Interesting day.

Today was a great day for Harlie at camp.  This camp was two weeks long, and the last day is tomorrow (Friday).  The kids and staff have been GREAT with her and I really feel that it has been a wonderful experience for her.  Yesterday (Wednesday) she was all hot to trot to get out of the house.  And it wasn't even 9am yet.  We had to keep on telling her we had to wait.

When I picked Brandy and Harlie up today, Brandy said she had a great day.  They had a "field trip" to the library, which is right next door.  Brandy got some video (which I still need to upload) of Harlie dancing the hula with some friends.  It was so cute to see her having fun with girls!!!  Yay!  She's socializing and having fun with her peers!  Hallelujah!

And another thing that I thought was funny - Harlie picked out her own outfit today (a dress).  And the two girls that she was dancing with have the same dress and have worn it to camp.  And they've commented that they have the same one.  I wonder if Harlie realizes it too, and wanted to wear it because of that.  Let's just go with that.  Because it would be pretty cool if she was influenced a little by her peers.  Maybe, just maybe that will happen with eating.

So, there is this one boy who apparently loves Harlie.  He sounds like he's a pretty funny kid.  One of the first days at camp, he went and sat next to Brandy and said, "So, what's new with you?"  So, today when the staff told him to do something (like, "E, eat your snack.") he said, "Wait! I just want to talk to Harlie's mom!"  He clearly thinks Brandy is her mom.

And then he said to Harlie, "I love you, Harlie.  Even though you held us up."  He was referring to how she was pretty slow walking to the library, even though she didn't technically hold them up.  Apparently he was waiting for her.

And then later he said, "I still love you and I'll always love you."  Oh, this kid is cracking me up!

Brandy said that there is another little boy that really likes Harlie, too.  Today one of them (E) was the line leader and the other boy was the caboose.  They both called Harlie to stand next to them in line.

I can tell you two things:

1.  I would never have guessed in a million years that she would have a boy telling her he loves her at this age.

2.  My heart swells at the thought that these kids have grown to love her over the period of two weeks.  I know how awesome she is - but I wasn't expecting for kids her age to realize it.  Tears of joy, my friends.  Tears of joy.

Tomorrow they are having an ice cream party during the last hour of camp and families are invited.  I can't wait to talk to these kids moms to tell them how great their kids are!

Then, in the afternoon, Harlie's new elementary school had an ice cream social for rising kindergartners. It was held in the gym so it was super loud.  Which meant that you couldn't hear Harlie's communication device.  And she wasn't feeling social, at all.  So, that was awkward.

And even though I got to hear how loved Harlie is earlier today - it was STILL so incredibly hard to see how other kids look at Harlie for the first time.  It's not that I blame them.  They've never seen a trach before - they have no idea what it is.  Her eye is probably something they notice pretty quickly.  They just need a moment to take her in - and I get that.  But it is STILL so hard to watch.  And I don't think she notices that yet.  How is she going to feel when she sees that reaction, too?   I am so afraid of what that will do to her.

Anyway, some moms organized a group of older elementary-aged kids to go around and introduce themselves (how cute is that?!) and it was really hard (emotionally for me, I mean) to have to tell them what she was "saying" since they couldn't hear the device.  I had to say, "She just said her name is Harlie."  And something about that just made me want to cry.

And then I met Harlie's teacher.  And tears started to well up - and I had to choke them down.  It was all just so real.  So scary.  And it breaks my heart that I don't know if she's excited about kindergarten or if she even knows what it is or that she's going there this year.  And I thought to myself - how many conversations am I going to have with this teacher (who is apparently super awesome - seriously, I've heard nothing but great things about how great of a teacher she is) and what are those conversations going to be like?  Good?  Bad?  Ugh.

I just can't believe that she's going to go to kindergarten and I can't believe that she's almost FIVE years old.  I have been thinking so much about the past five years and all that's happened.  All we've been through.  And all the people that we're going to meet that have no idea.  There's such a comfort with being around people who know - people who get her - and me - without me having to do anything.  And I just feel like we are so vulnerable now.  It's weird.  And scary.  And I guess I'm thankful that Harlie doesn't feel any of that yet.

I introduced Brandy to her teacher and we talked briefly about where to sit Harlie.  Her teacher told Brandy that they have a spot all ready for her (Brandy, I mean).  I can't remember if I told you or not - but this school has "pods" meaning that you walk through one door, into a big room - and off that room are the doors to the kindergarten classes.  So, if Harlie is sitting close to the front of the room, Brandy can be in the outer room - still able to hear and see her - but not be right on top of her.  And she said that she saw the book about Harlie (another post, sorry!) and it all just made me think about how much work and effort so many people have to put in for Harlie and for us.  I'm so thankful for all of you that go out of your way for us - but I can't help but wish that no one had to.

