“Dear Jesus, I love you, I love you. Dear Jesus I keep you. I love you, I love you. Thank you Jesus”

I’m so grateful that she knows the Lord already and that their friendship will start so young. She will always have trust in him. There is no greater gift to my ears than to hear her pray.

It’s so easy to judge me. You’re every move does not determine if your child will be hospitalized with pic line or a port put in. You’re not worried about permanent lung damage and shorting your child’s life. You’re not worried about weight gain, or hospital germs, or pseudomonas (you probably never even heard of that one). The thought of your child being up all night coughing and choking on thick mucus, struggling for every breath, just because of a common cold is not a worry in your head. You don’t hear every sneeze, cough, and sniffle in a room. You’re not full of anxiety every minute of everyday. YOU are lucky. Why I’m I pointing this out? I don’t want sympathy. I want you to not judge the next person you see that is doing something you don’t understand or something you wouldn’t do.  

Do not judge anyone. You never know what they are going through. If someone is taking the time to do something that seems very odd or over the top they probably are in a different place in their life than you. Give love to everyone. That is so important in this hard world. We need to support others….

We go out to eat once and a while and I’ve noticed as I walk in with my own booster seat and tray and a handful of antibacterial wipes people start to watch you. The judging begins when I start to wipe down the table the seat and anything in reach (sometimes this is the wall.)  Now you start to see the faces. It’s like I’ve offended them. I set my precious child in her seat and then we sanitize our hands and I pull out all the pills. When someone sees you pop pill after pill in your 2 year old’s mouth they finally stop just watching and start talking. Now not every time does this happen but enough to tell you it really gets under my skin. For one thing all the things I do are a LOT more work than just walking in and sticking my kid in a filthy highchair that after waiting tables for 10 years I know are just brushed off and never really cleaned. I also know that the tables are quickly whipped down with a rag that has been floating in dirty water all day. Sure there is some bleach in there but when my child that wants to touch everything and then eat with her hands that is not good enough. I’m sure many think I’m a crazy over worried about germs mom.  They do not know because Ginger looks so healthy on the outside is fighting for her life on the inside. They don’t know that I wasn’t this person before nor did I ever want to become it. They don’t know what it’s like SO until you’ve walked in my shoes don’t judge me. Know that my every decision weighs heavy on my heart and that I struggle everyday to make things feel totally normal to my daughter even though they are not. Every person has their struggles and there are many I don’t understand but I will never judge a person I know is good for doing something I wouldn’t. They have their reasons.

This is my reason for everything I do.

Sept 8, 2011

‎”Don’t worry! I never never. I’m sorry I’m not sorry.” -Ginger Blue 

(I’ve been hearing this often and apparently it means I am not in trouble nor am I sorry.) 

Sept 3, 2011 

Ginger is zooming around the house on her tricycle. Being a mom is everything I hoped it would be. ♥ 

Aug 26, 2011 

Ginger is napping and I dropped something in the kitchen. I hear her yell from her bedroom, “Knock it off!” Hahaha! That kid. ♥ She’s gonna be spunky. 

Aug 21, 2011 

I say, “Ginger go get in time out!”
Waddling with a diaper full of poo she answers, “I can’t, I too stinky.” 

Aug 20, 2011 

Standing over my sleeping baby girl and thinking about how I didn’t ever know I could love anything so much. ♥ 

Aug 10, 2011 

“Mama ah… Ginger needs a pirate ship. And marshmallows.” -Ginger Blue 

 Ginger did so great at her first dentist appointment. After all she’s been through that was nothing! She’s my hero. I wish I was half as brave as she is.

Ginger wrapped her arms around my neck and said, “I wuv you too much my mama.”
Suddenly my favorite Birthday I ever had. ♥ ♥

June 22,2011

I made Ginger the most amazing homemade pasta… I ask her how it is (all proud of myself) she says, “Too hot.” I wait a while and see she still hasn’t eaten any. I ask how it is again. She answers, “Ummm no too heavy.”
My pasta was not a hit.

June 21,2011

“I put my sun scream on and go to the beach mama.” -Ginger

June 20,2011

Ginger is walking through the house with a pack of diapers and wipes. I ask what she’s doing and she says, “Changing my dinosaur.”
Who needs dolls I guess.

June 19,2011

Ginger at bed time says to me, “I wuv you Sarah… I call you mama.”

