Lots of updates

The past few days have been especially difficult.  Way too much to do, way too little time.  I'm spread too thin.  Things, important things, aren't getting done.

But, before I get into that, here is something I haven't blogged about yet.

Murphy turned NINE years old on May 11th.  Gasp.  Nine!  How did that happen?  He was such a cute little bugger.  Here he is at two...

Crazy how fast time goes by.  Life was so different with this kid.  Those were a glorious 2.5 years. How carefree and naive we were!  And we were never sad.  My, how things have changed.

Well, being the awesome mom that I am, last year his birthday party was in August or something.  Pathetic.  So, this year, I thought I would outdo myself and have his party in May.  Late May, but still.  I know!  I'm good, aren't I?

We took him and a few friends to play putt-putt golf.  Then we went to Sweet Frogs for frozen yogurt and then home for a movie and a sleep-over.  I was super impressed when I woke up at 1:30am and heard silence.  I went downstairs to check on them and the tv was off and they were all in their sleeping bags, sleeping.  Way to go, boys!  I have a picture of them at putt-putt (the one and only picture we took, oops) that I want to send to all the parents with a note.  I hope I get to that item on my to-do list soon.  If you're one of the parents, don't hold your breath.  My intentions are good!  I promise!  Follow through, not so much.

And here's why...

Our last two days in a nutshell:

Wednesday, May 29th
7am - Run 3 miles
8am - go to Lowe's, buy dirt to plant flowers (preferrably before they die)
11am - Rooney, vet appointment
2pm - Dr. Dodson, ENT appointment, Harlie
5pm - Swim practice, Murphy

Thursday, May 30th
Terri off (no nurse means no school if I can't take Harlie myself)
10am - Dentist, Murphy and Cooper
1:15pm - Feeding Clinic appointment, Harlie
3pm - Hearing Impaired therapy, Harlie
5pm - Swim practice, Murphy

It might look like appointments are spaced out enough.  But they aren't.  There's no time to pee or eat.  Or walk the dog.  Or sit down (other than in a car, which doesn't feel like sitting down).  Or to do laundry, send emails, blog, go to the gym.  Or to pick up kids and drop them off.  Or to drive there! Blah!

Harlie has been coughing up some small blood clots in the morning (with her initial coughs after waking).  Then no more blood for the rest of the day.  This has been happening every morning for over a week now.  The first few days, I was like, "whatever."  But, it's been more than a week now.  And they are blood clots, not just blood.  Then she started to cough up a little of blood in the middle of the day.  Weird.  Especially considering she is not sick (thank God) and not coughing excessively.  Her sats are great and her nights have been restful with no coughing.  Combine this with the fact that she's not been tolerating her cap or PMV, and I was getting concerned that she might have a granuloma in her trachea.  So, I emailed her local ENT and she said to come in to see her the next day at 2!  Wowzer!  I've never gotten an appointment that fast.

Rooney had a vet appointment at 11am.  Then I had to go get Harlie and Terri and bring Terri back home to get her car.  Then I had to go pick up Murphy from school.  Of course I forgot that he rode his bike to school.  But, by then I didn't have enough time to let Murphy ride it home to drop it off.  So, I had to put it in the back of the car.

Then we rushed to MCV for Harlie's appointment.  Parking was a nightmare.  More than usual this time.  We parked, took the parking garage elevator to the street.  Then walked the half a block to a different building.  Then took a second elevator to the second floor.  Then got off that elevator and switched to a third elevator and took that one to the seventh floor.  Normally, I don't notice the ridiculousness of the process.  But, because I had all three kids and they kept looking at me with faces full of confusion, I noticed.  Plus, I'm tired.  And it's easier to get annoyed when you're tired. And of course my thoughts went to how awesome it would be if we had a real Children's Hospital.  Or even better, all healthy children.  Oh, to dream...

We all crammed into a very tiny exam room and saw her doc, Dr. Dodson, who I love.  First she looked into her ear and cleaned the wax out.  I know that sounds gross, but she can't help it.  Wearing an aid all day prevents any wax from working it's way out.  Harlie sat super still and Dr. Dodson was able to clean it all out.  I was so proud of her!  Then she scoped Harlie right there and Harlie did GREAT!  First she put the scope in her trach and did not see any granulomas or irritation in her trachea.  Then we removed her trach, and she put the scope in her stoma (just in case the source of the blood was around the cannula.  Nope.  Her trachea is "beautiful."  Which is fabulous, of course.  Except that leaves us with no answers.  :-(

If the blood isn't coming from her trachea, I guess that leaves her lungs?  Which means I have to contact pulmonary, which I don't want to do.  Quite frankly, I don't think I'm going to get any answers there, either.  She doesn't seem to be bothered.  So, I'm just going to wait it out a little longer. See?  I'm tired.  And probably seasoned.  I know doctors don't know everything.  I think I liked the innocence of thinking they did, better.

