID wear his black belt--and sunglasses--to school today so that he could be a secret agent.)

Monkey (after church last night): "Lamb! Guess what! I earned three wood coins tonight. And if I earn FIVE, I get a prize. And if I earn SIX, I have to give one back and THEN I get a prize! So I want to earn SIX!"
Lamb: "What's the prize?"
Monkey: "Are you ready for this????? It's a WOODY BAG! Can you believe it?!?"
Lamb: "What's a Woody Bag?"
Monkey: "I DON'T KNOW!!!!"

Wednesday, September 26, 2012

Change of plans

Here is just a sampling of how my morning has gone so far...
  1. Get up early and actually feel AWAKE! Woo-hoo!
  2. Do my Bible study (which has recently been re-energized after a great session with Priscilla Shirer at the True Woman conference). Yay!
  3. Make a complete (though somewhat hurried) meal plan for the week, including boneless skinless chicken breasts, long-grain rice, salads, healthy snacks, etc. I'm on a roll!
  4. Get to the grocery store and realize that my list is at home.
  5. Come home with bratwurst and Fritos.
Hmmmmm... Somewhere in there, it seems like we had a breakdown of sorts...

Can we call it "mental health food"?

Tuesday, September 18, 2012

Thank You

Oh friends, I just cannot thank you enough. You have shown such wonderful support and given such great suggestions regarding my prayer requests for Roo last week. Thank you, thank you, thank you. For some reason I can't seem to reply to your comments, so I just wanted to give you all a mini-update.

First, his hair. We actually DID get his thyroid checked (along with a few other things). We are supposed to have this bloodwork done annually anyway, so with his hair loss it seemed like a good time. Fortunately everything came back perfect, although that still doesn't give us any answers on his hair loss. Our pediatrician also tested for ringworm, which came back negative. I am trying to start him on a multivitamin, but I haven't had much luck yet. (Have you tried the liquid vitamins? Yuck!) Also, it is the time of year when we go for all of Roo's annual appointments (cardiology, audiology, orthopedics, and maybe optometry), so we will likely add 2 more appointments into the mix--one to a dermatologist, and one to a Down syndrome clinic at our local Children's hospital. We are hopeful to get some answers through one of these avenues!

Second, walking. His progress is slow, but he IS progressing. Going to school has been a good thing for him. He is becoming more comfortable with using his walker. But he is so unbelievably stubborn and strong-willed. I have been completely taken off guard by this. After all, "everyone" knows that people with Down's are sweet and loving and friendly, etc, etc, etc, and I guess in my mind I thought that also meant "compliant." I was so, so wrong. So as with many things, I am not sure how much he lacks in ability and how much he lacks in desire. Oh this boy.

So thank you again. And please keep them coming! I am heading out of town for a few days, but can't wait to talk to you more when I get home!

Monday, September 10, 2012


From time to time, I try to ask myself a few questions: Why do I write? What is the goal of this blog? Is it fulfilling a purpose?

It's hard to compare this little corner of the blogosphere with such giants as Enjoying the Small Things and A Perfect Lily. Kelle and Patti are both amazing women, and they are accomplishing such fantastic things for the DS community. And those are just two of many wonderful blogs and advocating mamas out there, and I have to wonder... why am I here?

But if you are here, then I am advocating to you, and hopefully I'm encouraging you. My goal is to share life--real life--with you. If you're a mama, especially to a little one with DS, I hope that you can be encouraged in both the good and the bad. That's why I am here: For you. For each person who comes here. To serve.

Today, though, I am going to twist it a little bit. Today I am here for me. Or more specifically, for Roo. Goodness, that sounds so serious. Really, all I'm trying to say is that I would like to make use of my network here to ask for a little prayer for my boy.

As God has taken us on this journey with Roo, I have learned so much about taking a deep breath and letting go of comparisons and expectations. That's not to say that I don't *have* expectations of Roo--and my other kiddos--but just to say that I am learning to work and hope while trusting God for the results and not stressing myself out about them as much.

Still, I have been reminded lately of the power--and the necessity--of prayer. If Lamb comes to me 20 years from now and says, "Ever since I was 3 I have been DREAMING of being an Olympic swimmer. I trusted that you would get me the lessons and training I needed for that, but you never did", I would say, "Why didn't you tell me?" Trust is good, but there needs to be two-way communication. (OK, I know that the metaphor is a little shaky because God DOES know our hearts and our desires, but He still wants us to come to Him... Just... go with it, will you?)

