Wednesday, May 28, 2014


Thank you to everyone who entered the Lilla Rose giveaway. I don't do giveaways very often, and it was so fun to be part of this!

The winner is...

Brittney Bell!!!

Congratulations, Brittney! I have e-mailed you AND passed your information along to Jill Wright, the Lilla Rose consultant who is sponsoring this giveaway.

And if you're not Brittney, don't forget to head over to Jill's website to place your order. I know I will be! :-)

Friday, May 23, 2014

Heart Doctors & Expectations

If you follow me on Facebook or have spoken to me (even in passing) in the last week, then you are well aware that today was Roo's annual cardiology appointment. I can't say that I've been exactly worried about it--in fact, I really expected it to be rather uneventful--but it was something that has been on the forefront of my mind.

So let me start by giving you all some background. When Roo was diagnosed with Down's, one of the first things they asked us to do was see a cardiologist. Approximately half of all babies with Down syndrome are born with heart defects, so although we hadn't had any outstanding concerns up to then, a checkup seemed like a good idea.

At our first appointment, Roo was diagnosed with an Atrioventricular Septal Defect (ASD) and a Ventricular Septal Defect (VSD), two of the most common heart issues in babies with DS. You can read more about them here, but they are essentially holes in the heart. The ASD, usually the cause of greater concern, was quite small, and the heart had already started to grow tissue around it. The doctor was confident it would close itself completely within the next few months. The VSD, though, he believed was too big to close on its own and would need to be repaired. Fortunately, it wouldn't affect him for several years, so he told us to expect the repair to happen around age 5--AND it could be done without open heart surgery, but would simply involve a heart catheterization and an overnight stay. Until then, he just wanted to see us about once a year. All-in-all, it was much better news than it could have been.

The following year, the doctor also discovered a cleft mitral valve. This essentially means that a valve between two of the chambers wasn't/isn't closing all the way, which allows a little bit of blood to leak back into the incorrect chamber when the heart pumps. It was a minor leak, and again he just wanted to monitor it. The best news out of that appointment surrounded the VSD, which had shrunk to less than HALF of its original size. He said that was quite unusual for a hole of that size, and told us if it continued to shrink, Roo may not need to have it repaired at all.

We went back again when Roo was 2 1/2. At that point, Roo was the fun-loving (ahem, non-stop-moving) child we all know and love, and the cardiologist recommended against doing an echocardiogram. He knew that the idea of getting Roo to lie still for 45 minutes was laughable, and since he wasn't overly concerned about any of the defects, he told us to just come back again in a year.

Which brings us to today. OK, it was a year-and-a-half. Somebody I know is a procrastinator. Just deal with it.

Anyway, we went to the appointment this morning, and as some of you know, it did not get off to the best start. He completely flipped out when the nurses tried to take his blood pressure and do an EKG, making the results absolutely worthless. He cried so hard he was shaking, the poor baby. It's funny to me, since they weren't doing anything that hurts, but I think he's been to enough doctor's visits that he just hates being messed with.

And then we waited for the cardiologist. Fortunately, Nickelodeon must somehow have been made aware of this impending appointment, and they released several PAW Patrol videos for the Leap Pad last week. I may or may not have spent an hour-and-a-half last night getting them downloaded just for this morning. Whatever. It was worth it.

When the cardiologist came in, I thought, "Oh good, we're just about done!" If he didn't want to do an echocardiogram on 2 1/2-year-old Roo, there was no way he'd attempt one on 4-year-old, already-freaking-out Roo.

I was wrong.

After going over Roo's history (which began with, "I remember you, Buddy! You're bald!" :-) This kid is rocking that bald head, I tell ya.), he listened to his heart and told me that he could still hear some leakage from the cleft mitral valve. He explained that this could be repaired, but it would require an open-heart surgery--and if they did that, they would probably just repair the VSD at the same time. That was a little disconcerting, since my big comfort for this whole surgery was that his chest wouldn't need to be opened.