We got home that afternoon and then I had to take Murphy to swim practice.  Now that he's nine, he moved up into the next bracket.  So now he has to swim 50 meters.  Oi.  I don't have high hopes for this season.  And if he doesn't kick up some motivation and desire to put some actual effort in, it will be our last with him.  I just can't do it.  I don't mind working really hard if he loves it and wants to do it.  But, if he doesn't, I just don't have it in me.  I'd rather put that effort into other things.

So that day was all go (the morning was spent on planting flowers) and I got no time on the computer.  You know, to do the stuff that really needs to be done.  I don't know why I bought those darn flowers.  Now I just created more work for me that needs to be done in a timely manner.  

Then Thursday was crazy, too.  The boys had a dentist appointment at 10am.  And I have no nurse until Monday.  Both of our nurses are out of town.  So, I had to keep Harlie out of school.  Which totally sucks.  But, I have rescheduled that dentist appointment for months because of stuff like this - and I just couldn't put it off any longer.  So, off the three of us went.

We had to wait for an hour.  An HOUR!!!  Something must be going on with this office, because I have never had to wait that long.  Anyway, Cooper was already super whiny and thirsty and hungry by the time we got in there.  Awesome.

But, surprisingly, he was good - while in the chair.  Out of the chair was another matter entirely.  So, Cooper and Murphy got their teeth cleaned.  Cooper has a very small cavity.  Crap.  So, they want to fill it while it's still small.  Murphy's good.  And I didn't make Harlie an appointment because I was thinking that she's seeing the dentist in Boston.  Which is stupid of me because they aren't cleaning her teeth!!!  Ugh.  Having two dentists in two different states is not fun.  So, after the boys were done Harlie signed "my turn" and she broke my heart.  I wished they would just work her in real quick, but apparently it was close to lunch.  I don't know what the reason was.  There weren't any patients when we left (near noon) and there were several dentists and hygienists.  Hmmm.  Anyway, that sucked.  And it's totally my fault.  I just wish they could have bailed me out.

So, we got on the road at noon and then I realize that Murphy missed lunch at school.  Now I have to go by and get something for him to eat before taking him back to school.  Fine, whatever.  It's just that I had no time since I had to have Harlie BACK to the same place in an hour.  Ugh.

For the record, I don't plan on scheduling things like this.  It just happens.  Especially when Harlie's sick, so I have to reschedule something (which was the case for both of these appointments).  And with the Feeding Clinic appointment, she must be seen every so many days to stay in the program. And we had already pushed that envelope to the max (it had been like 263 days since our last appointment and we are supposed to be seen every four to six months).  But with this past horrible winter for Harlie, I had to reschedule, and it takes three months to get another appointment.

So, there you go.  It's just the way it is.  Which is why these past few days have been so difficult.  It's been all go and for nothing I want to do.  Sometimes, that just gets old.  OLD, I tell you!

Anyway, so I dropped Murphy off at school.  Ran home and fed and walked the dog (man, I love that dog!) grabbed a granola bar for me, fed Harlie and left Cooper with my Mom, got back in the car and headed back to the Children's Hospital.

To clarify, the "Children's Hospital" is not a hospital.  It is a long term care facility for kids who have medical needs that prevent them from living at home (or who don't have a home) and an out patient center for therapies (PT, ST, OT and feeding) and there is a dentist office.

So, we drive right back there and I park the car.  Harlie says, "Mama!" and I turned around and she smiles a big smile and points to her teeth.  She thought it was finally her turn to get her teeth cleaned.  Ugh.  Break. My. Heart.  Seriously?  What freaking kid wants to go to the dentist?  Especially with her oral issues!!  I hate myself for not including her in the appointments.  But, how was I to know she would want to have her teeth cleaned so bad??  Heck, come to think of it, in my defense, Harlie wasn't even supposed to be with me!

She now has an appointment for June 26.  Let's hope she's in the mood that day.  Oh, and to get Cooper's treatment for his small cavity (which the dentist said she wanted to do asap) yeah, August 3rd.  Whatever.

