Monday, November 28, 2011

Vacation! (Part 1)

Good morning! It's been another little bloggy break for me, but I have a good reason. Let me start from the beginning...

As you may remember, Mr. Fantastic and I went away for the weekend at the beginning of the month, just the two of us. It was a wonderful weekend, which culminated in our rushing out of the movie theater mid-movie to head to the ER back home, where my mother-in-law had taken Roo because he was choking. WELL, during the movie (spoiler alert--if you have plans to watch "Tower Heist", this will give away part of the plot... but not the ending, because I haven't seen that part...) a robbery takes place in New York City during the Macy's Thanksgiving Day Parade. My hubby leaned over to me and whispered, "We should go to that sometime." (This was literally about 30 seconds before we got the phone call, because we actually had to leave during that scene, also known as the-climax-of-the-movie. ;-) )

Well, about a week later (which, for those of you who are keeping track, was less than two weeks before Thanksgiving), he came home from work and said, "I have a new plan! I think we should go to New York City for Thanksgiving!"

I wish I could say I responded with enthusiasm. I can't. You see, there were a few factors working against me. For one, I am a planner, and two weeks before a major holiday, I already have it planned. I don't like to change plans. Second, I am sentimental and love traditions--and there is no way in which a last-minute trip to New York City is "traditional" for me. And third, we have THREE small children, and the idea of fighting for sidewalk space with 3.5 million people (yes, that's how many people watch the parade each year) was NOT appealing to me.

But I tried to be as supportive as I could in a this-ain't-never-gonna-happen kind of way.

So guess what happened next...? I got outvoted.

We alternate our Thanksgivings, one year with my family, one year with my husband's. On his family's years, it is mainly his mom that we coordinate with, and we go along with whatever she would like to do for the holiday. This was her year, and she and Mr. Fantastic were both very much on-board with the NYC thing. I decided to wait and see if we could actually find a place to stay that was close to the parade site AND within our budget, which I figured would never happen.

It did.

Now, to be fair, I did NOT go into this with a bad attitude. I expressed my concerns, I whined to a friend, and then I turned it over to God and said, "You're going to have to be in charge of this." And I decided that if we were going to go, I was going to go with a great attitude and have as much fun as possible. So it's not like they dragged me kicking and screaming.

ANYWAY, once we knew for sure we were going, there was tons to be done in a short time. Since I normally decorate for Christmas right after Thanksgiving, I decided that my decorating HAD to be done before we left. So I cleaned the house, put away all of my fall stuff (some of which was still waiting to be put out!), and decorated the entire house for Christmas, along with doing all of the normal household stuff, AND packing myself and all three kids for the trip. It was a crazy 7-10 days before we left!!!

But everything got done (well, almost everything), and we left first thing (OK, not FIRST thing... but 9 AM) on Wednesday morning. And can I tell you something? It was FAB.U.LOUS. Amazing. Fantasting. A HUGE success.

We got there Wednesdsay around 5:30, and then had a minor mix-up with the condo we had rented, so it was around 7:00 before we got in and settled. Our place was small compared to what we are used to here in Ohio, but we were very thankful to have 3 bedrooms and 1.5 bathrooms in downtown NYC. We basically just threw our stuff down, then took off to grab some dinner and see the parade balloon inflation.

The inflation event goes from 3 PM to 10 PM the day before the parade. By the time we got there it was after 9:00, and the line was HUGE. We were only able to see about a third of the balloons before it was over, but it was cool to see them up close.



Lamb & Monkey waiting to see the balloons
 

Buzz Lightyear was huge!

The inflation event was fun, but if I had to do it over again, I would skip it. The kids were out until around 11 PM, and then we had to wake them up early the next morning to get to the parade.

Luckily, Mr. Fantastic and his mom volunteered to get up REALLY early and be at the parade route with our chairs and blankets at 6:00 AM. They left everything set up and came back to help me get the kids ready and loaded up and head back to the route. We weren't close enough to walk easily, which was a little disappointing, but the subway was only 2 blocks from our condo. By the time we got back down there, it was a MAD HOUSE. I was really starting to forget about my resolution to have a good attitude when I realized how hard it was going to be to get back to our seats, especially when the road we needed to walk down was closed off and guarded by police...! But then a very nice officer listened to my husband explain the situation, and he let us past the blockade to go to our seats--which we found were still set up and waiting for us, even though people were PACKED along the street for as far as you could see!

We weren't right in the front (even though they had gotten there at 6 AM!), but there was only one row of people in front of us, and they were VERY nice to let our kids go in front of them to be able to see better. (Don't worry, we could still see them the whole time.) Once we got to our seats, it was only about 15 minutes before the parade began! It was SO MUCH FUN! Oh my goodness, it was great. I'm still getting my pictures sorted out so I'm not going to post a ton, but here are a couple...



Roo is ready for some fun!


Buzz looks much better "in action"


Scotty McCreery, for you American Idol fans :-)


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Spiderman was the 2nd biggest hit of the day, next to...

The big guy himself! When Monkey saw him coming down the street, he started yelling, "He's real! He's real! Santa is here--it's really HIM!" :-)
 And you know what? I'm going to have to stop here for now. Roo graciously gave me a few extra hours to my day by waking me up at 3:45 this morning (and let's not forget to give some of the credit to Mr. Fantastic as well, whose snoring kept me awake even after I got Roo back to sleep), but I have used up all that time now, blogging, catching up on e-mails, and checking out some Cyber Monday deals; and now I must get back to reality. Vacation Part 2 to follow tomorrow!

Friday, November 18, 2011

Catching you up...

So it's been a little crazy here at the zoo, which I've come to realize is something called "life in our house." It is always crazy, and I don't really see any end in sight. So I probably need to stop thinking of it as being crazy and just learn to take a deep breath and go with it.

I feel like I have been a little lax in my posting lately. Honestly, there has just been so much going on! I don't even know where to start...!

First of all, Mr. Fantastic has been home more, which is heavenly. He typically works late one night per week, every Saturday, and has commitments another 1-2 nights per week. But he took off two weekends ago to go away for our couples' weekend, then took off this whole last weekend to work on projects around the house. And THEN he took off the whole day yesterday to work around the house, too! It has been SO NICE to get to see him so much--not to mention getting projects done!!!

And then there are the projects themselves. We are finally making some great progress on the kids' rooms! Lamb's room is cleaned and painted and getting decorated--I even found a super-cute desk for her on Craigslist yesterday for $20! In the meantime, all of Roo's stuff that used to be in that room is spread out all over our second floor. I am anxious to get it all put back together, and even more anxious when I think about what it is going to be like when we have to find room for all of Roo's stuff AND all of Monkey's stuff when it's time to do the boys' room...!

Also, I haven't really talked about this on here, but I have been given the tremendous opportunity to start and lead a new moms' ministry at our church. We will be starting weekly meetings in January, but we decided to have a few "kick off" events this fall. Our first was last week, and it was GREAT! Wow, what a fantastic turnout! We had told our kids' ministry to expect about 20 kids in childcare, and we ended up with 47!!! We have our second event in a few weeks, and I think we will have even more for that. It is exciting and amazing and fun, and lots of work. :-) Fortunately, I have a fantastic team that I am working with, and God has really blessed this ministry all along. But I still have LOTS to do, and when I stop and think about it for too long, my heart starts to palpitate a little...

On another note, I got a phone call last week from the school nurse. She said she was going to do routine vision screenings on the first-graders, and Lamb's teacher asked her to start with Lamb. Apparently Lamb had been having a hard time seeing the board, and she called to tell me that Lamb had done "very poorly" on the screening. Very poorly! How could she do "very poorly" when she hadn't even mentioned this to me?!? I was able to get her an appointment for that afternoon, and sure enough--her vision is 20/80 in both eyes! Geesh. But can I tell you, I have never seen a child THIS EXCITED for glasses! She was going crazy waiting for them, and was ecstatic when they arrived 5 days early. Here she is with her new accessory:



She also has a pink pair, which I think are even cuter, but they both look nice on her. And the whole way home on the night she got them, she kept saying, "Mommy! Do you see how big that truck is? Mommy! Did you see the words on that truck? Mommy! Look at that car!" I think she hadn't been able to see the other cars before--I had no idea!

And you know, there are so many bloggers out there who have every bit this much going on, and yet they write thoughtful, deep, daily posts... How do they manage that?!? I do not seem to be one of those people. Today, however, I managed to post... AND shower. Victory.

Thursday, November 17, 2011

Thankfulness

I know, it's cheesy to post about Thankfulness the week before Thanksgiving. Would it make you feel better to know that this post wasn't really inspired by Thanksgiving, but just by the recent events in my life? Well, either way, today's post is about thankfulness, so just go with it.

A few months ago, I heard an interview on Family Life Today (I'm an addict avid listener of this show--I think Mr. Fantastic must get a little bit tired of hearing me talk about it...) with Barbara Rainey, whose husband is the president of Family Life. She is in the process of writing a series of family devotional books about different virtues, and has so far published Growing Together in Courage and Growing Together in Gratitude. (Blogger has changed their interface, so I no longer know how to post the little pictures of the books with the price and stuff right in my posts...) I thoroughly enjoyed hearing about the books and wanted to check them out. And it just so happens that the Weekend to Remember that Mr. Fantastic and I recently enjoyed was put on by Family Life and had a fabulous "resource center." (This is a dangerous spot for me to be seen, because I love resources. I could have bought out that place!) And it just so happens that they had the Gratitude book in their resource center--which I'm sure had nothing to do with the fact that Thanksgiving was just weeks away. ;-) And it just so happens that I walked up to the register with the Gratitude book in my hands... along with a few others... and gave them money... and they let me leave with it! Go figure!