And THEN he said, "You know, we didn't do the echo last time, so it's not a bad idea to try it this time. I mean, I know it may not work, but it's worth a shot. If we can't get it, we'll try again next year."

Are you kidding me? You think this kid, who lost his ever-loving mind over a blood pressure cuff, is going to lay still for 45 minutes while they rub gel and a wand all over his chest?

OK, if you say so.

I might have been a little skeptical.

At first, it seemed like a total disaster. Roo laid down on the table, they put a TV with a baby signing video right by his face, and asked me to hold his hands. As soon as I did that, he started arching his back and kicking and crying and... it wasn't pretty. BUT I managed to hold both of his hands in one of mine, then I used my other hand to hold down his legs. And although he would periodically remember that he was supposed to be unhappy and give a half-hearted cry/struggle, overall he got pretty entranced in the video and was relatively still. Still enough for the tech to get every shot he needed in about 25 minutes. Hallelujah! (I would have taken a picture of this, but A-both of my hands were fully occupied in HOLDING MY CHILD DOWN on the table, and B-there was a big sign in the room that said, "No pictures or videos, please!" Gotta love us snap-happy moms...)

And then back to wait for the cardiologist. At this point, Roo finally find something that made him happy...

He would stack the blocks, count them (I know!!!!), and then say, "Woo-hoo! Yeah!" for himself. Over and over and over. But hey, he was happy, so I wasn't arguing!

But back to the appointment. I'm not gonna lie. At this point, I was preparing myself for him to come in and say, "So, I think we'll go ahead and schedule the surgery now--there's no real need to wait until he's 5."


He said that BOTH holes in his heart have completely closed! He doesn't need the VSD repaired at all! I know... I know I should have half-expected this, since it had started to shrink already... but I just can't tell you the relief. I just. I don't even have the words.

And the mitral valve, well, that's still leaking. BUT it is small, and the leak is minor, and it is not causing any enlargement in either chamber (which is the biggest concern). He said, "It can be repaired, but right now I don't see any need to." He asked us to come back in a year, and I'm guessing he'll want to check on that every 1-2 years until Roo is an adult, since he and his heart will be growing. But he seemed quite confident that this would need be an impediment. He cleared Roo for all activities, sports, etc. No worries.

I managed to wait until I got in the car to cry.

I am still a little astounded at the relief I feel from all of this. It really isn't that different from what I had expected going in. But when I told Mr. Fantastic about it, he reminded me of why I may have gone to that appointment holding my breath. Because 4 years ago, we walked into a doctor's office and expected a quick blood draw and a "everything is fine, you guys are good to go!" And instead we left with a diagnosis and our world turned upside down. So now with every single doctor's appointment, even when we don't expect a problem... part of us does. Part of me is waiting for the other shoe to drop, waiting to hear about that something that we missed. That's something that changed for me that day in the geneticist's office.

I expected to leave the cardiologist's office with no real news. And then again, I expected to leave in tears, calling my hubby with news of surgery to schedule or another defect found or... worse.

But I didn't leave with either of those. I left with good news and relief and a reprieve. And it felt wonderful. I did leave in tears, but good tears.

To celebrate, I took Roo (who was nonplussed by the good news, and recovering from the traumatic experience of being touched by doctors and nurses) to his favorite restaurant for lunch. Then I ran into Target for just a couple of quick things. Apparently being a major grump all morning gets all of the grumpies out at once, leaving lots of room for giggles and silliness...

And then, exhaustion.

A much-deserved nap, my little guy. It's been quite a day.

Friday Funny: Appropriateness

Coming home from Lamb's spring concert, we decided to walk along the front of the house and in the front door (instead of going through the garage) to enjoy the flowers that I had spent all day planting. Mr. Fantastic was carrying a rather odorous Roo.

"It's funny," Mr. Fantastic began, "to have two distinct smells at the same time... Roo's a** and the flowers..."

I had barely given him the look when Monkey chimed in, "Yeah, you've got Roo's a** in this nostril and the flowers in that nostril!"