Moving on...  We go in for her Feeding Clinic appointment (15 minutes late, which, in my opinion, isn't bad all things considered).  And we waited some more.  We see the Feeding Clinic to see a nutritionist and make any changes to her feeding plan, discuss some GI issues, etc.  Finally, we go back and get her weighed in and measured.

She now weighs 42 pounds.  Woohoo!  Except that's not enough, really.  Darn it.  While she gained some weight, she dropped on the growth chart.  She is the size of an average five year old.  Which I figured since her and Cooper are the same size.  She finally just outgrew size 4t clothes.

Right now, Harlie gets tube fed four cans of Pediasure 1.5 (350 calories per can) per day.  We now have to add in an additional four ounces per day.  I know that doesn't sound like much.  But, I don't know how were going to do that.  It's difficult to get the four cans in some days.  And it's going to be really important for her to get those calories after she has surgery.  Her body is going to need all those calories to heal.

So, we left that appointment and hurried home to try to make it by 3pm so Harlie could get in her hearing impaired instruction with Cheryl Sale.  She comes to the house once a week to work with Harlie.  We got home at 3:10.  Whew!  Cheryl waited for us and Harlie seemed to have a good session with her.

After that it was time to take Murphy to swim practice.  Oh, brother!  I was really tired by then.  I still had not put away the clean dishes, or worked on the laundry that was half done.  Or sent the emails I need to send, or worked on the Medicaid letters I need to get done, or written any thank you notes, etc.  Wait, that's not totally true.  I did work on the Medicaid letter while Harlie was working with Cheryl.

So, I asked Harlie if she wanted to go to the pool.  You should have seen her face light up.  I asked her if she wanted to play on the iPad at the pool or get in the water.  She signed "swim" and her face was so freaking cute.  I wish I could have gotten it on video.  Then she gave me a kiss and a hug.  Which was so cute considering I asked for a hug and kiss while we were waiting at the feeding clinic and she said no.  I guess she decided she liked me again.

Well, who could refuse her cute little face - especially considering the whole dentist thing earlier.  And the fact that she spent practically the whole day at the Children's Hospital.  The only fun thing we did that day was take the dog for a walk in the morning.  We stopped by and picked up James (Cooper's friend) and I took them all for a long walk with Rooney.  The boys rode their scooters and I pushed Harlie in her chair.  We walked by the school and I couldn't believe our luck when I realized that the third graders were having an early recess in the bus loop!  So, we waved to Murphy.  I could tell immediately that he was embarrassed.  Whatever.  So, I waved even more enthusiastically and told the kids to do the same.  ;-)  Good times.

Anyway, so we all put swim suits on and headed to the pool.  Tom came up and met us up there after work.  We let the kids play for a while and left at 6:45 to go home.  The house was a wreck, everyone needed to eat, the dog needed to go for a walk, and it was bath night.  It was a busy, busy day.

This post is so long already, but I'm at school with Harlie today, so I am sitting in front the of the computer.  I guess I'll write for as long as I can.

So, back to my to-do list.  It's crazy long.  And some things are time sensitive.  Like these letters of medical necessity for VA Medicaid (since she's having surgery in Boston).  Or this meeting with the Prentke Romich rep to see about getting Harlie a new communication device.  They have stopped manufacturing Harlie's model because they are using the new tablet style technology.  And one of the new ones is super light and her ability to carry the device around herself could be life changing. But, we need to have that meeting before her surgery since she will probably be in pain which could affect her testing on the devices.  Blah, blah, blah.

So, I've tried all different "systems" of managing my to-do list.  But I have finally come to the conclusion that it's not a system problem.  It's a time problem.  There just isn't enough of it.  Period.  So, I think I need to be more efficient.  And one way to be more efficient is for me to have all of the stuff I manage (Harlie's medical and educational material is immense) in one place.  Crazy concept, right?  As of right now, I have notebooks in the kitchen, crammed in two separate cabinets, in the hall closet, and in the laundry room.  Seriously?  File one piece of paper?  Yeah, I don't think so.  So stuff just gets stacked and then I have to go through that stack to find what I need.  Because I know it's in there.

In summary, I need an office. Bad.  Really, really bad.