So Mr. Fantastic and I are in the process of reading the book with the kiddos this month, and it is very worthwhile. It is a collection of 7 real-life stories of people who showed thankfulness in a variety of situations and circumstances. It may be just a teeny bit over my kids' heads--the first story is about Corrie ten Boom and her sister, who were in a Nazi concentration camp--but it has still been a good thing for them. And the overarching theme of the book has been: Give thanks in all circumstances. Good lesson. One that I would definitely like my kids to learn. Right?

It's dangerous to try to teach your kids a lesson, friends. Often that lesson finds its way home to the heart of the momma...

Which brings me to earlier this week. As I have mentioned, all three kids are sharing a room while we redecorate, and Roo is a big fan of being in the same room with the big kids, but has not been doing great with sleeping since we moved him. Specifically, in the last 11 days since we moved him into their room, he has been up between 5:00 and 5:30 EVERY MORNING (except the first morning, when he slept all the way until 6:00). Let me just tell you... I just do not comprehend why anyone would chose to get up that early. Ever. OK, maybe on Black Friday. But that's it.

Anyway, after a few days, I had had enough of the early wake-up call. I was tired. I was frustrated. I was just plain angry. But I didn't want to be angry. I wanted to be happy. I took deep breaths. I thought positive thoughts. I looked forward to naptime. But I still couldn't quite shake my "grumblies."

On that particular morning, my attempts to get Roo back to sleep had also roused his sister. Fantastic. Thanks, Buddy. Now I'm doubly frustrated. And I'm rethinking our "remodel", which involves putting Roo in with Monkey and giving Lamb her own room. And I'm rethinking my decision to have children.

OK, maybe it wasn't quite that severe. Maybe.

But I was determined to beat this bad mood. And as I took Lamb and Roo down to get breakfast, I spotted the book. Growing Together in Gratitude. "Give thanks in all circumstances." Corrie and Betsy Ten Boom found a way to give thanks for fleas in their barracks. Another man found several ways to be thankful for a mugging. Surely I could be thankful for sleep deprivation a child who wakes up early.

So I decided to make it into a game. "Lamb, what is something that you're thankful for?"

"God and Jesus."

"That's awesome, Honey. Let's see... I'm thankful... that we have plenty to eat," I said as I looked at the assortment of cereal boxes in the pantry. "What else? It doesn't have to be anything big."

I don't remember what she answered that time, but we went back and forth for a while. And you know what? It really worked. I told her I was thankful that she woke up early, because I always feel so guilty when I have to wake her up for school--I want her to be able to sleep if she needs sleep--and because I got to spend a little extra time with her. It was good to gain a little perspective.

And then she said, "I'm thankful for Down syndrome."

Pause. "You're thankful for it? Why is that, Honey?"

"Well, because that's the way God made Roo, so that's how He wanted him to be. And also, if it takes him longer to learn things, that means we get to spend more time teaching him things, and I like teaching him."

I love it.

Exactly one year ago today, I wrote a post called Thankfulness & Down Syndrome. I was healing, I was seeing that things were going to be OK--but I stopped short of saying I was actually thankful for Down's. I couldn't quite get there.

Today, thanks in part to my beautiful 6-year-old girl and her love for her baby brother, I can say it.

I'm thankful for Down syndrome. It is a blessing. It is a blessing that has come "through raindrops", as Laura Story says in her song "Blessings" (which, I'm pretty sure, was written about my life over the past year--I've never actually met her, so I can't confirm that, but really, how could it not be?). But it is absolutely a blessing.

I'm thankful for Down syndrome. What a difference a year makes.

I'm thankful for Down syndrome.

Happy Thanksgiving.

Thursday, November 10, 2011

Of bedrooms & babies

Last year for Christmas, our kids' "big gift" was redoing their bedrooms. When Roo was born, we moved Monkey into Lamb's room (which is decidedly girly) and gave Roo the nursery; and we decided to go ahead and move the boys together, give Lamb her own space, and redecorate both rooms.

Yes, that was eleven months ago. It's not done yet.

So finally this week we are moving ahead with the plans. Roo's room is cleared out, and last night Mr. Fantastic patched the holes in the drywall. Yep, we're going lightning fast now, folks!

All of this means that our three children are now all sleeping in one room. On Monday I tore down the crib, moved it into the big kids' room, and put it back together. It was no small feat, and I'm pretty darn proud of myself.

Meanwhile, Roo thinks that sharing a room with his siblings is the coolest thing ever. He does not, however, feel the need to sleep in there. The first night, he kept everybody up until 9:00. (Bedtime for Roo is 7:00, and 7:30 for Lamb and Monkey.) The second night he went to sleep fine, but woke everyone up at 6:00 AM--and by everyone, I mean our entire family. And this morning I am sitting in the darkness of my living room, pouting and typing while he hops all over and has a blast. He woke me up at 5:10.

Until Monday, if Roo had gotten up at 5:10 (happy, not crying), I would have given him his binky, rubbed his back, and left the room. I would have gone back to my room, crawled back in bed, and turned off the monitor. He wouldn't have gone right back to sleep, but he would have eventually. And if he didn't, he would be safe in his crib, and I would have gotten some more rest--and I could have heard if he had started to get upset, which he wouldn't have.

But now that's all changed. Now if I just let him stay in his crib, he'll wake up everyone in the process. And I'm being a great big giant baby about the whole thing.

I see on Facebook when my friends get awakened bright and early by their kiddos. They're not happy, but they make the best of it. So why am I so darn frustrated? I'm worried, for one thing, that this is going to become his new "thing", and I do NOT want 5 AM to be a "thing". But seriously? Between me and Roo, one of us is going to have to act like a grown-up here, and I'm pretty sure it's going to be me.

I'm realizing more and more that I can be like a toddler with God when things don't go my way. Somewhere inside of me, I believe that I will get my way if I throw a big enough fit. That's what I did when we found out that Roo has Down's--I was angry and pouty for MONTHS, trying to "prove" to God that He was wrong to allow this in our lives. And now I'm doing it over an early wake-up time. The problem is... it doesn't actually accomplish anything. My kids' tantrums don't make me want to give them what they want, and I'm pretty sure it's not going to work for me either. So it's probably time to get over myself and move on, right?

It's sort of a vicious cycle... I get mad about the situation... I realize how silly is it and get mad at myself for BEING mad about the situation... and then I get mad that I'm in the situation all over again.

Someone please tell me I'm not the only one who does dumb stuff like this...!

By the way, I read somewhere that, if you're upset over something that you know is not a big deal, verbalizing your feelings can help diffuse the situation. So I looked at Roo and said out loud, "I'm angry at you. I'm angry because you woke up two hours early, and I want you to sleep longer." And that definitely worked--hearing it out loud helped to put things in perspective.

So tell me, what pushes your buttons but shouldn't? Help me out here, friends, so I don't feel like the only kook who gets upset over the little things.

And now that I have sufficiently vented, I think it's time to turn on some lights and face the day. The dishes aren't going to do themselves--I know, I've tested that theory.

Tuesday, November 8, 2011

Making connections, spreading the word...

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.  --2 Corinthians 1:3-4

More and more, my prayer lately has been that God will use the journey He has put before me to reach others. I don't want to just say, "Wow, thank you Lord for providing for me" and keep it to myself--I want to show others the love and support and encouragement I have been shown along the way.

Today, friends, I have a big bloggy announcement--a chance for me to reach other moms with the story of Roo!

Long story short... I have been given the chance to do some guest blogging on MOPS International's Momology blog! They already have a fantastic panel of mommies who are blogging for them, but none of them have children with special needs. I know that I can often feel alone when I am surrounded by moms who only have "typical" children, so I am thrilled to be able to connect with other moms like me who find themselves on a unique journey.

My first guest post is up today, and you can find it here. It is likely one that you have seen before, either at Zehlahlum Family or here--my post titled Different. It seemed like a good way to introduce our family to a new group of readers. But I have another post coming soon, and hopefully more after that.

BUT I need your help. I am much more likely to get to continue this relationship with MOPS if there is good response--which, in blog terms, means lots of comments. So will you please go over to the Momology blog and leave a few nice words for me? Thank you so much!

God is using Roo, one tiny baby boy, in mighty ways.

And speaking of Roo, I think I should go play with him instead of just typing about him. Talk to you soon.

Monday, November 7, 2011

A Weekend to Remember...!

It is November, a month in which we give thanks, and tonight I am thankful for my husband.

We had a fantastic chance over the past three days to reconnect and focus on us a little, thanks to my mother-in-law and Family Life. I've been needing just a little break from the zoo animals lately, and in August, Family Life ran a half-price special on their Weekend to Remember marriage getaways. Fortunately, my hubby knew how much I needed to get away, and he told me to grab the deal. And my wonderful mother-in-law offered to keep the kiddos for the entire weekend.

