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

Vacation in June and an Update

So long without a post!  Ugh!  Our life is full and busy, which is good I suppose.  But, to be honest, blogging about it hasn't been appealing to me for a long time.  I have been in a crummy place for a while now.  And time.  Time is such an issue.  My office has been taken over by Harlie's schooling and the kids watching Minecraft videos.  What in the hell is up with that?  I just do NOT understand that game.  And between my part-time job (granted, very part-time) and it being summer with the kids home, it's extremely difficult to get in front of the computer.

Anyway, I'll just start talking and see where it takes me...

Vacation, June 14-21

We went on vacation to Lake Anna with my family the week after school let out.  Tom had to work most of the week, so he wasn't there much.  Luckily, since it's only about an hour away, I had nursing for the week.

It was so great to spend time with siblings and my nieces and nephews.  They are such a fun group of kids and we just don't get to see each other as much as I would like.  So, that part was great.  The part that wasn't so great was how little Harlie was around us.

When we got there (it was a big house on the lake, with a really nice boat house) we found this float? tube? not sure exactly what it is intended for, but it was perfect for Harlie.  It had a mesh bottom, so it basically became a kiddie pool in the lake for her.

In that picture she wanted to sit in an additional float, just for fun, I guess.  Anyway, this was a perfect solution to keep her cool on hot days.  Although, to be honest, it's hard to relax around water with Harlie.  It's never far from my mind that everything could change in an instant.  Especially in lake water!  Oh, and someone told me after that week that kids with g-tubes shouldn't be in lake water because of the risk of parasites or something.  Awesome.  Luckily, there were no issues.  But, sheesh!  What's a girl with a trach and g-tube supposed to do for fun?!?!

Anyway, we got there on Saturday and she only spent some of Saturday and Sunday in the float.  After that it got too hot for her.  And some dragon flies came out, and she was done after that.  The girl does not like bugs of any kind.  The rest of the week she spent in the house with her nurse.  In the room where she was sleeping there was a TV with a DVD player.  She thought it was pretty cool to lay in bed and watch movies all day.  While that KILLS me, I try really hard to look at it from her perspective, and if she doesn't get to do that at home, I suppose that's what vacation is all about.

The other thing was that the house was not very close to the water.

Here's the view of the house from the dock.

And here's a view of the house and boat house from the water.

We took a wagon to help get Harlie and her stuff from the house to the dock.  But, with the oxygen concentrator, suction machine, etc., it was labor intensive to get her there and back.  And it was a hot week.  And Harlie just can't handle the heat.  Even when she goes into the water, she can't get her head wet.  So, it doesn't have the same cooling affect like it does for us when we can just jump in.  Anyway, it made me sad that she couldn't be with us, enjoying the same things we were enjoying.  And then I felt guilty for spending so much time away from her.

I know she still had fun.  She is always happy, that's for sure.  And I had a great time, too.  I got plenty of down time, and quality time with my family (minus my husband, unfortunately).  And I even got in all of my training runs!  Which I think is pretty impressive considering it was super hot, not good running terrain and I had my fair share of coconut mojitos.

Harlie got to fish, which was pretty much all she wanted to do.

Harlie's first fish!  And the only bass caught that week!

This girl cracks me up.

Dawn and Harlie

Cooper got in on the action, too!

My Mom and Dad got to ride jet skis...

My Mom (taking time off from chemo) and brother, Bruce.
It was awesome to see her have fun!

My Dad.

My Dad and Tom.

We went tubing.  Which is crazy.  Because I am just too old for that crap.

I am way too afraid of hurting myself.  I'm just not into that.  I thought that since I was on the tube with the FIVE year old, I was safe.  Apparently I was wrong.

I mean, look at this!  Poor Murphy!

Okay, maybe he thought that was fun.

Now, here's where it got real.  My new, and only pair of "nice" sunglasses that I've ever owned (that Tom got me for Mother's Day), flew off my head, never to be seen again!  I have included this picture for your enjoyment only.  Not mine.  Just look at the agony/fear on my face!!!

Yes, they told me not to wear them.  Did I listen?  No.  I repeat, I was on the tube with the FIVE year old, I thought it was going to be a nice, leisurely ride.  Clearly, I thought wrong.  

Apparently, while I may be tough on the inside - I'm a wimp when it comes to water sports.  And now I'm back to wearing cheap Target sunglasses.  Oh, the agony!!!

We sat on the dock and watched a storm come in.  We waited till the last second and then ran for the house.