The look got even sterner. And I may have simultaneously stifled a laugh. That's what happens when you don't watch what you say.

"Buddy," I told him, "we really should use that word. It's not appropriate."

Monkey looked up at me with big sad eyes and said, "I'm sorry, Mommy. I won't say 'nostril' anymore."

I decided it was best to just let it go.

Thursday, May 22, 2014

GIVEAWAY! Have you met Lilla Rose?

I am so excited to be participating in a giveaway with my friend Jill Wright, an independent consultant with Lilla Rose! What--or who--is Lilla Rose? Well, I'll get to that, but I want to tell you a story first.

Last weekend, Lamb and I went on a mother-daughter date. I would love to tell you all about it, but in the interest of time and topic, I'll limit myself... As part of a guided discussion, we talked about our care routines for our hair, face, and skin. And I had to admit that I wish I did more with my hair. I am largely a wash & go girl, not by choice, but because my hair is so fine that it just doesn't hold well in clips and styles. I've tried a variety of stuff, but I usually just give up and go back to my au natural look.

And just a few days later, I got my Lilla Rose clip. And everything changed.

Lilla Rose sells a variety of beautiful hair accessories, the signature item being the flexi-clip, a patented, one-piece hair clip made of beaded music wire and an attached sliding pin that holds the hair comfortably and securely in place. It works in all types of hair, from baby fine to extra-long and thick and comes in 7 sizes to enable you to do a variety of hairstyles quickly and easily. Check out this sizing video to determine the size you need for your hair type and style.  Lilla Rose has a 90-day sizing guarantee, so if you happen to order the wrong size, they'll swap it for you and even pay the return shipping. All items come with a one-year guarantee.

You guys, I can't even tell you how much I am loving this clip! I put it in my hair, and it STAYS THERE. My hair holds and feels secure, but it's still pretty and flowy looking, not pulled so tight that my face is stretching (which is what I usually feel like I have to do to wear my hair pulled back). And of course, it is BEAUTIFUL!

This is the clip I got, modeled here by Jill's lovely daughter. It's a music pin!!!! :-)

I have put it in my hair and Grace's, which is very similar to mine. We both love it. I spent an hour yesterday trying to decide what to buy next! And here is something extra cool for lefties like me... Lilla Rose will also custom-make left-handed clips (pin attached on the left side) at no extra charge! Simply message your request to after placing your order.

But here's the best part... I get to give one of these beautiful clips to one of you!!!

OK, I don't actually give it to you. The giveaway is sponsored by Jill Wright, Independent Consultant with Lilla Rose. (Jill is also in The Club with me--you know, the Extra Chromosome Mama club. Yay!)

And here are the details...

  • To enter:
  • One winner will be selected randomly at 11:59 PM on Tuesday, May 27. (I was going to make it Monday, but I thought I'd give you an extra day 'cause it's a holiday weekend and I'm nice like that.)
  • Winner will be contacted by e-mail, so a valid e-mail address must be entered.
  • Winner will receive a voucher for a free item from Jill's website, any item up to $16. Giveaway open to U.S. residents only.
So what are you waiting for? Get over to Jill's web site and start commenting!

The views shared in this blog post are the express opinions of the blogger. I received a Lilla Rose clip as incentive for this giveaway.

Tuesday, May 20, 2014

When it's time to walk away

Lamb was 6 months old when I went to my first MOPS meeting. (If you've known me any length of time, that is not the first time you've heard that sentence.) My mom had been encouraging me to find a MOPS group for months, but I didn't even really know what that was, let alone how to find it. Then one morning in church, a new friend said in passing, "I have to get ready for my MOPS meeting on Tuesday." It turned out that a group met right here in my tiny little town, and she was the leader.

I walked into the meeting 2 days later... and instantly fell in love. Within a few weeks, I had volunteered to join the Steering Team. In the years that followed, I have been immersed in moms' ministry, both MOPS and otherwise. I have done publicity, I have led MOPS groups, I have led a discussion group of young moms in a Bible study, I have even started a new moms' group at my church (though not an actual MOPS group). For 8 years, mom ministry has been my ministry.