It was an awesome time of refreshing our marriage, spending time together, and relearning things that have gotten a little dull over the last 10 years... like the fact that marriages work better when you put your spouse's needs ahead of your own. Who knew? ;-)

Seriously, though, it was exactly what we needed. We had long conversations with no interruptions about Hot Wheels, Barbies, knock-knock jokes, or play-by-plays of who is annoying whom in the back seat. We went on a date to a fancy restaurant. We went for a long walk on a trail near our hotel. We were uplifted, encouraged, and instructed at the conference. We laughed and cried and just had a great time.

(Just a little aside: If you are married and have a chance to attend Family Life's Weekend to Remember, I highly recommend it. Whether you are engaged, newly married, just need a tune-up, or you feel like your marriage is on its last legs--this is worthwhile. I don't know the specifics of scholarship options, but it is definitely something that they talked about, so if cost is a factor, contact them and ask. I know that they provide scholarships for military families, pastors' families, etc, but I don't know what all is available.)

During the closing session, the speakers warned us that the weekend was a bubble--not reality. But they assured us that reality would find us soon after the conference ended. Couples may get in a fight on the way home or run out of gas or... who knows.

Darn that "who knows."

Before we left on Friday, my mother-in-law had encouraged us to stay a couple of extra days. She told us she could get the kids where they needed to go, we didn't need to worry. I knew that I needed to be home by today, because I have an event tomorrow (which I haven't even talked about here, but I'll fill you in on it soon), but we thought about staying at least one extra night. We decided to go ahead and check out of our hotel, though, go to lunch and see a movie, and then we would try Priceline to see if we could get something cheap.

We didn't make it that far.

As we were sitting in the movie theater, 3/4 of the way through the film, literally at the climax where you're sitting at the edge of your seat... Mr. Fantastic's phone rang. It was his mom. I have no idea what made him decide to answer the call while he was still sitting in the movie theater, but he said something just didn't feel right.

His mom was pretty panicked. Roo was coughing and crying hysterically, and she was afraid he had found soomething on the floor and swallowed it. She couldn't see anything in his mouth, but she couldn't settle him down either. (We were, by the way, out of the theater at this point.) We had her try a couple of things, but ultimately told her to take him to the ER. I called our neighbors and asked if the big kids could come over, and she dropped them off and got Roo to the hospital.

Let me tell you, that was one LOOOOONG 1.5 hour drive home. But you know... I can't say I was nonchalant about it, but very shortly after we started driving and I was all upset, I heard God's still small voice. Katy, I've got this. You know that I am in control. It will be a lot less painful if you rest in my arms and trust Me NOW, rather than fighting me until it's all over and then realizing that you should have trusted me. I've got this. I've got a plan for it. Trust Me. And that did it. He was right (and He usually is)--I needed to trust Him. Whether it was an overreaction or whether it ended terribly, God was carrying out His plan, and I needed to rest in that.

That sounds rather melodramatic, doesn't it? I know that you're all thinking that this isn't that big of a deal--and as it turns out, everything is fine--but ever since Down syndrome came into our lives, my perspective has shifted. I used to think that bad things wouldn't happen to us. I used to think that God would at least somehow prepare you for bad news, so it wouldn't knock you off your feet when it happened. But after last June, I've realized that you never know what's waiting around the corner. And so little things quickly turn into what ifs. But not this time--it was just seconds after my mind started to race that God reminded me to trust Him, to rest in Him, to stop trying to take control from Him, because it was futile anyway. He was in control, no matter what I let my imagination dream up.

So after our whole big adventure, we went straight to the hospital and found an empty ER room where Roo was supposed to be. Turns out he was getting an X-ray. They had already made sure that nothing was blocking his airway, and then sent him to X-ray to see if they could spot anything in his throat or lungs. We waited for about 25 minutes before my mother-in-law came walking down the hall, carrying my baby boy. It had been a little over 2 hours since she had called us, and he was much calmer (he had actually fallen asleep at one point), but was still crying (mainly because he had been asleep until they laid him on the cold X-ray table!) and seemed to be trying to catch his breath.

But don't you worry, this Mama Bear wasted NO TIME grabbing that baby and snuggling him! And he wouldn't go to anyone else once I got him! Oh, let me tell you, that felt good. I sang and sang, and Daddy did Pattycake and played with him, and we finally got him to settle down--and even to SMILE and LAUGH a little. I realized that he had been short of breath when I first saw him mainly because of the large amount of crying he had done--and I'm guessing he also had a sore throat from whatever he swallowed.

We talked to the doctor, and basically... we just have to wait it out. It doesn't appear that there is anything in his lungs, although not everything shows up on X-ray. We have to keep an eye on him, and if he gets a fever or persistent cough or just is acting sick, we should call our doctor and mention the incident.

So yeah, reality found us after our little romantic bubble. But we're home and fine--and this morning, he's been hopping around as happy as can be. :-)

Definitely "A Weekend to Remember"!

Monday, October 31, 2011

Supposed to be


Good morning. As October draws to a close, I wanted to celebrate Down Syndrome Awareness Month just one more time. This is a re-post, but it is one that it on my heart regularly. I hope you enjoy it--whether you saw it the first time around or not.  :-)

I'm up early. Roo woke me up at 4:45, and I never got back to sleep. I actually kind of enjoy the early mornings—I'm not a morning person by nature, but when forced into it by my baby boy, I like having some time to myself when the rest of the house is quiet, getting a head start on the day, and being fully awake and happy when my kiddos are up for the day. I would probably enjoy it more if I hadn't stayed up until 11:00 last night… I am an 8-hours-of-sleep-minimum kind of girl… but, well, there's nothing to be done about that now.

But this morning I woke up with a familiar grumbling in my head: This isn't how it's supposed to be. Not the 4:45 wake-up call—I would rather he slept through the night (We had a good run for a while, but now we're back to being up 1-2 times per night.), but I can deal with that. Not the short amount of sleep overall—that's my own stupid fault for staying up so late. No, I was just thinking of all the… stuff. Yesterday was Roo's semi-annual IFSP meeting. This is where I sit down with our Early Intervention Specialist and our Service Coordinator (I'm not even going to pretend that I can explain to you exactly what those two women do, so just go with it.) and we go over all of the notes from our various therapists and set goals for Roo. Goals for my 9-month-old. Things that he needs to work on. Seriously? Sigh. This isn't how it's supposed to be. Over the next few days I'm going to be spending time with some people who are likely to have a lot of questions about Roo and Down syndrome, and I am very happy to answer them and so glad that they care. But I wish I weren't the one answering those questions. This isn't how it's supposed to be. On Thursday I'm going to another conference about Down syndrome and development and how to help my child learn. I didn't have to work this darn hard at helping my other kids learn to sit, crawl, play, talk… This isn't how it's supposed to be.

But here's the thing: Yes, it is. This is exactly how it's supposed to be. This may not be what I had planned, what I envisioned for my life or my child's life; but it is what God had planned. From the beginning. This is how it's supposed to be. And I can tell you from experience, whatever God has planned is way better than any plans I try to make on my own apart from Him.

I've been reading Choosing to See by Mary Beth Chapman. I highly recommend it—what an amazing story God has given this family. And I don't have the book in front of me, so I can't give you an exact quote… but at the funeral for her 5-year-old daughter, her teenage son shared that God is an artist, and we are too close to the canvas to be able to make sense of His artwork. But someday we'll be able to stand back—way back—and see what He was doing, how it all comes together to make the perfect masterpiece. I love that image.

This is how it's supposed to be. This is all part of God's masterpiece.

So I brush my grumbling thought aside—again. It's not the first time I've had to do it, and it won't be the last. But I do it. I push it away, and I claim the truth that I know:

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." –Jeremiah 29:11

Friday, October 28, 2011

...And the Same

I grew up with someone whose parents openly had a favorite child--her. She was from a large-ish family, but it was no secret that she was the golden child as far as both of her parents were concerned. They openly admitted it. Great for her, maybe not so great for her siblings, eh?

Over the past year or so, I have heard a lot of remarks regarding how parents of kids with Down syndrome must love their extra-chromosome-sporting child. Some people feel sorry for the siblings: "The other children must grow to resent their sibling who gets so much love and attention." Others feel sorry for the child with Down's: "Even with their limited capacity to understand, they must realize that their parents just can't love them as much as the other kids." And others are just plain mean and stupid: "Isn't having a kid with Down's about the same as having a pet? I mean, they're cute and all, but can they really do anything useful?" (Yes, that is something that was actually said; no, it was not said to me. You haven't heard reports of any severe beatings in my area, have you? Believe me, I don't have that kind of self-control.)

At the bottom of all this is the question that is really on everyone's mind: "Can you really love all of your kids the same?"

The answer is yes, I do.

And no, I don't.

Let me explain. You see, my love for my children--all three of them--goes through two filters, for lack of a better word. First, the filter of who I am; second, the filter of who they are.

I am their mother--they are my children. All of them. Roo is not my-child-with-Down-syndrome. He is my son. I finally understand why my parents could say that they love me the same as my brothers even though I was not biologically theirs--not that I ever doubted it, but now I truly get it. I have three children. I love them the same.

And then again, I don't. Because the second filter is where their individual personalities and needs come in, and if I just love them all "the same" when I look through this filter, I'm not doing them justice. I don't look at Roo as my child with Down syndrome, but I am acutely aware at every minute that he has Down's and thinking about how every single thing will affect or be affected by that. I am more intentional with how I talk to him and play with him. I am more careful about who watches him. I am more knowledgable about his future schooling.

