The eve of the first day of school.

Tomorrow is the first day of school.  Sleep isn't coming easy tonight.  And neither are the words for this post!  I have typed 17 sentences, and backspaced over each one!  I HATE complaining and I'm afraid this post may come across that way.

But, here's what I want to say... tomorrow is the first day of school.  If you are kissing a child good-bye, taking some cutesy picture of them holding a frame, and sending them off to school, with a lunch that they will eat - by mouth - you should take a moment to consider how lucky you are.  If you are amazed at how big your child has gotten, and how much they've grown, you are lucky.  If, when you completed the health form in their back to school paperwork, you got to answer mostly "no", you are lucky.  I mean it, you are truly blessed.

And we are lucky, too.  We have two eager to learn boys, who I will get to walk to school tomorrow.  Murphy is starting 5th grade and Cooper is starting Kindergarten (do you hear the angels singing?).  And I am not sad.  Not one little bit.  They are growing, thriving, easy loving and learning kids.  What's to be sad about?  I knew when I had them they were going to grow up.  The alternatives to growing up aren't good, after all.

And while I know we are lucky to have Harlie (in every sense of the word), it sucks more than I can say to not be able to send her to school tomorrow.

Yes, one could argue, "it's better for her."  And that's probably true.  And, exercising regularly, eating more vegetables and drinking less alcohol is better for you, too.  But does that make it any easier to do?  No.

The bottom line is that she cannot attend school for health reasons.  And you know what?  That sucks.  Plain and simple.

I might have forgotten to mention that back in June when Harlie had her pacemaker adjusted, I asked her cardiologist about her attending school.  I knew in my heart what he was going to say.  But, I asked anyway.  He asked me how she's doing at home, learning-wise.  And she's doing well.  One could make a very strong argument that she has done better at home academically, than she did in school.  So, it's simply not worth the risk.

Medically, nothing has changed from last year.  While she can handle small breaks from the oxygen, her lungs are no better.  And one bad sickness could mean serious consequences for them, for her and for us.  With limited alveoli producing oxygen in there, you can't risk losing any more.

I have to remind myself that this decision isn't mine to make.  I cannot possibly tell you how difficult that is.  Every single day I want to figure out a way to make it happen.  I want her to have SO MUCH MORE.  Keeping her home feels like I've given up.

Some days it is so hard to be her mom.

I just looked back at the last few years of "first day of school" posts.  It made me sad.  So much hope I had.  So much effort we made to get her tiny little butt to school.  And for what?

And, is this forever?  Will she never go to school? What about school pictures?  The yearbook?  It seems wasteful to buy her a yearbook with a bunch of kids that she never even met.  And do I take her to school on the day of school pictures?  The thought of going into that school with Harlie, and it not being for school brings tears to my eyes just thinking about it.  And what about those little frames where you put each year's school picture in it so you can see how they've grown?  It would be mostly empty for her.  Which means I shouldn't get one for her.  Which means I shouldn't get one for the boys, either.  Which makes going for school pictures seem kinda stupid.

Ugh.

I don't even know what grade she's in.  Technically, she's starting 2nd grade.  But, that's kinda bull, because she didn't get any science or social studies last year.  And she still doesn't know how to read.

We went to the pool today and I saw girls that were in kindergarten with her the first time she started (she repeated KG).  They are now starting 3rd grade.  And they are so big and grown up.  And it's like Harlie is frozen in time.  She's still so tiny.  She still struggles to talk (although she is talking SO much more and we are now able to understand SO much more - which is fantastic and never for a moment do I take that for granted, I promise you!).

Anyway, it just feels so weird.  But, like I said, we are lucky to have her.  That is true, and I hold on to that every day.  She is so funny.  And smart.  Even though academically, you might not be able to see it, or measure it.  Just tonight when Murphy and I walked Rooney, he was telling me a story about Harlie saying something.  And he was laughing.  He enjoys being able to understand her just as much as I do.  And he thinks she's funny, too.  Just because it will put me in a better mood, here are a few things that she says that is really funny the way she says them...

1. She gives her baby doll to Murphy and/or Cooper and says, "you take care of the baby."  The other day I was feeding her and she signed "full" and "sick."  I said, "You're not sick!  Mommy's sick."  I was just joking around.  Time passed and I went upstairs and heard Harlie in Cooper's room telling him he had to take care of the baby.  He said, "I don't want to - ask Mommy to do it." Then Harlie said, "She can't.  She's sick."

2. If she asks for something (like to get on the computer) and we say, "in a minute" and more than a minute goes by, she says, "now?"

3. She keeps on telling us that she wants a "pink creature power suit" (from the show Wild Kratts).  The first time she said it I had NO idea what she was saying.  So, I called Cooper in and asked him to translate.  He looked at her and said, "What Harlie?"  She "said" it for the 400th time (1st for him) and Cooper looked at me and said, "She says she wants a creature power suit." and he turned around and ran out of the room.

4. I crack up every time she calls "Boys!" to Murphy and Cooper (like we do).

5. It's both wonderful and sad when she says, "I don't want oxygen."  I love hearing her talk, but hate that she has to have it when she doesn't want it.  The other day Brandy said her sats were 81 (I was in my office and Harlie was in the living room) so she went to go get the oxygen.  When Harlie saw the tubing, I overheard Harlie say, "I don't want oxygen." And then Brandy said, "But you need it." And then Harlie said, "But, I'm 81."  She looks at the pulse ox and looks at those numbers.  She never ceases to amaze me.

6. The other day she had her baby in her hands and she looked up at me and said, "I love her."

Nope.  Not going to take anything for granted when it comes to her.

Like when she made me get down the double jogger so she could take her baby.  How could I say no?

Or the time she tried to hula hoop with the big girls at a pool party.

I love the way she plays with Rooney.  Although, he might not always agree.

Minutes later I saw them having a heart to heart moment. While she was wearing swimming goggles.

And how could I not feel lucky when I get to see this...

Every time she rides her bike, I can't stop smiling.  She works so hard.  And she really is very happy.  I think this was her first summer doctor/hospital/surgery-free.  And she will be EIGHT years old this month.  Isn't that crazy???

Anyway, I will fight the sadness.  And I will continue to choose to find a happier perspective.  For as long as I possibly can.

Thank you for your love and support!
~Christy xo