Snow Day!

First, I want to say thank you to those who still check this blog for updates.  I really feel like I've been letting you down lately.  It's just been such a rough couple of months.  Time seems to evaporate so quickly.  And the kids have barely been to school since winter break in December.  It's pretty much impossible for me to accomplish anything with them around.

Anyway, I'll start with something kinda quick, to get me back into things...

It snowed in Richmond.  Again.  And again, we had more snow days - with no school.  This time was the first time that most people didn't work.  So, it was really fun to have Tom around.  And our lovely friend Dale came over to hang out.  She got us motivated to go sledding.  Thank you so much Dale!

And thank you to everyone who gave us winter hand-me-downs!  We could never have pulled this off without you!  I think everything the kids are wearing were given to us!

Harlie was happy to be out.  I was SHOCKED that she wanted to go sledding.  We took her off the oxygen to go down.  The walk up required a shot of it when we got to the top.  So, Tom carried her up the rest of the time.  We ran into a bunch of neighbors at "the Rivers Edge hill."  We had a blast!

Happy Harlie!

Me and Rooney.  He's never far from me.

Me and Cooper about to go down the hill.
Rooney might be a little jealous.

Cooper and Murphy.
The snow was really coming down!

Me and Lindsay.

Me and Dale.

Being a kid.

Heavy snow!

Dale and Harlie.

Dale and me.

Me and Harlie.  And Rooney, of course.

Tom and Harlie with her hands up!

Me and Tom.

We had so much fun!

Harlie even went down solo once!  After a little while, she was done.  So, she sat in the truck with Tom's phone (and her oxygen) and took off most of her clothes.  Kids are so funny.

We really had so much fun.  And I am so thrilled that Harlie was a part of it.  I try not to think about the future too much - but I do really hope that one day, she can come off that oxygen.

Tom just took the boys to Wintergreen to go tubing.  Maybe we'll have to see if we can pull off taking Harlie.  I think it's pretty clear that she would love it.  I just don't know how to work the logistics of the oxygen.  I'll have to work on that...

Today has been another lazy, snow day with the kids home.  But, Cooper made my day.  Harlie told me (signed and tried to verbalize) that Rooney was dirty and needed a bath.  When I went to look at him, it appears that he's been colored on with a marker.

Me:  Cooper, did you draw on the dog?
Cooper:  Not today!

I have been laughing about that all day.  And he said it with pride, too.  Too funny!

More soon!

Much love,
Christy xo

Arizona

Another long silence...  In my defense, the kids have only had ONE school day since January 17th!  Crazy snow days.  I wish I could say I've been having fun with the kids.  But I would be lying.  Honestly, I don't have a lot of energy left over for "fun" with the kids.  And the boys want to go out and play and Harlie doesn't (and probably shouldn't).

Here are the photos I took during the brief eight minute span that Harlie spent outside during our first snow last week.  Seriously, eight minutes and she was done.  I could barely get her to stay still for the last photo.

Cooper

Cooper "sledding" down our driveway.

Rooney.  He eats the snow.

Cooper, Harlie and Murphy.

Yes, the kids were out of school for FOUR days for this snow "storm."  You can still see the grass!  Too funny.

We got more snow last night (Tuesday) and they were out today and they are going to be out tomorrow.  All the excitement of snow days are gone.  When I told Murphy he was like, "Oh, okay."  The first night we were like, "Hey! Guess what you guys have tomorrow...." asked in an excited, high pitched, tone of voice.  Now it's, "Hey, no school again tomorrow."  Told in a monotone, someone kill me now, tone of voice.

I have more updates on our day to day life I still need to write about.  I've been struggling with what to do with Harlie, medically speaking and what to do with her schooling.  But I think I am finally getting somewhere.  I'll have to save that for another post.

I started working a part-time job.  And trust me when I say PART TIME.  I am taking that term to a whole new level.  Especially with all of these freaking snow days.  Luckily, my boss is very flexible and understanding.  Thanks Bill! (He's Bill Jeffries, who is the creator of The Harlie Crew you see on the left side of my blog.)

But, for now I want to write about my trip to Arizona to see my friend, Ann and attend Jack's celebration of life service.

