Thursday, September 26, 2013

Praise Reports!!!

Not All Heroes Have Capes, But This One Has A T-Shirt

We travelled to Maryland today for Haley to have a follow-up appointment with Dr. Henderson. He was absolutely delighted at her progress and said that she looks wonderful.  He examined all of her scars and spent some time working with her on correct posture. He thinks that her headache is due to the imbalance in her neck muscle strength. He wants her to re-learn how to stand up straight with her head directly above her neck. He thinks that in time this will cause her headaches to lessen and maybe go away entirely!!!

After he was through with the exam, Haley presented him with a lovely card where she expressed her gratitude to him for "saving her life". He seemed genuinely touched and made sure he had the card as he gathered his papers up to leave the room. Then she pulled out one of her "Fight Like a Zebra" t-shirts and gave it to him. He was very thankful. Here is a picture of her presenting him with the shirt:

 
 
And here is one of the two of them with the shirt:
 
 

 
 
When the appointment was over, there were hugs all around. Dr. Henderson was genuinely happy to see that his care had made such a difference in the life of this patient. And, of course, we are forever grateful for this man, his gifts, and his compassionate care.
 
We are all so delighted that God led us to this wonderful doctor. His waiting room has several scrapbooks filled with thank-you notes, pictures and testimonials from grateful patients. This morning, as I was looking through them again with our dear friend, Kendra, (who came along for the ride), I realized how all of these stories are so similar. There are so many people just like Haley who have searched for years for someone to help them. Some of the stories sounded exactly like Haley's. It's amazing to think that God has gifted this man so specifically to help these people.  We are truly blessed.

Speaking of blessings, we finally have a total from the Hope for Haley Party with a Purpose. And that amount is.........(drumroll please)...........


$14,080.36
 
 
We are absolutely blown away by the generosity of our family, friends, and even perfect strangers who have donated this money to help us with the hospital bill. We still don't know what our portion of it will be, but we know that we have something in the account toward whatever part of the $64,000 we will have to pay.
 

Prayer Updates

Please continue to pray for Haley as she still struggles with headaches and some other body pain. She also has some nausea and vomiting, even though that is much improved since her surgeries. We are so grateful for everyone's support and will continue to pray that God will bless you all as you have blessed us.

Sunday, September 1, 2013

What A Party We Had!

Beyond Our Wildest Dreams

The Hope for Haley Party with a Purpose was a smashing success. None of us had any idea what to expect in terms of turnout, but my oh my, I was blown away. There were so many people that it looked more like a sea of people. Our friends successfully transformed an empty lot into what looked like a festival. There were several tents with vendors underneath and a makeshift bandstand (a flatbed trailer). Also, folks brought lawn chairs and blankets, plus we borrowed tables from Covenant Presbyterian and folding chairs from Eastern Mennonite University. I tried to capture it in photo form, but I'm not sure these picture do it any justice.




Donations came pouring in from everywhere. Local businesses generously gave gift cards and goods to be raffled off. There was a 50/50 raffle that, when won by a gentleman named Nick, was donated back to the cause. So incredibly generous. Thank you, Nick. Also, T-shirts were snatched up and adorned many of those in attendance. Fight like a Zebra!! We still have several in all sizes and colors. Send me an email at chicofam7@msn.com if you want some. We would love to sell out of these before too long.

 

Other things that were sold were these decals. These were made by our good friends, Lori and Mark Huenerberg at their business in Virginia Beach, Tidewater Emblems. They are a great way to show your support for Haley and show a zipper (for her scar) opening up to a new sunrise, which depicts the hope we have that her life will improve. It also has two butterflies (new life) and a Bible verse about our hope in the One who delivered her from the brink of death. These are very cool and are a steal at $2.00 each. I would love to see them on cars all over. In fact, this morning as I was leaving church, I noticed one on the care next to me!! (Go Gina!!) How encouraging that was to me. Here is a pic of the decal...
(If you want one or more, contact me at the email address above.)


Live music was provided by The Responders, Peter Driver,  Burress McCombe, and Mike and Seth Marsh. We are so grateful.



As for the food, what can I say?  Kathleen and her crew did an outstanding job of keeping up with the unbelievable demand. The line snaked down to the end of the parking lot for the entire event. People waited for an average of one hour for the delicious Grilled Cheese Mania offerings, and it was well worth the wait. In fact, at least one person said that he stood in line for an hour and a half! Those are some dedicated people waiting for some delicious food!! Kathleen never even got out of the trailer/shed to meet any of my family or visit with the jillions in attendance. She did peek out a few times to behold the sight! She said that she never even had time to snap a picture!  But I did...



How in the world can we begin to say "thank you" to everyone for their help. I saw people who had travelled from different cities and states just to support our family. It absolutely amazed us. We had friends come whom we had not seen in 15-20 years. Haley said it felt like it was her wedding or something, because so many came from far away. (I reminded her that she, in fact, does not have a groom!  Ha ha.) She was decked out in a tiara and sash in honor of her birthday, which was the day before. Here is a picture of her with our roaming 50/50 ticket seller, Steve. (There's Haley sporting that million dollar smile!! So great to see!)