June 12,2011

My snuggling two year old turned to me and said, “I wuv you my sweet mama. I wuv you.”
I’m the luckiest girl on earth. ♥

June 7,2011

I stuck green play-doh up my nose like a booger thinking Ginger would think I was funny. She looked at me like I was crazy and said, “Green nostril?” Apparently my two year old is more mature than me.

June 5, 2011

“I like treasure.”-ginger
“What kind of treasure?”-me
“A dinosaur.”-ginger

June 5, 2011

On our drive home last night there was a rainbow over the road for a hour! I told Ginger God was smiling at us. She said, “I love you Jesus. Thank you Jesus. I hold your hand.” ♥

June 2, 2011

In the middle of dinner Ginger stops EVERYONE holds out her hands and says, “Talk to Jesus.” She wanted to pray again… My love for her is endless.

June 1, 2011

I ask, “Ginger what should I wear today?”
She answered “Panties.”

May 25,2011

Ginger walks up and gently touches my faded old PJ pants and says, “You look pretty mama.”
I wish everyone could see the world through her eyes. ♥

May 22,2011

Off to soak up some sun at the beach. ♥ Ginger said she’s going surfin.

May 18, 2011

Ginger puts the sticker from her orange on her nose and tells me. “I a princess. SEE?!”
…so that’s all it takes?

May 17, 20011

Baking a cake in our jammies. We are celebrating life.

May 11, 2011

On my knees scrubbing floors with a baby on my back yelling, “Yeehaw!!”

May10, 2011

Some people search their whole life for meaning… I’ve known mine since the day our eyes met.

May 8, 2011

Today we took ginger walking and there is a bronze statue of a little boy reading. Ginger stopped in her tracks and looked at his face really close and said, “An angel.” I asked her if that is what the angels look like. She answered, “Yes, look like.” I cried and cried.

May 7, 2011

I asked Ginger what she wanted for breakfast. She said, “I cookin… I makin butter.”

May 6, 2011

“I love you Ginger Blue.” she answers, “I louf pickles.”

May 4, 2011

Ginger pointed at the evil step mother in her book and said, “Stinkpot!”

April 29, 2011

Today I took Ginger to the toy store to get a doll. Did she pick the one that looked just like her with blond hair and blue eyes… nope. The Mexican one? No. She picked the black doll. I love a child’s heart of purity and love. She see’s no color. She feels love and that is it. I’m so proud of her every minute. I wish everyone had the heart of a child. This world would be a beautiful, gentle place.

April 26, 2011

Today I told Ginger, “You’re my bestfriend Ginger.” She answered, “I glad mom-mom.” ♥ She owns my heart.

April 20, 2011

Today I was driving a Ginger said so sweetly, “Mama I hold you.” It melted my heart so I reached my hand back to hold hers and she grab my finger, pulled it and made a fart noise.

April 5, 2011

Ginger pulled the bible off the bookshelf and said, “Angel, angel… I a angel.”
I knew it all along. ♥

March 3, 2011

Waiting for the Birthday girl to wake up… Two years ago today my life gained meaning. My heart will never be the same. Ginger filled it to overflowing. ♥ This day will forever be the best day of my life. I was given a miracle to watch over. Today she turns two. ♥

March 2, 2011

Ginger just came up to me and said, “I save you.” Little does she know she already did and now it’s my turn to save her.

Feb 12,2011

“Ginger what do you want for breakfast?”
“Not oatmeal” she answered.

Feb 9, 2011

“Ginger do you know why I love you so much?”
She answers, “I cute.”

Jan 31, 2011

I hold her little warm body against my chest and feel her heart beat. I put her down and watch my heart run across the room in her body. It’s terrifying and wonderful in the same moment.

Jan 26,2011

“Before I formed you in your mother’s womb I chose you. Before you were born I set you apart.”
Jeremiah 1:5

Jan 20, 2011

“Ginger you’re the best thing that has ever happened.”
She closes her eyes, throws her arms around my neck and says, “Yes, happy happy.”

