Monday, July 30, 2007

Wonders of the world

I'm back from Missouri, where the ground actually steams after a summer rain...and the traffic lights sometimes get stuck with all three colors lit up at once. But I'll forgive them, because they have good barbecue and even better potato salad.

Sahara's party was lots of fun--and the guest of honor even got out on the dance floor, leading a train of her fans and encouraging her mother to shake her groove thing. One of the funniest moments of the night? Shannon and Amy were out on the floor, and Sahara caught them kissing...and grimaced like any other mortified teen.

There were kids, adults, a huge posse of nurses, teachers, friends, coworkers, hummingbirds, and even a curious doe, all there to check out the fuss and cheer Sahara on in her quest to conquer the world. Bless them all--and also the wonderful group of Sahara's friends who helped with invitations, addresses, party prep, and all the other tasks--even though they couldn't be there that night because they had camp or family obligations.

They were there in their hearts--and Sahara knew it. She had gorgeous flowers from the kids who couldn't be there (which proved to be much too tempting to her cat, Cleo). They are all an amazing bunch.

As for me, once I had a very long nap (because I am apparently old), I got to spend all day Saturday with Sahara and Amy. at their house, touring Cape and the surrounding countryside, and hitting the bullseye mecca: Target, where Sahara treated herself to a snowcone machine. Shannon was off in St. Louis enjoying a Cardinals/Brewers game, and so we were three relaxed girls together, hanging out.

I'm sure Amy will want to fill you in on everything I'll just say it was good--and once again, people were charming, gracious, and welcoming. And yes, of course Gramma Dooley was there...along with Mrs. Hecht (and her adorable children), Q the basketball coach, and the infamous Mr. Ellis, who allowed Amy to drag him onto the dance floor and proceeded to give both me and Sahara the nose-snorting giggles.

The reality is that Sahara is still a very sick young lady--but her spirit (and sass) comes through loud and clear. Her eyes shine, and she pops off her trademark laugh when it's well-deserved. During the trivia portion of the evening, when the adults were struggling for answers, more than once, Sahara calmly called them out. And they were right. She's in there, people. Don't forget that for a second.

Wednesday, July 25, 2007

When you wish upon a starfish

Thank you to everyone who sent good birthday wishes--watching them pile up yesterday was just wonderful. At work yesterday afternoon, while we were all gathered around a wickedly delicious black forest cake, someone asked about how I was celebrating and I mentioned how excited I was to be heading to Missouri to Sahara's party. The woman asked why, and I gave her the 15-second version of Sahara's year.

"What a tragedy," she said.

"No," I explained, "what a miracle. She's here with us...we're having a party!" I can't think of a better reason to celebrate.

Hello, everyone!
What a beautiful day we had...Sahara's 13th birthday. From start to finish, it was great. Everywhere we went, people gave good wishes to her, and it made her very happy. Special thanks to each and every one of you who sent cards, balloons, the gorgeous fruit, gifts and helped make this day a wonderful one!!!

Our house is so full of balloons that the cats are totally freaking out. LOL. And the SWEETS...WOW. So much good stuff to eat that I may just give up cooking for a couple of days and live on sugar alone. :) (Helaine, you reaaaally shouldn't have...but thank you!!!!!) And MORE thanks to Packy, Susan and Ally, we love you all!!!

We are so lucky to have great hospitals, doctors and nurses here in Cape. We do business with both Southeast and St. Francis, and everybody we deal with is so great. We visited both places today and were met with balloons, cards, candy, a cake from My Daddy's Cheesecake, and a giant vat of orange jello, which happens to be one of Sahara's favorite things. She claims that St. Francis makes the best jello on the planet. The staff knows she loves it, so they got her a BIG container of it...the look on Sahara's face was priceless. What a cool and fun thing to do!

Thanks to all of you for giving Sahara lots of smiles today!

We went to horseback riding tonight and it was great.They went riding around outside in the fields near the was a gorgeous afternoon and it felt so good to be out in the country. And they had cupcakes!!! We are going to miss riding so much these next few weeks, and can't wait until they start having lessons again at the end of August.

