Weekend Update

To recap this past weekend...

Saturday was the Ukrop's 10k (6.2 miles). It was my first time to be in a seeded wave (you had to have proof - a past running time - to show that you could run that particular pace) which I thought was pretty cool. My wave was the one that would complete the race in 53-54 minutes. My personal goal was to complete it in 52-54 minutes.

Unfortunately, it turned out to be one of my worst runs - ever. Before I reached the first mile marker I knew I would not make my goal. I ended up finishing it in 56:00 minutes. I was pretty darn disappointed. Not necessarily in myself - I know I can do better than that - and have in training (like just the weekend before). And every runner has bad runs. I was just disappointed that my worst run had to be in a race. And I was feeling pretty crummy about it for a while. Until I realized that I have had much bigger disappointments - about things that are WAY more important than one lousy run. That's nothing on the scale of life. Especially my life! And on that same token (thanks Mel for helping me put it in perspective) I have had WAY bigger achievements. And just getting out there running when I can (which is not consistent unfortunately) is an achievement in itself.

Oh, and I have to thank my friend Alisha. After I finished my run, we found my brother, Bruce, and his son, Charlie, and went to cheer on my sister-in-law, Nancy and their girls, Maggie and Kelly. As we were standing behind the gates near the finish line scanning the runners for them, I saw Alisha. I yelled her name cheering for her and when she saw me she - stopped running, came over to where I was standing and jumped to lean over the gate to give me a kiss - then went back to finish her run!

Now that's the fun spirit you need when running. It's so easy to get caught up in trying to beat your best time. But sometimes it's good to remember to just have fun. She didn't care about her time. And she was laughing and having a great time. And that was exactly what I needed at that time. Funny how that happens. So, thanks Alisha!

And Tom ran the Kids Mile with Murphy. It was his first time doing it. Tom did a great job of getting him excited and making it something fun. Here they are right before the start.



And this is us after my finish.



After the race we had my parents and my brother's family over for lunch. I forgot to mention that my brother thinks he's funny. One of the first things he said to me when we saw each other at the race was something like - why don't you just tie Harlie up to the bumper next time? And back at my house, my Mom was pushing Harlie on the swing and Bruce yelled out, Hey Mom, just tie a rope to the swing and stand back here. He also told me, you shouldn't have skipped science class or something like that. Funny, huh? Yeah, I don't think I'll be living that one down for a while. Not one of my shining moments...

Feeding Update

Then for Harlie's "dinner" (still on Saturday) I thought I would try to get her to drink some. Prior to this moment, her sippy cup drinking had been spotty at best. All conditions have to be "right" in order to have a good feeding session. So, I put 4 ounces in the cup (5 ounces is a full feeding - but she's never come close to drinking all of that). Well, it was as if she knew I needed to be happy. She FINISHED all 4 ounces!!!! It was a wonderful session. She didn't complain or put up a fuss at all. It went beautifully!!! I wanted to put another ounce in there so I wouldn't have to hook up her tube feeding - but once we said "all done" there was no going back. So, I decided to wait a while and I would try again later. Well, about an hour later she drank the 5th ounce!!! So no tube feeding for that meal!!! WOOHOO!!!

On Sunday, I couldn't wait to try again. So, first thing that morning when Harlie got up and downstairs - we headed for the high chair. And holy moly - she drank the entire 5 ounces!!! Another tube feeding not necessary!!! Of course she threw up an ounce - but, hey, that's not so bad. Lunch was the same - all cooperation - no tube feeding! But dinner didn't go so great so I had to tube feed that one. Still - a great day!

And Monday and Tuesday went great with her drinking two out of three meals each day. All in all - she is doing FABULOUS with drinking from a sippy cup!

On Monday, Brandy was off, so I got to take Harlie to preschool. That was a fun experience. But I will have to save that one for tomorrow. It has gotten late!

Thanks!
~Christy

Ukrops 10k

The Ukrops 10k was on Saturday. Luckily, it didn't rain. I'm not one of those die-hard runners that will run regardless of the weather. Well, unless I'm doing it with 25,000 other runners. Peer pressure, what do you do? Anyway, my goal was to run it in 60 minutes or less. My time was 58 minutes and 18 seconds. Not bad. That comes out to a 9 minute, 22 second pace. I am very happy with that. I ran it with my friends, Heather and Neal. We had a great time. And hopefully, if Harlie's upcoming heart surgery doesn't keep me confined to the hospital for too long, I'll be able to keep running. I want to think that I'll be able to run while in DC, but I think that might be a lofty goal. It is hard to get downstairs to get food, much less to actually leave the hospital.

Speaking of Harlie's surgery, I'll have more on that in my next post.

Later,
Christy

Quick one

Just wanted to let you know that all is fine here. I worked this past weekend which was a nice break from the house. And tomorrow is my first day working during the week. I'm going to try it and hopefully I'll be able to juggle everything around to make it work so I can continue to work a couple of days per week. My mom is going to help me with Cooper, which I am very thankful for.