Lamb and Monkey have their own filters too. When I parent Lamb, I am aware that she is easily frustrated, and that she is very much like me and knows how to push my buttons. I know that her primary love language is gifts, followed closely by words of affirmation. I know that she is driven to succeed, that she wants the approval of her daddy more than just about anything, and that relationships are very important to her.

And Monkey, he loves to entertain. He likes to joke, but not to tease--or be teased. If I yell at him, he blows me off; if I speak kindly but sternly, he breaks down into sobs, even over the smallest things. He wants to be a "big kid" like his sister and cousins (who are all older) so badly it's almost tangible. He absolutely LOVES to be a gentleman, doing things like holding the door open for people or doing favors. His primary love language is quality time, which is a hard one for me--which is ironic, because it is also Mr. Fantastic's primary love language. He wears his heart on his sleeve, and EVERYBODY knows how he's feeling, because good or bad... it's LOUD.

All of these things are constantly running through my mind as I parent, interact with, and love my children. And with very few exceptions, most of them are not set in stone. They are all still pretty little in the grand scheme of things, and their likes & dislikes, their personalities, the things that motivate them--they're all growing and changing with the kids. And I have to be aware of that too.

My love for them is the same. The same amount, the same fierceness, the same loyalty. I would fight for any one of them. I would die for any one of them.

My love for them is different. It has to be. They are three different people. And if I ignored that and tried to just love and parent and treat them all exactly the same... would that really be loving them at all?

Thursday, October 27, 2011

Different...

This is my guest post from Jamey's blog, Zehlahlum Family, earlier this month. I wanted to share it again here because I have another post coming that I think goes well with this one... and because Down Syndrome Awareness Month is almost over, and I have spent much of the month tending to sick kids and digging myself out of an endless laundry pit. If you have been around for a while, you know much of the "back story" already, but I still wanted to share this "theme" with you again...

On one wall of my house, I have a “photo collection” of each of my kids—you know, the ones with multiple pictures that the photography studios talk brainless fools devoted parents such as myself into buying. The ones of my boys are each from their one-year “photo shoot” (I hate that term. It sounds so vain and uppity, but what else do you call it?), and as I walked past them the other day I looked up and caught my breath.


I can see it, I thought. He looks different.

It was last June when my youngest, almost three months old at the time, was diagnosed with Down syndrome. Although Roo had been born three weeks early, spent a week in Children’s Hospital for a list of issues that came up after his birth, and been to several well-child visits, not one single person had ever suspected or mentioned the term Down syndrome—not even our pediatrician, who had sent us to the geneticist. She had simply asked us to get some blood tests run to “rule out any issues.” That was the moment, as Jamey mentioned in an earlier post, where “the world falls away beneath your feet.” I didn’t understand how the earth could keep spinning, how people could just keep going about their business. Didn’t they understand what had just happened to us?

The denial set in quickly, and my first act was to take the book that our very kind genetic counselor had handed us—the one with the cute little toddler with Down’s on the cover—and turn it face down. I couldn’t look at that little boy’s face and see my child.

We went home and told our parents, who were all there waiting for us. We sat on the couch and cried, and in desperation I looked up to the ceiling. As my eyes turned skyward, they passed over our most recent family photos, taken before Roo was born. I looked at them and tried to imagine us, 10 years down the road, our little family… with this child that stood out standing right in the middle. I couldn’t make it make sense.

Please don’t think that I am so shallow that my main concern was how my baby was going to look. It wasn’t that. It was what it represented. He would be different. He would stand out. He would be misunderstood. It would be hard. The family picture I thought we would take was not the family picture that would be hanging on my wall. Although nothing had changed, life was suddenly very different. The photo on the book, the photos on our wall—they were just physical reminders of an intangible issue tugging at my heart.

So we began to navigate this new life, and I went through weeks of denial, then months of anger. But never once did I doubt my love for my sweet baby boy. In fact, I learned that there is such a sweet delight in working so hard toward little milestones, like banging two toys together or turning the page of a board book. He brings me joy in ways I didn’t know existed. And when I look at him, I don’t see a-child-with-Down-syndrome—I see Roo.

And then the other day, I saw those pictures. And I stopped and looked again. I see it, I thought, as I looked at the pictures of my boys side-by-side. The set of his eyes, the flatness to the back of his head, the way he carries himself… He just looks different.

And then… I looked past the pictures of Roo, past the pictures of Monkey (my older son), and over to the picture collage of my daughter Lamb. And as I gazed back and forth between the photos of my two oldest children, I laughed out loud. Their eyes are different from each other, their hair is different, their smiles, the way they carry themselves, the way their personalities shine through in the snapshots. They’re different. In fact, I am constantly amazed that all three of my children come from the same combination of DNA, and yet they are all so completely… one-of-a-kind.

So let me tell you a little bit about my family, this zoo that I have. There’s Lamb, who is beautiful and loves to dance and play princesses and have tea parties… and practice her “ninja moves” and play superheroes with her brother. She would wear a ball gown to school every day if I let her, and it would come back home covered in paint and crayons because she loves to craft more than just about anything. She gets that from her grandmother (my mother-in-law), definitely not from me. There’s Monkey, the toughest sweetheart you’ll ever find. He is constantly being a superhero or Transformer or Power Ranger of some sort and loves to play boxing and wrestling and all of those super-tough boy things that I can’t say I completely understand—and he will break down and cry if you give him a stern look. So tough, yet so tender. And then there’s my sweet baby Roo, who absolutely loves to make people smile. He draws people to himself—complete strangers stop us constantly to dote on him because he is just that lovable. He adores his older siblings and is determined to be in the same room with them at all times. He loves to wrestle with his brother and sing with his sister. He throws everything he can get his hands on—except cars, which he loves to push back and forth while making “vroom” noises. Oh, and did I mention that he has Down syndrome?

You put them all together, throw in Mommy and Daddy, and I think we make a pretty sweet-looking family photo, don’t you?



Thank God they are all so different from each other. It makes our lives full.



Tuesday, October 18, 2011

Doubts

I feel the need to add a disclaimer that this post was not created out of the stress of the past couple of days and spurred on by exhaustion. I actually wrote this last week and scheduled it for this morning. I could probably add some more to it this morning in my sleep-deprived weariness, but I think it's best just to share with you what I wrote when my head was clearer. :-)

I don't know about you, but sometimes I need to write things down. (Surprise, surprise, eh?) Some days I get completely overwhelmed by the to-do list or the shopping list or the list of questions I need to ask or any one of the many lists that I try to keep in my head. The tasks seem impossible... until I write them down. Once I see them in black and white, they aren't so scary. And sometimes the lists aren't as long as they seem in my head. Suddenly the impossible seems managable, even reasonable. And suddenly I start to feel better, breathe easier--maybe even laugh a little at myself.

Lately I have had a lot of doubts on my mind. They started slowly, just a question here and there, a concern now and then. And then they started to grow. My head is hurting more, my stomach is aching more, the tears are coming more... and I'm sleeping less. The doubts are growing, and I am worrying. And the worries... well, they are intimidating. Overwhelming. Impossible.

So this morning I decided it was time to try my old trick. Get them out of my head. Get them on "paper"--or screen, at least. In the spirit of trying to ease my mind, in the hopes that they will seem less scary when I actually write them down, I'm going to share with you the doubts and questions that have been plaguing me.

What if I should have been more concerned about Roo's slow weight gain?

What if that slow growth also slowed down his mental development--and it's my fault?

What if Roo's many colds last year slowed down his development? I was catching up on The Blessing of Verity the other day and read this: "Why are we so vigilant over Verity’s health?  When typical babies get sick, even repeatedly, it doesn’t affect their overall development.  They will still meet their milestones effortlessly.  When babies with special needs are repeatedly ill, it can have a serious negative impact on their long-term development." She also says, "We can’t prove her health is a result of mama’s milk, vitamin D, probiotics, fish oils, grapefruit seed extract, Sambucus, extra-virgin organic unrefined coconut oil, superfood fruits and vegetables, staying away from dairy and groups of peers with runny noses, or any other factors!  But they can’t be hurting, either." I'm not doing those things. If Roo's coughs and stuffy noses and fevers harmed his overall development... it's my fault.

What if I'm not stimulating him enough? In that same post, Verity's mama goes on to say, "Since her birth, we have done our best not to let Verity have any 'down time,' no break from being challenged and stimulated in some way, unless she is asleep.  Again, this has become part of the collective family consciousness.  We all help to keep her engaged and working, to keep her from sitting and doing nothing, or 'blobbing,' as I call it." What if he is falling behind the other babies we know because of this under-stimulation? It's my fault.

How can I stimulate him more and still take responsible care of the rest of my family? Already the laundry is piling up, the floors need swept, the bathrooms need cleaned--not to mention the projects that are growing. I'm not even keeping up with the current level of chaos, let alone making any head way.

What if I'm not spending enough time with the big kids? What if they start to resent Roo because of all of the time and attention he needs? If they start to resent him, it's my fault.

How can I teach my kids that they are more important than housework, and still teach them to be responsible, good stewards? If they grow up to be irresonsible slobs, it's my fault.