 
 
 
Two birthday cakes were donated so we could all celebrate Haley's 21st birthday. One of the cakes even had the Hope for Haley sticker made out of icing on it! So cool!! Thanks Jerry and Grace! Here's a pic of that cake...
 
 
 
There was a sign thanking all of the businesses and individuals who had donated things to make the event so successful. It's really mind-boggling to see how many generous folks there are in our community who care so deeply about a sick girl and her family. It really warms my heart and humbles me greatly. I only hope that we can one day return these kindnesses.


Thank you, again, to all who helped in any way. We are so very grateful. If anyone still wants to donate, you can either use the "donate" button to the right of this blog, which is linked to a PayPal account that deposits money right into the Hope for Haley account. Or, if you would prefer, you can make checks payable to Hope for Haley and send them to  PO Box 570, Harrisonburg, VA 22803. I will let everyone know how much we raised when we get the final tally. So stay tuned, and, again, thank you everyone, a million times over. We love you all so much!!!

Friday, August 30, 2013

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!

Monday, August 19, 2013

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.

Thursday, August 15, 2013

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





Sunday, August 4, 2013

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!

Saturday, July 27, 2013

Big Secret Revealed

Extreme Makeover: Bedroom Edition

Today was a wonderful day. I have been keeping a big secret for a long time and today it was revealed. First some background:

Several years ago Haley asked her dad to paint her room red. I'm talking dark red. I was not at all a fan of the idea, but she explained to us that because of her migraine, she wanted a dark color so she could go in there and rest without the light hurting her eyes. So, of course, her dad complied. I always hated the color because it seemed more like a cave than a room. She had mentioned to me that if her migraine went away, she might want her room to be yellow.

A few weeks ago, I made a call to the "Head Angel", Karen, and asked her if she knew of anyone who was uniquely gifted with decorating as I was thinking of getting her a new bedspread and maybe a few throw pillows. I would be happy to fund the "sprucing" but I didn't have a flair for decorating.  I wanted to spruce up her room for when she would be able to get back into it. (She's still in the hospital bed in the living room because the stairs are just too much and, frankly, not safe.) I thought that I may be able to persuade my painter husband (summer-only painter, teacher the rest of the year) to paint her room for her at some point.

The next thing I knew, there was a full-scale makeover planned for the room. There were over 30 people involved and boy did they get going. The whole operation was spearheaded by Kristin, who is an amazing decorator. Larry was able to paint the room to coordinate with the new quilt that they bought. Curtains were bought and hung, as were lamps, a pillow, a throw, several picture frames, and various other tidbits. There are even plans underway to re-carpet the room thanks in part to Donna speaking with a local carpet company who is willing to carpet it at a discounted price! (Thanks, Weavers!!) Needless to say, this army of angels have been hard at work. Some were able to provide ideas, some hands-on labor, and some financial backing!

Needless to say, I have become a wonderful liar! Who knew I was so good at it. I have told Haley more lies in the past few weeks than I have in her whole life! I so wanted to keep everything a secret so that she would be surprised and boy, was she!!

On July 17, while we were in Maryland seeing Dr. Henderson, folks were at our house taking Haley's furniture out of her room so it could be painted.  Also, John W. came to install a new curtain rod. Karen and Kristin came by to drop off the bedding. On the way home from Md., I was texting Kristin to see if John was out of the house yet. She suggested that I might have to make up a story about a leaky toilet to explain his presence if he was still there when we got home. (What's one more lie?) He was gone and she suspected nothing.

So here a just a few of the before pictures. Actually, Larry was already in the process of painting and the furniture was already piled in the middle of the room.  Notice the color of the walls and of the furniture.
 

Now here is the finished product. Notice the framed things over the bed. They are things like ticket stubs from Broadway shows, pictures of some of her favorite people, a favorite verse, her most recent letter from Joni, a head shot of Lea Salonga (her fav Broadway actress), the Hunger Games dude, who is her celebrity crush, and her picture of zebras (medical oddities are referred to as "zebras").  Each of these treasures was smuggled out of the house by me and given to Kristin, who, with the help of others, matted and framed them (Kathy was the mat queen!)




 
 
 


This kind of says it all!!

So today, Burress, our church's music minister, and his family came over to sing with Haley, as he has been doing weekly since she's been sick. He mentioned to her that he had asked a few other people to join him. Haley didn't know that these were many of the ones who had re-done her room. We sang and some ladies (Donna and Julie) set up a party bagel in the kitchen (that was Haley's idea--Let's feed the singing people! haha). After we sang, Kristin gave her a card with the names of all of those who had a part in the project and then the card said for her to go up to her room. She looked puzzled, but with the help of Larry and some of the men, she ascended the stairs... slowly. Her sister Paige and I had sneaked up ahead of her to snap some pictures. Here is her face when she saw her "new" room.

What a great day. Before she even knew about the big surprise, she read a passage of Scripture and thanked everyone who was there for supporting her so well along this journey. What a sweet time we had. She told me later that she wishes she can spend time in her new room. I sort of wish we had an elevator in the house so she could!! But, as I told her, she is getting stronger every day and will be climbing those stairs in no time.

I know this was a long post, but I had to share all that has gone on here. It's really been over a month's work! Thanks to all who had any part in putting this look on her face! Our family continues to stand in awe of all that God has done and thankful for who He has used!