One night for dinner we went via boat/jet ski to a restaurant on the water.  It was a night when Tom wasn't there and I didn't have a nurse.  The boys went on the fast boat, and Harlie and I went on the pontoon boat.  She loved it.

My niece, Jordan, just because I thought
this was such a good picture of her. 

Bruce and Nancy on the jet ski next to us.

When we docked at the restaurant, I realized we didn't have Harlie's chair.  So, she tried to walk.  But it was far.  So, everyone helped me by carrying something (her suction machine, my bag, her oxygen tank) so I could carry her.  It really wasn't that far.  But, it was to her.  And it makes me so sad to see how little endurance she has.  Any exertion at all is taxing on her and she just can't do it.  One second you feel great, enjoying a boat ride, and the next you get a slap in the face at the gravity of your daughter's heart and lung crappiness.  Sometimes it just sucks more than others.

Our last day was Friday.  Tom had to work and could only come out for half the day.  He brought Rooney with him.  So, he got to spend some time on the lake.

Not too far out in the water there was a table and volley ball net.  So, we played a game of beer pong.  Or two.  The under-aged kids just watched, of course.

Me and my beautiful nieces, Kelly, Maggie and Jordan.

Cooper with Poppy (my Dad).

Tom and I with the boys and Rooney.

Doesn't Murphy look so old in this picture?
Skinny.  But, old.

And Rooney liked it, too.

As did Harlie, of course.

I could so do lake living.

When Tom first got there around lunch time on Friday, he pulled into the driveway and him and Rooney came straight to the dock.  Harlie was inside with Dawn.  I was so excited to see if Rooney could swim that we put him immediately in the water to see what he could do.  He can swim, I just don't think he really enjoyed it that much.  So, I took a very short video on my cell phone and we didn't make him do it again.  Then Tom went up and got Harlie and brought her down, so she could see Rooney.

Hours later, we played and packed up and left.  Harlie and Rooney were in my car and the boys were in Tom's truck.  Harlie wanted to see the pictures on my phone (something she likes to do) so I gave it to her as we were leaving the house.  She came across the video of Rooney swimming and started to cry.  Like a legit, "I'm so sad and disappointed" kind of cry.  I turned to look at her and she said/signed, "Mama, I want to see."  She missed it.  She was in the house when Rooney was in the lake.  And she missed it.  And she knew it.  It's moments like these that kill me.  If her body were stronger - she would have been playing outside with the rest of us and she would have been right there.  With little to no effort.  Instead, just playing outside can be too much for her.  UGH!!!  How did this happen?!  Why?!???  Such futile questions.  It just sucks.  Plain and simple.

There's a bunch of other stuff I want to tell you about, but this is already pretty long, so I'll finish with a "quick" update on Harlie, medically speaking.

I can't remember if I already told you about Harlie's decreasing heart rate.  But, just in case, we realized in May that her heart rate was slower than it used to be.  And hanging out around 60 bpm during the day.  Seemed pretty low to me.  Her pacemaker was set to fire if her heart rate dipped to 50 while she slept, and 60 during the day.  If her heart rate was hanging around 60, that meant it was because her pacemaker was doing the work.

So, on June 25th, we went in to see her cardiologist.  He read her pacemaker and agreed, it was too low.  Basically, due to her heart disease, they expected that her heart would need the pacemaker full-time eventually.  Which, is where she is now.  He said that her heart was working on it's own only 12-14% of the time.  I think since she's now at a place where the pacemaker is taking over, he has more room to control it.  They've always wanted her heart to do what it could on it's own, then be assisted by the pacemaker.  It has been a struggle since her heart initiates a beat from all over her heart, at random paces.  So, the pacemaker couldn't predict what her heart was going to do.  Now, I think he can just set her pacemaker to do what is best, and it's pretty much taken over full function.

After making some adjustments, he said to make her walk up and down the hallway a few times so he could see what happens.  Brandy took her so I could chat with him without Harlie being able to hear us.

I want to know how long we have before things get bad.  But, he can't tell me that, of course.  I asked him what I should be doing and he said there's nothing I can do to change the way her lungs are.  Maybe her left lung will be strong enough to support her one day.  Who knows?  But, eventually, we will be at a place where our only hope/option will be a heart and lung transplant.  If only he could tell me when.  He said he would want us to think long and hard before going down that road.  It's a hard road, with a lot of pain for her, and not good outcomes.

