Tomorrow We Party!!

Media Darling

I haven't blogged in quite a while because sometimes it seems like there isn't much to say, but this week has been crazy with activity. On Monday morning, I got a call saying that a reporter from the local TV station wanted to come and interview Haley for a news story. I had about 2 hours' notice, but I was able to race home from work just in time to meet the reporter at our house. She had a big camera with her and proceeded to interview Haley about her life, especially these past two months. Haley did a great job and looked so poised and lovely. I snapped a picture of her talking to the reporter in her new room.

 

And here they are in the living room. Haley was explaining about all the get well cards she had received.

 

 

On Tuesday morning we awoke to see a huge spread about Haley in our newspaper. The reporter had come out last Thursday and interviewed her, Larry and me. She brought a photographer with her and he took tons of photos. We got to explain about Haley's surgery and the fundraiser at Grilled Cheese Mania. It was really a great article.

 

Then on Wednesday we found out that our local AM talk radio station wanted to do a live interview with Haley, me and Kathleen from Grilled Cheese Mania. Originally I told Haley that I would not be able to attend because I had to work. At the last minute, I was able to sneak away long enough to be on the air with her and Kathleen. Here is Haley just before we went on the air.

 

 

 And here she is talking to the DJ, Frank Wilt.

Tomorrow's The Big Day

On my way home from work this evening, I went by the event site and this is what I saw on the telephone pole:

(Great job by Ben and the gang at Mod Displays!!)

Details About Tomorrow

We are so excited about the fundraiser tomorrow.  It will be held from 4-8 pm at the Grilled Cheese Mania food truck. We will have items for raffle, including many gift certificates from local businesses. People have been incredibly generous. It is really quite overwhelming. We will have jewelry vendors, T-shirts designed by Haley and her friend Stephanie, and other wonderful items. Of course, the delicious food that Kathleen and company whip up at GCM will be available for purchase, with the proceeds going to Hope for Haley to help with medical expenses.  I'm also excited about the live music, featuring the band, The Responders, from New York (including my own dear brother Arthur!)  We will also have some other local musicians playing too.

So come on down and join the fun. Please park in one of the adjacent lots (the bank next door has graciously given us permission to use their lot), bring lawn chairs and blankets and plan on having a wonderful day with us. We will even have a little birthday celebration for Haley (don't tell her), as her 21st birthday is today.

As always, thanks for your support, friends. Please continue to pray for sweet Haley. Last night she was up all night with severe nausea, vomiting and pain. It breaks my heart to see her suffer so much. It' s such a great thing that she no longer faints  and that we finally know what is wrong with her, but the reality is also that Ehlers-Danlos is incurable and usually involves a great deal of pain. I plan to do some research to see if we can find an EDS expert somewhere who can help her with the ongoing, chronic pain. Please keep her and us in your prayers!

Party With A Purpose--Here We Come!!

The Plans Are Coming Together

Tonight we had a planning meeting for the big fundraiser. We will be having a fundraiser on Saturday, August 31 from 4-8 pm. We have changed the venue to the Grilled Cheese Mania Food Truck on Route 42 in Harrisonburg.

We will have live music and the yummy GCM sandwiches will be available for purchase with a portion of the sales going to offset the medical bills we have incurred. Tonight a group of ladies met at our house to plan. What a wonderful group of women. Most of them could, I'm sure, split an atom with their bare hands. Ha ha. Instead, they chose to use their talents to help our family raise money! We are so blessed!!

The event will also include a bake sale and t-shirts and jewelry for sale. If that were not enough, we will be raffling off several wonderful items! Our hope is that it will be a fun night of celebration with friends and family (they are coming from New York and New Jersey!!) and that we will raise a bunch of money to help us pay for the hospital bill for Haley's surgery in June.

Please  mark your calendar and make plans to attend. Haley will be there (it's the day after her 21st birthday, so she will really be in the mood to celebrate!), and she would love to see everyone who has supported her and our family during this long, tough journey.  So come on down and enjoy the food, music and company. Bring lawn chairs and blankets and plan to spend some time celebrating what God has done in healing our sweet daughter.

A Zebra Reunion and A Big Party

Party With a Purpose

Well the details are coming together for the big celebration/fundraiser for Haley. The date is August 31, and it will be from 4-8 pm. We will hold the event at our friends' farm in Mt. Crawford, Virginia. At this point we are planning a big celebration with food by our dear friends at Grilled Cheese Mania! Yum!! (More details to come.)

Right now we don't have an exact amount that we will owe for the medical treatment Haley had in Maryland. We do know that the hospital bill is just over $64,000. Of that, we have no idea what we will be responsible for. I called the insurance company the other day, and they said that they had denied the entire claim. My heart began to beat fast, and the woman on the phone said that they had requested more information from the hospital. I said, "So I don't need to panic?" and she said, "No, don't panic." I said, "Good, because that's more than our first house cost!!"  I keep reminding myself that God will provide for all our needs.

Any Helpers Out There?

We are still in need of a few folks to help with planning and behind-the-scenes work. If any of you are local and would like to volunteer, please send me a message on Face Book. We already have a nice group of folks who are committed to making this a smashing success, but we may need help erecting the giant tent on the day of the party, setting up, preparing food, doing publicity, and other things. So if you are gifted and so inclined, jump in! I can promise you we will have a great time!!

Update on Haley

Haley continues to make steady progress. She is continuing to go to physical therapy twice a week, and will soon add another day of pool therapy. She is getting stronger, and takes daily trips up the stairs to "visit" her new room. She loves it and just enjoys sitting on the bed and taking in the scenery. Right now, climbing the stairs still takes a lot of effort, so she will remain in the living room in the hospital bed for the time being.

