Fabulous, Oh So Fabulous!

Last week, thousands of you read all about Baby Daphne, the miracle of her life, and when Baby Daphne returned to Heaven. Early last week, I contacted several vendors and business owners asking if they would sponsor the miracle of Daphne's life and in return, I'd host a giveaway for them.

The first to respond was the incredible Jessica who is the genius woman behind Jewelry by Sebastian Design. I ran across her Etsy Shop a while back from another blog and immediately fell in love. She makes the most wonderful custom hand stamped jewelry and much much more!

Now for the details!

Jessica is generously offering this fabulous dog tag necklace to one lucky winner!

This is the description of the necklace from Jessica's Etsy Shop.

"This beautiful custom necklace includes a dog tag hand stamped metal tag, your choice of charm, chain, and Swarovski. You can choose a quote, name, multiple names, or an initial; I never charge more number of characters stamped!"

Now the rules to enter are very simple. Go visit Jewelry by Sebastian Design on Etsy and then leave a comment telling me which piece of her's is your favorite!  

EXTRA ENTRIES: (Be sure to leave me a comment for EACH one)

Like Jewelry by Sebatian Design on Facebook
Follow this blog
Like The Adventures of Mr. Superman and Mrs. S. on Facebook
Go and enter the other fantastic giveaway I have going on right now and receive 5 EXTRA ENTRIES!

Jessica also recently launched a deal a day site that is amazing! Talk about total steals! It's called The Local Giving Tree and is just awesome. Go check it out!! If you make a purchase from this deal a day site, send me your purchase confirmation and you will get 5 extra entries!

This giveaway will be open for 1 week. You have until Midnight PST on February 6th to get your entries in! Good luck and a giant thank you to Jessica!

An Angel Has Her Wings

Early this morning, surrounded by her mama and daddy, Baby Daphne Dawn Reading returned to Heaven to be with the loving God who put her here on Earth.

When Danielle told me about her passing, she said, "She's just so beautiful and peaceful." I know she is too. She has the kind of peace that only comes when we are again back in the arms of Jesus.

The number of lives she entered and hearts she touched can't be counted.
The strength and will of that baby girl is to be admired.

Against all odds, Daphne made it to 19 days old (today).

The prayers of thousands proved that when hearts full of hope and faith come together before God, He shows us His infinite love through miracles.

No one can say why God chooses to do things the way He does them.
That's why He is God.
He can see so much more than we can.
Hearts can question but that only makes it more difficult for our hearts to let Him in. 

I know that for me, the past two weeks that I have allowed myself to just SEE the miracle of Daphne's life, I have been able to FEEL God.

About 10 days ago, I was feeling all consumed by sadness. I kept thinking, "Poor Danielle and Drew." I asked Mr. Superman how such innocent, perfect, beautiful little souls like Daphne could be given bodies that fail. Why? What he said has been stuck in my head since.

"It's not our job to ask, "Why?". It's our job to trust. You can feel sad because it is sad but don't feel sad for Daphne. She is the lucky one. She gets to be surrounded by love and prayers but when the time comes, she will not have to stay in such a terrible place. Daphne won't ever have to grow up watching this world and witnessing the awful things people do. She is so lucky to get back to Heaven where whether we realize it or not, we all wish we could be more than anything."

He's a smart man that husband of mine and even though its hard to let that thought, that TRUTH, stay at the forefront of my mind, it is the TRUTH.

 Daphne's Miracle

God sent a angel to the Earth...The sweetest angel too  

And for such a tiny little thing, she had so much to do.

She knew she did not have much time upon this Earth to stay,  

She did not waste a single second; she got started right away.

 

Her eyes were bright and sparkly, she took in every turn.
She did not miss a single thing, because Daphne came to learn!

God sent her here to touch the hearts of those He could not reach,
She taught them courage, strength and faith, because Daphne came to teach.

 

Her tiny little body was so full of God above,  

You felt it when you held her, because Daphne came to love.

In 19 days she managed what many never will.  

When she went home to Jesus, her purpose was fulfilled.

She learned and taught, loved and played, she taught her lessons well.
I know God is so proud of her. She's now truly home to dwell.

 

But when you miss her OH-SO-MUCH, you can almost hear Him say,  

Please understand, her work was done...
Daphne did not come to stay.

