Make-A-Wish and Family Photos

The time has come for Harlie's Make-A-Wish trip. Well, the planning part anyway. 

I really put off this whole MAW thing for years (obviously). Her social worker at CNMC had mentioned that she was going to put a referral in for Harlie many years ago (right after Harlie's near death experience in March of 2018). I didn't really want to think about it back then, so I never followed up. It also took Harlie about a year to fully recover from that hospitalization, so I couldn't think about MAW at that time. 

Anyway, it was the summer before she turned 17 that I saw a commercial that said that it is only for kids under 18. Realizing that she was going to lose her chance, I knew I couldn't put it off any longer. Just a few days after she turned 17 (in 2023), I wrote to one of her cardiologists about it. The approval came THAT AFTERNOON! Isn't that crazy? 

Then we had to do a zoom meeting with a MAW volunteer and let Harlie meet her and answer some questions. We had to figure out what Harlie's wish would be. So, we asked her, "Harlie, if you could have anything you wanted, what would it be?" She replied, "I'd like to make bracelets." Um, no. Think bigger. "I'd like to see Wild Kratts Live." Bigger! (We took her to see Wild Kratts Live in May 2024. The tickets were a Christmas present that year.)

So, we asked her if she could go anywhere, where would she like to go? She said "Japan!" Too big. Haha! She says she likes the architecture and flowers/trees in Japan - and the ninjas. Haha! Then she said, "I'd like to go on a safari, like you did." Yes, when I worked at Operation Smile many moons ago, I went to Kenya on a work trip and then went on some safaris with some work friends. That was such an amazing experience and man, do I wish we could give that to Harlie. But, still, too big. MAW doesn't do international trips anymore. So, after some thinking and researching, she decided she would like to go to Hawaii. 

There's been quite a few hoops to jump through. They had a hard time with us not wanting to take a nurse with us. We just aren't there anymore with nursing. We would have to start all over with a nursing agency and we don't have any interest in that. So, that took some effort. They eventually said we don't have to take one. Murphy is over 18, so that took some effort, too. Regardless, all was approved. 

They sent us a worksheet to help us figure out which island we wanted to go to and what we wanted to do while there. Based on what she wanted to see and do, we selected O'ahu (also it is the island with the hospital, haha). Then they gave us a window of travel and we had to pick good/bad times to travel. I selected Murphy's spring break first, since I knew it would be hard/detrimental for him to miss a whole week of his college courses. Then we just had to wait for our time to come. 

Now, it is almost Christmas 2024 and we just got our dates for travel - March 8-15th, Murphy's spring break. We got our first choice!

I'm already stressing about it. I know that this is what they do, and they will do an amazing job. But, at the end of the day, we have to travel, and traveling is not easy for me. There will be packing and medical stuff, oxygen and her chair and long flights. What if she gets sick right before? Or while we are there?! We are going to have to ship some of her medical stuff, and we are going to have to rent some stuff while there. We can't take her power chair on flights, so we'll have to rent a chair for her there. 

Also, I know MAW is an amazing organization and I am grateful that it exists. However, no one wants to qualify. Well, I guess I can't speak for other parents. So, we didn't want to qualify. There's a whole emotional thing that goes with the reality that your child is getting a wish granted. I would give anything for her to be a healthy 18 year old who is off to college or work or wherever she would have wanted to go. I'm guessing she would've wanted to go off to college because she loves learning and she loves her independence. And the girl has goals - a doctor for babies and a veterinarian! Man, I can't let myself think like that... Instead we are working on a legal guardianship for her and a MAW trip. 

So, this isn't going to be easy for me. Just thinking about it brings me to tears. There are just so many feelings. Sometimes there's a fight,  or a tug of war, rather, between the grief in me and the gratitude. Either way I come out crying. Unfortunately, in life, the good doesn't cancel out the bad. All the MAW trips in the world wouldn't change what is difficult or impossible to manage. And they wouldn't give us back what we've lost. I do try so hard to be grateful - but I'm learning that gratitude isn't the Tylenol for grief. I'm going to feel sad about what we've lost no matter what. 

But, at the end of the day, I want Harlie to see things and experience things and this is something we could NEVER give her on our own. I also want us, and her brothers to have as many great memories with her as possible. So, I'm really hoping this all comes together so those things can happen. 

Since I haven't posted pictures in a while, here are some photos our dear friend Paige took back in November. Paige has been photographing my family since our engagement photos in 2002. 

Here is Paige. 🙂

I took some pics before Paige arrived.

Here are more of the ones Paige took.