Sahara wanted hotdogs on the grill and macaroni and cheese for her birthday dinner. HA...and I have been lucky enough to find low sodium, all natural hotdogs.What a hoot. I make her mac & cheese with Swiss cheese, so that cuts down on the salt as well. I am now a boring authority on all things low-sodium, so I apologize who anyone who has the misfortune to have to listen to me. LOL.

Sahara's so excited about the party that she can't hardly stand it. I tried to send out as many invitations as I could by email, and a few through the regular mail, but I know I have missed some friends and teachers. So let me officially invite Sahara's wonderful classmates and teachers, from Alma Schrader, CMS, CJHS, Community Day and Christian School! And there's a certain favorite principal that she's hoping will make an appearance, and I don't have his phone number or email! Mr. Ellis, please come if you can!!!

Sahara's Under the Sea Birthday Party
Cape Elks Club, 6-10 pm, Friday night
No gifts please!

I wouldn't have gotten a fraction of this done if it hadn't been for Caroline, Maria and Ashlyn. Ladies, YOU ROCK, and I thank you so much for your help with names and email addresses!!!

Finally, I just have to say, "What a year." One year ago today we were faced with the awful truth and a grim prognosis. She was not expected to live to see her 13th birthday - and the fact that she DID makes my heart burst with joy and pride.

Sahara has taught me so much this past year...patience, diligence, how to keep fighting and NEVER, EVER give up. She is still able to laugh, joke, be sassy and smart alecky, and I am SO grateful. She gives Shannon such a hard time these days, and it is a riot.

I've been teased a lot about having a teenager now...about the rebellious tendencies and the gravitation towards random piercing and tattooing. LOL. I just laugh and say if she wants to get pierced or tattooed, we'll go with her and do the same. HA!! She can pretty much do anything she wants...because thank GOD, she is ALIVE!!!!

And we are thankful for each day that she continues to beat the odds. We are thankful for the prayers from all of YOU that have helped get us through some really dark days. Her birthday is, for us, another day of thanksgiving. And maybe, just maybe, next year she'll be free of this stupid tumor.

Thanks again to everyone for helping us celebrate!
With love,


Monday, July 23, 2007


In New York, it is officially our birthday. In Missouri, Sahara's got about 40 minutes left to be a kid...and then she's a teenager. Sahara, so help me, if you ever pierce anything or get a tattoo, you are in big trouble!

As for big trouble, don't you think she's done an admirable job of kicking that tumor's ass all year? Just a year ago, the doctors were all serious and solemn and intent on scaring the bejesus out of all of us. Hey docs! Y'all didn't realize who you were dealing with, huh?

When I blew out the candles a year ago, I wished for what the docs said was impossible. I asked God and the birthday fairy to give Sahara another year. One year later, I'm convinced it was the coolest wish I ever received. Guess how many years I'll be wishing for THIS year?

Why don't you all join me? Sometime today, buy yourself a cupcake. Light a candle, make your wish for Sahara, and blow. Let's light up the sky with all our wishes.

Happy birthday, Gramma Dooley

Given all the wonderful things you've been and done for Sahara, you are hereby officially declared a bona fide birthday triplet. The ceremony will have to wait until this involves licking the frosting off a cupcake, a secret chant, and some other nonsense.

I think you're supposed to wear pink Crocs, too...but if you've got a note from your doctor, I can probably get you off the hook on that one.

Five days until the big celebration. I can hardly wait! (And yes, that means I'll be there!)

Friday, July 20, 2007

Still bouncing, but with glee

After that Diet Coke fiasco, I managed to swear off caffeine for one whole day. I'm not a coffee drinker, but I do like my spot of tea--iced, of course, no sugar. Yesterday, I tried to do without, as I spent two days this week feeling as if my finger was duct-taped in an electric socket. Last night I had a small iced tea and am pleased to report that I didn't explode.