I told him I can usually stay positive, but this latest info is kicking my ass.  I guess her doctors could tell that I had so many hopes and dreams for her.  I really thought she - we - were going to conquer all her challenges and one day, live a normal life.  I suppose from a medical professional perspective (who has seen way more than I ever have) they could see that I was living in la-la land.  The odds are just so against her.  There are too many challenges with too many of her body parts.  All it takes is one to go the wrong way...

I have never thought of her conditions as being "terminal."  Except when I was pregnant with her.  I knew the odds were stacked against her then, for sure.  But, it really seemed like after that, she could beat it.  We've never done anything crazy to keep her alive.  Just a whole bunch of surgeries.  None of them insane.  Sure, her leg bone is in her face.  But, even that's just another surgery day at Boston Children's Hospital.

But this?  When we get to the point where we really need to make a decision about this heart and lung transplant.... that seems insane.

And all my hopes up until now were fixable things.  Like, maybe another, different, jaw surgery will be the ticket to a better airway.  After this heart surgery, her heart will be better.  After spinal fusion surgery, her back will be better.  But, now, I have to hope that her left lung will just be able to handle the workload?  Even though right now, it can't.  At 7, and 46 pounds, it needs help.  But, maybe that will change.  Maybe there will be more medical advancements made in time to help her.

That's ridiculous.  How am I supposed to work with that?

So, that's where I am right now.  I need to find hope again.  And I need to figure out what I'm supposed to do when I hear someone say, "maybe she'll be a _____ when she grows up."  How do you live when you don't know how long you'll have your child?  Will she drive a car?  Get a job? Go to college?  I don't think about any of those things when it comes to the boys.  I just assume, that aside from some tragedy, that they will get to experience all of those things.

And for now, we have no focus.  We're not working towards getting the trach out.  We're not working on eating by mouth.  We're not working on ... anything, really.  For seven years, we've been working on things.  And now, we've stopped.  And I feel lost.  I don't know what to do.

When I was young, I worked at a small, family owned restaurant.  I was a waitress.  And if you ever did that, you might know what I'm talking about.  When the restaurant is really busy, you're on.  You have energy, you can remember stuff, you're working hard and feeling good about it.  But, after the rush, when the restaurant is empty and you only have a few tables, you suck.  You forget to check on them.  You forget their drinks.  You have enough down time that you can sit down for a second and then you realize how much your feet hurt.  Getting up again is that much harder.

That's kind of how I feel.  We've been so busy for so long.  And it slowed and I sat down.  And my feet hurt.  And I'm really freaking tired.  And now rescheduling that appointment with nutrition that we missed a few weeks ago seems an impossible task, that has been on my to-do list for weeks.  Going anywhere takes an exorbitant amount of energy.  And that layer of grief that is always just below the surface, is harder to rise above.

I know I have to figure this out.  Living with this sadness, I mean.  Maybe once school starts, it will be better.  We'll see.

Anyway, back to the pacemaker appointment... Harlie and Brandy returned from their walk and Harlie was definitely breathing heavy.  But, her sats were 84 and her heart rate was 120!  To put it in perspective, when we went to her cardiology appointment in February/March, we were in the waiting room and her sats were 90, on one liter of oxygen.  While in the waiting room at the end of June, her sats were 86, on two liters of oxygen.  After walking, her sats were 84 on two liters (but this was after physically exerting herself).  So, that's huge!

Now, a month later, on July 31st, she rode her bike around the block for the first time EVER.

What a wonderful change!  Granted, with training wheels and she went really slow.  We took the jogger stroller just in case she couldn't make it all the way around.  And we put the oxygen tank and suction machine in that and walked beside her the whole way.  I had to push on her back a little to give her a little help when the road was flat or inclined.  When she went down hill she would go two inches, and then apply the brakes.  It took us about 40 minutes to make it around.  But, she did it!  And she never once asked to get in the stroller, so that's awesome!

Happy Birthday Brandy!

I'm thinking that pacemaker adjustment was life changing.  She's had more energy in the past several weeks than she has had in years.  She actually sits and plays with toys instead of watching TV all the time.  I think she had no energy before - so it was easiest to just sit on the couch and watch TV.  Now she plays!  A few weeks ago, the bike got out.  I don't know how.  We got it for her years ago, and it had never seen the street.  But, she rode it around the house.

What?  Your kid doesn't ride her bike in the house while wearing a cat costume?  In July?

Okay, this has been long enough.  I have so much more I could share, but I am running 14 miles in the morning.  So, I have to get to bed.

Thanks for reading!  And thank you, as always, for your support.  Without my friends and family, I would be a mess!

Much love,
Christy xo

The last month...