If you have cards, letters, or anything you wish to send to the family, I can be contacted at

rachelleorgan @ gmail (dot) com

At this time, the family is not in need of monetary donations and would like to extend their immense gratitude for everyone that has shared their story and continues to pray for them. 

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I will continue to have this badge on my blog. Even though Daphne has her wings now, her life and story can continue to change the world and touch countless hearts. Please join me in continuing to spread Daphne's miracle.

Call For Help

I can't even begin to tell everyone how utterly grateful I am for all of your help in sharing Daphne's story!! Even more so, Danielle, Drew and Daphne are feeling every ounce of love, peace, prayers, and thoughts coming their way from thousands of strangers.

I am overwhelmed and humbled to know such incredible and giving people. In the last 24 hours alone, approximately 4800 people have either been told about or read about this precious miracle baby girl.

Its incredible.

Now I need your help once more. Its going to be just as simple as it was to share her story and just as vital to helping this strong little family.

Medical bills are expensive. It takes a lot of money to help miracles along. The world of medicine is truly awe-inspiring but it comes with a price.

The very last thing any of us would ever want to deal with or think about, were it us in a dire and trying situation, would be, "How on Earth are we going to pay for this?" Its more than a nagging thought, it can be a huge weight at the pit of our stomachs.

I have had many people emailing me, asking me what they can send to help Danielle, Drew, and Daphne along this tough road they are currently on. People have already begun to send blankets and little toys, things to make everything just a bit brighter for them. Now, I will say that it takes A LOT of courage to say you need help. It takes an enormous swallowing of one's pride to admit you can't do it all and then ask for the assistance of others. I don't think anyone would dispute that.

Insurance exists.
A necessary evil ;)
Its truly a blessing for Daphne and her family right now.
The other thing about insurance, there are co-pays, deductibles, premiums...

For Daphne's insurance to be covered, Danielle needs to be working. As you can imagine, returning to work while things are still unsure and unstable as far as her baby girl is concerned, is unthinkable yet payments, LARGE payments, still need to be made.

Now here is what can be done to help.

You can contact me @ rachelleorgan @ gmail (dot) com if you are wishing to send either a check or any other monetary donation. I will be able to provide you with the information to be put on a check and a mailing address where it can be received.

If you are a business owner, crafter, have an Etsy shop or any other sort of creative talent you share with the world, there are a few options.

You can offer a promotion in which your products or services will be discounted for a time, then either all or a portion of the proceeds can be put into Daphne's name as well. 

You can hold an online auction where items you wish to sell can be bid on, maybe starting from a  minimum price then either all or a portion of the proceeds can be put into Daphne's name as well.

You could raffle off items, or a collection of items. People who wish to enter pay a small amount and then the raffle proceeds can be put into Daphne's name as well. In a raffle, you could make more money than if you sold off each item at your normal price!

Just think, you'd be doing a small act of heroism for this baby girl and her family. Your talents would be doing SO MUCH GOOD!

In addition to you doing an incredible thing, anyone who hosts any sort of giveaway, auction, raffle, fundraiser... anything, will be featured here on this blog and linked up all over the inter-webs.

I have a few other possible things in the works for fundraising and if any of those things happen, I will share those as well.

PLEASE continue to share Daphne's story and make a small sacrifice by donating in any way to this beautiful little girl.



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Enormous Miracles In Tiny Bodies

Last week, I shared with you all about the tender mercies of God that have been taking place in the life of a very dear friend.

This is Danielle and Drew and their precious baby girl Daphne.

Daphne was born with Trisomy 18, a genetic disorder that is caused by there being 3 pairs of chromosome 18 rather than the normal 2.

The large majority of babies with Tri18 never make it past the womb and the ones that do, are rarely strong enough to live to see outside the NICU and hospital walls. Most deaths are caused by heart abnormalities, loss of kidney function, and other organ failures.

When Daphne was in the womb, doctors told Danielle and Drew that their baby girl would have to undergo major heart surgery after birth. They told the both of them a lot of things in an attempt to prepare them for what they were sure would happen. Thing after thing would crop up, they would try to help her, but in the end, she would pass away.

Daphne was born at 2:20 on January 7th weighing in at 3 pounds 11 ounces. A tiny little angel sent down from God to bless the lives of her mama, daddy, and anyone who would meet her. It took a few days but Daphne was officially diagnosed with Trisomy 18 and things seemed to be getting tougher for her.