I came to this conclusion several months back.  Actually, longer ago than that.  But, my hands were tied because we still needed the playroom downstairs.  I am not ready to send Harlie to the third floor to play.  No way.  I will spend all my time trudging up and down the stairs tending to her.  But now, I am fine with her playing in her room.  She has a monitor in there and I can hear when she needs me.  So, I have spent a lot of time going through the playroom and purging toys, separating them into giveaways, consignment and keepers.  Then the keepers got put in the appropriate child's room.  The playroom is essentially empty.  I just need Tom to saw apart the last cubbies so I can re-use them and put them upstairs.  Then we need to replace the flooring, and buy some office stuff.  Like a desk, and cabinets and whatever.

So, on Wednesday night, (which was the day I went to the Vet, ENT and swim practice) we were supposed to drive to Northern VA to go to the Ikea store to check out the office furniture.  I want to do this as inexpensively as possible and I want the office to be pretty modern with not a lot of stuff to clutter it up.

Granted, I didn't have a lot of energy for the trip - but it was the ONLY night we could do it for several weeks and I need this room so, so bad!

Well, we ended up not being able to go.  And I was disappointed and frustrated.  And I was tired.  And annoyed that so many things I do are things I have to do and don't want to do.  And it doesn't help that the next couple of weeks have some really challenging days in them.

For over SIX AND A HALF YEARS now I have had to do countless things that have been unpleasant or downright painful.  And I have tried to be happy and smile through it all.  I guess I was just really, really tired that night.  So, Tom came home and I really had nothing to say.  So, you know it's bad when I'm quiet.  He kept on asking me stuff trying to get me to talk, but I just didn't feel like it.  Crazy, I know!

I just feel so... raw.  Like even the littlest of things - that I normally blaze right through - hurt.

So, you know it's bad when you're husband TRIES to get you to talk and then announces he's going to the store to buy wine, and comes promptly home and immediately opens the bottle, and then brings you a full glass.

It's been rough.  And I feel bad for him.  I wasn't mad at him, exactly.  Although, I need his help for this office project (I've done all I can do at this point) and you know the proverb, A cobbler's child goes barefoot?  Grrrrr.  So he got the brunt of my crappiness.

Life is hard.  And somehow we have to keep our chins up and smiles on our faces.  I think an office will help me do that.  If not that, Tom's going to have to buy a lot more wine.  ;-)

I'm about to wrap this long post up, I promise!  But first, a few pics...

Today, Harlie had speech therapy with Amy.  And she drew this...

I don't know about you, but that is the cutest darn snail I've ever seen!

And the other day Harlie was watching Wild Kratts on the computer.  She kept on asking us to look at the fish.  After a few, "Yes, Harlie, I see the fish" I realized she must be trying to tell us something.  So, I asked her to tell us with her talker.  And this is what she "said."

Ah ha!  So, she wants to go to an aquarium!  Awesome!  And with surgery in Boston in less than five weeks away, she'll get to when we get there.  Or maybe we'll have to take a trip to the Baltimore Aquarium before then.  Our kids have never been there.  I suppose we should try to cram as much fun as possible into June so maybe I can live with the guilt of what this summer holds while her jaw is being distracted.

Another huge sign of progress in her language development happened the other day.  We were standing in the kitchen and all of a sudden Harlie verbalized, "I gotta go potty."  I totally understood her.  And she wasn't saying that because she was prompted or asked or forced.  She just had a thought that she verbalized.  That's a first, for sure!

Okay, that's it!  We are home now and many other tasks are screaming my name (as well as my children!).

If you're still reading - thank you!!

Much love,
Christy xo

An Update - Finally!

It's hard to believe it's been almost two weeks since my last blog post!  I wish I could say it was because I had nothing to write about.  But, I have plenty of subject material.  Just not enough time.

Some "quick" updates (is that even possible for me?!):

Last Day of School - June 15

Our pool has a party for the last day of school.  It was super crowded.  But, it was a ton of fun.  My friend Lynda got there before we did, so she scored us some good chairs.

They are really happy, I don't know why they can't show it in a photo!

Have float, will get in the water.

They are really starting to look alike.

My goofy girl!  I guess since she can't dive for those rings,
she'll do something else with them.

They like to play outside the pool as much as inside the pool.

Murphy with Jessica and Samantha (twin sisters and
Lynda's girls).

How can I carry this big gun and my float?

I got this.

I took Kayla with us to the pool (she's Jordan's (my niece) roommate at Virginia Tech).  I just don't feel very comfortable taking all three to the pool by myself.  She was awesome and a huge help!  Thanks, Kayla!