Now, I could continue to tease all of you about the big surprise, but...Amy has decided to throw back the giant curtain:

Hello everyone!
We're just coasting through the summer and loving each minute of it! Sahara continues to feel better, and she's so excited about her birthday next Tuesday. We are up to our eyeballs in birthday party plans, and it is SO wonderful...particularly since we were initially told that she might not make it to another birthday. They didn't realize what strength this girl has! :)

The biggest obstacle to doing birthday invitations is finding all of the addresses we need! I miss the days of the little directories we would get when she was in elementary school...they had all the contact information for all of the families. It made it so easy to reach the kids when an event was being planned.

We are going to attempt to send invitations to as many folks as we can and hope that we don't miss anyone. I may just post an invitation here on the blog! More details to come very soon.

The birthday blowout will be Friday, July 27th! Sahara did her horseback riding this evening and thoroughly enjoyed it as usual. We had some rain in the area and it really cooled down the barn, which was nice. There were three other kids riding during the time we were there, and every one of them was so happy. It's so obvious that this is an awesome therapy!!!

We're finally getting our house back in order after the construction. It is such a relief to have things put back in their places. LOL. I only have a couple of finishing touches to put on Sahara's bathroom, but she's done all of the design herself. It is SO pretty!I hope to post some photos this weekend.

I hope you're all making some time to enjoy these great summer days. It's my favorite time of the year. Have a great week!

With love,

Tuesday, July 17, 2007

Boing boing!

Oh my goodness, I've had much too much Diet Coke today. I usually stick to water or tea, but today was hot, the burger was crispy, and the soda went down so nice and cold. Now I'm bouncing off the walls.

All's cool in Saharaland. And I've got a secret. Shhh! Those of you in the know, hush!

Nancy C, I can't believe you're going to be in Westbury--literally 5 minutes from my house--and we're going to be on vacation that week. I'm sure you and your daughter will have a grand time!

Boing, boing, boing, boing!

Tuesday, July 10, 2007

Full of beans

It was 3 bajillion degrees in New York today, but I had an oreo malt with dinner and then went for a long swim. By the time I got in the pool, the water was warmer than the air. Delicious.

Hello, everyone!

Drumroll a guitar solo...LOL...THE BATHROOM IS FINISHED!!! Grampa Dooley came over Saturday morning and did the last of the work, installing the trim and putting up the cabinet and mirror. It is absolutely beautiful - what a transformation! After we get all of the rugs, towels and a shower curtain picked out, I'll post some photos. :) A huge thanks to all of the great guys from Miller Drywall and Dutch Enterprises who did such a wonderful job, and to Grampa Dooley for coordinating the whole thing!!! Sahara loves it, and it is going to make her life a LOT easier. And we couldn't have done this without the incredible generosity of the Rickfans and the Milwaukee fundraiser. You all will never know how much we appreciate what you did, and how much you have helped Sahara!

Oh, and as an added treat, Grampa Dooley brought us something special...Gramma Dooley's Should-Be-World-Famous Ham and Beans and cornbread. They definitely lived up to their reputation - SO good! Thank you for sending those to us! We enjoyed them so much.

We can now congratulate Gramma Dooley for contributing to the official wardrobe of General Hospital. Rick asked me to send him some extra Sahara bracelets, because wardrobe needed them for his dual role as Eli Love that's now coming to light. They kept what they needed and Rick SOLD the rest! So now we have other cast members proudly sporting Hope for Hoops bracelets. Woo hoooo!!! (BTW, I personally think that GH should have Rick, oops, I mean ELI, sing some Sahara Snow songs...hmmmm....)

A special thank you to Michalle G - we truly appreciate your hard work on Sahara's behalf!!!

We managed to sneak in an MRI last week - and the tumor is still STABLE! And everybody said, "Amen."


With love,

Tuesday, July 03, 2007

Starry-eyed, and love is all around us

There's a Rome apple tree just outside my window. It's still a bit spindly, but I've had it three years and each summer, I get a few more apples. The birds eye them beadily, and now and then, a brazen squirrel leaps into the branches, shaking the whole trembling tree, until I rap the window with a pen. This summer, I have a dozen blushed fruits, and as they grow, I've contemplated the pie I'm going to bake in a few months. I only need 7 or 8, so even if one goes bad or the squirrel outfoxes me while I'm at work, the potential is there.