I know.  I've been absent again.  I have just not been "myself" lately, and it's hard to want to blog when you don't feel like yourself.

I have so much good to say about the We Heart Harlie and Friends event and the Deep Run Marathon Dance, but I am seriously lacking the energy to pull myself out of this funk for that right now.  Soon, I hope.

The real reason I'm writing right now is because I ran into two friends today who asked what's been going on.  And they both said that they want to know, even if it's not good.  So, thanks for that Katie and Stacy, this is for you!

The last two weeks have been an adjustment around here.  Cooper had swimming lessons each day and Murphy's swim team practice started.  Thank goodness my dear friend Bethany and I signed our boys up for the same sessions.  We took turns driving them there, which was a life saver.  The first week of adding those appointments on my calendar were complicated by Harlie having a.... fever!  Yes, the girl who never  rarely has a fever, had one.   So, that was a little freaky.  After seeing some hellacious infections not give her a fever, it makes you wonder what's brewing that does give her one!  We waited it out and didn't even take her to the doctor.  She's fine now.

Anyway, her being sick meant I couldn't take her to the pool for Murphy's swim practice.  Our nurse leaves earlier in the afternoon, so I don't have coverage then.  So, I called my Mom.  She received her first round of chemo last month, and was feeling better and up to coming over.  I had just seen her the night before at my nephew's senior soccer game.  But, she was wearing a hat, so I didn't notice.  I knew she was going to lose her hair, I just didn't realize it would happen so fast.  So, I guess that sort of caught me off guard.  Makes everything more real, I guess.  We had not told Murphy anything yet.  And when he saw her he said, "Nana, did you get a haircut?"  Ugh.  So, when Tom got home we told him that Nana is going through chemo for cancer.  Odds are that she'll be okay.  The cancer got into some lymph nodes, so the chemo will hopefully catch any that sneaked by.  She is in great spirits for the most part.  I know where I got my positive outlook from.
 

Here is my Mom and I on May 10th.  Her and my Dad came over for dinner to celebrate her birthday (the 9th), Mother's Day (the 11th) and Murphy's birthday (the 11th).  This was taken before she started to lose her hair.

Whew, I feel like this story is just getting longer and longer...  I guess that's what happens when you don't write for so long.

Anyway, thankfully my Mom helped me out that first week of practice so I could take Murphy to the pool and leave Harlie here with her.

The next week my Mom received her second round of chemo, so she really wasn't feeling well then.  I think she's starting to bounce back some now.

Harlie got better, too.  I don't know what she had, but it went away.  Although the next week brought another ailment her way.  For some reason (still unknown) she started coughing up blood from her trach.  This started right as Memorial Day weekend got underway, so no doc to take her to except the ER.  She really seemed fine.  So, I let it go.  After a few days it started to get better and each day we saw less and less blood.  She seems all good now.

But when we went to refill one of her breathing treatment meds, we found out that Medicaid no longer covers one of her meds.  In looking to replace it with something that they do cover, her docs put her on Albuterol.  Since that raises the heart rate, they wanted me to monitor her heart rate during treatment to make sure she was okay.  This made us realize that her heart rate is a lot slower than I thought.  I always remember it being in the high 80s.  Well during the treatment it stayed at 60 (or just above) the whole time.  Harlie's pacemaker is set to keep her above 50 beats per minute at night while she sleeps and 60 beats per minute during the day when she's awake.  I suppose this means that her heart rate is now slower than 60 bpm, which is causing her pacemaker to fire.  Apparently more often than I realized.  She will get her pacemaker checked at the end of June.  So, I'll have more data then.  And even though this may be "normal" for her heart, it still makes mine hurt a little.  I know she has a pacemaker for this reason exactly.  I just don't like the idea that her heart needs more help than it was getting.  Especially since this feels like a new change.  And she's seven.  Just more reminders....

Anyway, here's the last month in pictures...

May 11 - Mother's Day

I started the day out with a great run with friends.

And when we got back some of the dads had set up some goodies - mimosas!

Thanks Glen!

And food!

Thanks to all who supplied the yummy food!

Then I went home and got the family and we went to lunch.  Not only was it Mother's Day, it was this guy's 10th birthday!

Me and Murphy

Hard to believe he's TEN!!!  Here's what he looked like ten years ago...

5 weeks early, 5 pounds, 10 ounces

He was such a little sweetie.  Still is, for the most part.

After lunch we went to Belle Isle.  I love going there because we can take Rooney.  It has become our Mother's Day tradition.