Visit from a Fellow Zebra 

Last weekend, she had a visit from a new friend and fellow "zebra" named Sarah. They were both patients in the hospital in Maryland. Sarah had her surgery the day before Haley and they became fast friends. Sarah and her mom traveled from Vancouver, British Colombia, for a follow-up appointment with Dr. Henderson in Maryland. Haley and Sarah conspired to see if Sarah's mom, Sue, would drive down to our house in Virginia so the girls could visit. I thought to myself, "there's no way this lady is going to agree to drive 2 1/2 hours so they can see each other." I was wrong. They did  just that, arriving on Friday around 11:30 am.  They stayed until late Saturday night (actually 1 am Sunday morning). The girls had such a great time. They went for a drive on the Skyline Drive (Sue drove), and went to a Safari Park about an hour from here. They topped off their evening taking in a local production of Les Mis, starring our friend, Andrew. (It was Haley's third time seeing that production!)

Here's a picture of Haley and Sarah at the dinner table. Two zebra friends.

 It is so nice for Haley to have a friend who is her age who is going through much of the same things. And, she and Sarah have so many other things in common. When Sarah and Sue left, the girls hugged each other and said, "I love you" to one another. What a treat. Thanks go to Sue for making the sacrifice of driving all this way.  Here they are at  the Safari Park. Note the Zebra trash can!

For those of you who are wondering about the significance of "zebras", it is a term used for people with rare illnesses. You see, the saying comes from an adage that is taught to medical students during their training. They are told, "When you hear hoof beats, think horses, not zebras." This means that the vast majority of illnesses that doctors will see in practice are those common, ordinary things (horses) and much less likely to be the rare, strange illnesses they've studied in med school (zebras). Hence, anyone with a rare illness is considered a zebra. Many of them (like the lovely Sarah) have embraced this idea and collect all things zebra. Actually, I gave Sarah a zebra bag to go with her zebra purse, etc. In fact, if you look closely at her neck brace, you can see that she's decorated it with zebra stripes.

Here's one more shot of the two goofballs going to Walmart. They said that they got a lot of stares. A girl in a neck brace pushing another girl in a Wally-world wheelchair. I'm sure I would have stared too! haha

Things Are Moving Along!!

The Trend is in the Right Direction

I haven't updated this blog in a few days, because there isn't really that much that is new. Haley keeps improving slowly. She has had several visits from our music minister, Burress, over the past few months. He would come and play his guitar and sing with and to Haley. On several occasions he brought a JMU music major named Andrew with him. Andrew has an amazing voice, and on one of his earlier visits, he mentioned that he had been cast as the lead in a local production of Les Mis. Haley just about came up out of the bed with eyes wide (this was before her surgery, so she was at risk of fainting--it's a wonder she didn't faint from sitting up so fast!)  She found out that opening night for Andrew (the play was double cast, so he was on every other night) was August 2nd. She decided then and there that she wanted to go. So, we bought tickets for front row seats. She was hoping that she would be strong enough to go, but it was definitely a worthwhile goal.

Beach Getaway

This past Wednesday, Larry and I had a chance to go to Virginia Beach for two days. I so desperately wanted to go to the beach, as I had hardly been outside at all this summer. We had a wonderful time and even got to reconnect with old friends, Dave Nygaard and Mark and Lori Huenerberg. It was very relaxing, and we came home feeling refreshed. Here's a picture of us on the beach.

Our dear older daughter, Paige, agreed to come and stay at our house so Haley wouldn't be alone. She took great care of Haley, including giving her her medication. On Friday she helped her to get ready to see Les Mis. She then drove her down to her house in Staunton, near where we were going to see the show. We arrived at Paige and Peter's house straight from the beach, and when I saw Haley, I nearly cried. She looked so lovely. She had makeup on and was in a new dress. She looked like her old self.

Les Mis

We had a quick bite of dinner and then we were off to see the show.  When we arrived, the first person we saw was a former co-worker of Larry's named Tricia, who has been so very concerned for Haley. She spent some time with Haley before the surgery, and was moved to tears by the way Haley was handling this trial and the strength of her faith. When Tricia saw Haley walk in, she immediately turned her back on us and started to cry. When she turned back around she was still crying. Of course, just looking at her made me start to cry. It was the first time she had seen her since the surgery, and it was so dramatic and moving.  She said, "I can't believe you're walking!" It's so great for us to see people having that reaction because it reminds us that things are so much better than they were. Of course we know that, but it's great
to be reminded again.

The show was great and Andrew was wonderful, as was the rest of the cast. Haley made it through the entire show, but by the end, she was shaking from pain and fatigue. She was able to give Andrew a congratulatory hug, but by the time we were in the car, she was really hurting. We actually had to pull the car over at a gas station so I could give her some pain medication. But it was great to see her up and out doing the things she loves. On Saturday, she was still feeling the effects of her big night out, but it was such an emotional (and somewhat physical) victory. She is slowly taking back her life.

Party With A Purpose

I just want to let you know that plans are underway for a big party/fundraiser to celebrate Haley's recovery and raise funds to help with the hospital bills. The date is Saturday, August 31, which is the day after her 21st birthday! The location will be announced at a later date (they're still working on that), as will the other details, but I just wanted you to know so you could put it on your calendar. It would be great to have as many of our friends there as possible so we can rejoice together in all that God has done in healing Haley.

As always, thanks for your continued prayer and support. So many of you ask how she's doing, and it's such an encouragement to know that so many are thinking about and praying for her and us. Thanks for being the hands and feet of Jesus to us!