I left on Thursday the 16th.  Somehow we managed to all arrive around the same time.  I met my friends Sarah and Susan (from the pictures from my last post) at the airport.  We rented a car and drove to Ann's house.  I've seen pictures of her house on her blog for years.  So, I felt comfortable in her home instantly.  We all went to lunch, including another friend of Ann's (Erin) who lives there.  Coincidentally, Erin's daughter had a trach in the past (I think that's how they met).  After our late lunch, we hung out at Ann's house in the backyard by the fire.  We got to spend a lot of good, quality time together, which was great.  Then we (Susan, Sarah and I) went and checked in our hotel.

It's a little bit of a challenge to get used to the time change.  So, I woke up earlier than the girls.  So I went for a run.  I was a little nervous because I only packed a pair of running shorts, a tank and a visor.  When I looked at the weather from home it seemed like it was in the 70s during the day and cold at night.  Well, I checked the weather on my phone and it said 36!  Ugh!  But, once I got out there in the sun, it really was great.  It was perfect running weather.  Despite traveling the day before and drinking the night before, I had a great four mile run!  Even though it was a day early, that was my run for Meg Menzies.  Jack's service was on Saturday, so I knew I couldn't run that day.

My scenery during my run in Chandler, Arizona.  

On Friday afternoon there was a memorial hike for Jack.  We got brunch and hung out until it was time for the hike.

Sarah, Susan and me.

Then we hit the trail.

We stopped for a break here and got in a circle.  We took turns telling each other who we were, how we knew Ann and Jack, and shared some thoughts or memories of Jack.

It was an emotional time for all of us.  Pretty amazing to hear how much Jack affected those who knew him and even those who didn't.  There aren't a lot of people in this world that can say that they never walked, talked or moved purposefully, yet did so much for so many people.  I felt so honored to be there and to have Jack in my heart.

The scenery was beautiful.  Pictures just don't do it justice.  Especially when I'm taking them.  Sarah took the sunset one.  Not me.

After the hike, we went to Erin's parents house where they hosted a wonderful mexican dinner for all of us.  Their house is gorgeous and has a beautiful backyard with a pool.  It is the perfect entertaining house!  I wish I had taken some pictures!  Ugh.  Anyway, someone at least got this picture.

Standing: Whitney, Sandra and Ann.
Sitting:  Me, Sarah, Pat (Erin's mom), Erin, Susan and Carrie

All of us (except Pat) have or had a trached child.  And me, Sarah and Susan are the only ones whose children are still trached.  I can't tell you how awesome it was to be surrounded by trach moms.  We were instant friends, or as Ann affectionately refers to us, sorority sisters.

Saturday was Jack's celebration of life.  It was difficult, and beautiful.  One thing I've learned about me is that I am not really good in serious, somber situations.  I seek out humor to get me through.  And sometimes that can appear as inappropriate from someone who doesn't know me.  Once we sat down, I was a little overcome with emotion and to seek humor (albeit in a sick way) I said to Sarah, "When it's my turn, I want you to come."  And then Sarah started to cry.  I told her I was sorry, I didn't mean to make her cry.  She said it's sad that I have to have those thoughts.  (But, when you're told that your unborn child has a 5% chance of survival, has heart defects, lung defects and airway issues, it's unavoidable.)  Then she told me she would play the piano and sing.  And I said, "Thanks!  That would be awesome!"  And we both smiled.  

I know that sounds totally weird.  But, that's just the way things are when you live a weird life.  I really just try to go with the flow, you know?

The service was really beautiful - as far as those things go.  And it was definitely difficult for a lot of us.  Clearly, I can visualize myself in Ann's shoes.  And that didn't help.  I think it's safe to say that most cried on and off throughout.

A lot of people spoke and they all did a great job.  Jack's sister spoke and was funny and adorable and so sad at the same time.  I think a couple of his cousins spoke and they did a great job, too.  One of Jack's doctor's from years ago came to attend the service from Los Angeles. He spoke as well.  As the parent of a special needs child who sees a lot of docs often, I was appreciative of him caring enough about Jack and Ann to be there.  Some of these docs mean a lot to us and our kids.  And we can get attached.  I love that he felt the same way towards them.  And Ann and Mark spoke. I have so much admiration for them.  They did great and wrote beautiful pieces.

Ann had stones for us to take to remind us of Jack.

I took an "Onward" one.