During my second year of leading the moms' group that I helped to start at my church, I began to notice something... the moms there were really young. I was starting to worry about education and guiding friendships and finding appropriate music/tv/role models for my elementary-aged kids, and the moms around me were talking about sleeping through the night, potty training, and the terrible 2's. One sweet mama told me that I was a good role model.

And that's when it hit me: I'm no longer a young mom.

Now don't misunderstand me. I'm not complaining about my age and I'm not looking for reassurance. And yes, I still have Roo who is not sleeping through the night and not potty trained and right in the throes of temper tantrums and stubbornness. But it's different. I've been down that road a few times and am comfortable with those phases--and honestly, we just march to our own drummer with him, so it can be hard for me to relate to other moms with little ones right now. No, I'm not whining and complaining. I'm just explaining to you that I needed to see that my phase in life was changing, is changing.

So last year I made the very tough decision to step down as the leader of the moms' group, leaving it in the amazing hands of my dear friend who had been my co-leader for the two years since we had founded the group. I took on the role of teacher, leading the discussion about once a month. I was sad, but so excited and had many big plans!

But something was just different. My plans didn't go as I had... well... planned. My love for the moms never changed, but my heart knew that I was not where I should be.

It was time to walk away.

Last Tuesday was my very last meeting. I walked away from the ministry that has been my lifeline for the past 8 years. It has left me feeling a little rudderless. But it's the right decision.

And yet, I'll be right back in there next year, speaking at MOPS groups, writing for moms, ministering to moms. Loving moms, as I always have. But not from within. I'll be coming in from a new angle. A good angle. A mentoring angle. But still... a different angle.

I'm not much for change.

It's been hard. (Did I just say that I have been praying for hard? What kind of a crazy person am I?) But it is right. My friendships are going to look different. But the ones that remain will grow. My ministry will look different. But it is going to be richer, because I will be embracing who and where I am, not trying to hold onto something I'm not.

Do you know the scariest part? This new territory is, um, new. It's unknown. I know moms' groups. I know what they look like, what it feels like to walk in the room, how the conversations will go, even what kinds of food is likely to be served. But this writing and speaking thing, it's still pretty new. And I don't know where it's headed. Will it stay pretty local, or will it grow? Will I ever write the books I've been outlining? Will I get articles published? Find more blogs where I can contribute? Will I stay right here at the zoo?

I don't know the answers to these questions. It reminds me of Roo's first week on earth, sitting in the hospital, and day after day hearing something new that wasn't going as it should in his tiny little body. And I prayed, "God, I don't mind having faith, as long as I know it's going to work out OK."

(In case you're wondering, that's not faith at all.)

I don't know how this is all going to work out. I don't know where it's all headed. I only know one step at a time. And as hard as it was, the first step I needed to take was to walk away.

OK, Lord, I'm ready for step 2!

Monday, May 19, 2014

When you get what you pray for

You know how people say, "Don't pray for God to give you patience!" You know, 'cause then you'll find yourself in all sorts of situations where your patience is tested. Right? That's the theory.

I'm not big on clichés. (It's funny that I am saying that again, because that is precisely how I started this blog 4 years ago.) Clichés are just about 2 steps away from small talk, and my introverted self is not a fan of either of them.

BUT there is something to be said about the axiom "be careful what you wish for"... even if the grammar is poor. If you're going to wish or hope or pray for something, make sure you prepare yourself for what happens when you actually get it.

I always thought that I wanted "the American dream"--a nice house, nice stuff, nice neighborhood. Easy and predictable. It doesn't have to be glamorous, just... stable, easy, conflict-free. Easy.

And did I mention that I wanted life to be easy?

But life with Roo has taught me something. Easy is boring. Easy doesn't really get you anywhere. Hard is beautiful and full of growth and opportunities and richness and... LIFE. Hard is where you lean on God and really experience His love. Hard is where you help others experience His love.

So I started praying for hard.

