Wednesday, July 16, 2014

Five years ago

I turned 35 on Sunday. I've never had much of an issue with age. I've joked about it--approaching 30, turning 30, saying goodbye to 30--but it never actually bothered me. But 35. Oh, 35, you make me feel old.

But I digress.

It hit me today that it has been almost 5 years since I first knew about Roo. It was at my 30th birthday party--which was actually a few weeks after my birthday--that I whispered to my best friend, "Honestly? I haven't been feeling the best... and I'm wondering... if baby number 3 might be on the way." My hubby and I were not trying--in fact, we were actively preventing a pregnancy. But God had other plans.

These five years have been an unbelievable roller coaster, from the pregnancy right on through until now. If you had told me then that I would be loving life as a special needs mama--that I would dream of one day adopting a SECOND child with special needs--I wouldn't have believed you. I truly believed in my heart that God did not make me able to handle a child with special needs. Then again, I still believe that--He chose to equip me as we went, not prepare me ahead of time.

I don't feel like I bear a large resemblance to the me of 5 years ago. But I like the me of today. I love my life. And I absolutely love my Roo.

It's amazing the difference 5 years can make.

Tuesday, July 15, 2014

Just one boring summer day

I am a big believer in free time. I don't like to overschedule my kids (though I struggle with that in my own life). I'm all for church programs and sports teams and piano lessons, and even trips to the zoo and play dates and other activities to keep them well-rounded and create memories. But I also think there is tremendous value in just being home. No agenda. No plan. And sometimes, Mommy isn't available to drop everything and solve all the world's problems--sometimes they have to figure it out while Mommy folds laundry. I think this is good. Important, even.

Do I sound a little defensive? A little like I'm trying too hard? Because I really do believe that, but sometimes I have to remind myself. Sometimes I have to say, "Remember, my heart, we do not HAVE to leave the house every day. I am NOT a bad mom just because Monkey's eyes plead with me when he says, 'I just can't find anything to DO.'"

Yesterday I was reminding myself. We are leaving for vacation in a few days, the boys had both been sick, life had been busy. I needed to catch up, do laundry, wash dishes. Monkey and Lamb were bickering, snarking. I sat them down and read out loud to them for a while, then gave them required separate play time. "You can play anywhere in the house, but not together. You cannot pester each other or ask each other questions or even comment on what the other person is doing. Play by yourself for a while, and I will let you know when you can play together."

There was eye-rolling. Followed by a little bit of moping. Maybe even a door closed juuuuuuuuuuust shy of slamming. There was silence, broken only by a sigh here and there.

I decided to make myself scarce, closing myself in my room with a big pile of clean clothes. And I wondered. "Maybe we do need to be out every day. Maybe they need me to keep them busier. Maybe I need to make them a list of things they can play. But I don't want to squelch their creativity. Do they have creativity, or have I already squelched it by scheduling too many things for them, and now they are ruined for life?"

I emerged to find the start of something wonderful, although I didn't realize it at the time.

Monkey had begun a game of "stuffed animal bowling." My kiddos have a couple of stuffed animals that are basically plush balls with faces. He was using those to knock down other animals, and was quite delighted with himself.

I lifted the ban on playing together, then went back to work.

My friends, what happened next was absolutely amazing. My two kiddos (Roo was at camp) put together their own obstacle course of fun, complete with six different stations. They used stuffed animals, empty paper towel rolls (from the recycling! no piles of unused towels laying on my kitchen floor!), markers and crayons, paper plates--all kinds of things that were laying around the house. They made six different stations of activities and games. And then they went through all of the stations together, laughing and giggling through the whole thing. They kept score of sorts, but it was sort of like "Whose Line is it Anyway?"--the points didn't seem to matter.

They laughed more than they have all summer. They created something--a whole assortment of somethings--and they worked together to do it. They brainstormed together and helped each other.

And I. was. vindicated.

Just one boring summer day. Probably the best day of our summer so far.

Friday, June 27, 2014

Just checking

"Buddy, you have got to go to sleep."

We are still trying to transition Roo to the "big boy" bed, out of the crib. He still loves it--has started to ask for it, even--but he will still lay awake in it for HOURS after we put him to bed. My tolerance level is generally somewhere between 1 and 2 hours (checking on him--and putting him BACK into bed--several times in that span) before I give up and put him in his crib (where he drifts off almost immediately).

"Night-night, Sweetie."

It was not the first time that night I had been in there to tell him to go to bed. It was not even the second or the third. I was ready to move him to the crib, but when I had picked him up (out of the pile of books that he had dumped on the floor), he had pointed to the lower bunk and said, "Bed? Mommy, bed?" I couldn't refuse.