Well, that's it for this post. Hopefully, I'll have time soon to write more. You know I have lots to say, haha! Thank you for reading!

Much love,

Christy xo

We Heart Harlie

The We Heart Harlie event is right around the corner.  The big day is May 18th.  Lynda Reider has been working so hard!  Just look at this flyer!

Wow, right?  Thank you to Courtney Lynch (and her company and employees) for this beautiful flyer!  I think she did a great job!  And thank you to Paige Stevens Photography for the beautiful pictures of Harlie!  I will post the rest soon.  They are just beautiful!!

This year the raffle and 5k have been combined into one day.  And Lynda has been working her magic getting lots of fun stuff organized.  She even got a firetruck lined up to be there.  There are going to be lots of good raffle prizes - I'll post a list soon.

We got new t-shirts designed and ordered, and they should be in any day now.  I'm so excited!  You can order them when you register for the 5k, or you can buy them the day of the event.

Here is the link to register.  http://www.racerpal.com/races/WeHeartHarlie.html

Harlie's school is so incredibly supportive of her.  It really is amazing.  The PTA passed out papers for the students to cut out hearts and decorate them.  Then they post them on the wall in the school - Hearts for Harlie.

They are going to do this through the month of May.  Isn't that the sweetest thing?  I want to share a Facebook comment from a friend of mine, Beckie:

What a thoughtful project.  So good for Harlie, but such a learning experience for the other children.  Kudos to teachers who see beyond the "book learning" and take advantage of such a powerful example that can't be taught any other way!"

I am truly thankful for how amazing Harlie's school (both administrative staff and students) has been to her and to our family. I never dreamed it would be like this.  And Harlie knows that wall is in support of her.

Today, she studied it.  And she picked one of the hearts off the wall.  It was a drawing of a little girl standing next to another little girl.  And the smaller girl is clearly a drawing of Harlie.  It has her bow and her trach.  It was drawn by a fellow Daisy.  I don't think Harlie realizes that.  But, she knows the picture is of her and another little girl.  And Terri told me that she held on to it all day.  And as soon as she walked into the house this afternoon, she showed it to me.  The whole thing is overwhelming.  I really had NO idea how loved she would be by other kids.  I feared the world was a lot more cruel.  I have never been more glad to be wrong.

Lynda runs the We Heart Harlie Facebook page.  And she's been working on the route for the 5k.  Since we will be running on a main road, she's had to get the help of some Henrico County police officers to help with traffic control.  I really don't know how she finds the time to do all that she does.  (And she leads a Daisy troop, too!)

She also wrote this story and submitted it to Richmond Family Magazine.  Isn't she something?  Truly!  I don't know how in the world I'm ever going to be able to thank her enough.  I think her husband is really looking forward to May 19th - when she doesn't have to spend so much time and energy on the Holton family!  Lynda and Rich - thank you!!

Much love,
Christy xo

Family Photos-December 2011

I have SO much to tell you.  But, until I have that kind of time, I just want to show you our latest family photos.  You might have already noticed the new photos on my blog.  Well, here are the rest of them.

We went in early December.  It was cold outside.  Not unbearable.  But still cold.  And our lovely children were far from cooperative.  Well, Murphy was.  Actually, I'm mostly referring to Cooper.  As if you couldn't guess.

Paige Stevens took the photos.  She's been taking all of our photos since our practice wedding photos - back in the summer of 2002.  She's awesome.  Even when I feel like the photo session didn't go well at the time, I'm always thrilled with the photos later.  I don't know how she does it.  Anyway, here they are...

He is a sweet one.

Her unhappy face. I just love the say she's sitting.   So grown up!

I love this one.

We were all supposed to look mad.  Clearly not all of us were listening.

He won't be able to pick him up much longer...

I love this one, too.

So sweet.

When are her teeth going to come in?!?!

Love.

This one is a favorite of Murphy's.

When Cooper saw this photo he said, "Cooper's trapped". 

Yeah, he's cute.  Although the beard is now gone.

Love!

And this one, too.

 Love them all!  But getting family photos stresses me out.  I have to coordinate clothing, and schedules and times.  What works with naps, weather, sunlight, etc.  Harlie squints in any sun - really bad.  So, I was worried about that.  But, it was slightly overcast and we were in the shade of the buildings.  So, that ended up working okay.  If you look at the first few photos of her you can tell we were inside - she's not squinting at all.   In the end, it's worth all the work and money.  They won't stay this age forever.  And neither will we!!!  And Paige makes it work - even if you're not where you planned on being.  And she makes everyone comfortable.  Thank you so much, Paige!!!