I pray for our faith to become visible to our kids, for them to really see why we need God in our lives. I pray that God will draw me and my family to Him. I pray that we will be challenged to grow, not allow ourselves to just get comfortable. I pray that He will lead us into new, exciting, HARD things. Not bad things, necessarily. I'm not praying for someone to get sick or for a financial crash in our family. I'm just asking God to move us out of our comfort zone, to help us let go of our desire to be safe, and to give us the opportunity to truly rely on Him.

And He in turn has been preparing my heart. He has something in store for us, I know it. It is going to be beautiful, and quite possibly hard. I have no idea what it is, but I am... hmmmm... what's the word? Excited seems naïve. Anxious is too negative. How about prayerfully anticipating?

In the meantime, there was a day. This one day last week. It was hard. Multiple calls from the school hard. Sick kid hard. Ruined plans hard. Parenting angst hard. Family drama hard.

And I found myself on my knees. "God, why is this so hard?"

And then I laughed. Out loud. A real, actual lol. Because I knew that this was just a glimpse of what hard could look like. This was a very simple opportunity for me to see how I might react when something hard really does come along.

And you know what? It threw me a little, and I'm not saying it was a great day... but I'm pretty happy with where I ended up. Did you catch it? I said it already. I was on my knees. It didn't take long before I realized that I didn't have the strength to handle it myself. And I went right to the One who could.

Over the past couple of years, this has become one of my favorite Bible passages:
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Corinthians 12:9b-10)
It took me a long time to really understand why Paul would say that he boasts about his weaknesses, but I get it now--or I'm learning to get it, I guess. Because when I am weak, when I am truly at the end of myself and can stop pretending that I can handle it... that's when I can turn it over to God. And sometimes we act like "turning it over to God" is the same thing as giving up... but it is just the opposite! God is stronger--he is ALL-powerful, mighty, and in control. When life gets hard and I am faced with my own weakness, I can finally let go of my silly sense of control and rely on God's strength--and THAT is something to boast about.

So I got what I prayed for that day, at least a little bit. And for just a minute, I changed my mind. In fact, it made me remember a few years ago when I was really and truly in the depths of depression. I told a friend of mine, "I know that I will get to the other side of this, and I'll look back and see how much I've learned and how deep my relationship with God has become. But I don't care. I don't want to be deep and joyful. I want to be shallow and happy." Yep, for a minute last week, that's what I thought. I take it back, I don't want hard, I don't want out of my comfort zone. I want shallow and happy.

But no. No, I need depth. Because do you know what happens to people who choose shallow and happy? They get tough calls from the school. They have parenting angst. They have family drama and sick kids and tough choices. And it throws them for a loop. But deep people, they know that when they are weak, they are actually their strongest.

Today I am delighting in my weaknesses and difficulties, because they come with a mighty dose of grace and strength, and that is exactly what I prayed for.

Wednesday, May 14, 2014

Milestone Alert: It's bedtime!

You've heard me say a million times that I love celebrating every little milestone with Roo. Thanks to that magical extra chromosome, we get to enjoy each phase for a little longer and relish each step in a way that parents of only typical kids don't understand. Like last week we saw a play where the actors were dressed as jungle animals, and he said, "Elephant!" and "Monkey!"--and he was right. I was flabbergasted! (I'm pretty sure that's the first time I've used the word "flabbergasted.") Of course, tonight we watched "Madagascar 2", and he insisted that the hippos were cows and the zebras were horses... but really, that just makes sense.

And then there are the big milestones. They are bittersweet. They are a loud proclamation that one phase has ended and a new one has begun, that my baby is growing and changing and not so much a baby any more.

Last week, I decided it was time to tackle a bigger milestone.

It was time to get Roo out of his crib and into a twin-size bed--more specifically, the bottom bunk. He was thrilled! It was a big moment... and also a short-lived one. Here's Roo at 7:30, going to bed...

(I love how excited he is!)

And this is Roo 2 hours later, at 9:35...

Don't you love how peacefully he is sleeping? 