"Mommy?"

"Night-night." (I may have gritted my teeth just a little.)

"Mommy?" He sat up.

"Buddy, please lay down and go to sleep. Night-night."

"Mommy? Night-night, love you?"

My heart skipped a beat. Every time I put Roo to bed, I walk to the door and say, "Night-night, Roo. Love you." But this time I didn't. I had forgotten the "love you."

He didn't.

I smiled.

"Yes, Sweetie. Night-night. I love you."

He laid down with his hands behind his head, his ultimate pose of relaxation.

He was just checking.

Thursday, June 26, 2014

It's a girl thing

June isn't even over, and I am already exhausted from our summer "break." Don't get me wrong--I am not complaining. I'm just amazed at how much fun we have managed to cram into just a few weeks' time. A quick trip to see some old friends (and for our kids to make new ones), VBS, ice cream, play dates, date nights for the grown-ups, and the list goes on. Big on fun, low on sleep.

In the middle of it all, we got a call from Roo's school that the local Rotary Camp (a camp for kids with special needs)--which happens to meet at his school--had an opening after a student dropped out, and they offered it to Roo. It is free.of.charge. Transportation is included. The only downside? It is Monday - Friday, 9 AM - 3 PM (no naps), for SIX WEEKS. Did I say that was a downside? ;-) Seriously, it is exciting to have the opportunity, but that is a lot for a little guy. He missed the first week because the other student dropped out partway through, and then we went on vacation; but he joined in last week, and is back again this week. He is completely bushed, but he seems to be loving it.

So Roo is gone during the day... and now this week, my sweet Monkey is at church camp (during the day) too! (Last year the big kids went to camp at the same time, to make life easier for Mama. This year, though, Lamb is going to SLEEPAWAY CAMP! For real! And the way the schedule worked out, it was better to send them on separate weeks.) So all week long, from 9 AM until 3 PM, it has been just me and my girl.

 
On Monday we did some boring stuff (grocery shopping, laundry, etc), but then hit the library and went swimming at a friend's house. On Tuesday she gathered up some spending money, and we went shopping. You've gotta cover the basics, you know.
 
 
Yesterday was the second in our series of 8 mother-daughter dates in the Secret Keeper Girl series. (There are 2 books of dates. This is the one we are doing right now...)
 

http://www.amazon.com/Great-Dates-Daughters-Secret-Keeper-ebook/dp/B004G5ZY5Q/ref=sr_1_1?ie=UTF8&qid=1403803944&sr=8-1&keywords=8+great+dates+for+moms+and+daughters
 
A few weeks ago we went to a fancy tea house to have (of course) tea, and to remind Miss Lamb that
she is a masterpiece created by God. Yesterday we had facials and talked about real physical beauty, and also proper skin care, since she is coming to the age where her skin will be changing. I had originally planned to take her to a spa to get facials for the two of us, but oh.my.word. My budget was not built for that kind of abuse. Instead, we called up a friend who sells Mary Kay, and she came to us. It turned out to be a great choice, because she could walk Lamb through the steps she needs to do to care for her skin--and Lamb said that she preferred putting everything on herself instead of "just laying there" while other people did it for her. (Whose child is she, anyway?!?)

And today we are wrapping up our girl time in one of our favorite spots: Starbucks. (Ready for some irony? Neither of us drinks coffee.) My hubby asked what we were up to today, and I told him, "We're going to drop Monkey off, drive straight to Starbucks, and stay until we have to get Roo off the bus--or until they kick us out, whichever comes first." And he gave me a look that said, "Why on earth would you do that?" But wisely he actually said, "Great! Have fun!"

No, we're not just sitting around watching the clock. We came armed with great ways to spend the time... books, notebooks, magazines, a Bible study that we are doing together, my laptop, and the best part...

 
board games. We brought Sorry, Skip Bo, a deck of cards, and, well, who knows what else is in my big Mary Poppins bag. It has been a great way to connect with my little mini-me.
 
 
Tomorrow Roo will be staying home from camp, since he is turning into a train wreck after days and days of no naps (and nights and nights of refusing to go to bed). Our girl time will be done. The laundry will need folding, the dishes will need washed, the carpets will need swept. But I do not regret one.single.minute of this week. Because yesterday she was a tiny little baby all swaddled up in my arms, and tomorrow she will be a mysterious and moody teenager, but today she is OK with--no, she craves--girl time with her mommy. And I am going to soak it up.
 
 
Library, swimming, shopping, facials, Starbucks. It's a girl thing.
 
 
 

Wednesday, May 28, 2014

Winner!

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."

INSTEAD...

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.