A children's hospital for Richmond

I hope I don't regret writing about this... but I have been feeling so utterly embarrassed for a few days and I'm hoping that telling MORE people about it will help?!?!?  Sometimes I think I'm so goofy it's not even funny.  But, the truth is that writing here doesn't feel like I'm talking to a lot of people.  It feels like I'm just writing in a diary, and I usually feel better afterwards.  So, I guess I'll give it a go.

Okay, so you know how we had that awful experience in the hospital, right?  Well about a week ago we got this invite to attend this discussion about building a full service, free standing children's hospital here in Richmond.  A group of pediatricians started an organization called PACK (Pediatricians Associated to Care for Kids) to try and get this movement going.  I think there's been talk of building a children's hospital for a really long time, but too many problems arise and I guess they just haven't been able to figure out the solution to those problems.

I will try to explain the current situation and I hope I'm close to being accurate.  But, don't hold me to anything, okay?

The hospital that I think offers the best pediatric care here in Richmond is VCU/MCV.  The pediatric department is within an adult hospital.  They are trying to make some changes and one of those changes was their name - Children's Hospital of Richmond at VCU.  They have the association with MCV (Medical College of VA).

If a full service, free standing children's hospital were to be successful here, they would need the association with a medical school (clearly MCV would make the best sense since it's here).  The problem I think, is that VCU isn't on board with the whole idea.  It's complicated.  And I have asked several doctors I know, and I still walk away confused.  I just don't understand how it all works business-wise.  I think a little bit is that they think they are already providing what we need.  But, for what it's worth, we've been patients at three dedicated children's hospitals and I can tell you, for a fact, that Richmond doesn't have anything close.  It's not the physicians that are necessarily lacking (although don't get me started about the one from last week) and keep in mind that I love all her doctors here.  It's the facility.  The building.  The environment.  The passion and attitude of all the nurses, doctors and staff.  It just seems that if they combined efforts, an even better system could be available to our kids.  And how could that be a bad thing?

So, PACK is trying to get the community educated.  It's hard to believe, but most people who live here have no idea that we really don't have a children's hospital.  And if they know about VCU/MCV, they most likely would take their injured/sick child to the closest hospital for convenience instead of going to the location that would give the best care.  MCV is downtown and not convenient and most of the parents where I live would take their kids to St. Mary's instead.

Anyway, I knew about this movement, but to be honest, I just don't have the energy.  My plate is full and my energy is spent in other areas.  But, then we had that awful experience.  And while MCV has usually been satisfying, all things considered, this time they came up short.  The care in the GI specialty is inadequate.  Period.  And quite frankly, I'm betting there are some other areas that are the same.  When it takes weeks and weeks to see a pulmonologist (even if the child has pneumonia) I'm thinking they are short staffed and over worked.  And when you're the mom of a kid like Harlie, that sounds kinda dangerous.

This "meeting" was on Sunday night.  I was still tired from the events of the week, but we made arrangements and went.  I was really surprised at the number of people that were there on a Sunday night.  We're guessing there were about 150 people in attendance.

A few moms spoke and told their stories.  They had a few pediatricians and a pediatric anesthesiologist who spoke as well.  Everyone who spoke did a great job.  At one point they said they wanted to hear from the audience - stories, questions, whatever.  Tom tapped me on my leg and said that I should say something.  I guess at the time I wanted to tell them that we are a family that has had to travel to four separate hospitals, here, Norfolk, DC and now Boston.  Why did I want to do that?  WHY?  As I was sitting there, I knew if I were going to speak I had to just do it and get it over with.  If I thought about it too long I was going to chicken out.  I should have chickened out!!  But, I didn't.  And I freaking stood up in front of all those people and told them as briefly as I could about Harlie and how we are now having to travel to Boston.  I don't know how long I spoke.  It seemed to be very quick.  But as I remember some of the things I said, I can't believe I got that much information out that quickly!  I must have been talking a mile a minute.  Well, I was pretty nervous.

I think the second I stood up and she gave me the microphone, I thought, What the hell am I doing?!  I wanted to say, Never mind, forget you ever saw me.  But, it was too late.  Instead I told them that my daughter is 6 years old and has had 32 surgeries, 5 on her heart, 3 major jaw reconstructions, 2 craniotomies, she's had most of her right lung removed, etc. and blah, blah, blah.