What if I'm comparing too much?

What if I'm not comparing enough?

What if we're missing something? Something in his eyes, his ears, his brain that could be slowing down his development--or worse, something that could affect his health in the long-term.

What if...?

And underneath it all... at the very root of all these questions... is WHY. But it's not the "why" of a year ago. I'm no longer asking, "Why, God, did you bring this into our family? Why are you making our baby suffer? Why are you making life hard for us?"

No, now it's a different "why."  Now I wonder...
Why did you give this incredible baby to me, when I am already failing him? Why didn't you realize that there are thousands of moms out there who would be so much better for him?

I heard an interview this week with a Christian counselor and pastor. He was actually talking about victims of sexual abuse, but he said something that really hit home with me. He said that today's oh-so-popular depression "cure" of Positive-Self Talk doesn't work, because the things you tell yourself aren't necessarily true. I can look myself in the mirror every day and say, "You are an amazing rocket scientist!" But that doesn't make it true, so when I go out and try to get a job at NASA, they'll just laugh me out of there.

And do you know what else? Messages like "It's my fault" are a lot more powerful than messages like "I'm sure I'm doing fine."

But do you know what is effective? Scripture. Because Scripture is true, and I know it's true. If I keep it in my head, if I constantly remind myself of the truth... I'll be better equipped to fight the doubts.

That's the hope, anyway. That's what this counselor said. And I definitely found it to be true in my struggles with depression before. So it's worth trying now.

So here's the deal... Plan A didn't really work too well for me. Writing down those doubts... didn't make them less scary. Instead, I'm in tears just from typing them out, from sharing with all of you the ugly thoughts that are in my head.

It's time for Plan B. And maybe Plan B should have been Plan A all along. Because Plan B is the Word of God.

Here's what I know is true...

"'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" --Jeremiah 29:11

"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." --Psalm 139:13-14

"Praise be to the Lord, to God our Savior, who daily bears our burdens." --Psalm 68:19

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls." --Matthew 11:28-29

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." --John 14:27

"Above all else, guard your heart, for everything you do flows from it." --Proverbs 4:23

Father, help me to guard my heart. Help me to fill it with truth--and You are the Truth. Your works are wonderful, I know that full well. Help me to trust in You, in your plan for me and my family.





Monday, October 17, 2011

ER

Good morning, friends. If you are a Facebook fan of Diary of a Zookeeper, you know that we had an eventful weekend here at the zoo, and I just wanted to fill you all in on what has happened/is happening with Roo! I apologize in advance for how rambling and disjointed this post may be--I am not running on a whole lot of sleep here...!

For about a week now, a virus has been making its way through our house--first with Monkey, then Lamb, and I got a touch of it as well (which I am still fighting off). It starts with a low-grade fever, then turns into a sore throat and headache that lasts a few days. So I wasn't all that surprised when I picked Roo up to put him to bed on Saturday and thought, "Hmmmm, he feels warm." His temp was 100.6, nothing major, but Mr. Fantastic and I decided to keep him home from church the next morning.

I still had to get up and go because I had some obligations yesterday morning, but my wonderful hubby stayed home with all three kids. When I got back home a little after noon, he told me that Roo had been coughing and that his breathing was raspy. Since we knew that it was similar symptoms to our other kids, I wasn't overly worried.

But then Mr. Fantastic had to leave to go to his dad's for a while, and I was trying to get the kids down for naps, and Roo's breathing started to get worse. I put him down for a nap, got the big kids settled (since they were getting over their little bug, everybody had to take a nap), and called the after-hour nurses' hotline. I figured that she would just give me some tips, but I was uncertain about whether I should let it go or get him checked out, since I knew it would likely get worse at night. Well, she wanted to me to check his chest to see if it was retracting when he would breathe, and when I tried to check, it woke him up. The noise that his breathing made while he was trying to cry was... indescribable. Loud and silent at the same time. It was scary, and the nurse could hear him through the phone. She said just to take him straight to Children's Hospital.

Sooooooo... the big kids went to a friend's house, Roo and I headed to the hospital, and Mr. Fantastic met me there. They took us straight back, which was great. He got a breathing treatment, which helped minimally, then a dose of oral steroids. (I need to note here that his breathing was lousy, but he has happy and laughing and flirting with everyone!) They kept him for observation, then decided to do a second breathing treatment, this one a little bit different. And when he was still raspy after that, the ER doc recommended admitting him. Since croup typically gets worse at night, she was concerned that he was going to end up back in the ER if we went home.

After that, it was a lot of "hurry up and wait." It took almost 2 hours for us to get a room, then three or four more people needed to check him out, etc, etc. But in all of the waiting and waiting and waiting, something else happened... he got much MUCH better. I half-jokingly asked our doctor if she really thought we needed to stay there, and she said it was probably best, just in case he got worse once the steroids wore off. In fact, looking over his papers from the day, she said Roo would quite likely need another treatment in the night, and that they may keep him a second night, just to be safe...!

At this point, a lot of things were going on, and I'm going to glaze over some of it... it was getting late, Roo hadn't really had a nap, he hadn't eaten dinner, and he was WAY hyper from the steroids. Doctors and nurses were coming and going, and it kept getting later. We did finally get to feed him around 8:00 (his normal dinner is at 6:00 and bedtime at 7:00ish), and then he was so wound up we had to put him in the crib and put the sides up. He was having a BLAST!  :-)

But as it got later... and he wasn't sleeping... and he was doing amazingly well... and we found out it would be almost $2,000 for us just to stay there overnight... we convinced the doctor that we are responsible adults who would bring our child back if we needed to, and she let us go home.

So yes, we came home. It was around 11:00 at night when we left the hospital, and Roo was still crazy hyper--but he fell asleep in less than two minutes oncce we got in the van.

When we got home, Mr. Fantastic determined that he was going to get up every hour and check on Roo. (Isn't is sweet?) But around 12:15 at night, when I was still awake and he was snoring away, I realized that the combination of constant snoring and an alarm going off every hour were not going to be conducive to a good night's sleep for me... so I just went in and slept on the floor of Roo's room. Still not a great night's sleep, but it was better than the alternative at that point.

ANYWAY, he slept GREAT. He sounds a little bit stuffy today, but just like he has a cold--and his breathing is not audible at all. No coughing or hacking in the night, no distressed breathing, nothing. I am so, so grateful that he is doing this much better less than 24 hours after that episode that sent us to the ER.

So there's our update! Thank you so much to everyone who was praying and who e-mailed and checked on us. I know that Roo's fantastic recovery is the result of a lot of prayer.

Now if I could just get some sleep...! But not this morning. Because this morning, you see, is Monkey's "meet the teacher" day at his preschool. I'll keep you posted...

Thursday, October 13, 2011

Winner, Winner, Chicken Dinner!

OK, so nobody actually gets a chicken dinner. Unless you can somehow buy one from Amazon--and would be so inclined, which I can't say I would recommend.

Moving on. Thank you all for helping me to make Down Syndrome Awareness Month a success. I have more great posts coming, so stay tuned and keep sharing! :-)  For today, though, I have used random.org to select two winners for the giveaway.

The winner of the $25 Amazon gift card was comment #2 -
     Weed said... I "like" you on facebook.

And the winner of the $25 Starbucks gift card was comment #12 -
     Becca said... Just found your blog randomly and "Followed" it before I finished reading your post about the giveaway! Perfect timing. :-)


Congratulations!!  I will be putting those cards in the mail tomorrow--or as soon as I get your contact info.  :-)

Thanks again to all of you. I love getting to share Roo and my other wild animals with you!  :-)

Wednesday, October 12, 2011

Reflections on a sick day

I’m not sick. Monkey is. We had a perfectly great play date yesterday with some of our favorite buddies (Thanks, Megan & boys!), had a nice quiet evening at home, and everyone (well, everyone under the age of 7) was in bed before 7:30. Victory!!! That is, until 11:30 that night, when Monkey ran crying into our room. :-( He had a teeny bit of a fever, and a whole lot of headache. He also had a cough, but only when he was upset or moving around. I had noticed before bed that his voice sounded a little raspy, but he was feeling fine so I didn’t mention it.

So I got to spend the next 3 hours enjoying some quality time, snuggling my little guy and watching “The Muppet Show”. Yes, THE Muppet Show—the one that I watched as a kid, although even then it must have been reruns, because according to Wikipedia (What? What else am I going to do while watching “The Muppet Show” at 1 in the morning???) it ran from 1976 to 1981. Maybe that explains why I never knew the celebrity guest hosts.

Anyway, I finally got Monkey back to bed around 2 AM, and he slept until almost 9:30, which is hugely late for him. If it weren’t for a snoring hubby and a baby that woke up crying at 3:30, I would have been able to get a decent chunk of sleep from 2 until 7, when Lamb gets up for school.

Monkey is acting fine today, although his voice is still a little foggy. Unfortunately, today was supposed to be our big “date day”—my parents were going to keep Roo for the day while Monkey and I went out and celebrated the start of his preschool next week. (Yes, it’s a late start.) Instead, we’re spending the day at home. But you know what? Some days I am absolutely itching to get out of this house… today I was so thankful to throw on my sweats and know that I wouldn’t be setting foot outside. It is cold (after a nice Indian summer) and rainy and the perfect day for relaxing at home.