A lot of babies with Tri18 end up passing away from complications and episodes of sleep apnea. Daphne's nasal passages and airways are extremely tiny and a couple times, she was unable to recover on her own which spurred nurses to bring her back around from coding. A couple days after she was born, the doctors sat down to seriously discuss with Danielle, Drew, and family about the reality of Daphne's prognosis and their course of action.

When I spoke with Danielle after she had met with all of Daphne's doctors, I was in awe of her strength. She stated everything very matter-of-factly but not in a detached, angry way that one might expect.

"I am so grateful for the time we have had to spend with her so far. It's definitely more than most babies with Trisomy get. We are so lucky. We didn't get a life expectancy but we now have a plan of action. We're going to learn how to take care of her. We will be spending time here at the NICU in the Family Overnight Rooms before they discharge her. Once she is at home, the time frame is typically a week to maybe a couple months."

She went on to tell me how the doctors had stressed emphatically the need to just let nature take its course. It was only more painful for Daphne to keep being brought back around time and time again. Between the two of them, they had discussed and then given a verbal 'Do Not Resuscitate' order. They had fully accepted whatever God's plan was and acknowledged how blessed they were for Danielle having had the opportunity to carry and give birth to Daphne.

On January 14th, the doctors suggested that Daphne didn't have much longer. Maybe a few hours or maybe she would make it through the night. Family and church members who care deeply for Danielle, Drew, and her little girl gathered around and gave that precious baby a name and a blessing.

Daphne Dawn Reading

Daphne's story has spread and there are COUNTLESS people whose lives have been touched and COUNTLESS prayers being said from all over on this baby girl's behalf. She has continued to improve and surprise her doctors. When she was first born, the damage to her heart is what had concerned the doctors the most. Shortly after that, Danielle was told that Daphne wouldn't need the heart operation they had been telling her for months would be necessary. Days have gone by and on January 17th, perhaps the best news yet was given. The holes in Daphne's heart are somehow, inexplicably healing themselves. Danielle, Drew and family members along with so many others including myself, have ZERO doubt as to how and why these miracles keep happening. The prayers and faith and hope of everyone  are healing the holes in her heart. She is alive and fighting because God needs her here on Earth to continue to inspire and teach those around her.

Daphne is now strong enough that today, she was discharged from the NICU in a Scottsdale Hospital. Something that a few days ago, no one was really sure would happen. She was transported to a Hospice House where Danielle and Drew will be given a few more days to transition to having her at home and along with her mom, will be taught about every little thing that will go into Daphne's care. Even with her feeding tube and oxygen, she will soon be at home in her own crib, continuing to bless and enrich the lives of so many people. 

Now Lovelies, this is where you all have the opportunity to be a vital part of this baby girl's life. Pray.

Pray your hearts out and spread the word. 

If you are on Twitter, Facebook, or have a blog of your own, the amount of power you have of spreading the word is monumental. By sharing a link to this post you will be potentially letting thousands of other people know about this miracle of a baby. When praying hearts combine in a joint effort, mountains move and the impossible happens. Just weeks ago, Daphne living was seen as the impossible.

A friend of mine said something about a week ago, when I shared about Daphne on Facebook. It has stuck with me and rings with a truth I rarely feel.

What a blessing. I know that baby girl has the power to change the world. 

She has already begun changing this world.  She won't stop.  Regardless of how long God allows this angel to be here, she will never stop changing this world. Her story and the countless miracles and infinite love she has spread will work wonders of their own. Now you can too. 

Grab the button (thank you Chambanachik!)

Post it on your blog where it can be seen

Keep the miracle going

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Tender Mercies

I have this incredible friend in my life who has continued to leave me in awe of her strength and grace this week. Danielle gave birth to an absolutely beautiful baby girl who was diagnosed with Trisomy 18. Baby Daphne has already touched countless lives and is proof of God's love and existence. Please, please, PLEASE keep Danielle, Drew, and Daphne in your hearts and prayers and no matter how long God allows this angel to stay on Earth, pray for all of the peace and comfort this amazing family deserves. 

We love you guys so very much and are blessed to have you in our lives.

Too Bad One Wasn't A Teratoma

Oh my dearest Lovelies, my dreams have been dashed all to bits!
Last week, I received some news.
Some very shocking, unexpected, nearly unbelievable news.

I went in for my incredibly fun, annual scans to check on my tumors rumtos.
My normal dude wasn't there. Boo.