After the service, we walked to the graveside service.  I was okay until I saw them hold his ashes.  I couldn't take it anymore.  And I wasn't alone.  It was such a heartbreaking sight.  It's so not right.

At the end of that service we sang When Irish Eyes are Smiling.  And I got to hear Sarah sing - and she has a beautiful voice!

After that, we went back to Ann's house for a reception.  Is that what you call it?  Anyway, they had great food and a wonderful set up in the backyard with heaters.  It gets cold there at night!  But I love how they still sit outside.  It's great.

We ended up eating two meals there and hanging out, talking, laughing and enjoying our time together.  What a wonderful group of trach moms!!!

Sorority Sisters.
From left to right: Sandra (Texas), Whitney (Colorado),
Erin (Arizona), me (Virginia), Ann,
Carrie (New Jersey), Sarah (California),
Jenny (Missouri) and Susan (Washington).

Ann is amazing and I think it's obvious how much she means to all of us.  Every single person in that picture will tell you that she was instrumental in our survival of this life as a trach mom.  What a gift to all of us.

The next day, Sunday, Ann had brunch for all of us who traveled from out of town.  I meant it when I said we got some good, quality time together.  Ann's family did an awesome job with the food - it was all so good!  And it was a beautiful spread, too!  We really felt special being there.

Then we gave Ann a break from us.  A few of us went back to our room and hung out.  We had the Patriots vs. Denver game on and I got to watch the Patriots lose.  Awesome.

By dinner most had left to go back home.  So it was just me, Susan, Sarah and Jenny.  We went to dinner and got these in our fortune cookies.  I can't remember what Susan's was.

Sarah's, for Jack, of course.

Weird, considering I was about to take a flight East!

This was Jenny's - and she had never
met the three of us before this trip.  

Weird.  

Then we went back to Ann's to have one last drink, and say goodbye.  :-(

Then Sarah and Susan drove me back to the airport (my flight was at 11:45pm).  And we had to say goodbye.  :-(

So sad.  

Despite the difficulty of the situation, it was wonderful to spend time together and meet more of our "sorority sisters."  Good people.  Wonderful friends.  I'm truly blessed.  

Much love,

Christy xo

Snow Day

On Monday, we got a little snow.  And a little snow in Richmond usually means everyone freaks out.  Now don't get me wrong, I don't like to drive in it either.  But, this didn't even stick to the streets.  And it was 40 degrees and sunny by afternoon and the snow was all gone by nightfall.

But, to the kids, it doesn't matter.  It was snowing and that meant they could go sledding.  Last time it snowed it was the same way - not enough to make sledding possible.  But, try telling the kids that!  They just don't get it.

So, on Monday, I took them anyway.  Had to let them see for themselves.  I will say, I'm pretty proud of myself for taking all three, and a neighbor, to the hill by myself.  It was a little tricky since I only had two pairs of boots for three kids.  But, I found a pair of boots that were too small for Murphy - yet still too big for Cooper, and put them on him anyway.  He didn't care.  Even when his boot came off while sledding.  Nothing slows that kid down.

THE hill.  Pretty pathetic, I know.

I'll give her this, she walked up that hill all by herself every time.  

She wasn't moving - waiting for a push. 

Still not moving.  Still waiting for a push. 

As you can see - there's a lot of grass.  Which meant that I had to PUSH them down the hill.  Sometimes even running after them and having to push them several times to get down the hill. They didn't care.  Well, Murphy and his friend got a little bored pretty quickly.  But, Harlie and Cooper didn't care.  It really doesn't take much to please them.  I really need to work on getting more fun in their lives!

So, back to them being out of school... First of all, school was delayed two hours BEFORE it even started snowing.  The second it started to snow, it was canceled.  I looked at the weather forecast and it was going to be over by like noon or something - and that it would be over 40 and sunny by the afternoon.  Clearly, it wasn't going to ice over.  It wasn't sticking to the streets.  And school closes.

Now, I understand that this is in no way the same thing.  But, I couldn't help but think of this article I read a while back...

These kids are walking to school.  To get an education.  That they clearly WANT.  Apparently more than the average American student.

Makes me feel like we're a bunch of wimps.

Granted, I did drive the 2-3 blocks to get to the hill to go "sledding."  But I'm going to blame that on the lack of appropriate footwear for Cooper (and the oh-so-clear streets that I mentioned earlier).