Kayla and Harlie

The Pool Incident

Unfortunately, I don't believe anything has been done about the incident on the 16th.  I'm sure it's partly because I have not been "loud" enough.  Ugh.  That's just not in my nature.  And I've had very mixed reactions about this story.  Some people barely have a reaction at all - Cooper's fine after all, so what's the big deal?  Some have been just as upset as I.


I don't take any luck for granted.  I haven't done that in the last six years.  I know good luck/blessing when I see it and am on the receiving end of it and I do not let it go unappreciated.  We got lucky that day.  And I know how easily it could have gone horribly wrong.  And it happened on MY watch (and the lifeguard's).  He didn't want to be in the water.  So, when I would have looked up and didn't see him, I would have scanned the outside of the pool - the walking area all around it - to see where he went.  Did he go to the potty?  Did he go to the volleyball area to play in the sand?  How long would I have looked before I thought to look into the pool?  One minute?  Two?  He wasn't splashing (you know that drowning is very quiet, right?).    Okay, so now that this has happened, I will probably look in the pool, first.  

But still, I must say that I'm disappointed in the pool's management's handling of the situation.  I have heard that the pool has had issues in the past with the child that pushed Cooper into the water.  And as far as I know, they never reached the child's parents to inform them of his behavior that day.  I would think if you can't reach them over the phone, a letter should be sent.  In fact, I would think they would want that kind of thing in writing anyway.  I've also heard that the board met about this incident, but I never heard anything from them.

At this point, I'm afraid any kind of discipline just wouldn't make sense to him.  It's been almost two weeks already.

And I can't help but think that's absolutely ridiculous.  How can that be tolerated/allowed? Isn't that a major liability for a pool?  Don't they want that child supervised more closely when he's there?  How can they be okay with his parents NOT knowing?!  If my child did something that dangerous you can bet I'd want to know about it.  And if I found out that management knew and didn't tell me, I'd be furious!  

I just don't get it.

Swim Team

Speaking of the pool... Murphy is on the swim team again this year.  Last year was a huge struggle.  We pretty much forced him to do it.  He was not a fan of practice and he was terrified of the swim meets.  He's not a competitive child and when he heard the word "race" he panicked.  He also wasn't confident in his ability to swim 25 meters.  So, he would touch the rope - even though he didn't really need to, which disqualified him.  I think out of six meets last summer, he DQ'd the first four meets.

All we want from this experience is for him to build his confidence, make friends and have fun.  And we are so thankful that all of that is happening this year!  There's no touching the rope this year.  And no tears - and no anxiety.  He likes to go to practice and the meets.  So we are happy about that.  He has three more meets left - and now we are working on him making goals for himself.  So, we'll see how that goes.

The only negative to swim team is the daily swim practice.  It is killing my workouts/runs.  And that is a real bummer.

Harlie's Eye Appointment

So, back in this post I talked about some appointments I needed to make in preparation for Boston's pre-ops in July.  One was to talk to her eye doctor here.  I wanted to get her opinion/have her educate me on what I want as far as her eye surgery goes (which will be done at the same time as her jaw reconstruction in August).  They did a thorough exam and her eye sight is great, so that's wonderful.  It was the first time she could help in the testing, which was very cool.  They gave her a board with four letters on it and she had to point to the one that matched what she saw on the screen.

I'm glad we went.  It was worth the time.  I can now speak to the plastic surgeon in Boston with more confidence.  And that's always nice.

Harlie's New Stroller

This is so not a good picture.  But, it's all I have for now.

Harlie's PT, Traci, ordered her a new stroller and it came in on Monday, June 25th.  The typical umbrella stroller was not made for an almost six year old!  Granted, she's not the size of an almost six year old.  But still, she had long since outgrown hers.  And we hang the suction machine on it too, so it was really hurting!  This one will grow with her and will hold her weight and the suction machine for a long, long time.  It is very smooth to push and it turns on a dime. And she is so much more comfortable.  I wish we didn't need a stroller at this point in her life.  But, she still cannot walk long distances - like at the mall, for example - or to a doctor's appointment when you have to park really far away.


Later on that day, Richmond had a big storm.  After I picked up the stroller, I went and got Murphy from Summer Blast (a school program) and headed to Wal-mart (so NOT a fan - but it was one stop shopping for all I needed).  The weather was beautiful when we walked into the building.  I knew there were storms predicted, but who really counts on a weather forecast anyway?  Within 20 minutes it was raining, hailing and the power went out.  The kids were not amused.

