Archive for May, 2010

Alright not to brag… Ahh what the hell I’m gonna brag!! It’s one of my dreams come true! You will NEVER guess who emailed little ol me! I always tease Derek he’s my boyfriend… That’s right!! Bob Beall (President and CEO of the Cystic Fibrosis Foundation)! Or as I so fondly refer to him as Bobby! Hehe! I love this man so much because of the work he has done at the foundation and I know the decisions he has made are the reason we are so close to a cure. He’s my hero!

Every time I see someone from our CFF chapter I mention how I love Bobby and if I EVER could be somewhere he is speaking I would just die! When I spoke at our walk last month I said if I ever met Bob I just might kiss that man. Ha! Well I guess it paid off because one of the angels that works for our chapter sent a picture of Ging-a-roo to Bob and he took the time to write me! Here is the email I will cherish forever and I will put in Ginger’s baby book and frame in our house! **On cloud nine!**

Dear Sarah

Wow—is she a beauty—my wonderful friend Helen just sent
me a picture of Virginia Blue—wow what a cutie.  Helen also told me of
your terrific support of the Great Strides effort at the Redlands Great
Strides—what a team.
My pledge to you, is that we will use those dollars
well—-and you can look into those beautiful eyes of Virginia Blue—and
assure her that she is going to have the life that we all want for our children
and our children’s children.  That is my pledge to you and
Virginia—

Lots of exciting things happen and it is people like you,
your husband, and Virginia that invigorate and energize us every day to push
the frontiers of science and medicine

Thank you

BOB

Ahhhh!!!! Squeeeeelll!!!!

My dear sweet friends. I have fallen in love with this brave family (the Jones’) They have a little boy with CF like Ginger. He just turned 7. Today he is being admitted to the hospital again and he is not expected to make it much longer. There is nothing more they can do for him. His family is struggling on every level. They’re heartbreak is inconceivable. They are trying to figure out where they will come up with the money to plan a funeral for their baby. I can’t write these words without sobbing… I got together with Conner’s mommy, her name is also Sarah and we set up a place where donations can be made to help them pay for the funeral. We are half way to our goal. If you can help a tiny bit or spread the word it would mean the world to me. These are my friends and they are living my biggest fear. Please help lift one burden off them. Here is his mommy’s blog (http://www.notsobrightandshiny.blogspot.com/ )

If you would like to help them you can at

http://connerjones.chipin.com/the-conner-jones-fund

“I tell you the truth, whatever you did for one of the least of
these brothers of mine, you did for me.’” Matthew 25:40

Our sweet Ginger Blue is simply amazing. She seems to grow a little more each day. She is my dream come true. I prayed for so many years for a child to love and tonight I held my little sleeping baby in my arms and could do nothing but thank God. Every night I pray with her. We pray for all we love, we give thanks, we pray for the fellow CFer’s, & for a cure, I lay my hands on her chest and imagine God is touching her through me and renewing her lungs keeping them clear and healthy. I know God is our answer. God will give us the cure. All things fall into place and just as I waited brokenhearted for a child to love, I now am broken waiting for a cure. I don’t understand why anyone would have to go through what a life with CF entails but I have seen over and over again  what I thought to be my biggest heart ache fade into a blessing beyond compare. I will go on believing this is another one of those situations in life. One I will look back on stronger, more compassionate, and closer to God through.

When we went through our miscarriages I was at my lowest low up to that point in my life. I remember listening to this song by Damien Rice called Cold Water. I was begging God to hear my prayers to heal my broken heart. I felt like I was drowning. When I look back now I think my heart was being prepared for my ultimate gift. I was put in a place where I didn’t know if I would ever be a mommy and when I finally got Ginger I could be nothing but grateful. CF or not. I also think that the years we spent trying were years closer to a cure. We were not where God wanted us yet. Now I feel grateful for that time I was forced to wait. Someday I will look back on this time and know that it was necessary to make me realize the importance of living. Really living and not taking time for granted. I have also found that I am stronger than I thought. I’m an adult now that knows what is right and will stand up for that. I’m being shaped by all we are going through and there is some good in that. We will get through this. God gave me one of his angels hands to hold through it all.  I’m no longer drowning… I’m dancing in the storm, because I know that like before our rainbow is coming.

Last week was a very hard week for me. It really is amazing what a roller coaster ride living with Cystic Fibrosis can be. I have days were I’m the poster child for hope and some that I don’t even want to get out of bed. Thank God for Ginger’s sweet smile and sense of humor to pull me out of my rut. The reason for my last post being on the down side is I joined a group of CF mom’s which I thought would be really good for me not to feel alone or misunderstood. It is a great resource and a safe place to ask questions but the more moms you know the scarier this journey is. It makes it real to read of children in the hospital constantly, children I mean really young children dying… I just can’t take it. I love the support and love these women give each other, but it is all too much reality for this scared mom to take.

So here is the plan. I have learned so much in this past year about doing what is right for myself and the ones I love, because if I don’t it effects Ginger not just me. When I’m overwhelmed, scared and sad I don’t play as well or teach her what I should. I have to look out for me to help her. It is not healthy to surround yourself with anything but love and hope when you’re hurting like this. Anyone that is not there to love your sick child and be there for the family is not needed. I will of course do anything I can for any CF parent, but I will not submerge myself in others lives. I should know better when mine overwhelms me enough as it is. I have family and my close friends to lean on and I love them so much for that. That is the love I will focus on. I will focus on hope and a cure because I believe in my heart God is telling us it is on the way. I pray it is soon and Ginger and all the other sweet and innocent children don’t suffer anymore. I do have to say that I have met one of my very bestfriends (a CF mama) on this journey and I thank God for her and her support and love. Good comes out of all situations. I see that over and over.

Now on to what is important… Ginger is full of light and happiness. She dances and sings all the time. She walks and runs and spins until she falls over. She loves wellow (yellow) still and points to flowers sniffing the air. She carries her doll around and kisses her gently. She loves the cat and has even befriended Audrey (the most skittish cat you will ever meet) Ginger says what she means and means what she says. Most of the time it’s “no.” She loves to snuggle and play and be outside and eat strawberries and giggles when the wind blows her hair and she loves anything that is not a toy and she is wonderful. She is my life. She is my heart. She is one of a kind. She is Ginger Blue…

I am feeling really done with this whole CF thing. I hate the treatments. I hate the worrying about germs. I hate the stories of losing other CFers, so young and precious. I hate the anxiety of the unknown. I hate everyday that passes without a cure. It is one more day for Ginger’s lungs to be damaged. I’m just done. It’s time. We need to start saving precious lives. I want to do normal things without feeling guilty, like if she gets sick after we went out to dinner I will KNOW it’s my fault. I just want to be normal. I want to know that kids will be kids and they get sick, not feel like if she does I failed her and caused her lung damage. It is all so much pressure. I’m just done with it. I never want to hear one more insensitive question like, “How long do they live?” They? They? That is my baby. My life. My heart and soul. I live for her and can not live without her. She is a person. The most wonderful person you’ll ever meet. Why would you ask a scared mother these types of questions? You would be shocked how many times I have heard it though. I can not imagine what it will feel like to move on from that fear. The chains that keep you in your house. What will it feel like to have playdates and not have to call that day to say, “Everyone’s still healthy?” What will it be like? I’m ready to know. I’m ready to never say Cystic Fibrosis again. I’m done with CF.  I’m ready for our miracle…