Archive for March, 2010

If you could see the way she dances after taking a bite of something delicious,

If you could hear the squeals of joy when she see a family member she loves,

If you could smell the way heaven lingers on her just behind her ears,

If you could feel the way she melts into you as she squeezes you around the neck,

If you were lucky enough to steal a kiss from her,

If you could look into those blue eyes of an angel,

You would want to save her too…

Sarah (mommy)

This is in response to a friends letter to my mom:
Dear ….,
I love this little child more than life itself. Brian and I both wish we could give her the last 25 years of our lives and add 50 to hers. She is such a special little spirit from God, everyone who gets the opportunity to meet her falls in love with her. She has already blessed our family to such a degree that we feel like we have the spirit of youth and excitement about the miracles of everyday life again. I would do anything on earth to help her. This asking people for donations is very hard for me. I know in this life we are suppose to learn to give and learn to ask for things (probably to keep us humble) but I prefer giving…Our family and close friends gave all we could last year and we will continue to do so and thank everyone else who shared a part in raising research funds. Thank you for caring. Even if you can only walk with us and remember us in your prayers I know God will bless you so much. Thank you for your kindness from the bottom of my heart.
Yours friend always, Debra (Grandma)

Thank you to all our dear friends that are helping us find a cure for Cystic Fibrosis <3 It means the world to us all.

I haven’t found the words to express how I feel about your precious angel. I loved her before I met her and then when I met her my heart melted away. I was so overwhelmed with love. She looked at us for just the shortest time and then it seemed like she already knew us and could feel our love for her. It felt so wonderful.
The hardest thing was leaving. I tried to get away while she was sleeping; but it was hard to leave you, too! I was such a mess! Maybe you noticed.
Anyway, the miles between us don’t change anything. That little angel, in just one year, has taught us so much. About true love, compassion, courage, and the joy of living. How does she do that?
She is an amazing, precious gift from God.- G. Grandma Ginny and Grandpa Gary

Dear Baby Virginia,
On the night you were born your Auntie wished she could be there to hold you, kiss your sweet head, tiny toes and little knees and whisper sweetly in your ear, “I love you with all my heart, Virginia Blue.”. I will love you forever, Little Angel From Heaven.
Love, Auntie Shana

Ginger Blue! Thank GOD for you and all of the love you have brought to so many people’s lives. I only wish I was there to hug and kiss you. -Jessica Handgis

Ginger can bring a smile even to the saddest of hearts. Just like the Miranda Lambert song Virginia Bluebell “Put a little light in the darkest places.
Put a little smile on the saddest faces” That is what she does…every time I see her.

Oh..and the cure is coming!! They all just need to hurry up already though

My birthday wish for you is that this year and all years that come and go are better than the last year…better I mean, healthier, happier, more love to come your way without any effort, free just be all that can and want without any other burden on your shoulders. I love you Lots, Auntie Darlene

Little darling, baby Blue, I can feel God’s hand on you. Make her healthy, mend her lungs, as we bend and seek your love. Bring us laughter through our tears, make each day turn into years. Little darling baby Blue, I can feel God’s hand on you .

♥ Robin Bushner

We need a cure for this beautiful little girl who Gregg & I hold close to our hearts. Please  read her story and give. I know times are tough. however, this is something we can not ignore……pass it on, pay it forward, good Karma, prayers – what ever you believe in this is one you can’t pass on. Forward to all your friends as well and network far and wide for this precious little girl who just turned 1. -Therese

I read each breakthrough and how far they have come with this horrible disease. I believe that that there will be a cure for CF! May God shed His wisdom and light to everyone who researches CF! So we are with you Sarah & Derek in your prayers and hope to give your precious Ginger a full and healthy life. She truly is so beautiful. Blessings to you and may the Lord continue to bless her life with health and joy!
Love you so much!
Laureen

Ginger Blue ♥ We Love U ♥ I hope U and Ginger have a Beautiful Day! Love & Blessings Always ♥ XOXOXOXO~ Amber Tolbert

This is Virginia Blue, my baby cousin she is truly soooooo sweet.

Thank you Rosie for telling me about this song. It’s beautiful.

Well, I’ve been SO up the past few weeks I thought nothing would knock me down… yeah life has it’s ways of doing that though. Yesterday we got Thee Vest. What is The Vest, you ask? Well it’s a little box with 2 tubes connecting it to a black vest that shakes and pushes air in and out of your lungs. This new $17,000 contraption looks lovely in my living room. It really adds that extra something I’ve been looking for. No really though the more medical machinery that fills my home the more my heart breaks into a million pieces. It’s a constant reminder that things are not normal and they are not ok. Yesterday a women came to the door carrying the big box that would turn my day upside down. She walked in and placed it on our kitchen table. Ginger hugged my leg and watched like she knew this would change her days forever. Now this is a little advice to ALL the people that have any type of medical job. This women was a RT, Respiratory Therapist and she walks in here and has nothing positive to say. There are not that many positive things about this disease, ok there is not one positive thing, but I don’t need anyone to tell me what a TERRIBLE disease it is. I KNOW IT IS! I’M MORE AWARE THAN SHE IS! I live it EVERYDAY. I have to pray to God that he will fix this. I have to see my daughter fight. I have to give the hours of treatments everyday and sleep in a chair next to a hospital bed listening to the alarms and the nurses all night. I GET it, thank you. Do your job and tell me how to use the machine and then get out of my house, I have memories to make and playing to do. I just really will never understand people that don’t get it. I don’t want to hear how you’ve done this since 1974 and what a terrible disease it is. Don’t ask me how I found out or how I felt. I’m a mother! What do you think a mom feels when the phone rings and the voice on the other end says… I’m sorry BUT your daughter has a disease and you will out live her… How does it make you feel to read it? Now multiple that be a billion, that’s what it’s like… I also hate when you try to say something positive like, We’ve come a long way and we really believe a cure is near, followed by a blank stare and a sympathetic but not convincing smile… Yuck, just leave! I can’t wait for the day we get our hands on these drugs and they are out of a job. Now I have to say that when she was leaving she did tell me Ginger was lucky to have me and what a good mommy I was. The calm way I talk to her keeps her calm… bla blaaa bla. Too late, you already broke me. You stole a day from me I will never get back. You pushed me back to a place I never wanted to be again. People have power with their words. You could build people up or you could knock them down and walk away. Now as if the day was not hard enough then we had to strap this big black vest with tubes coming out of each side and watch our baby shake violently. This is done 2 times a day with her breathing treatments. Two hours a day spent watching this. How do you forget that there is thick mucus building up in her lungs like over cooked oatmeal, and that this is necessary to keep her alive. With out these treatments she would most likely not live past two. You CAN’T, you can’t forget while your holding your shaking baby watching the mist rise into your face. This day was too just too much to take.