As I was talking and looking at the shocked looks on people's faces, it occurred to me that her medical history sounds really bad when you just blurt it out like that.  It doesn't feel as bad when you live it day to day.

At one point during my... whatever you want to call it, I realized I didn't know how I wanted to wrap it up.  What was I trying to say?  What was my point for crying out loud?!?!?  Ugh.  I would have been better off thinking about it a little longer before raising my stupid hand.  It's all Tom's fault anyway.

I think I wrapped it up with... so, now we're traveling to Boston and it's amazing, blah, blah, blah, so having a children's hospital here would be really great.

Seriously??  So, looking back, I feel like a total tool.  I've been trying to not be so hard on myself, but I can't help it! I wish I could go back and never stand up.  As I tried to go to sleep that night I literally was in physical pain from the embarrassment.  I wanted to crawl in a hole and never come out.  Before the Florida sinkhole disaster (so sad!) I would have said, "I wanted the ground to open up and swallow me whole" or something like that - but I will NEVER be saying that again.  EVER.

I've been thinking a lot about it - trying to make my feelings go away.  But, it's complicated.  Here's what's going on in my head...

I don't like to be the center of attention.  I just want to live my life, have my wonderful friends and family and keep on trucking.  When I write here, I don't make anyone read it.  Ten people might be reading, or maybe hundreds.  I don't know.  But, I'm not making you do it.  Standing up and holding a microphone... well that feels like you're making people listen to you.  And everyone was looking at me.  I'd rather be in the audience.

I don't like to complain nor do I want to be viewed as a complainer.  Those people only know what they saw and what I told them in those few minutes.  They don't know the real me.  What did they see?

I'm clearly conflicted between living my life in private and sharing my story.  I've been asked about local news media before, and the answer has always been, no thank you.  Some days I think, her story needs to be told!  And some days I think, why should anyone care about her story?  Why does it matter?  It's just our life.  And we are living it happily.  So why is it a big deal?

I should have said something different.  What I should have said is that out of her 32 surgeries in the past 6 years, only 3 have been done in Richmond.  THREE!!  Which means that during the most stressful times in our life, we have to split our family apart, leave our children with others, and travel to another city, without any personal support network and no visitors.  This is considerably more difficult emotionally, and financially.  Tom has to pick and choose which surgeries he can be there for - and most of the time he can only stay for a few days.  Although, even after thinking about that - I don't think many people could relate to that.  Let's face it, we're not the norm.

I think it's safe to say that I'm better when I write my thoughts down versus jumping up and speaking to a crowd on the fly.  Seriously?  Have I lost my mind???

Thank God a few people said, "Thank you for sharing your story" on our way out.  I'm hoping that means they didn't see me the way I fear they did.  I would also tell myself that no one is going to remember what I said.  But, when I stood up and turned to face the crowd (we were sitting near the front) I noticed that it was being recorded.  As in video.  Awesome.  Can I go cry now?

I will say that overall, I'm glad we went (not glad I spoke, of course).  And for all my local readers, I want to share this...

One of the pediatricians that's passionate about this hospital being built asked the crowd if we knew where to take our child if he or she broke an arm.  Because there is only facility in Richmond that has a pediatric orthopedist on call 24/7.  "Do you know which one?" she asked.  She didn't say.  She then went on to say that her daughter broke her arm.  And she took her to a place that she thought was good.  The ortho (not peds) set her arm, which she found out later, was set incorrectly.  She then had to go to a peds ortho and have it re-set, correctly.

Another point they made is that all our pediatric hospitals are in adult hospitals.  Which means that our kids have to conform to the facility, instead of the facility conforming to kids.  I'll give one example of that... the elevators coming from the parking deck at MCV.  There are two.  And they are really small (and slow).  There are 8 levels, I believe.  More times than not, an elevator would stop on our floor and we couldn't fit in it with Harlie's chair.  And it's a small wheelchair-type stroller.  I've had to wait for several elevators - before one stopped that we could fit in.  It's not fun.

Anyway, I hope that we have smart enough people on both sides that they can figure out where the problems are and how to fix them.  As one of the doctors said on Sunday night, every other city our size has figured it out.  Why can't we?  So, if you're local, please check out the PACK website and read the FAQs.  