Okay, more later!  Thanks!
~Christy

Snow

It really seems like a waste to have to buy snow gear for fast growing children when it only snows once or twice a year.  So, I didn't buy boots for Cooper.  Okay fine, I never even thought about buying boots for Cooper.  And if it weren't for my friend Jennifer, my kids would have nothing to wear in the snow.  She gives me all her kids hand-me-downs or buys them stuff when it's really cheap and off season.  Me?  I walk right by those racks.  I'm easily distracted by shiny things and bright colors.

Anyway, there was no way Cooper wasn't going out in the snow.  I searched everywhere for boots he could wear.  And the only thing we had was Harlie's boots.  Yes, they wear the same size.  And yes, the boots are pink.  He pitched a holy fit about putting them on.  But, it was either pink or stay inside.  He chose pink.  I think he thought it was worth the sacrifice.

Nice boots, Cooper!

Hurry!  Take a picture of the snowman before he melts!

Harlie doesn't do snow.  She watched Murphy build this snowman from the kitchen window.  She was not a fan of his hat.  After the boys came in, she actually put her boots on (still warm since they were pulling double-duty) tried her best not to touch anything, and switched his hat.  Then she walked right inside and that was that.  

The next morning (or maybe it was the morning after that?)  she got up out of bed and went straight to her bedroom window.  There was no more snow.  It had all melted.  And she was heartbroken.  She cried for a while - way longer than she usually does.  And it was a sad cry.  Aw, she's like me!  She loves how it looks from inside a warm and cozy home.  But she doesn't want to go rolling around in it.  

More later!  

Murphy, the Artist.

Friday afternoon, Murphy decided to decorate his room. I'll take part of the blame. I've never decorated his room. Isn't that shameful? Cooper's isn't decorated, either. And trust me, it's not because I don't want to. I would love to! But, until things pick up in the economy, it just can't be a priority right now. So, I suppose Murphy took matters into his own hands. Literally.

He came downstairs and was so excited to show us what he did. We went upstairs and this is what we found (you can click on the pictures for close ups)...



Earlier he had taped these drawings all around his room. He decided to group them all together. They are all monsters. I can't help but wonder if this is some sort of red flag. Or just a five year old boy's vivid imagination?

Ever since Halloween, he has been fascinated and totally obsessed with monsters. Each Tuesday he goes to the library with his class and gets to check out two books. Every single week since October, he has come home with at least one book about Halloween. Even through December and Christmas!

When I went to his class party right before Christmas, they were making gingerbread men. Murphy made his a gingerbread monster. When it snowed the first time, he drew a snowman monster. I haven't been saying too much about it, thinking the phase would end. Okay, hoping the phase would end. Anyway, back to his decorations...

Here's the door to his bedroom...



His light switch...



His clever spider and spider web... I must admit, I'm pretty darn impressed with his imagination and use of materials (that's medical tape, of course).



Over his bed...



A close up of over his bed...



Next to the window...



One in the middle of the wall...



And my most favorite of all...



You have to admit, they are pretty darn cute bats (and spider). All of them are clearly happy and smiling. And I'm very impressed that he didn't feel like he messed up at all. Like, you know when you're writing on a poster board and you know you only have one shot to get what you're writing right, or the whole thing's going to look like crap? Well, he drew exactly what he wanted without messing up. Or at least it appears that way to me. And I got to hand it to him on the bat hanging upside down. He's smiling and the smile is going in the right direction. I think that's pretty darn impressive for five years old. But what do I know?

He used dry erase markers from the easel downstairs. And he returned the markers to their rightful place when he was done decorating. After Tom and I got our laughs out, we told him they were wonderful bats, but please use paper next time. We can't just go writing/drawing on the walls! We have some paint left over, so that's not a problem. But I think I'm going to let them stay. I cannot tell a lie, I like the bats. They're so darn cheery. Even with red eyes!

And I think we got about a foot of snow yesterday. Nuts! Here's Tom and Murphy headed out to get a jump on shoveling. It continued to snow for hours after I took this picture!



Oh, I forgot to add that on Saturday after we tucked him in, we heard some movement in his room. When I peeked in he had put a chair right in front of his doorway. I asked him what he was doing and he said, "trying to make my room into a cave." I see... Okay, then. Goodnight.

Hope you're all nice and warm...

Thanks!
Christy