And I have no idea why they look like they are under arrest.  The little ones were a little scared and Murphy was really worried.  I, quite frankly, was pissed because I knew I wasn't going to be able to buy my yogurt and other items that I so desperately needed.  Ugh!  I know my cart looks empty, but I have to put all my items toward the front of the cart so I can have the space to banish a child, should I need to do so (which is usually pretty often).

The employees herded all of us shoppers to the area of the store that had no skylights.  It was so dark that I had to put Harlie and Cooper in the cart so I wouldn't lose them.  Murphy kept asking me if I was worried.  I had to keep telling him no (and refraining from telling him that I was pissed and annoyed).  After the storm let up (it was over rather quickly) they let us go (without any groceries, of course).  It was beautiful outside again.

On our way home I realized how bad the storm was.  A tornado hit not far from where we live.  There were lots of trees down/broken.  And the streets were completely covered in leaves ripped from the trees.  We had no power until the next day around 10am.  I know others had it way worse.  So, then I felt kinda bad for being annoyed I couldn't buy my yogurt.  As far as problems go, that's not that bad.

ENT

On Wednesday, we had an appointment with our local ENT.  I originally scheduled this a while back (when she was still sick).  But, kept the appointment anyway so I could get her take on the whole BAHA thing and how she does surgery, etc.

Harlie being sassy and having fun while
waiting for the doctor.

Some of her information differed from the surgeon in DC.  But, that's just the way it is.  You see 10 different docs, you're going to get 10 different opinions.  Now that she's healthy again (notice she's wearing her cap again, yahoo!) I am thinking of trying to work this in after all.  I just think that it will be more traumatizing to her to have to go back in for surgery after the big jaw reconstruction.  And I would rather it be less traumatizing if at all possible.  So, we'll just see how the schedule works out.

While we were at the appointment, Harlie signed "potty."  On our way, I closed the exam room door behind me, and didn't realize that Harlie's fingers were in the way (in the door jamb near the hinges).  Of course, there's no scream from her alerting you of pain.  So, it took me a second to realize what was going on.  I just happened to see them squished in there.  Ugh.  It kills me that she can't scream to protect herself from stuff like this (this is the second time this has happened).  Later on a nurse who just happened to be in the hallway when that happened knocked on the door to ask if she was okay.  She was so understanding, it was really nice.

Rooney

And I can't leave little Rooney out.  He's so funny.  Here he is with one of Harlie's HMEs (heat and moisture exchanger for her trach).

And sidewalk chalk.

He will chew on anything (except for most of the toys that I've bought him, of course).  And the other day he ate a box of crayons.  My first clue was his very colorful poop.  He clearly ate some of each crayon in the box.  I'm pretty sure every color was represented.  I took a picture - but that was just so I could show Tom (he was not amused) so I'll spare you the agony.

I try to tell the boys to pick up the Legos.  But they don't listen.  I told Murphy just the other day, "Murphy, you lost a pair of handcuffs today.  When are you going to stop leaving your Legos on the floor?"  I know, I'm an idiot.  Of course he's NEVER going to stop leaving Legos on the floor.  Duh.

But, Rooney's worth it.  I love that dog!

Okay, that's it for now.  Whew!

OH!  One more thing... I am working on a slideshow from the We Heart Harlie event.  I hope to have that ready early next week sometime.  And, I am still working on my thank you notes.  So, until then, please know how incredibly thankful we are to all the businesses/individuals that donated items for the raffle and to all who donated their time and hard earned money for our sweet girl!  Thank you!

I must blog more often.  These long updates kill me and my sleep time!

Thanks for reading!
~Christy

PS - this post is dedicated to my friend, Allie.  Thanks for checking on me and for motivating me to write again! xo

Incident at the Pool

Just a quick one to tell you about what happened at the pool today...

Tom and I took the kids and met my niece Maggie at the pool this afternoon.  The kids were taking a break from being in the water and were playing around our chairs.  They'd been out for more than a few minutes, and were completely dry.  Maggie and I were chatting while they were playing with water guns.  At one point I saw a kid (I don't know... about six to eight years old?) griping at Cooper about the water gun.  I assumed that Cooper must have squirted him or something. It appeared that the kid was walking past our area.  I watched him say something to Cooper and he walked away.  I didn't think much of it, to be honest.  Cooper's three, after all, and we are at a pool.  