Yes, sometimes Rooney likes to take advantage of the stroller.

Murphy - TEN years old!

One of my favorite family pics!

The next week, some kids I know really wanted their toe nails painted...

So, I painted them.  No crummy comments (or thoughts), please.  Later in the week when the polish was wearing off, I took Cooper's off with some polish remover.  Cooper looked at me in amazement and said, "Is that how you erase it?"  He's so funny.

Pediatric Connection is the company that provides our nursing and medical supplies and equipment for Harlie.  They wanted to get some pictures of some of their clients, so we went there for a quick photo shoot.  She was a ham.

Have you ever seen the movie Milo and Otis?  If you have, then you will probably understand why I thought it was hysterical when I walked in the room and found the two of them hanging out with this stuffed sea turtle.

What are the odds?

The other day this adorable neighbor said, "Here's your dog."

He is a very social pup and likes to make the rounds to all our neighbor's houses.  And if he sees the door open, he will gladly go in and do some vacuuming in the kitchen!

Tom and I went to a wedding... and he wore a bow tie!

Niki and I

Another pic of Rooney, just because I love him so...

Cooper had his LAST day of preschool.  Yes, he will start kindergarten in the fall.

Our kind neighbors let Tom borrow his Harley for a little ride.

Our Harlie loved it.

So cute!

One night, Tom and I were out at a bar celebrating a friend's Ironman achievement (Rick Tangard is awesome, by the way) and in walked my niece.  That was a first!

Me and Jordan

I started this post a week ago.  But I get so little time in front of my computer these days, I wasn't able to finish it.  Between swim team, working part-time, running, etc., it's been crazy.  But, after school is done (a week from tomorrow!) swim team meets in the mornings, which will be SO much better.  Right now it's from 5 to 6pm.  So, I have to take all three kids, plus all of Harlie's gear and oxygen and I have to watch her like a hawk. So, we haven't been getting home until 6:30ish, with three wet kids, no dinner and Tom's been working late.   I hate to sound like a wimp, but it's exhausting.

The first time I took Harlie to the pool was a little stressful.  I really felt like everyone there was staring at us.  And I'm sure that's not true.  Or, perhaps they were admiring how cute she is... regardless, I felt super self conscious and I just wanted to burst into tears.  In a weakness, I saw a friend and said to her, "Is it just me, or is everyone staring at us?"  And then I instantly regretted it.  It sounded really crappy.

But, we got through it.  And it was fine.  I'm sure that with more practice, I will get better at handling things and people will get used to seeing the oxygen tubing in the pool.

She is a lot of work at the pool.  But, she's worth it.  She really loves it.  Since she needs a float with a built in seat, we use two infant floats.  She's seven.  I guess we're really lucky that she's so small for her age.  We really go through some small oxygen tanks, though.  With her kicking her legs, I have to up the flow to keep her sats up.

Thank goodness for "adult swim" times!

Cooper had his last soccer game of the season.  Woohoo!

Tom and I went to my niece's (Jordan) college graduation party and my nephew's (Cutter) high school graduation party (they are siblings).  Then we left there to go to a wedding reception.

Tom and I

Allison and I

And, I decided to make another go for the Richmond marathon in November, along with these other crazies.

Keenan, Wendy, Natalie, Michelle, Molly, me, Aimee

I know, I'm nuts.  And, honestly, I'm not even sure I can pull it off.  But, I suppose you'll never know if you don't try.  So, I'm going to go as long as I can go.  My main concern is overall fatigue that impacts my ability to handle my life at home.  If that happens, I will back off and switch to the half.  And I will have no shame.  I no longer compare my time with other's.  Any day I can run is a good day, no matter what my time is.  And that's good enough for me!

Oh, and here's one more photo of the dog.

Look Mom!  Rooney's an astronaut!

So, that's what's been going on here.  Please send my Mom some good vibes for her chemo treatments.  This last one was a tough one.  She is going to take a little longer in between to give her a little more time of feeling good.  So, hopefully that will help her fight the next one better.

And things with Harlie are status quo for now.  Which, is a good thing.  It feels a little weird, though.  I feel like I'm dropping the ball somewhere.  So, I decided to work on getting her an appointment at a hospital that specializes in heart/lung transplants.  I don't like not knowing where we are.  I'd rather hear whatever they say, than sit here, not hearing anything at all.  The unknown seems scarier.  My imagination can take me to places I don't want to go.  So, I'll update you on that as it progresses.  I have a feeling it's not something that will happen soon, though.

More later (I hope!).

Much love,
Christy xo