And then, a mom came up to me to introduce herself.  She said her son had introduced himself to Harlie earlier and that he went to her and told her there was a girl with a hearing aid, like his sister.  So, we started talking about her daughter's hearing issues - when the mom said that her daughter has Goldenhar Syndrome.  Whoa!  Say what????

Her daughter goes to the same school, but she's going into third grade.  Her daughter has the same ear as Harlie's left one and she wears a BAHA (bone anchored hearing aid).  But she's not trached and never was.  And she eats and talks.  I hope they get to meet!

Anyway, after less than an hour, Harlie was ready to go.  I think it might have been a little loud for her comfort.  And probably a little too socially overwhelming.

Well, that's it for now.  More later!
Thanks!
~Christy

Eating and Talking

Hello.  Yes, I'm still alive.  It is so hard to finally break the silence after I haven't blogged in a while.  And when I don't blog it means I'm really busy, feeling crappy, or a little bit of both (sometimes a lot of both!).  And I suppose it's been a little of both this time.  I'm trying to enjoy the summer - but, frankly, have been too busy to do that.  And I think I'm tired of thinking about Harlie starting kindergarten.  

The whole eating by mouth thing is REALLY stressing me out.  I don't see how in the world Brandy is going to be able to feed her by mouth at school - or at least in the cafeteria at the same time as her classmates.  Harlie has decided to go through another very uncooperative phase in eating.  It is so frustrating.  I don't understand what makes her do this.  You would think after YEARS of this that she would realize that we aren't giving up.  She isn't going to win.  And the food will get in her tummy one way or another - so just eat it already!!!!   Ugh.  

There is a small sliver of hope that she will be in a setting with kids eating and she will want to eat, too.  But, I don't think that's going to happen.  She has been in a setting like that to a smaller degree and it didn't have any affect on her at all.  She doesn't WANT to eat by mouth.  Period.  And trust me when I say that there are days I don't WANT to feed her by mouth, either.

When she is uncooperative (like she's been lately), feeding her in the cafeteria is not going to work.  Not without completely making her look just awful to her classmates.  And the thought of them seeing her like that makes me ill.  So that means that Brandy will have to feed her elsewhere.  And thinking about it just makes my heart hurt.  And it makes me wish that her jaw didn't form the way it did.  It created such a horrible chain reaction.  And I hate thinking like that.  It's such a waste of time and energy.   She was born with these challenges and that's just the way it is.  Wishing it away is pointless.  But sometimes my thoughts go there, and I have to shake my head and make them go away.  I do wish things were different.  

On occasion she'll have a great day, and she'll willingly go get a bib and then willingly get in her high chair.  (oh, how I hate writing all that when she's almost FIVE years old!)  I get all hopeful that she's hungry and she realizes that feeling and has finally learned that eating food alleviates the discomfort of hunger.  But then she won't do it again for weeks.  

And on Friday I spent all day (literally all day) in the kitchen making her food and pureeing it.  I was in there so long that my legs were tired and sore.  And then I remembered that I was going to run 12 miles the next morning.  Ugh!!  Talk about poor planning!  And all for a girl that hates to eat!!!  

Luckily, Saturday was a cool day and what a difference 10 degrees makes!  It ended up being my best run so far!  

So, Kinder Camp is going well.  Harlie seems to like it.  The kids have been really good and accepting of her.  And what really surprised me is how concerned they are about her.  They have asked Brandy a lot of questions and want to know that she doesn't hurt and that she'll be okay one day.  One little boy asked her if Harlie would die if she didn't have that thing in her neck.  Brandy said that she told him that she needs it to breathe, and let him come to his own conclusions.

They have snack time while there, but that is so close to Harlie's breakfast there is no way that she would eat then.  So, she just does something else.  One of the kids asked Brandy why she doesn't eat a snack like they do.  Brandy just told him that she doesn't like snacks.  They also want to know if she'll ever be able to talk.  

Last week Harlie's speech therapist went to camp and worked with her there, focusing on using her device to talk to the other kids.  It appears that Harlie thinks that a lot of communication (verbal, I mean) is unnecessary.  She probably thinks, why do I have to ask you for a paint brush, when we are doing a painting activity?  Isn't it obvious that I need a paintbrush?  And paint?  And paper?  

We say so many words because speaking is easy.  But, signing and using a communication device is not easy.  It's not natural.  And it takes thought and effort.  So, during the painting activity she came to the conclusion that painting wasn't worth all the work of having to use the device.  So, she quit.  