I do want to say that yes I’m having a bad day BUT I still do and will continue to believe a cure is near. I will raise Ginger in a HAPPY home, full of hope and love and she will never know my fears. She will only know that she is strong and she will be fine. I will never let her see when mommy can’t hold it together. I’m beyond grateful for where we are at now with the treatments and that my daughters first birthday was a celebration not a half way point to loss. I wish I could hug the mothers and fathers that fought years ago and got us here. It was people before I was even born that gave my daughter a chance. I feel guilty when I think of what they went through and here I am complaining. But I am a mother and  I am allowed to be human and I can have a day where I hurt. This is why I will fight. I want to do my part too. I want to better the lives of future CF moms, like those who did for me. Mostly I want to see Ginger grow old and I want to make her proud. I will keep fighting in the hopes that she will still be so young when we get better treatments that she doesn’t remember all of this. That is my motivation. K~ tomorrow is a new day and I will move on, because you can not be in two places at once and I refuse to stay here. I’m going back to happy and hopeful, that is where I will stay. What does this Vest look like? Here it is.

What the machine looks like

Try if you can, try to ignore the half naked sexy man in this video. HeHe I’m so funny!

I’ve been slacking. So there is so much to catch up on! First off Ginger Blue turned 1 on the 3rd. What a special day! The year went by so fast.

I feel like I was just pregnant and now my baby is walking all over the house. It’s sad but at the same time I feel so blessed it’s hard to describe. I feel blessed that I’m finally a mommy. This journey has brought more heartbreak and tears than I could ever speak of. The miscarriages and the fear we would never have a family was overwhelming. Then our dream came true and we had the most beautiful, precious daughter and to find out she is so very sick. I hear so often, she looks great! Yes she does look perfectly healthy, but it stabs me in the heart to hear these types of comments. It’s just a reminder of what we fight all day long. I think it makes people feel better when they see nothing wrong. IT’S ON THE INSIDE! I want to yell, but I don’t I smile and say thank you. This has been on my mind after another CF mom brought up how it bothers her. I thought I was the only one. I’m not and I learn more and more I’m not alone. Derek and I have endured many heartbreaks in the past 4 years, BUT oh we have had joys no one could describe. Any one that has met Ginger knows she brings a smile to your heart like nothing else on earth. She has completely healed every hurt in me. I thought this was not possible. I use to ache so deep…

I feel blessed beyond words. I know my life is not ideal. I mean I know most don’t want to be in my shoes, but I wouldn’t give anyone my shoes anyway! I ‘m blessed in ways others wont and can’t understand, because they have not gone through what I have. Everyday gets a little brighter and I realize it more because I have my heart open.  God is with us every single day and I feel his presence more now than any other time in my life. I don’t think I would be who I am now without all these experiences. I have more trust in God and the people that love me than I did 5 years ago. I’m proud of who I grew up to be.  I love deep, I give my all, I will protect those I love, and I don’t take health and family for granted. I wouldn’t be who I’m without the hardships. Now why are you wondering I’m I feeling grateful for the hardships even? Ha! I know right! Well it’s because… GOD IS SO GOOD! He is fixing things. I know you’ve read that I have felt for some time that God has been giving me signs that a cure for Ginger and all with CF is coming. Yesterday was another great day. We had clinic yesterday, which always puts me in a tailspin. I get all anxious and depressed for about a week before we go. I always decide they are going to tell us she has to be hospitalized again. (the thought is too much to take) Yesterday was GREAT! Her weight is back up! Her lungs clear! Oxygen 99 to 100% (PERFECT!) Every single thing I fear was perfect!

I asked our head doctor that runs our CF clinic if she had seen the new video the CFF released on Tuesday. (this is it)

I told her this was the first time I heard them say more about the new drugs than the results sound promising… He says it looks like this could control and correct the disease! I asked if I’m just hearing what I want to hear or if that would be a cure? SHE SAID YES IT WOULD!!! I almost fell out of my chair! She said, I’m telling you we will be out of business soon. CF will be a thing of the past like Syphilis. God is GOOD I tell you. CF is the last thing that tortures my soul and it will soon be a thing of the past! My daughter will LIVE! Hallelujah. We are still years away from the FDA approval so us keeping her healthy is vital.  We will earn every dollar we can to keep these drugs moving through the pipeline as quickly as possible to save lives. Our happy ending is on the way!

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