I ran 5 miles today in my training for the Ukrops 10k. WooHoo! I'm thinking that this whole working out thing is pretty essential to my mental health with a major bonus to my physical health. Sounds like a win-win situation to me. To be honest, my time at the gym is wonderful. It is nothing but "me" time with no one asking anything of me. No phone calls. No kids crying. No mess to clean up. If I ever think I'm just not up to going I remember what I would be doing if I DON'T go and that gets my butt in gear. Easy motivation there.

I have a video clip I have been trying to upload, but it keeps giving me an error code that I need to figure out. So, I'm going to work on that more tomorrow. And I have more I want to talk about, but it's too late now. So, I'll have more tomorrow afternoon.

Take care,
Christy

Ukrop's 10k info and other stuff

Well, now that Saturday’s Ukrop’s 10K is fast approaching – yes, THIS Saturday – I thought I would talk about it a little.

First, I would like to say that I have always been uncomfortable talking about our money situation – much less asking for donations, etc. to The Harlie Fund. So, when Maria Candler with James River Grounds Management, Co. approached us with her fundraising idea to incorporate the Ukrop’s 10K into a fundraiser for Harlie, we were very overwhelmed, and perhaps a little quiet. (See 02/06/08 entry if you don't know what I'm talking about).

Well, we are getting excited now. Tom’s been training and reached his weight goal of 175 today (his goal was to be 175 by race day). YAY for him! Although, I don’t think he should lose one more pound, or he’ll be too skinny in my opinion. All my family and friends have gathered around to support us. And, even people we don’t know have been out raising funds and/or will be running and cheering on Saturday. I cannot begin to express what it feels like to know that so many people (friends, family and especially those we don’t even know) have been touched by Harlie’s story and have gone out of their way to help her – and us. Seriously, there simply are no words.

There are so many times when I could be angry at what has happened to my sweet Harlie and all the many pains and battles she has and will continue to endure in her lifetime. But, it seems that the good in the people around us takes over and makes me so thankful. I really don’t have the time, nor the desire to be angry. My faith in humanity is restored on a regular basis. 

I’ll give you just a few examples. 

Maria Candler for one (that’s easy) for organizing this whole event. Then, a girl I met just a few months ago, Kim. I’ve mentioned her a few times. Her daughter is Sadie, and has a CHD, too. Well, she e-mailed me the other day and said that a friend of hers in California was having a neighborhood fundraiser for Harlie. Huh? What? Are you kidding me? It is times like these that I know this world is full of good people. And that’s what makes me not so afraid of Harlie’s future. She will touch good people for the rest of her life and she will be fine.

Enough of the mushy stuff (for now). Now, for the race details. We are going to meet around Birch and West Franklin (Monument turns into W. Franklin at Stuart Circle) sometime around 8am. If you are running or walking, please look for us around this area (it is about 1/3 mile from the finish). If we get there early enough, hopefully our group can be pretty big and obvious. Parking is, of course, on your own, wherever you can find a spot. As the runners finish the race, we’ll head on down to the finish at Monroe Park. They will have letters posted so you can meet your family and friends according to the participant’s last name at the end. I was thinking we could all meet under the Z to make it easy for all of us. Then at 11:30, we will meet Maria and the James River Grounds group, at the fountain in Monroe Park.

I know it will probably rain, but we’ll be there regardless. I am really looking forward to it. Good luck to the runners/walkers and know that you will have a good cheering crowd to support you.

Now on to other stuff: Our big news of the day is that Harlie got her new walker today! Traci (her physical therapist) surprised me with it today when she came for PT. It was delivered just a few minutes after Traci got here. But they delivered the wrong thing. Then the guy was nice enough to run over and get the right one and bring it right back over. It swivels VERY easily. So, her biggest challenge won’t be making it turn, it will making it stay straight! As soon as she started walking with it, she was going in circles. Hopefully it won’t take her long at all to get the hang of it.

We also got her Go Talk communication device today. Our speech therapist (Beth) came for ST today and brought me the photo pages that I made. We don’t have a color printer, so I made the pages with our photos and then e-mailed them to her and she printed them out for me.

I will take some photos of the Go Talk so you can see what I mean. It just might take me a couple of days to do it. I did get some video of Beth teaching Harlie how to use it. That is not an easy task, let me tell you. Repetition is key, and that can be very draining – for all involved. But, it seems that she catches on pretty quickly. It was very nice to hear Beth say that she thinks Harlie is smart. They’ve told me all along that her intelligence shouldn’t be affected by her medical issues. But, sometimes it is hard to tell when they are behind developmentally.

Tomorrow we are off to Children’s in DC for an ENT appointment. Well, that’s it for tonight.

Thanks for checking in!