More later!
~Christy

Merry Christmas!

Thanks to Paige Stevens Photography, I finally changed out the pictures on my blog!  Whew, was that overdue!  I can't wait to show you the rest of the pictures.

But, unfortunately, that's all I have time for now.  It's late and it was a busy day, of course.  So, I'll have to save my actual writing for tomorrow.

Until then, I hope you all had a very Merry Christmas!

Love,
Christy

Weekend recap

Had a nice weekend.

To quickly recap - we got family photos taken by Paige Stevens Photography.  She's been taking our photos since 2002, when we got married.  It's been a while since our last session - summer of 2009!  And while I like the photo on my blog - I'm ready for a new one!

During our session she showed me a couple of shots on the camera and I was really happy with them!  I am so excited to see all of them!  It was pretty cold outside, so the kids weren't the most cooperative.  And after I got home I realized that we never got a photo with just the three kids.  At least I don't remember any.  I don't know how the heck that happened.  I think it might have had something to do with Cooper and his lack of desire to be a part of the whole process.  He is no longer a new walker like he was in our last professional photo shoot.  Nope.  He's a confident runner.  And he moves non-stop.  I'm betting he has ADHD.  But, it will be years before that can be confirmed.  And, who knows - maybe he'll grow out of it.  We an hope anyway.

So, I guess even if we tried to get the three of them, he wouldn't have gone for it.  We did the best we could and that's all you can do.  I know she got great ones of each of the kids alone.  So, I can always do something with that.

Hopefully I can show you soon!

That afternoon Tom and Murphy went to go get our Christmas tree.  We tried for a few years to go out and cut our own down.  And while I liked that - I just think that's a vision in my head that will not go as well in real life.  I want to start our own family traditions.  But, I know that in reality, we will be constantly calling for and looking for Cooper.  And I'm pretty sure there would be a substantial amount of yelling.  Which really messes up my vision of wonderful family traditions.  We'd be frustrated and exhausted by the time it was all said and done.  And Cooper really needs a nap.  Okay, fine.  We really need Cooper to nap (remember my aforementioned ADHD suspicions?).  So, in light of all that (and the higher cost associated with going to the Christmas tree farm) Tom and Murphy went to Lowe's.  And a family tradition is born!  At least until we can change it.

We put it up, but had to wait until the branches dropped a bit before we could decorate it.  So, we did that this morning.

So, decorating the tree... another vision in my head that didn't go as well in real life.  We put Christmas music on and opened the box and things started to go downhill.  I can't tell you how many ornaments the kids have broken over the years.  A few years ago I got one of those cute Hallmark mechanical ornaments on sale after Christmas.  The next year we opened the box for the first time to put it on the tree.  Murphy wanted to look at it.  Understandable, it is pretty cute.  And in the first minute of winding it up - he broke it.  Ugh.  And you'd think that I'd be over it by now.  We still hang it.  But now it doesn't move.

So, after repeatedly telling Cooper not to play with the ornaments, he broke one.  It was a glass scuba diver I got in Las Vegas of all places, in November of 2001.  I don't know why I bought it.  But I liked it and at the time I was recently certified to scuba dive.   Anyway, it's gone now, so I suppose it doesn't matter.  I picked up the diver and the pieces on the floor and then realized that he had ornaments in each fist.  So, a small tug of war ensued and I forgot to put the broken glass pieces elsewhere (than in my hand) so I got three small cuts in the scuffle.  Cooper got time out.  Yet my cuts still hurt and I'm pretty sure he has no memory of the time out.

Just making wonderful Christmas memories over here in the Holton Household.

Tomorrow we don't have a nurse.  So I'll be going to school with Harlie again.  It's actually not a bad day for me to go because Harlie has to leave early anyway to go to one of her private speech therapies. Yes, she sees two speech therapists.  Actually, three, if you count the one at school.  They all work on different, yet equally important things with her - so I think it's good.  And I would have her do more if it were possible.  But, as it stands, we are booked!

So, I'll write another post tomorrow while I'm there.  I just won't be able to post it because the school system won't let anyone on Blogger.  I've been working on a post from freaking October.  And it's a fun post, too!  So, hopefully I'll be able to get that one up tomorrow afternoon after we get home.

Thanks!
~Christy

Some Belly Shots

So, here are just a few of the belly shots Paige (Pictures By Paige) took a while back. There are more, but I'll have those later and will post them then. I love the way Paige finds cool places to take the photos - in my ordinary house. I never would have thought to sit on the floor in my hallway.