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.

Stop.

There comes a time when the ever-recurring cycle breaks you.
There comes a time when you stop because you are just...

tired of the fight.

When is the end of the rope?
When does the tide stop coming in, pounding your will relentlessly, over and over and over?

Why is faith and love not enough?

Despair resides where only you can see and feel while all others meager attempts at glimpsing a fraction of what is your reality, fall before they even take flight.

Who draws the line?
Who says when its been enough?

After a while, you let the tide take you.
After the long days and nights, weeks and months, and years that feel like eternities have knocked you down so many times, the small flickering light of hope goes out.

It gets to the point that you see what your reality has become and its easier to just...

stop.

The Reason For The Season

This is one of the coolest things I have ever seen.

What Day Is It?

What day is it?
Is it Friday?
Is it payday?
Is it the end of the work week?
Is it the middle of October?
Is it just another day?
I'm sure to most of you, the answer to all of the questions is yes.

To me, today is not just another day.
Today is October 15th, 2011.
Today is Pregnancy and Infant Loss Remembrance Day. Established by President Reagan unofficially in 1988 and then established by President Bush in 2007 and recognized as a National day of remembrance, it does a great service to a cause most people don't give much thought to if they have never gone through it.

Today is a day that I take the time to specifically remember each of our angel babies. Today is a day that I tell myself it is 100% okay to cry about the fact that we never got to meet any of our babies. Today is a day that I have a constant prayer running through my mind, more so now for all of the people who have experienced loss than for myself. Today is a day that my heart hurts. Today is a day that I find myself thanking God more often for His Son and for the gift of the Atonement. Through that, I know I'll not only get to see my babies again, I'll finally get to be the mommy I have wanted to be my entire life to our sweet babies. 

Even though today may just be another day to you, take a moment and say a prayer for those who've suffered the loss no one should ever have to because its not just another day to them.

Great site to donate and support pregnancy and infant loss awareness and to learn more

Feel Like Death

Fear not Lovelies, I am alive.
I just FEEL like death.

Surgery went smoothly.
The doctor found more damage than he expected.
We didn't get any good news out of it...
BUT
it went as planned and I came out safe and sound.
Right now, that's what I'm trying to focus on.

I've been hobbling between bed, bathroom, and couch...
Eating a lot of bagels, emptying my DVR, painting and repainting my nails...

I currently can't be without my two heating pads (the dark blue for my back, the light blue for my tummy), my two pillows (memory foam and squishy), ipod, headphones, phone, charger, water bottle, pretzels, and strawberry bon bons.

I can't even begin to tell you how utterly incredible my husband has been and continues to be. Leading up to my surgery, we were both the biggest bunch of cranky butts ever and even though his list of to-do's hasn't lessened, he is just so patient and helpful.

I'm down and out for another 2'ish weeks
So thank heavens for him.
And thanks for the prayers Lovelies.

You Know, Because My Lady Bits Don't Work

I'm having surgery.
Again.
In a few hours.

I wasn't going to tell anyone, then I thought, "You weren't going to tell anyone about your tumors either, but then you did, you got thousands of prayers, and you have amazed doctors" so, I'm telling you.

I'm having surgery.
Again.
In a few hours.
Pray okay?
Not so much for me, because I am honestly, one hundred thousand percent okay, but for Mr. Superman.
He gets nervous.
He sits there.
Alone.
For a minimum of 8 hours.
In uncomfortable hospital chairs, where its cold.
Sure, he has his phone, and his laptop, and his thoughts...
Its those last ones that get him in trouble.
So, pray for him.
Thanks Lovelies.
As always, you're the very best.

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.

Go Boost My Ego

(Just a note: I do realize its the 12th not the 11th but this is posting late. Sorry!)

I'm not trying to toot my own horn but I was asked to be a guest blogger for the cutest pregnant AF wife ever. 

I worked really hard on it so go help my head swell and read it, love it, and you know, think about it. 

All joking aside, today is a day that is somber for many. 

Please say a prayer for all those hurting from losing loved ones and for all of our brave heroes still fighting.

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1.02.28

I'm Back (I Think)

Holy crow. It's Monday. I've been MIA since Thursday. I'm back. I think. I am not anywhere near back to 100% but tomorrow real life resumes so I better be ready by then. I have no choice.

You know I'm sick when I have no desire to look at the computer, my cell phone, or the television. You know I'm sick when I don't have a screaming emotional breakdown upon finding a huge cockroach on the ceiling. You know I'm sick when the idea of blogging makes me want to throw up {again}. You know I'm sick when I lose my marbles 6 times in 24 hours when I haven't even eaten. You know I'm sick when I get 10 hours of sleep in 72 hours. You know I'm sick when Michael Cera can't make me laugh and when Daniel Radcliffe can't make me swoon. You know I'm sick when I set my Google Reader to Mark As All Read without a second thought because the idea of 500 New is utterly overwhelming. You know I'm sick when I lose 3.5 lbs. You know I'm sick when my abs feel like I've been doing Ab Ripper X for ten days straight when in reality I haven't moved much at all. You know I'm REALLY sick when Mr. Superman can drink my cream sodas without reprimand.

My many many thanks to everyone for their love, prayers, and concern.

My apologies to my mama who heard me lose my marbles from 2, 000 miles away.


My express love and overflowing gratitude to Mr. Superman for holding my hair back, carrying me to and from bed, drawing me baths, doing countless loads of laundry, cleaning the kitchen, rubbing my back, making me oatmeal, and most of all for not losing his patience with me. He is truly incredible.

I am so extraordinarily blessed.

POST EDIT: Don't forget about the fabulous giveaway by my Blogging BFF Nicole. PLEASE tell her I sent you!!

Worlds Turned Upside Down

I woke up today to a text from a friend. It was a shocking, nearly unbelievable and incomprehensible bit of news. One of my best friends from high school and someone whom I am still good friends with, has had her world turned upside down. The love of her life, and father of her little baby has been taken from this world. I don't know how he passed away but I do know that at age 22 it is the most unexpected, most undeserved act of life. 

To love someone is truly unselfish. Giving someone your heart, your life, your love is such a dangerous and scary thing but so worth it. She was able to spend a part of her life with someone who loved her more than anything, gave her a beautiful baby boy, and who now will be watching over her from the skies. Please pray for her. Pray for her baby. Pray for her comfort.