So all that to say, I have had several little sleep-deprived deep and introspective reflections throughout the day. The first was that I need to take a break from my personal Facebook account (I will still be posting at Diary of a Zookeeper). I have been thinking about it for a while, and now is as good of a time as any, so TTFN, Facebook. But that means that I could not share my rantings pointless wonderings babbling stream of consciousness keen insights with my tens of Facebook friends… so to preserve them for posterity, I will share them here with you now.

• What could possibly be better than a peanut butter, banana, honey, and cinnamon sandwich? A Nutella, banana, honey, and cinnamon sandwich, of course!

• When I plan to be away from the house all day (and thus, not getting any work done), I don’t feel nearly as guilty about not getting housework done when my plans change and I am home for the day. I am actually able to enjoy decorating for fall, reading, watching TV with my boys, etc.

• I don’t know if one can necessarily call it “decorating for fall” when said decorations are 3 candles, a welcome mat, and some gourds. (OK, there might be a little more to it than that, but seriously… not much more.)

• I really hope that Oreo will come out of Roo’s super-cute brand-new outfit that I for some reason chose to put on him on a day when we’re not leaving the house. In retrospect, a bib may have been a good option. Or just stripping him naked. Or maybe I just shouldn’t have Oreos in the house.

• I’m not sure why I waited until I was 32 to read Gone with the Wind. I’m pretty sure that should be a punishable offense. It is fascinating.

• “The Muppet Show” theme song can get a surprisingly strong grip on your brain after a while…

• By this time last year, Lamb had already missed multiple days of school. Even though I miss her when she’s at school each day, I am so glad to report that she has not missed a single day yet this year.

• I have surprised myself at my own hesitancy every time someone asks me if I would go back to Africa. But the truth is, my hesitation is only because I realized on that trip how small I am and how many better-qualified missionaries are out there. I would love to go back—I just worry that it would keep someone better from getting the chance.

• “It’s time to start the music. It’s time to light the lights. It’s time to get things started on The Muppet Show tonight!” I told you, it’s a strong grip…

• I want to have a Halloween party—just a small one with a few of my kids’ friends. I’m pretty sure it’s too late to throw one together.

• I also want to have a great big party with all of our friends. I’m certain that we don’t have time to throw that together.

• I think I’ll just bake some brownies instead.

Gosh, I bet Facebook is really missing me now. That’s right, Facebook! See what you could be experiencing with me? Oh snap.

Oh, and if you happen to still be reading this, please remember that tonight is the last night to enter to win—really! The contest for a $25 Starbucks and a $25 Amazon gift card (I will draw two names—each will get one gift card) ends at midnight! If you have completed any entries but haven’t posted a comment, make sure to do so. And if you have a friend who could use a caffeine fix or some mini-retail therapy online, please share this with them—they can enter to win, too! Just follow the directions on the “Awareness” post.

See you all tomorrow, when I’ll announce the winners!

Monday, October 10, 2011

Spreading the Joy...

This morning I am over at Zehlahlum Family, making more people aware of Down syndrome, thanks to Jamey. Check out the new post--and while you're there, stay for a while and get to know Jamey and her beautiful family a little bit better. Jamey has posted here before and I've sent you over there before, so many of you already familiar with her--and if not, why not? Don't you listen to anything I say??? Jamey and her husband have three amazing children, one of whom they adopted from Ethiopia around the same time that Roo was born. I think we both feel a special connection to each other in our so similiar, yet so different journeys. :-)

So go read what I had to say over at Jamey's blog, then come back and enter for more chances to win! Remember, the deadline is 11:59 PM on Wednesday, October 12.

Sunday, October 9, 2011

Don't hate me...

I know that tonight is the deadline for the giveaway. And I know I just Facebooked about it being the last day for the giveaway. But I'd like to make a slight change.

My awesome friend Jamey from Zehlahlum Family asked me if I would like to write a guest post for Down Syndrome Awareness Month. (I told you... she's awesome.) And given that I am just absolutely certain that her millions of readers will flock right over here to the zoo so that they can see as many pictures of Roo as possible... and given that I am sure that many of them are Starbucks visitors... and given that I think they love Amazon as much as you and I do... I would like to extend the deadline just a teeeeeeny bit. Don't hate me, 'k? 'Cause if you do, I'll spit on your gift card before I send it.

Seriously, here's the deal... My guest post is going up tomorrow, so I would like to extend the deadline until Wednesday night at 11:59 PM, and I'll post the winners on Thursday morning. If you would like to get some more entries, go to the Awareness post to see how to earn them and to post your comments.

Thanks for your patience. :-) And as an added bonus, here is Roo doing his latest trick...




...and here's another one of him just plain looking adorable...

Have a great night! And check back soon!  :-)

Wednesday, October 5, 2011

Words

I am a pretty laid back kinda girl. When you ask me what I want to do for the evening, I'll typically say, "I'm up for anything." When you ask me where I want to eat, I'll say, "Whatever sounds good to you!" I like to go with the flow. I don't think of myself as being pushy or having my own agenda.

I also think I'm pretty laid back when it comes to words. Throughout my life, I've had lots of experience with the things-people-say-with-good-intentions-that-come-out-all-wrong types of things, and I've learned to let them roll off my back. That can be hard, because I honestly don't have a very thick skin, but I've learned to give people the benefit of the doubt.

It wasn't until after Roo was born that I realized what a big push is out there to end the use of the "R-word"--retarded. To be honest, I hadn't thought much about the word at all, mainly because it just wasn't a part of my vocabulary... but I also wasn't ready to jump on the bandwagon. Before you send me nasty e-mails about how I'll feel when someone calls my son that word, please let me explain. I absolutely think that people use that word to tear others down and that is terrible and sad--but is the problem really with the word? Or is it with the attitudes of the people using it? My feeling was--and still is, to a degree--if we "forbid" people to use this word, they'll just replace it with another.

Do you know what's really sad to me about that? I was originally going to write that kids use that word to tear others down, and then I realized that it's not limited to kids.

And over the past year, I've heard lots of stories of how offended people have been by this word--some very rightfully so, others (in my humble opinion) maybe went just a teeny bit over-the-top in their reaction. But I've come to realize... as I've listened to their stories... as I've heard acquaintances use it in casual conversation... as I've overheard it in public places... that it's just not a nice word. Period.

Have I stormed out of the room when someone used the word to refer to their phone? No. Have I kicked someone out of my house for mumbling it after a bad football play? No. Would I prefer that people think twice and come up with a more intelligent way of expressing themselves? You better believe it.

Why? Because someday, chances are somebody mean is going to use that word to hurt my son. And someday after that, he might hear someone else--someone he loves and respects--use that same word to vent frustration over their broken DVD player. And I don't want him to think, "You mean you're angry at that thing because it's like me. It's bad, like me. It's worthless, like me."

It's not a nice word. And yes, mean people will come up with other ways to be mean. But nice people who use the word without thinking... those people will understand. Those people can be taught that, even though it doesn't seem like a big deal to them, it's a big deal to someone else. And they have hundreds of other words to choose from to describe their thoughts and feelings. And they will.

So tonight, I'm spreading the word. Let's end the word.

And if I didn't convince you, maybe this will:


This video was made by a girl whose brother has Down's and Autism. She is awesome. I hope Lamb grows up to be like her.

It's Down Syndrome Awareness Month. Help me spread the word.

Monday, October 3, 2011

Awareness

I don't think it's a secret to anyone here that we were quite shocked when we found out that Roo has Down's. Shocked isn't even the word, really, but it's as close as I can come.

I don't know if that news would ever be easy to hear, but I do think it could have been easier if our circumstances had been a little bit different. There are so many things that could have made a difference that day.

I wish...
   ...that I had known someone else with Down's before Roo. My exposure to people with any kind of delay is so limited, and it is quite honestly something I have always feared. I have vague memories of a boy in elementary school--he didn't have Down's, but some kind of developmental delay that caused him to be in a special education classroom. I remember avoiding him, laughing at him (though never to his face), and the confused and slightly hurt look in his eyes when other kids didn't want to play with him--but he always remained so upbeat and positive. I wish I had gotten to know him.
   ...I had seen pictures of the beautiful babies, the adorable children, the handsome adults who have Down syndrome.
   ...someone had told me what people with Down syndrome can accomplish.
   ...I had realized what JOY can come from celebrating each little milestone.
   ...I had understood that my initial feelings were normal. It's OK to be sad--heartbroken--to grieve the loss of the child I thought I lost.
   ...I had known that the child I have is a million times better than the child I thought I lost.
   ...I had realized just how many children like Roo never get to experience life. In the US, around 90% (85% - 95%, depending on what study you read) of babies who are diagnosed with Down syndrome in utero are aborted.
   ...I had been aware of Reece's Rainbow, and known how much children around with world with Down's are longing for someone to love them.
   ...I had been prepared for the medical issues we might face, so they weren't all so scary.
   ...I had realized that it isn't any different to play with or babysit a child with Down's just because they have Down's. (Yes, some children have other medical conditions that complicate things, but I wouldn't have known that. I would have been terrified to offer to watch someone else's child with Down syndrome.)
   ...I had known another family who had been touched by Down's. I wish I could have really experienced life with them and seen how wonderful it could be, instead of passing a parent who had a child with special needs and sadly thinking, "That poor mom. I don't know how she does it."
   ...I had understood the feelings and sensitivities of parents who have a child with Down syndrome. I hope I've never inadvertently said something to offend one.
   ...that someone had told me that Down syndrome is not a death sentence.
   ...that I had realized just how amazing this journey would be.