Take care,
Christy

Fundraiser for Harlie

One of Tom’s clients (for those of you that don’t know, Tom is a kitchen designer at Classic Kitchens of Virginia) has taken it upon herself to go above and beyond for our sweet Harlie! She has organized a wonderful fund raiser for The Harlie Fund. She is Maria Candler and she is the President of James River Grounds Management, Inc. Below is a copy of the letter that she sent to all of the clients and vendors of James River Grounds Management.

Needless to say, Tom and I are overwhelmed by their compassion and generosity. Seriously, there are just no words for how much we appreciate this. If you want to run or walk in Harlie’s honor, just let me know. (Tom already started training.) I believe Maria is getting t-shirts made for the event. So, if you walk or run it, and you want a t-shirt, let me know and I’ll get the order to her. Here is the link to register just in case you are interested:

http://www.sportsbackers.org/10kmainpage.htm

Okay, here’s the letter…

January 29, 2008

Dear Valued Partner,

Whether we are ready or not, 2008 is here, and James River Grounds Management has an important New Years resolution that involves your support! On April 5th over 25 of our staff members will be running (or walking) in the Ukrop’s Monument Avenue 10K. In alignment with our resolution of giving more of ourselves to our community, we will be running in honor of a very special little girl.

We would like to tell you about Harlie Caroline Holton. Harlie was born on September 25, 2006. Her parents knew she was going to have challenges, but no one was prepared for the road that lay ahead. Harlie was born with an exhausting list of birth defects. The most emergent being a complicated heart defect called Congenitally Corrected Transposition of the Great Arteries. In basic terms, her heart is backwards. She had her first open heart surgery at just four days old, her second at six months, with a third to be at three years old. In addition, Harlie was born with an underdeveloped lower jaw and missing bones, forward low set ears, a dysmorphic left ear with no canal, left eye defects, vertebral anomalies, missing ribs, misshapen skull, anoperineal fistula and a lung defect that required the removal of most of her right lung. This is just what has been uncovered so far. Harlie has undergone seven surgeries and spent over four months in hospitals. This spring, she will face her eighth and ninth surgeries, as doctors work to stop her chronic vomiting so that her jaw can be reconstructed. The correct jaw construction will allow her to breathe and swallow normally thus eventually eliminating the need for a tracheostomy tube and feeding tube in the future. In spite of everything, she is sweet, happy, smart and beautiful!

What is most moving about Harlie’s situation is that her parents (who don’t ask for anything) have the most amazing attitudes toward these challenges. Their outlook has been absolutely inspirational to all of us here at James River. When reading the above list of challenges they have faced, it would be easy to understand how a parent in this situation could feel a little angry or cheated. But not the Holton’s. Not only is Harlie a blessing to them, but they truly feel honored to have been given the opportunity to raise her. The following is an excerpt from Christy Holton’s blog dated 1/20/08:

“…one thing I’ve started to notice more and more – is that the ones that have been honored to raise these special children feel so lucky, so blessed. How can that be? We deserve to feel cheated and bitter and angry! Well, okay, we do feel those feelings. But, more than that, we feel blessed and grateful. I find that so amazing. Those that have never spent one night in the hospital with a child recovering from life-saving surgery should feel like that. Those that have never had to learn about a rare medical condition, surgery, birth defect, how to be a nurse for their child, etc. should feel like the luckiest people on earth… I am incredibly thankful. Every single day Harlie completely amazes me. Now isn’t that something?”

We think it is. Caring for Harlie is more than a full time job. The equipment and medication necessary to keep her nourished and safe are unbelievably expensive. The surgeries that she has undergone and those that she will continue to face throughout her life will require her parents and older brother Murphy to sacrifice greatly. Furthermore, the family will eventually be required to travel out of state in order to receive the medical care that Harlie will require. In Christy Holton’s own words… ”I fully expected to lose my daughter, but then she was born and she had so many more problems than we ever imagined, yet she was so strong and surprised everyone with her will. I am truly honored to be her Mother. She is worth every ounce of effort we have to give to keep her safe and sound. She has changed our lives forever.”

As a tribute to Harlie and her family’s amazing spirit, we at James River Grounds Management are privileged to run (walk) for her benefit. What we ask of you is to make a donation to the Harlie Fund, a legal trust set up for her ongoing care. For every dollar raised, James River will match the donation.

Please make your check payable to The Harlie Fund.

Mail to: The Harlie Fund c/o James River Grounds Management, Inc.
11008 Washington Highway
Glen Allen, VA 23059

Please try to send your donations by April 3rd. We would like to honor the family with all the donations and a list of donors after the race on April 5th. For more information on Harlie, please check out her website http://www.babysites.com/sites/harlie/. For more information about the donations or the race please contact Cerise Estep, 804-550-3500. On behalf of the staff at James River, thank you in advance for your generosity in supporting this amazing little girl.

Sincerely,
Maria P. Candler
President