I will say that she is making a lot of progress.  She willingly went to the device (when Brandy and I were in the middle of a conversation) and said, "Brandy, I want to watch tv."  I think that is huge.  I have so much more to tell you about the device, but can't go into it now.  I have to go to sleep since I have to run early in the morning.  

More soon!

Thanks!

~Christy

Kinder Camp

This past weekend Tom and I went OUT OF TOWN - with NO kids!  Crazy stuff!  We went to Pittsburgh for Tom's 20th reunion.  I have some pictures.  But, will have to post them later.  So, I'll save that whole post for tomorrow.

Right now I want to tell you about today.

You might remember back a few months ago, Jennifer and I camped out in 30 degree temperatures to get Harlie and her daughter into a 2-week camp through our county.  Well, today was the first day.  And I vaguely remember when we were sitting there registering her for camp (frozen from the night's camp-out) seeing a question on the form about special needs or disabilities.  I don't remember what I checked.  But I do remember (I'm really not making myself look good here) thinking (okay - being afraid) that if I wrote too much about her that they wouldn't let her attend camp.  Which, is a really stupid thing to think when dealing with the county, considering they can't discriminate.  But that's what I thought.  And still thought in the back of my mind this morning on our way there.  I was actually a tad bit nervous to tell you the truth.

But, the dropping off actually went a little better than I expected.  Harlie went and sat on the carpet to play with puzzles with the other kids.  And I completed some form about who can pick her up (which totally doesn't apply when your nurse is with you, but whatever).  When I was done I went over to Harlie and told her (and signed) to have fun.  A camp staff person came over and sat down in front of Harlie and asked me how to sign "hi".  So cute.  I told her she could just wave and tell her.  I also explained that she can hear her, she just can't talk.  Then I put Harlie's communication device in front of her and asked her to tell the counselor her name.  Of course to make her do it, I had to take away the puzzle she was playing with.  It seems we do a lot of "bribing" to get her to cooperate.  But, she did.  The class was a bit loud, so it was hard to hear her device over everything.  Which reminds me, I have a TON to tell you about the device and what's going on with that.  But that will have to be in a separate post.

Anyway, I was pretty impressed that the camp counselor immediately took an interest in Harlie and wanted to communicate with her.  It was also cute that as soon as I put her device in front of her a few kids came over and sat down to see what that was all about.  Another perk to the device - kids might be more interested in her and less afraid.

Then I told her and another counselor that Brandy was there and would be staying for her medical needs, so please treat her as they would any other child.  Then I left.

So, back when I was filling out that form about who can pick her up, I heard some bits of a conversation going on behind me.  A counselor was trying to call her supervisor.  Someone wanted to ask the counselor something and she replied that she needed to call her supervisor immediately.  This was before I went over to Harlie on the carpet.  And before I had a chance to talk to a counselor at all.  And in the back of my mind I wondered if the counselor was calling her supervisor because of Harlie.  I can only imagine what they were thinking.

Anyway, so I pick them up and all went well.  Brandy said they asked a lot of questions.  Harlie played just fine and didn't push or hit anyone.  Small victories.  Although she refused to participate in Musical Chairs.  I don't know if she's ever played, or not.  But she preferred to go look at a book quietly to herself.

A few hours later I got a call from the supervisor.  Needless to say, I wasn't surprised.   And for a second I felt like I was in trouble and what if she was going to tell me to not bring her back?  But, she was really nice and asked me what they could do to make this experience better for Harlie.  Wow.  Now that surprised me.  To be honest, I couldn't really answer her question.  Because I don't know.  I just want her to have a good time and be like a regular kid.  Then she told me that I could have requested a therapeutic assistant for her and they would have provided someone to be one-on-one with her and help her with whatever she needed, like communication. But, I didn't know that.  So, it's too late.  Oh well.

The supervisor also said that she spoke with the counselors after camp today and they said that Harlie participated just fine in most activities.  So that's good.  Then she said that she is going to come to camp tomorrow to observe and see if she can think of anything that would help her.

I started to be a little upset with myself that I didn't look into help for her, but then I realized that I signed her up in March for the camp, and that was before this whole "intensive speech therapy on the device" thing.  So, I wouldn't have thought of it then anyway.  But, it would have been so cool to have someone who could go around with her making her talk on her talker.  What a great environment to do that in, considering it's so similar to school.

So, we'll see how tomorrow goes.  Now I'm kinda anxious to see what the supervisor thinks.  Okay, must stop writing tonight.  I am totally falling asleep.  And won't proof it, so forgive my mistakes and/or typos!  Thanks!

More tomorrow!  Thanks for reading!
~Christy