The next thing I knew Cooper was standing at our chairs soaking wet and crying.  It took a second to realize that he was dry just a second ago.  And then Murphy said someone pushed him in the pool.  I was very confused - we were sitting RIGHT there.  Just a few feet from him a second ago.  As I was trying to figure out what happened, I could see a couple in the water/sitting on the side of the pool right in front of us.  It looked like they were aware of what was going on.  

I don't remember what I said to them, but the gentleman told me that someone pushed Cooper in the water (it was five feet deep where we were and Cooper cannot swim, nor is he five feet tall) and that he got him out of the water for me.  

WHAT?!?!?!

Cooper had been filling up the gun at the side of the pool, so I asked if someone accidently bumped him in the water.  He said, "I don't think so."  I, of course, told him "thank you" several times.  As if there is ever enough thanks you can give to someone for fishing your son out of the water and out of harm's way.  

As I talked to him more, he told me that this kid pushed Cooper into the water where there were several boys playing.  Everyone in the pool around that area could see that Cooper was struggling and one of the boys grabbed him and then handed him to this gentleman who put him back on the ground.  

Obviously Cooper is fine (thanks to those that saw him in the water) - but when I think about it, it makes my stomach hurt.  It doesn't help that I was talking to Maggie - and that I never saw it happen.  

Clearly, my first thought is that the person who pushed him in was that kid that was griping at him just a few minutes earlier.  So, I asked the gentleman if this particular kid was the one.  There were two kids in the same shirt.  I went and told a lifeguard.  

That sounds so ridiculous.  I told on him.  But, there is no way that is acceptable behavior.  You can't just go pushing a little kid into deep water!!!  What the hell???  And I really didn't think that I would handle it appropriately (a conversation with the kid, myself, I mean).  The lifeguard went and spoke to one of the boys, but it wasn't him.  Then we saw the other kid and I knew that was the kid that spoke to Cooper.  So, she went and talked to him.  

She returned and said that he admitted to pushing Cooper in the water.  But he said that he thought he could swim since he was standing by the pool.  Whatever.  And then she said that he has Autism and that she wasn't really getting anywhere with her conversation with him.  She said she was going to talk to his parents (but he was there for a party, and they weren't there).  But she knows who they are.  

I get that we can't control everything our children do - with or without special circumstances.  But, wow, is that dangerous!  Thank God for the guys that saw Cooper and rescued him!  Later on that kid walked by our area again and Cooper yelled at him!  Cooper wasn't with me when I was talking to the lifeguard or anyone else about it.  So, it's not like he heard us say it was that kid.  He knew.  Cooper pointed at him and yelled, "Hey, you pushed me in the water!"  The kid turned looked at him and then hurried off.  

It still makes me sick to think about it.  

And I couldn't help but think, what if he pushed Harlie in the water???  That could be tragic.  No joke. No exaggeration.  The trach is an open passageway to her lungs - with no protection from water.  Water would fill her lungs instantly.  And now I feel even more sick.  

I know that some would say she just shouldn't be around water.  Period.  But, she loves it!  How can I keep her from experiencing that joy?  Especially considering all she's been through?  She deserves some fun, too!  And she is aware that she cannot go in the water freely.  If she didn't know, and wanted to jump in, it would be a whole different ball game.  

But I can tell you that I would NEVER, EVER, send her to the pool for a party without someone looking after her every move.  I've already said that I cannot take the three kids to the pool by myself.  I just don't feel comfortable taking two non-swimmers, and one who needs constant, close supervision, alone.  I do believe that's just simply too dangerous.  

I actually tried it for Murphy's swim team practice this week.  Usually, I take them, but I don't let them in the water and they have to stand by me the whole time Murphy is swimming.  This time I let them get in the shallow end.  But, even that was stupid.  Especially considering I didn't wear my swimsuit that night.  BIG mistake.  Other moms around me had to help me keep an eye on them, and I'm just not comfortable with that.  

So, back to what I was saying earlier... I get that we cannot control everything our children do (I am really at Harlie's mercy, so I know this to be true and try not to judge others).  However, I can't help but wonder how many times this has happened before?  Certainly Cooper didn't make him so mad that this was the first time he'd pushed a kid in the water.  While I couldn't hear what the kid said to Cooper, I could clearly see that Cooper didn't say anything to him.  And even if Cooper did speak to him, it would have been his three-year old speak - and nothing to cause that kind of anger.  

I don't know.  I guess I'm struggling with how I'm going to protect Harlie and Cooper from someone pushing them in the water.  It adds another challenge and burden to the pool.  I worried about them losing their balance and falling in, but I certainly didn't worry about them being pushed in by a complete stranger!  