October is Down Syndrome Awareness Month. And you know what? I wish I had been more aware before Roo was born. Now it's my duty--my privilege--to help others know what I never did. And you can help me.

Some of you know firsthand about raising a child with Down syndrome, some of you know what it is to have a sibling or friend with Down's, many of you who are reading this know what it's like to have a friend whose beautiful baby boy Roo has Down syndrome.  ;-) But all of you know others who are just like I was 2 years ago--unaware. Unaware of the struggles, ignorant of the joys, oblivious to the beautiful faces.

This month, will you help me to make them aware? Will you encourage them to know Roo?

So let's make this fun. I will offer up 2 $25 gift certificates--one to Starbucks, and one to Amazon--one each to two lucky readers.  Here are the ways to enter:
  • Become a follower of this blog
  • "Like" Diary of a Zookeeper on Facebook (the link is on the right-hand side of the page)
  • Share this blog on Facebook, Twitter, your blog, or other social media (one entry for each, one time per day)
  • Share the Reece's Rainbow site, or a specific child who touches your heart, on Facebook, Twitter, your blog, or other social media (one entry for each, one time per day)
Leave a comment for each entry you complete.  If you become (or already are) a follower, leave a comment; if you "like" me on Facebook, leave a comment; etc. You may leave a comment for each share that you do on different social media, but please only once per day for each media. (In other words, don't share the Reece's Rainbow site 10 times in one day and leave 10 comments...) Some of you have already started sharing, after you read a recent post of mine on Facebook. Please feel free to use those shares as entries, too.

The contest will end at midnight on Sunday, October 9. I will randomly pick 2 comments on Monday and contact/post the winners that day.

I wish I had been more aware. I am so grateful to you for making yourself more aware, and for spreading the word. I can't promise to post every day this month, because we all know that isn't likely to happen, but I do plan to make a concentrated effort to raise awareness through this blog throughout the month of October. Thanks for being part of that.

Monday, September 26, 2011

Matters of the Heart

Last night Mr. Fantastic and I watched a movie, and as the main character's flashbacks started, I thought, "I know flashbacks are a great tool for movies, but it just doesn't happen that way in real life." I don't think I've ever relived a moment in my past so vividly just by thinking about it. I have memories that can be triggered by certain sights, smells, words, etc, but that doesn't mean that I relive them, I just... well, remember them.

And then today I took Roo to the cardiologist, and as I pulled up to Children's Hospital I had a vivid memory of arriving at the ER there with our 3-day-old baby, who had jaundice--and then issue after issue, which we now know were just signs trying to point us to the ultimate diagnosis of Down syndrome. And I truly did relive the moment. And as I walked in and saw all the same sights, I could almost audibly hear the words I said to my husband over a year ago, "This all seems huge right now, but I know that someday we'll look back on this and laugh. We'll drive past Children's and say, 'Remember when we had to go there? Gosh, which kid was it? And was it for... jaundice or something?' In the long run, this will be nothing." (Ha. God must have had a little chuckle over that one.)

And now the murals at Children's are familiar to me. I know how to get everywhere I need to go. My big kids (when they're with me--and thankfully they were not today) know where the big ball maze is. It's part of our lives. And as much as I am growing and changing and accepting--and even embracing--our new life, there's a part of me that hurts every time we walk through those doors. It's a love-hate relationship--I am so thankful that we have a Children's Hospital just 20 minutes away, but I really wish we didn't need it.

But we do.  We do need it, and today we were there for a quick check of Roo's ticker. And by quick, I mean it took roughly half of an eternity longer than I had anticipated.

If you're not keeping close tabs on Roo's heart issues (which of course you all are, I'm certain), here's a quick recap. He was diagnosed at his first appointment last year with two holes in his heart, an Atrial Septal Defect (ASD) and a Ventricular Septal Defect (VSD). The VSD was very small, and the doctor actually thought it may close up on its own. The ASD was "moderate" in size--one step above small--and would likely require a small procedure to repair it. The procedure wouldn't be done until Roo was around age 5, and it would  not require open heart surgery, thank goodness. There was a chance it could also repair itself, but most likely it wouldn't because of its size. For a child with Down syndrome, the doctor told us, Roo's heart issues were very minor. He just asked that we follow up about once a year to keep an eye on the ASD until it could be repaired.

So it was the annual checkup that took us back to the doctor's office today. Next year I will remember when I call to schedule our appointment to ask for an echocardiogram. Both times we've gone, the doctor has wanted one but it wasn't on the schedule, so our appointment took much longer than necessary because we had to wait for a chance to be squeezed in for the echo. By "longer than necessary", I mean that we spent approximately 15 minutes with the doctor, 30 minutes getting the echo, and an hour and forty-five minutes waiting. Did I mention that Roo's appointment was at 12:30, and that his naptime is at 1:00?  He did fall asleep while we were waiting for the echo, but woke up about 20 minutes later when I laid him down for the test. By the time we were done, the poor kid was toast.  (And then he went to bed for the night at 6:00--he was exhausted!)

ANYWAY, we finally got the echo and all of the waiting out of the way, and here's what we heard: GOOD NEWS. It looks like the VSD pretty much has closed itself up!  The doctor said there's a chance that there's still a pinhole leak, but he really thinks it is closed and is completely unconcerned about it either way. And the ASD has shrunk by over 50%!! This is HUGE, especially since Roo has been growing--and his heart along with him.  :-) Last year one side of his heart was enlarged because of the extra blood flow (due to the hole), but thanks to the shrinking of the hole that is no longer the case either!  And the cardiologist even said there's a good chance that Roo won't need the procedure to repair this hole!!! That is a huge relief for me.  HUGE.

There was one other defect that he hadn't seen last year. It's called a cleft mitral valve leafleft.Yeah, I only remember because I had him write it down for me. Basically there's a little divet out of the tissue of one half of a valve, so every time the valve closes, a tiny little bit of blood seeps back through. But did you notice the key word there? Tiny. He said it is very minor and should not require any intervention. This is, however, probably my biggest prayer request coming out of this appointment. This is the only of Roo's defects that could worsen on its own--and while it is repairable, this particular defect would require open heart surgery to fix. Again, the cardiologist really didn't seem concerned, so I am not going to lose sleep over it, but you'd better believe I'm going to be praying that it doesn't progress into anything bigger!

But all-in-all, GREAT news from our appointment today. It was definitely good for my heart. And by the way, I do know that it seems a little melodramatic for me to feel so strongly about being at Children's Hospital. The truth is, Roo has been blessed with amazingly good health for a child with Down's and almost all of our appointments there have been "just in case" checks--not sick visits. And I am so, so thankful for that. But I just remember how... blissfully ignorant I was in that first week we spent at Children's when Roo was born. Don't get me wrong, I was unbelievably--and perhaps disproportionately--worried about my baby (I had, after all, just given birth, and was very sleep-deprived and maybe just a tad hormonal...); but I was also certain that once Roo got released, we'd never see the inside of that building again. We wouldn't have to be one of those families who is at Children's all the time because... well... that just wouldn't happen to us.

I remember being that person. But I'm not her anymore. I miss her sometimes--I mean, it's called blissfully ignorant for a reason--but I wouldn't want to be her again. She might not have known as much about Children's Hospital as I do, but she also didn't know sweet baby Roo like I do either. And I wouldn't trade that for the world.

Tuesday, September 20, 2011

More than enough

Roo is almost 18 months old now. 18 months! 18 months since I met the boy who would change my life.  18 months that I have experienced joy and sorrow in ways more intense than I had ever imagined.  18 months of a spiritual journey that I wouldn't have believed God had in store for me.

I was so angry when we found out that Down syndrome had entered our lives. While we waited for the test results, I pleaded with God to "make" them negative. Please, Lord, let the doctors be wrong. But He said no. The tests were positive. Our lives had changed.

I began a new plea. Please, Lord, take it away. I didn't know what that would "look" like exactly--Down's isn't a disease, so it's not like he could recover... but we're talking about GOD here--He can do ANYTHING. Right? Prove it, God. Take it away. But He said no. Roo's Down syndrome was here to stay.

As I started to reach out to local organizations for help getting set up with therapies and doctor's appointments, everyone was full of encouraging words. Children who had almost no delays, who walked and talked at the same time as "typical" children, who read at age 3,who do amazingly well in school. Please, Lord, let that be us. Surely that will be us. Make him as typical as possible. But so far... He has said no.  Roo is lagging, even behind other kids I know with Down's. It brings tears to my eyes to even type it out.

Three pleas. Three "no's."

Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” --II Corinthians 12:8-9

The apostle Paul pleaded three times for the Lord to take away the thorn in his flesh. God said no--but not just "no"--He said, "My grace is sufficient for you."

Please, Lord, let the doctors be wrong.  No, but I'll give you the strength to hear the words, even though they aren't what you want to hear. I'll give you the courage to get out of bed tomorrow, even if you are sad and lonely and angry. My grace is sufficient for you.

Please, Lord, take it away. No, but I'll help him to grow stronger each day. And I'll help you to get through your own pain a little more each day. I'll give you support and help and wisdom. My grace is sufficient for you.