Jan 15, 2011

Every time Derek does something I would praise Ginger for today she nods approvingly and then says, “Good girl dada, good girl.” Oh I love her so much. ♥

Jan 9, 2011

me “Ginger do you have a poo poo in your pants you would like removed?”
Ginger “No Way!”
me “Are you lyin’?”
Ginger “Roooooar!” (like a lion)

July 18,2011

…it’s been so on my mind. I think because I have my Birthday coming up on Tuesday and I don’t want to think about it. I honestly don’t care. I don’t want to celebrate it. What happened to the simple joys? My joy only comes from her smile. Her kiss. Her laugh. Her song and dance. I’ve been thinking about how the older we get it seems to take more to bring excitement to us. Is it the loss of innocents that steals the joy of a soft blanket or the bubbles of shampoo in the bath? Can I preserve the innocents she has with all the blood draws. The xrays. The pills swallowed. The Broncs. The hours of treatments? I pray she will not grow up to quick. That the world will not break her. That kids will not be mean or say hurtful things. My heart aches at the thought that someday she might not see the world like she does today. I know it really is just a matter of time. We all stop waving to strangers and dancing with our eyes closed. Today I’m soaking up the joy she brings me. I’m begging God never lets my joy leave me.

I’m a nurturer.

I think I’m funny.

I pray when I can’t sleep.

I hate cucumber melon scents.

I’m terrified of water that is deeper than a pool (I can swim but I don’t like it)

I pretend to be brave in front of Ginger.

I never thought I would need so much support and I’m so grateful to the people that love my family.

I love animals.

Sometimes the things you think will never happen to you do and it can define you.

The health of those you love is your biggest blessing.

Hard times will show you peoples hearts.

I use to be ashamed that I onlygot my AA, now I’m ok with that.

I don’t think my job, house or car say who I am.

My favorite flowers are daisies.

I love the smell of orange blossoms and gardenias. 

Be very cautious of people that love money.

My daughter is my reason for every thing I do.

I still need my parents to say they are proud of me.

I don’t like to disappoint anyone.

I get anxiety  all the time.

I’m a cat person.

I would save animals for a living if I could pick a dream job.

I’ve learned I’m stronger than I thought.

I can smile when I want to cry.

I need positive people in my life.

I hate when women cut each other down.

There are a lot prettier bodies out there but mine gave me Ginger so I win.

I’m a open book which I hate sometimes.

I love people that are passionate about something. It shows depth.

I love a cold beer.

If Ginger waves or says hi to someone and they walk right by I think bad thoughts about them.

I’m feistier than I should be sometimes.

I have a hard time fully forgiving or ever forgetting…

I met my bestfriend at 5 and my husband at 15.

If I love you I would do anything for you.

I love shoes.

I hate to shop for clothes. I get super grumpy.

I hate laundry in the basket so I do it everyday.

I’m a clean freak but I hate to do floors.

My favorite thing is a massage.

If I’m mad at you, you probably hurt my feelings.

I love to decorate.

I could spend my life savings at Target.

I love chocolate.

I love God.

I’m inappropriate.

I would give my life for Ginger.

I would be covered in tattoos if my mom didn’t get that disappointed look in her eye every time I got one.

Blood doesn’t make you family.

Actions speak louder than words.

I can’t deal with fake people.

I don’t watch sports.

I can keep a secret.

I love bleach and use far too much.

I write lists and love to cross off what I’ve done.

I’m barefoot 99% of the time.

I don’t wear much jewelry and I’m not a diamond girl at all.

The smile of my blue eyed girl is the key to my happiness.

I’m faithful.

I’m a fighter.

I picked a wonderful husband.

I still dream of having one more baby someday.

Don’t ever say it can’t get worse, it can.

I can’t think of anything grosser than cigarettes.

I love to dance.

Don’t take the ones you love for granted.

I pray my 30′s are full of

miracles and a

cure.

Ginger turned two and we had a small party for her.

To me two is still a baby. She is innocent and needs her mommy and daddy for everything. In the 1950′s TWO was the average age a child with CF would live. That makes this Birthday a gift. It’s hard not to think that if it were not for the mothers before me that Ginger may not have been here on her 2nd Birthday. It makes me feel so lucky and blessed to live now in this time. I wish she would have been born and that day cured but at least she made it to her 2nd Birthday and is healthy today. I think it shows how far we’ve come that Ginger can run and jump and play when just 50 years ago I could have been losing her. I couldn’t thank God more for the foundation behind this disease. I stand behind it 200% and could not be more proud to be part of this community. I would give anything to never known what this disease was but because I do I’m glad to have that type of faith in the people working to save my baby. This Birthday was so special because Ginger really understood it was all for her and we were celebrating her. She enjoyed every second of it. The next day when I asked her what she wanted for breakfast she answered, “A party.” She is my every dream come  true all put into a tiny little body. She has become my best friend too. We can go get a ice cream or window shop for hours on main street and never be board together. We laugh and she tells me silly things. She’s growing into such a sweet, loving, fun, spunky, honest, little girl.

