Lend a little energy...

I just can't seem to get into the flow of work today, because of some of my friends that are on my mind. If you don't mind (and I know I'm doing this too much lately, but can't help it), send some energy/prayers for them.

Yesterday, little Harlie went through her Nissen (stomach) surgery and had her feeding tube replaced. The surgery is successful, and she's in recovery. This is great news, as it means she can move forward with her jaw surgery in two weeks.

Today, Jameson (three stories and photos of her) is having her Fontan surgery, which is part 3 in a 3-part series of surgeries for a child that has, essentially, half a heart. It's a tricky surgery, but Jameson's in capable, experienced hands. Many friends and family wrote a J on their palm to remind us frequently to say a quick prayer for her and her family. Feel free to join in.

One more... Amanda's finally home with a newly hole-ridden pelvis (thanks to 4 biopsies in the last month), but she's worn out. If you're from Richmond, try to make it out to Dumbarton Elementary today if you can donate blood (3 - 7 pm) at a drive held in her honor.

Now, to try to focus on work... ugh. I need some inspiration to write about microwave stuff, and I'm not finding it today!!

Send Positive Mojo to 'Manda

On Monday my friend Amanda was diagnosed with leukemia after having several weeks (well, really a few months) of weird symptoms that doctors kept dismissing. She's in for the battle of her life, so please keep her in your thoughts/meditations/prayers/whatever you do to send universal love.

Running for Harlie

I have the best reason I've ever had to get my butt back in shape. My friend Christy has a precious little girl named Harlie, who was born with more anomalies than anyone could ever anticipate. As you can imagine, her family faces incredible bills to help Harlie to be able to grow and thrive.

James River Grounds Management has created a fundraiser for Harlie as part of the Monument 10K here in Richmond. If you're willing to walk or run it, or would like to support me to do so (yes, my fat butt is going to do it), let me know or register using this link!! Here is the invitation 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. 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

7 For 7: Why I'm Happy

I hit a brick wall with an overload of work, CHD stuff, kids, colds, etc. today. Luckily my friend Karen has been kind to step up to the plate and take on today's 7 For 7!

7 Reasons I am Happy to be a Mom to a Child with CHD.

No parent is happy to receive a diagnosis of CHD, but CHD is not a death sentence. For today's post, Karen Ward shares 7 reasons she is happy.

1. I don't sweat the small stuff any more (or as much)
2. I snuggle a little longer at night when I tuck my kids in
3. I have met some WONDERFUL people
4. I have a stronger faith and better relationship with God
5. I am more thankful for what I have and have found that I want less
   
6. I have found strength that I never knew I had
7. I appreciate life so much more

Thanks for sharing your 7, Karen!

What I really meant to say...

So after the ranting and raving of my last few blogs, I'm taken aback that I didn't take the time to say what I truly have wanted to say... what I planned to post for the past year.

The past year has been an amazing one - with life, death, love and "war" all twisted into our daily routines. It's been tough for all of us, yet rewarding. All four of us have some personal battle wounds that we need to heal from, and we're finally pulling the pieces of "normal" daily life back together.

What I've learned this past year is how truly blessed I am for every moment I get to share with my children. Though I'm often pathetic at keeping my cool when they demand intense attention for hours on end, I can look into Sadie's eyes, see her scar or (heaven forbid) Katie's tears, and I'm immediately reminded how much worse things could be. I love my girls like there is no tomorrow.

I've also realized this past weekend that I've put my life on hold long enough. I've stopped "living" as I used to, and felt like I've been struggling with each day, just trying to get by and survive, until things could get better. It's funny, but the events of the past weekend were enough to finally jolt me out of the non-action trance I've been in and make me realize that it's time to stop tiptoeing around and start living life the way I want to and in which my family thrives. I've put a lot of time and effort into helping others (which isn't a bad thing usually), but at the expense of my family's time and my welfare. So it's time to change that a bit. No, I'm not going to go overboard and become a selfish, hoarding fool. But I am going to put my family and my needs first once again.

The other overwhelming thing I've realized is that, despite the isolation I felt this past year as Sadie recovered, I have an amazingly strong network of friends and family who have been there for me through it all. I was often tearing up this weekend as I recalled the things that different friends have done to make life easier for my family, me and especially for the girls. To see such a large group of them come together to sing "happy birthday" to our little girl was a memory I'll treasure the rest of my life.

I've finally begun to start the thank you notes I never could write last year. I wrote to her surgeon, whose expertise saved her life. I wrote to the ambulance driver, who held my hand and teared up with me when I told him to take good care of her on that first scary night... then promised she'd get there safe and sound. I left a note for the nurse at the hospital who held me up in the bathroom that night as I sobbed after Sadie was taken from me, as I the enormity of the situation finally hit me. But I haven't been able to really express my thanks to my friends - yes, I sent thank you notes, but they just don't do it. This weekend's "bash" was when I planned to talk to many and express just how much their calls, prayers, well-wishes, food, hugs and support have meant to me this year. I could not have made it through without them.

And to you out there, who still reads my blogs despite their dark air lately, thank you for your thoughts and support too. I love getting notes from the "lurkers" out there who have followed our family's story; or hearing from a friend that they're keeping tabs on us through the blog from thousands of miles away. It's great.

What I really wanted to say is THANKS!!