So it's time to pray, and now I am selfishly taking this blog over for today and asking you to join me. There are two specific concerns that have been on my mind for the last several weeks, and I am hoping that you will help me storm the gates of heaven on his behalf.

The first is... well, his hair, I guess. Early this summer, Roo's hair started thinning in spots. I didn't pay too much attention to it at first--in fact, I thought I was imagining it--but it gradually became more and more pronounced. Now he has lost so much he looks like he's got a mohawk--it's nice and thick on top, but he's bald almost all the way around the sides. My concern is NOT for his hair, I am not that vain. But what I want to know is WHY. Why is it falling out? I took him to the pediatrician a few weeks ago and got NO help whatsoever. It is possible that it is an auto-immune disease called alopecia--in this case, it doesn't do anything but cause hair loss, which is fine. I'm concerned, though, about Roo's diet--or more specifically, his staunch refusal to eat anything that resembles fruits, vegetables, or meats--and worried that the hair loss could be indicative of a nutrition deficiency. Or maybe it's something else entirely. I don't know. I want to know. I want to fix it. I want to be sure that there is not a bigger issue under the surface.

Second: movement. Specifically, he's not walking yet. He's 30 months old now, and he cruises furniture and stands independently and will even walk behind a push toy; but he has taken only a couple of independent steps (one each time). At this point I think it has more to do with stubbornness than ability, but the fact remains: he's not walking. At his last PT appointment, his (very kind and not-wanting-to-stress-me-out) therapist mentioned that he is reaching the upper limit of the normal range for kids with Down's. I'm trying not to stress about this, I'm really not. But you have no idea what an impact it would have on my life if I could just get this boy to use his feet once in a while.

So there you have it, friends. Will you pray with me? For me? For Roo?


Friday, September 7, 2012

Firsts, part 4: The one you've been waiting for!

From August 28 to September 4, my heart got exhausted. So many firsts, so many smiles and tears. And the biggest emotions came with the "last first"... Roo's first day of school.

As you may know, I fought to keep Roo from going to school last spring. The way that Early Intervention is set up in our county, the therapists come to our home for visits for the first two years. Once a child turns 2, though, he/she is "supposed" to attend a toddler class at our local DD school, and all of the therapy takes place there. This is not a parent/child class--this is kids only, with the teachers, two mornings a week, including lunch.

This was NOT going to happen last spring.

No way was I sending my 18-pound 2-year-old who couldn't walk or talk. No way did he need that interaction with other two-year-olds more than he needed his time with me (especially since we are at church 1-3 times per week). So his therapists continued to journey to our home through the spring and summer.

BUT, I assured them, once school started in the fall... we would take the school path. Roo could attend classes there once my big kids were in school.

It seemed like a good idea last February. On Tuesday, though, I wasn't so sure. Still, the bus was coming. (The bus!!!) And now my 21-pound 2 1/2-year-old who can't walk and knows just a few words was going off to school.

Check out this big boy!!!

Hanging out with Daddy...

Another first day, another family photo...

I love this shot of Monkey with Nana (my mom)...

Headed to the bus stop! (We live on a small, private road that is too small for busses, so we have to walk out to the "main road" for the kiddos to catch the bus.) Daddy was headed right back to work after the bus came (or so I thought--more on that later), so he drove out to the stop.

Look at that face!

Nana & Papa (my parents) came for every "first day", but this was the first time I got a picture of them all together...

Gram (my mother-in-law) came for all the firsts too! Again, this was my first time grabbing a photo of her with all the kiddos, though...

Here it comes... oh, boy...

Technically, I can just hand him off to the aide at the door, but she was nice enough to let me come on and put him in the car seat.

Look at that big boy, heading off without me!
Yes, if you are wondering, I cried. A lot. And then I cried some more. And then I moved on with my morning. And then I cried some more. For months I have been looking forward to having some time to myself to get things done... but the house just seemed so empty with them all gone!
But the real issue for me was the communication. When my big kids get home from school, the first thing we do is sit down at the counter, have a snack, and talk about their day. As I was loading Roo into the car seat, I realized... he can't tell me about his day. This sucks.
And about the time that I finally got it together and started cleaning the kitchen, the door opened. Mr. Fantastic earned his name once again. He came in with this:

He's a keeper, I tell ya!
And as for the communication, I was touched to find a notebook in Roo's bag with information about his day AND ten pictures of him from the morning! What an unexpected blessing to get a glimpse into his day! We may survive this after all. ;-)
And OK, I DID enjoy the quiet after a while. I just have to remember that on Monday morning as I put him on the bus again.