On the 8th she had her two year old wellness visit and the doctor was very impressed with her. (Who wouldn’t be? Hehe!) She got a shot and she really cried. It was heart wrenching. She held me around the neck as we walked out and I promised her it would all be ok. We got in the car and headed to the toy store because for every poke she gets a toy is in order. She picked out Lego’s. On the way home we ate m&m’s and I told her I was so proud of her. She said, “Yeah Brave…” She is brave. She is two and had more blood draws, chest xrays, shots, medications, treatments, IVs than most people MY age. She might cry for  a minute but she is quick to smile again. She WANTS to be happy. She WANTS to live. I WANT to give her both. I will fight for her everyday of my life. Our walk is coming up in May and it makes me feel useful. I can be part of the foundation that is going to save her. On Monday we have parent night at our CF center and I was asked to talk a little about the walk and what makes our team a success. Here it is… YOU. You’re why we are a success. You’re support, love and participation are the reason. Ginger has stolen hearts and you have decided to not take a backseat and watch CF tare a family apart, but to fight to keep her with us. This is a fight we will not lose. Losing is not an option. Ginger is worth fighting for. She is worth every dollar given, she is worth every step taken at the walk in May. Two years old should not be a mile stone for any child. It should be a celebration with a whole life ahead to look forward to. You’re giving her and us a future to look forward to. Thank you!

http://www.cff.org/Great_Strides/SarahSampson6603

“Phew! What a terrific conference call! SO MUCH INFO! Here’s a recap:
The VX-770 trial is now considered a “home-run” for ALL CF PATIENTS! It was done for 48 weeks and patients maintained improvement the ENTIRE TIME (which has never happened in any other study EVER). They targeted G551D patients (all but 1 patient had only 1 copy of it). The reason they selected G551D patients is because the basic defect with them is that their CFTR membrane just needed to be opened, which the 770 does. (They likened it to having a salt shaker that’s clogged and salt can’t come out- the 770 pokes holes in the shaker and the salt can freely come out.) The results of the trial showed 10%-20% improvement in lung function in just 2-4 weeks using the “blue pill”! This improvement was sustained for the entire 48 week trial! The 10-20% is amazing, considering our other awesome drugs such as Pulmozyme, TOBI, and Cayston have showed 3-8% improvement (which we thought was wonderful!). Patients have reported feeling better, breathing easier, and an average of 7 pounds weight gain (compared to less than 1 pound for placebo patients). The pill seems to improve lung function, liver function, and intestinal process since it treats THE BASIC DEFECT OF THE CFTR, not just symptoms as we have been treating. Sweat Chloride levels dropped from avg 100 down to 53 (which 40-60 is Borderline for CF). Hospital stays and need for antibiotics were reduced by 50%! They mentioned that this isn’t the “cure” we are waiting for, but it does dramatically change the game. In a 5-10 year period of time, CF’ers lose about 10% of lung function. This turns back the clock and helps lessen decrease lung function damage, which prolongs their life significantly. It’s too early to say if it will prevent FEV1 decline, but it will certainly cut it by 50-75% hopefully. The drug is being submitted for approval and “fast tracked” so we will hopefully be approved in 6 months. They want to get it to anyone that needs it. Clinical trial patients who were using the Open Label will continue to be on it by signing on to another clinical trial extension. They are also hoping to get all FEV1 patients (less than 40% lung function) with G551D signed on for a clinical trial to use it until it is formally approved. No idea about costs for patients at this time, but they continually said every patient will have access to it. No definitive answers about enzyme adjustments, physio, airway clearance, etc. These all treat SYMPTOMS, which should still be treated, since this pill treats the actual defect. But the need and amount of treatments may decrease. The drug won’t fix scarring already done, but will help stop potential scarring by slowing the rate of decline. They reiterated that a lot of work still needs to be done, and that we are “in the 7th inning of the World Series and just scored a home-run. But the game isn’t over.” This G551D population is 4% of all CF patients. They are continuing to work relentlessly to capture the 96% of other patients who still need help. Dr. Beall said “We shall not rest until our work for everyone is done.” Since this is getting so long, I’m going to comment below this with other tidbits that I heard about, including what this means for DDF508/ nonsense mutations/ and 809 combinations.

This is where your donations are going!!! You’re making a REAL difference in people’s and family’s lives! My daughter is going to LIVE because people care for her. I’m going to sleep for the first time in a very long time knowing God is answering my prayers for her. We just have to keep her healthy until we get our hands on these. Lung damage is irreversible. Our cure is coming!!