Okay, that's it.  Let's never speak of this again, okay?  ;-)

Thank you!
Christy xo

Gymnastics. The Good. The Bad. And the Ugly.

So, this morning Brandy and I took Harlie and Cooper to their first gymnastics class.  The class is from 9:15 to 10:00.  A 9:15 start time is a bit of a lofty goal for us - but I didn't really have much choice.  Harlie needs to be back home in time to catch the bus at 10:30.

Their classes are at the same time, in different rooms.  I chose to put Harlie in the 3-year old class vs. the 4-year old class because the class time is 15 minutes shorter (just in case she tires out) and I thought she would actually fit in better as far as physical ability with the younger girls.

Cooper is in a parent/child class.  Typically, I'm not a big fan of parent/child classes.  To be honest, I feel really silly in them and frankly, I'm not very good at helping my child get excited about whatever it is they want us to get the kids excited about.  Especially in a group setting.  BUT, I am willing to do what I need to do for my children's happiness and well-being.  Aren't I a good mom???

Back to the 9:15 start time being a lofty goal for us...

Harlie is NOT an easy child to get up in the morning.  Nine times out of ten we have to work pretty hard and long to wake her up and get her moving.  I don't know why.  She goes to bed at a decent time (usually by 8pm) and sleeps all through the night.  Twelve hours of sleep should be good enough, right? Then after getting her up, she needs to get her meds, she needs to be fed (which takes FOREVER) and we have to prepare her lunch, etc.

We did our best (after working very diligently) and got both kids out the door and in the car by 9:05am.  We pulled into the parking lot at 9:17am.  I know that I should have done whatever I should have done to get us there earlier.  I knew I was going to have to speak to the owners about Harlie's abilities and answer whatever questions they had for the instructors to feel comfortable with her.  But, I couldn't.  Sometimes it's just not possible.  Period.  I do my best and that's all I can do.  It's not like I was goofing off and, oops! guess I won't do that again.  No, it wasn't like that at all.

I suppose I could have gotten up earlier - before the kids - and prepared her breakfast and lunch, showered, dressed, packed her bags, etc.  But, I was tired.  And training for a marathon, my rest is important, too!  Maybe I should have done that stuff last night.  But I was busy doing other stuff that needed to be done.  So, that really wasn't an option, either.  Anyway, my point is that I'm NEVER early to anything, and not for lack of trying, either.  And if I'm only a couple of minutes late - I personally think that's an accomplishment.

So, we get the kids in the door and one of the owners comes up to us and asks if that's Harlie.  He is going to be her instructor and just had a few questions.

Of course Cooper isn't going to stick around for this conversation, so off he goes into the playroom they have there for waiting kids.  He knows about this room because we were just there with Murphy on Tuesday.

So, when I go to collect him from the playroom, he is not a happy camper.  Nor is he when I open the door to the parent/child class where all the punctual parents are sitting with their well behaved children sitting nicely on their laps, listening attentively to the instructor.  Cooper wails and squirms until I put him down and proceeds to take off and run amok through the room.  And, of course, I have to go leaping over equipment to catch him, and return him to "our" spot in the circle.  Well, let me tell you - he wanted NOTHING to do with any type of circle time or instructions given by anyone.

We were quite a sight, and not in a good way.  The more I tried to calm him down or keep him from running amok, the worse he got.  During the screaming and flailing, the instructor was still trying to keep the attention of the rest of the class and give instructions, while keeping all of this "fun."

At one point I asked one of the instructors, "what's the age range of this class again"?  And at another point, one of the instructors said, "Well it helps if you get here on time so he can listen to the rules".  hehe.  Yeah, right.  Cooper won't sit and listen to rules.  Are you kidding me?  Do kids his age even DO that????  And I wanted to say, "you have no idea how much work it took to get us here late, much less on-time"!

I couldn't make eye contact with anyone in the class.  The only person I saw (other than the instructors) was a mom who's son was in Murphy's class last year.  Honestly, I couldn't believe that she acknowledged that she knew me by saying hello to me.  Had she completely ignored me, I wouldn't have blamed her.  She asked me who Murphy got as a teacher this year.  But, that's as much as we could talk considering the circumstances.  She gave me the "I've been there - know how you feel" sympathy kind of look, which was very comforting and much appreciated.