But there's plenty of potential beyond cinnamon, sugar, and homegrown apples. I'm always telling people to watch for the miracles and messages. There are little gifts from God all over the place. Last week, when our sprinkler system went wonky and refused to shut off, a mother robin ran to the edge of the runaway spray and flitted, danced, and chirped (in appreciation, I think) as she enjoyed a cool bath on a humid afternoon. Yes, it was a crisis for us, and my husband was in a panic. But I saw the gift, and it was a treat. The sprinkler got fixed. Life went on.

And it will go on, even if I have to buy apples from a store, because one of the gifts this morning is a tiny yellow goldfinch, hopping from branch to branch and pecking away. Never mind that the echinacea I planted to attract him are finally in bloom. He's thrilled with my apples, and I'm thrilled with him.

Rest assured, I'm not turning this into a birdwatching blog. But I think there are gifts and lessons here for all of us. All over the world, and most recently, this weekend in southern Illinois, people have given Sahara, Amy, and Shannon the gift of unconditional love, along with hard-earned cash to help with Sahara's astronomical medical expenses. And while the money is so amazing and so appreciated, I'm willing to bet it's the gifts from your heart that stun them even more. At the very same time, every last one of us who follows Sahara's story, or goes to a pork chop benefit, or a Rick concert, or wears a swirly orange wristband--we've all been handed hundreds of gifts and miracles throughout the year.

Of course I wish Sahara had never developed this horrid tumor. But in the almost 12 months that I've known, the blessings have been coming like goldfinches in an apple tree. They make me believe.

Hello everyone!

Are you ready for this? The dinner/dance in Cairo Saturday night raised a whopping, unbelievable $10,000!!!! Between the pork chop dinners, the silent auction and the cash donations, it was the single largest fundraiser ever held at the Cairo Elks Club. It was beyond amazing! The place was jam-packed, and they even ran out of food, TWICE! We got to see so many people that we hadn't seen in such a long time, and there were so many people we didn't even know, who came out to support our sweet girl. God bless each and every one of you who attended - we were so honored to have you there. And to those who put this party together, wow. The food was delicious, the music was great, and the atmosphere was joyous.

A million thanks to Bobby Pace, the man who put this together and worked so hard to make it happen. He literally works seven days a week at Stop & Shop, making sure that the store has the best meat in the area, and he still managed to pull off the impossible! There are soooo many other people who were involved and helped so much...Jeff Berryhill, Stephanie Dixon, the Cairo Elks, Duke and Joanie Jones and Modern Woodmen of America Insurance, Ned Gunn and Bottom Line, all of the silent auction donors, everyone who sold raffle and dinner tickets, and everyone who helped in any way...THANK YOU. We are so grateful I can't even find the words.

When you see the people that you grew up with still standing beside you as you go through your life, it is the best feeling in the world. We are blessed with a small town history that has given us the best friends anyone could ask for...and we love you all.

Sahara was really overwhelmed by the night - she still can't get over how people come together for her. I don't think she grasps that she is so special that from the moment someone meets her, they never forget her. People can see that she is strong, they see the spark that somehow still burns bright in her eyes, and they see the love that she brings to everyone around her. I thank God for her EVERY DAY.

I hope you'll take a moment to check out the snapfish photo album and look at the fun we had Saturday night! (You don't have to be a snapfish member to see the photos; just click on the link!)

Have a great week!

With love,

Sunday, July 01, 2007

The old nag

Dear Grayson,

We know your name has come up in Sahara's blog comments quite a bit lately. Now for all of you thinking "pamela, you ninny, that horse can't read" I will just say one thing: hush.

Grayson is not the horse. Grayson is that wonderful lady who helps Sahara ride Candy. Candy is the horse. As far as I know, Candy doesn't read the blog.

At any rate, Grayson, we'll stop offering you sugar lumps, carrots, and fresh hay now. Will you accept a big virtual group hug and an enormous round of applause for what you've done for Sahara?

Best wishes,
pamela, Sahara's birthday twin