Thank God he's okay.  It will be years and years before I can relax at the pool, huh?

Thanks!

~Christy

The Pool

I started to blog about this on May 5th.  We were in the hospital with Harlie's infection and I must have been in a BAD mood.  Seriously bad.  So, I had to delete it and start over.

Here's the gist of what I was trying to say...

Summer is a hard time of year for us.  It's the time of the year when a lot of kids get decannulated (get the trach out) on the trach board.  People go on vacation.  People other than us, I mean.  Tom has to use his vacation for Harlie's surgeries (just another perk of having a medically complex child). And we haven't been in a position to take a vacation anyway.  Heck, she's had heart surgeries the past few summers!

I've always wanted to join a pool.  But I thought we would wait until Harlie was no longer trached.  I never realized that she would be almost five years old and would still be trached.  So, we just couldn't wait for that any longer.  We have to go on about our life and live it to the fullest when we can - despite the trach.  So, we joined the pool.  Hopefully, it will make us feel less awful about not taking a vacation.

And we signed Murphy up for the swim team.

Hello swim practice every day!  Okay, four days a week.  Until next week when it increases to five days per week.  Good-bye any hope of getting caught up on my duties at home.

I tried to keep Harlie away from the pool.  Let's face it, the pool is not the safest place when you have an open passageway to your lungs.  But she saw me taking Murphy every day.  She could see he was wearing a swimsuit.  And carrying a towel and goggles.  She's no dummy.

So she started to sign that she wanted to go swimming.  Tom tried to make her happy with a baby pool on the deck.  No luck.  She signed "go, car, swimming".  Huh.  I suppose that meant that she wanted to get in the car and go somewhere else to swim.

Well, I'm sorry.  She has to live her life, too!  And she needs to enjoy it when she can.  So I took her.

And she's a TON of work!!!  She wants to jump in and swim just like everyone else.  But, she can't.  It's that simple.  So, you have to be super careful with her.  No turning your back for a sec.  And then add Cooper to the mix and you've got yourself a recipe for disaster.  Thankfully two of my nieces go to the same pool - so they've been able to help me with the kids when I'm there.

This is what she wants to do...

But she wants her whole body in the water.  She's 35 pounds now - so keeping her head safely out of the water takes some work!

I've tried to streamline going to the pool every day with a bag that's always packed and ready to go, a bin for pool stuff - like towels and toys an empty bag, etc.  But it is still SO much work!  Both Harlie and Cooper need my full attention and help to be in the water.  And practice is in the afternoons until school is out so we get home right at dinnertime, which makes things a little hard to get everyone ready to eat dinner.

This past week was worse than usual because Brandy was out - she got married!  Congratulations to her and Joe!

So back to swim team... Murphy's first meet was Sunday.

A parent has to volunteer during the meet.  So Tom had to time the second half swimmers.  Which meant he was there till it ended (near 11pm!).  Luckily, our friend Donna's son is on the same team as Murphy - so Tom took Zach and Murphy and then Donna picked them up when they were done swimming.  Which was still late - 8pm.  And there was a rain delay, so that made it later than usual.

The boys playing games while waiting to swim.
Murphy's on the far left.  

Murphy's worried look.

Tom's dinner.  Not cooked by Tom, of course.  

Murphy is so non-competitive in nature.  He pretty much moves in slow motion.  So, when he heard the word "race" at the pool that day, he kind of panicked.  And when he was swimming he grabbed the lane divider, which disqualified him.  He still has a hard time making it the whole length of the pool without some assistance.  I know he CAN do it, he just lacks the confidence.  Hopefully that will develop over time.

Plus, next week when there isn't anymore school, practice is offered at two different times - one session in the morning and one in the afternoon.  So, hopefully there will be less kids at each session, meaning that they will get more time in the pool and more time with the coaches.

Luckily, (and I seriously mean that) he seems to really like it.  I am so surprised he doesn't think it's a lot of work.  Maybe he does.  But so far he seems to like the positives more than he dislikes the negatives.  Thank goodness!  I think they have fun cheering each other on and hanging out on the side of the pool waiting for their turn to swim.  Whatever works.  I just want him to be active in something and be happy about it.  And so far, that appears to be the case.  If he overcomes his fears and builds his confidence then we will be thrilled!

That's all I have time for now.  It only took me six weeks to write this.

Thanks!
~Christy