Please, Lord, make him as typical as possible. No, but I'll make him a blessing. I will use him to draw you--and others--to me. And he will bring you unbelievable joy in the journey. My grace is sufficient for you.

Sufficient? The more I reflect on that passage, the more I think God must have smiled when Paul penned those words to the Corinthians. God's grace is beyond sufficient. It's abundant. It is not always what we want--but it's more than we could ever hope for. His grace is enough--and more.

Honestly, the roller coaster of emotions I have experienced over the last 18 months has evened out quite a bit. Seeing Roo around kids his age is more interesting than heart-breaking. Telling people at the church nursery--or the grocery store--that he has Down's is just conversation, not cause for tears. Life is good--and even better, it's just life. Not "life after Down's" or "life now"--it's just life.

But some days are still hard. I had the chance today to see an adorable little boy who just turned 1. He's not "Roo's age"--he's a full 5 months younger, maybe a little more. And when I talked to him, he looked right at me and said, "Yeah." One little word. It was adorable. And it literally made my heart hurt.

For hours I focused on the things that Roo can't do. He has no words. He can't walk. He can't use a spoon. He can only put things down by throwing them--he can't figure out how to gently let go. He can't... well, the list goes on.

Please, Lord, just one word. I want to hear my baby boy say "mama." Just one word. Please, God, give me something.

No, now isn't the time for him to speak. It will happen, but not now. My grace is sufficient for you.

And then I walked into Roo's room to get him up from his nap, and he put his hands on the rail of his crib... and pulled himself up to standing!!!

I was BEYOND THRILLED. For a few weeks now, he'd put his hands up and get up tall on his knees, but he has always needed help to get his feet under him--even just this morning when our physical therapist was over. But not this time--he did it completely on his own!

And I didn't think, "I wish he had done this six months ago." And I didn't think, "Well, great, but I wish he would walk." Nope, I thought, "Oh my gosh--this is AMAZING!  Thank you, Lord!"

It wasn't a word. It wasn't what I had asked for. But it was sufficient--and beyond. It was more than enough.

Thursday, September 15, 2011

Monkey-isms

Here are a few of Monkey's latest takes on life...

Me: "Julius Caesar was a real person who lived a long time ago."  (Don't ask why we were talking about Julius Caesar.  It's a long story.)
Monkey: "Did he die?"
Me: "Well, yes, Honey.  He died a long time ago too."
Monkey (suddenly very serious): "Oh no.  We should pray for his wife."

---

Forget creation vs. evolution--Monkey has made the most important dino discovery...
"Lamb, dinosaurs are extinct.  So if you smell something really bad, it's all because of the dinosaurs."

---

His knowledge isn't limited to dinosaurs, though.  He can tell you about sharks, too...
Monkey: "Did you know that sharks don't have bones?  They're skeletons are made of cartilage."
Me: "That's right!  Do you know what cartilage is?"
Monkey: "No."
Me: "It's the stuff that's inside your ears and nose."
Monkey: "Wow!  LAMB!  Sharks' bones are made of BOOGERS!!!!!!!"

---

And he's loyal, too...
"Mommy, if you get arrested and I'm still a kid and small enough to sneak past the guards, I'll use sharp scissors to cut you out of your cage."

Wednesday, September 14, 2011

Routines

5:30 AM Hop out of bed and into the shower
5:45 AM Step out, refreshed and excited for a new day
               Throw on my size 2 jeans and that super-cute new top I found on clearance at LOFT
5:50 AM Put on makeup and do my hair
5:55 AM Read my Bible and pray, thoroughly enjoying the silence while my family sleeps peacefully
6:45 AM Do a load of laundry before the kids get up, so that I feel like I have a head start on the day
7:00 AM Lamb gets up on her own, changes clothes, and comes downstairs to ask me to braid her hair
7:10 AM Monkey gets up, and the two eat breakfast while we quiz each other on the latest Bible stories we've been studying
7:30 AM We sit down for a time of prayer and Bible reading before taking Lamb to the bus
7:40 AM Roo wakes up, but isn't the least bit hungry and is perfectly happy to wait for his breakfast until after Lamb leaves for school
7:45 AM Out the door

In case you were wondering, that was my fantasy about what a typical morning should be.

Here's the reality:
5:15 AM Roo wakes up crying because he's lost his binky (for the 5th time)
5:25 AM I'm still awake, thinking I should just get up, but I am just too darn tired to move
5:35 AM I realllllly want to go back to sleep... I need to get up in 10 minutes...
6:10 AM Oh shoot!  I overslept!  Time to hit the shower...
6:45 AM I've been standing in front of my stupid closet for 15 minutes.  Does it really matter what I where?  I can't stand the way I look, anyway.  Oh, forget it, I'm just wearing sweats.  Again.
6:50 AM I sit down to do my makeup, when Lamb comes in the room. She's up on her own--yay--but she's sobbing because she has just woken up from a bad dream.
6:58 AM Lamb has stopped crying.  I tell her to get dressed.  Monkey comes in already dressed in some strange concoction he has picked out for himself.  He woke up because of Lamb's crying.
7:00 AM "OK, Honey, that's great, but I need  you to get dressed."
7:05 AM "Lamb, stop talking and get dressed."
7:10 AM "Sweetie, it's a pair of pants and a shirt.  Put. It. On. NOW."
7:15 AM "There's no more talking until you're dressed!!!!!"
7:20 AM Lamb: "But Mommy!!!!!!  I don't WANT to comb my hair!  Why do we have to DO something to it?  Why can't you just BRUSH it?????"
7:35 AM Go downstairs to get Lamb breakfast.  Realize that I forgot to pack her lunch last night.  Also realize that Roo is awake.  Throw some Honey Bunches of Oats in front of Lamb and run up to get the baby.
7:40 AM Get Lamb a yogurt, Roo a bottle, make Monkey some oatmeal, and desperately search the pantry/fridge for something that will resemble a healthy lunch.  Hint that maybe Lamb could BUY lunch today, even though it's not Pizza Day.
7:43 AM Lamb finally stops crying about the idea of buying lunch.  I throw together an assortment that may or may not include any actual food groups and tell her to put it in her bookbag.  Explain to Monkey that he will have to finish his oatmeal after we take Lamb to the bus stop.  Be thankful that the kids at least have the courtesy to cry one at a time.
7:50 AM Run out to the end of the street to wait for the bus, because ONE day it came early and we missed it and we would NOT want that to happen again.  (It doesn't come down our road.)  Say a hurried prayer together on our way.
7:51 Wait for the bus.
7:55 Assure Lamb that we have not missed the bus.
8:00 Start to wonder if we HAVE missed the bus.
8:05 If the bus isn't here in 5 minutes, we'll go back home and drive to school.
8:07 Lamb gets on the bus, as happy as if everything had gone perfectly all morning.  At least that's a relief.
8:10 Monkey's oatmeal is hard as a rock.  Roo is starving.  The kitchen is a war zone.  And the day hasn't even started yet.

I don't know about you, but I'm exhausted.

OK, so let's be honest here--it's really not THAT bad.  OK, well, maybe once.  So far.  Most mornings really go pretty well, but they are busy and stressful.  Getting the kids' day started and ended are the two most stressful parts of my day.  And in between, well, I just don't know where that time goes.

I miss it here.  I miss all of you--I mean, the thousands of you that I imagine are here, checking each day with baited breath, waiting for the next words that might fly off my fingertips.  Wait, was that an echo I just heard?  You ARE still out there, aren't you???

The beginning of the school year has not been the Return to Peace and Tranquility that I dreamed thought it might be.  BUT we're getting there.  We're getting into a routine.  Last night I actually remembered to pack Lamb's lunch so that it would be ready this morning--let's hope that becomes a habit, because it was a huge help.  This morning I practiced Bible verses with the big kids while they ate breakfast, and I remembered to take Cheerios for Roo when we walked out to the bus.  Oh... and I told Lamb that there was no talking when she got up this morning until after she got dressed and went potty.  So mean, I know, but it really helped.

And what's more... I finished almost everything on my to-do list!  Back in July when I made my list for what household chores need to be done each day, I quickly realized that I was going to have to do just half of the list each week and the other half the following week.  But yesterday and today I got all but 1 thing done on the list--what a great feeling.  I may actually get my act together after all.  Someday.

And now, I'm in what I am planning to call my "Wednesday Oasis."  My kids are in Wednesday night classes at church, and I have (shhhh... don't say it too loud) no responsibilities.  That's right--for an hour and a half each Wednesday, I get to sit down... by myself... with no dishes or laundry or house projects anywhere near... and listen to the silence.  And read.  And pray.  And (hopefully) blog.  That's what I'm doing tonight.

So I know... I thought once Lamb was in school, I would be back in full force.  And I haven't been.  But I'm getting there.  And I've got lots of good stuff up here (I'm pointing to my brain, which is a little silly since it means I have to type with one hand and you can't see me anyway... but that's where my ideas are), so I hope you'll keep coming back.  And if you don't, I'll just imagine that you do, and that you've brought several hundred of your closest friends with you.  ;-)

Uh-oh.  It's almost 8:00.  Time to go enjoy a few more moments of silence.  Believe me, you don't want me to start writing out what our bedtime routine is like...............................