There was no choice but to remove him from the class.  And frankly, I wanted the world to swallow me whole anyway.  I seriously couldn't get out of there fast enough.  The instructor said I should try to re-enter the room when they got on the equipment and maybe he would be better.

So, we waited until the kids started working their way around the room on the equipment and I brought him back in.  He just wanted to run amok again.  Which was even worse because now instead of just equipment I had to jump over to catch him, there were children everywhere!  The instructors were trying to catch him and contain him and engage him in activities - all to no avail!  To him - there was no one else in the room.  It was all about him and what he wanted to do.  Period.  He was an absolute wild child.  Like he was raised-by-wolves wild!

I could feel all eyes on me.  Judging me and my child.  And I know they are wrong.  Whatever they were thinking - they don't have a CLUE about me or my child or our life.  I know that.  But, it's really no consolation.  I was still embarrassed and very disappointed in my choice to enroll him in this class.  WHAT WAS I THINKING?!?!?!

We left again.  This time for good.  I came out of the room a disheveled sweaty mess.  Beaten.  By a 23-month old little boy.  In public.

Brandy came out of the room that Harlie was in and said she could hear Cooper crying.  She offered to take him so I could go watch Harlie.  Thank God for Brandy.  So, I went and watched Harlie and she was so stinking cute, it killed me!  The instructor would demonstrate what he wanted her to do, and she would watch, and then do the best she could.

There is such a difference between the way she moves and what she can do versus the way the other little girls moved and what they could do.  I am so thankful that she can do all she can, but I can't help but be a little sad, too.  Right now she doesn't notice.  But what's going to happen when she does?  And when will that be?   And she required a lot of one-on-one instruction.  Luckily, there were two instructors and four girls.

But, she stood in line, waited her turn, did what they asked her to do and looked like she was having a lot of fun.  The instructor said that she wasn't afraid of anything and that sometimes she held out her hand for assistance, but a lot of the times she refused his help, which he said wasn't disrespectful, just her way of saying she wanted to do it herself.  And he said she was very independent.  He said that if the class size stays the same - she will be great.  I asked him if I could pay a little extra if another instructor needed to be added for her.  Remember that he's the owner - he said that their job is to keep the kids safe, and if adding an instructor is required to keep her safe, they will not ask me to do that.  Isn't that great?!

So, in Harlie's case - a complete success!  I can't wait to see how things change from week to week.

After we got in the car to rush home so Harlie could catch the bus, I decided that I would call the gym and ask them to take Cooper's payment for his class and just apply it to Harlie's next session.  I really can't imagine taking him back there, to that class.  

But, a friend of mine said I should think about it over the weekend, calm down and make that decision next week.  I might ask the owners if he can go in that room when a class isn't in session so he can run amok and get it out of his system.  There was another mom there who said that her child was just like that for EIGHT weeks, until she finally got it and started participating like everyone else.  What I can tell you is that I don't have it in me to go through that.  No way.  I have too many other battles - I'm not paying money to fight that one.

Another thing - I know he needs more structure.  He's never been in line, or waited his turn, or been told to "freeze!"  He's never been to the library for story time where he had to sit and listen.  Our life just hasn't afforded him those experiences.  So, I'll see what I can do about exposing him to some of that and maybe just try again later.  I guess I'll see what they say and go from there.

Later in the afternoon, I heard a knock on the door.  Went to answer it and it was that mom that I knew from the parent/child class - with these sunflowers and a card for me!

Seriously???  What a nice person she is to bring me flowers and a card - knowing that I felt like crap about this morning's fiasco.  She totally made my day!  I really do feel lucky sometimes.  And loved.  Very, very loved.  Just not by strangers in the Otter/Pup gymnastics class.  Thank you, Brittany, for going out of your way to make me feel better!

That does make me wonder.... maybe the other parents just felt sorry for me.  Maybe they weren't judging me after all.  Yeah, let's go with that.

Well, it's Friday night, I have fresh sunflowers in a vase on my table for the first time in, well, ever.  The first week of 1st grade is over (thankfully! I'll write more about that in a future post) and the weather is cooling down nicely for a 55-degree, 15-mile run in the morning.  I think everything's going to be okay.

Thanks for reading.  And for not judging me.  In a bad way.  You can judge me in a good way, though.  If there is such a thing.
~Christy