It turns out that the "big boy bed" is just.too.darn.exciting at bedtime. So we had to move back to the crib. And that continues to be the trend. Every night I put him to bed in the bunk bed, and every night I give him about 2 hours before going back to the crib. He's not crying, and he's not getting out of bed too much (usually about once a night), but he just won't sleep!

Fortunately, nap time has been going more like this...

Possibly because he's not sleeping well at night, he passes right out at naptime.
We did have one bedtime exception. On Sunday night, after several nights of being up late, an extra day of school last week, and a big weekend, he was just plain worn out. I put him in the bottom bunk, and he went directly to sleep. On Monday morning I got up early and went downstairs for a little quiet time... and when I came back up I heard a noise in the boys' room... and found this...
I think it is hilarious that he got up out of bed, got a toy, and climbed back in! I'm pretty sure he knows he's supposed to be in the bed, but just couldn't help himself.
This kid is trouble. And also adorable. Which is really the main cause of the trouble. How can I be mad at that face?
So maybe we haven't fully made it to this milestone. But we're getting there. 

Monday, May 12, 2014

Monkey loves his Mama

God has given my sweet Monkey a tender and amazingly sweet heart. He has not, however, given him a very sneaky disposition... something that he may want to work on, since he intends to be a spy when he grows up. Let me tell you a little bit about my week leading up to Mother's Day...

"Mommy, for Mother's Day, I think you should get to sleep in. Just sleep in as long as you want. That's what you should do, because you deserve it."

"Mommy, are you going to sleep in on Mother's Day? Oh wait, we have church that day, so you can't. Well, you should sleep in on Saturday, then. You definitely need to sleep in on Saturday. Like, really sleep in. On Saturday. This weekend."

"Mommy, are you going to sleep in on Saturday? I really think you should. I need you to sleep in. On Saturday. For Mother's Day. Also, I need to give you your Mother's Day present a day early. Is that OK?"

"Mommy, I'm going to give you your Mother's Day present a day early. And I'm not going to tell you what it is, but I'll give you a hint... It's something that we do every day in the morning. But that's your only hint. Also, you're going to sleep in on Saturday, right?"

Friday morning
"Mommy, what's your favorite cereal? I don't mean, like, of all the cereals in the whole world. I just mean... you know, if you had to choose from the cereals we have here at home... what would you say is your favorite cereal from those?"

Friday night
"Good night, Mommy! Don't forget to sleep in tomorrow! No matter what. You need to sleep in until at least... like, 7:00. OK?"

And then there was this...
Saturday morning - 6:08 AM

Me (groggily): Hello?
Monkey (whispering loudly): No! Mommy! You're supposed to be asleep! Remember?
(Why exactly was there knocking, then?)
Me (looking at the clock): What's up, Buddy?
Monkey: I'm trying to give you your Mother's Day present.
Me: But... but it's too early, honey. Go back to bed for a little bit and THEN give it to me, OK?
Monkey (tearing up and on the verge of a meltdown): But, Mommy, I already got it ready.
Me: You did? That is so sweet, hon.
Monkey: Will you PLEASE go back to sleep now?
Me: I will IF you will go back to sleep after you take care of my present.

So much for sleeping in. But a few seconds later, that sweet boy left a bowl of Cap'n Crunch and an apple sitting by my bed, along with a poem and a picture that he made (which included his handprint). I might have had to get up early, but it was worth it.

But Monkey's Mother's Day celebration wasn't over yet. On Sunday afternoon he came running inside and announced, "Mommy! I have another Mother's Day present for you!"

Oh, that is so sweet. What did he think of now?

"I just found it! Outside! It used to be alive--well, it used to have something alive living in it!"

Um... I suddenly don't think I like the direction this is headed.

It turned out to be a shell that he had found in our yard. Of course. You know, being that we live in Ohio, not anywhere near a body of water. That makes perfect sense. But hey, it wasn't a snake skin... not that that's immediately where my mind went from his description or anything. I'll gladly take a shell of unknown origin.

Happy Mother's Day!