Helga the Horrible (sporting the non-Brooke Shields unibrow) would not be swayed on telling me anything.

ZILCH.ZIP.NADA.BUTKUS.

She must not have been told how things work around there.
I show up, get my scans, make everyone laugh with my incredibly witty wit, and get sneak preview on what the doctor is going to tell me the next day.

Nix the rules.
They are my bladder, kidney, and thyroid gland tumors rumtos, not Helga the Horrible's!
Who is she to make ME, the super Mrs. S. with all my witty wit, wait?
Where was the justice?!
It must have been on a smoke break or something because even when I offered to tweeze her brow for her, she was not impressed.

Maybe I should have offered to take her for a wax?

Either way, that yatch wasn't giving in so I was forced against my will to wait until my appointment with my Doctuh the next day.

My appointments at The Cancer Center are always super duper long and leave me feeling guilty for having a full head of hair. I wasn't feeling particularly stoked about sitting in the Chemo waiting area to get my injections or the lab to get a bazillion vials of blood drawn for my gene testing, or sitting in the other stuffy waiting room that is full of the hissing sounds of oxygen tanks and the click clack of knitting needles, but it really was all unavoidable.

Mr. Superman hates coming back and wandering from area to area with me and I really do not mind just chilling there with my magazines, so he was up in the main lobby as always. Anyway, my amazing doctor comes in holding all my scans with a very furrowed brow line. He reminded me of Helga.

Imagine this in a super thick Indian accent. Well, his part.

"These are very, very clean."
"You mean... I sat really still?"
"No, they are clear."
"I took a good, non-blurry picture?"
"No, you are fine."
"Uuuhhhh..."

"I do not know what you did but all of your tumors are gone."
"Right. Uh huh."
"I am very confused, I have no explanation, medical or otherwise as to why they are gone. The last time I saw you, we had had such an infinitesimal amount of success, I was worried we were going to have to start going at them much more aggressively. They are gone. I am very confused."

By this point, I didn't even know what to say. I was about as stunned as Helga would be if she woke up with her brow shaved off. We talked some more and he kept assuring me he was not joking. He did not purposely admit to patients when he felt stupid or stumped. As I walked out and headed down to labs, I had this overwhelming feeling of just.... WOW. You know, the feeling all of you get when you think about my amazingness.

Anyway, I got one last round of injections to kill off whatever remaining bad cells I have and I don't see him again until JANUARY! I am getting tested for Lupus and a few other things because my blood disorder and the severity it is manifesting itself isn't making sense to him.

Well, just put it on his tab.

We let our parents know but we wanted to just let it sink in.
Its still surreal.
I'm tumor free.

We know what happened.
We didn't do anything.
God did.
He heard the thousands of prayers from all over the U.S. and He answered them.
I don't need medicine or science to explain this.
I do need to say thank you though.
My gratitude and love for all of you and for our families, is just so overwhelming its nearly inexpressible.

Thank You.

Even though I am no longer invaded by nasty little lump things, I am still a bit devastated.
My dreams of one of those little buggers being a teratoma wasn't realized.
Oh well, Nikki, no tumor in a jar for you.

Nearly There

I've been struggling.

I won't say that its been lately because truth be told its been going on since October 4, 2009. So I have been struggling for long enough to know that regardless of all my endeavors and hopes that there would soon be a break through or an unimaginable nearly miraculous improvement, its not going to happen.

When someone is drowning, out there in the ocean flailing their arms, perhaps screaming for help as their mouths are repeatedly filled with salt water, they don't continue to get stronger as time goes on. They slowly weaken as with each attempt to force their heads high enough above the waves, their feeble cries along with the rest of their fading determination are forcefully shoved beneath the surface relentlessly.

Its dark, its cold, its terrifying.

I have been thinking in circles and going over events over and over and over again. I've hinted before but the hints are growing stronger and soon, a statement will be made. A declaration and story will be let out and hopefully then, I can stop the ever crashing waves for long enough to gain some clarity and eventually see a glimmer of hope.

I'm nearly there and when I am, it'll be the beginning of freedom. 

I Just Don't Get It.

Mr. Superman showed me something earlier that just had me in awe. I have seen it before but I had forgotten some of it. Make sure you click the image so you can grasp the full immensity of it all. If it doesn't work, then you can view it HERE

I just don't understand how some people could look in the sky and some people even know about all of this, and NOT believe in God.