Firsts, part 3: KINDERGARTEN!

Aaaaaaahhhh, it feels good to be sitting at a "real" computer with a "real" keyboard! Hopefully this time I can give you a little more commentary--not that the adorable photos of my children aren't enough. ;-)

So Lamb started school last Tuesday, then Monkey lost his first tooth that night. (By the way, he got a $2 bill. I hear that our Tooth Fairy is cheap--the national average is $3 per tooth, with some parents giving $20 or more for the first one! Monkey seemed perfectly happy with his $2 bill.) On Wednesday I enjoyed a nice day with my boys, going out to lunch, running some errands, and just hanging out.

Then on Thursday... KINDERGARTEN!!!

Monkey's breakfast request was a little more complicated than Lamb's: homemade waffles with whipped cream, blackberries, and raspberries. Whew!

Look how excited he is!


Instead of saying "cheese", he kept shouting, "FIRST DAY OF KINDERGARTEN!" every time we took a picture! :-)

This time our family photo was less than picture perfect for the opposite reason. Last time it was because he was grumpy, this time it was because he was so darn excited! I love it.

Waiting for the bus...
And this is when I lost it. Look at them holding hands! How can a mom not cry at that?!?

Wednesday, September 5, 2012

Firsts, Part 2: same day, different story

I'm sitting at church, my kiddos are in their Wednesday night programs, I'm all settled into a comfy couch, iPad out, ready to blog... And I realized I left the wireless keyboard sitting at home. Since it is hugely difficult to use blogger with the on-screen keyboard, I'll have to keep it brief tonight. :-(

SOOOOO... On to the next first, if that makes any sense...

After we got Lamb off to school, I took Monkey in for his kindergarten assessment, which ended just in time for us to grab lunch with Lamb--yay! The rest of the day went on as normal, until just before bedtime. I was giving Lamb her piano lesson and Mr. Fantastic was playing Go Fish with Monkey, when I heard, "It fell out! It fell out!!!" And sure enough, Monkey came running over, holding his tooth in his hand! He has been wiggling and wiggling that tooth for weeks--and truth be told, I think he was hoping it would fall out at school, but he was still quite excited. :-)

Tuesday, September 4, 2012

Firsts, part 1

I have hundreds of photos I have been dying to share with you all, but... Well, let's just say that when I look back on 2012, the two words that come to mind will be "technical difficulties." In the past year I have dropped my iPhone and shattered the screen, had major issues with my laptop (which eventually died and is awaiting its time to be shipped to Sony to see if they can do anything for me...), and now our home PC is dead too. And it waited just long enough for me to load all 600 of our vacation photos onto it before it stopped working. Thanks for that.

So... I have no vacation photos to share right now, and I'm not sure when I will. BUT it has been a huge week of firsts here at the zoo, and I wanted to share those. (I had to go to my parents' house, upload the photos there, then upload them to picasa, and now I can finally share them with you! If only I hadn't deleted my vacation photos off of my SD card!)

ANYWAY, our first first :-) was for Lamb, who started 2nd grade last Tuesday. I can't believe she is that old!!!

Although she loves school, she wasn't too thrilled about having to get up. Roo decided to help get her out of bed.

When that failed, we had to call in for back-up: Daddy and the puppy! We'll get this girl going one way or another!

Lamb's breakfast request: Cinnamon rolls, kiwi, blackberries, and raspberries. :-)

Check out this beautiful 7-year-old!

Daddy had to go to the office after he woke her up, but  of course he came to see her get on the bus!

This is truly the best family photo we got that morning. Monkey woke up on the wrong side of the bed and was NOT planning to cooperate with anything we asked of him.

Time for the bus! This part gets a LITTLE easier every year.

Well, friends, I had planned to share ALL of the firsts in this one post, but working with Blogger on the iPad is turning out to be a bit of a pain. I think I'll post this for now, and give you the next first tomorrow. Enjoy!