Archive for the ‘Virginia’ Category

Today I was thinking about how many times a day I think to myself, “Thank you God for this moment.” Here were a few from today.

Ginger wakes up from her nap and throws her arms around my neck squealing because she is so happy to see me.

Her stabbing a piece of banana over and over with her baby fork and then suddenly looking at the mangled banana horrified and then back at me asking, “What’s THAT?”

Her throwing rocks in the creek and then dropping a big one on my foot. I say OUCH! and she kisses me.

At night we say our prayers in the dark and in the quiet she yells, “AMEN!!”

She covers her mouth with one hand when something is really funny.

She yells  the happiest “HI!” to everyone she passes and if you ignore her she’ll throw in a sarcastic, “byyyye.” in passing.

She wants to snuggle when she is tired.

Her petting the cat so gently and saying sweetly, “awwww, awwww.”

This little girl loves life more than anyone I know. She LIVES every second and she makes me happy to be alive too. There is nothing sweeter then the love of Ginger Blue.

Ginger got her shots last Monday and we always go to Toys R Us if a needle in involved at a doctors appointment. I love that the toys she picks are usually something she saw on PBS.

Well today we survived clinic. Ha! I have to say that God heard all the prayers for Ginger and he held her and us in his arms today. Today was one of those everyday miracles that if you didn’t pay attention you might have missed giving glory where glory was due. We got there and Ginger and I baked in the sun while Derek checked in. She was she a good girl. Singing and saying, “voom, voom!” at the cars that passed. She Yelled “Hi!!” to anyone that would listen. She was in a great mood. It almost makes you feel guilty when you know what she is in for. We got called in and did our normal cleaning rituals. Ginger loves hand sanitizer and she knows when we leave home she gets to “wub” a lot of it all over her hands. We weighed in and she is 25.4 lbs!! That my friends is above the 50th percentile! This is a huge deal because kids with CF can’t absorb the fat in their food. Their pancreas is clogged with the same mucus that fills their lungs. Ginger eats more than twice as many calories as I do. It’s hard to get that many calories packed into small meals because her tummy is no bigger then any other 17 month old. In the 1950’s before enzymes came out kids with CF hardly lived past two because they would starve to death no matter how much they ate. Doctors want our kids above the 50th percentile because when they get sick the extra energy it takes to breathe and fight makes them lose weight. We were told that their weight as babies determines their lung functions at 6 years old too. So anyways that is why that is the worlds best news. We work so hard for every ounce on Ginger. I ask her, “Where’s your belly?” She will so proudly lift her shirt and pat her belly. I love it!

Her lungs sound clear! Her O2 was 98 but she was wiggly and I think if they would have gave her more time it would have been higher. They had a really hard time culturing her. She was not having it. I had to hold her and put one hand on her forehead and when she started to cry they stuck it down her throat. Oh it was sad! I hate it. So after we saw all the Doctors and thought we were done… the RN came back in and said we had to do yearly labs and Xrays… Ugh. So here is where our miracle came! The phlebotomist  came in and it was a new one. She had us lay Ginger down and Derek and I got in our positions. I always go to her head and nuzzle her Derek goes to her side and talks sweetly to her. The nurse starts poking her arm with her finger feeling for veins. I started to get nervous. I asked if she wanted to look at the other arm. She said no and kept poking. Ginger was unbelievably clam. She laid there watching the nurse. I know God was holding her and comforting her. She was nervous to have them just look in her ear earlier in the appointment. Then BAM she stuck the needle in quickly! Nothing. Ginger Just watched. The blood started to flow. Ginger was fine! 5 vials and she didn’t cry one tear. She has never done this well with blood work. In the hospital she had blood drawn every 12 hours and never once did well with it. I know God heard all those prayers and thank you. He held Ginger close today.

We had a VERY long day so we will do the chest Xray another day. Please pray for that and the culture results. That is what is scary about clinic. The wait is on. Pray everyday for Ginger. Her health and life depend on these results. Love you all!

If Ginger ever gets shots or blood drawn she knows we go to ToysRUs and she picks a toy. Today we went and I walked her up and down the aisles and past the dolls and Barbies and playhouses… She just looked and then we got to Discovery Channel toys and there was a Meerkat and Ginger lit up! She was in love! We also got her a Elmo chair that she loves!! It turned out to be a good day. A very long tiring good day!

This week did a number on me. Why you ask? Honestly I have no idea. It was partly a mix of reading a blog that really put a sour note on why we fight so hard for our kids and the second reason was the news of another young girl, Jessica (20)that was lost to CF. Tuesday morning I didn’t want to move. I was SO tired, felt like crying, my heart literally felt heavy in my chest and I wanted to sleep all day. Wednesday came and the same thing. My body didn’t want to move, I was achy. I was not getting sick… I just felt completely overwhelmed and so sad. I talked to my mama. She always knows best. I told her I was not my normal anxiety ridden self. I was depressed. She said you’re not trusting God. I heard her but did I listen? Nope. Thursday came and went and I felt the same. A special friend of mine informed me that she was moving on Monday all the way to Florida! It was so sudden! She said she wanted to get together before she left to say goodbye. Honestly this sweet girl has MANY friends and I was surprised with all she needed to do in a short time that she would make time to see me. It is known that we love each other but we don’t really hang out together very often. I was so honored she would want to spend one of her last afternoons here with me! We sat down and she told me how this sudden move came about after a very hard year for her she finally gave all her anxiety and worry to God and the very next day a series of events began to unfold that clearly was leading her EXACTLY where God wanted her. We talked and talked and her faith and strength really touched my heart. I felt God speaking to me through her words. I suddenly knew why I’m overwhelmed. I’m trying to find the answers myself. Just last week I wrote on a message board for CF families that I was looking for anyone doing the Ataluren study because I wanted to know how it was going, because I had put all my hope into that drug. All my hope? It hit me like a ton of bricks. This was the problem. I have been putting all my hope in everything but God. I’m overwhelmed because I’m putting my child’s life in the hands of humans. I need to give it over to God. Trust God! I said in my last post when we found out I felt scared to be angry with God. I was though. I still am. I have to stop pretending that I’m not totally crushed and hurt. I am. When I can admit it I think I’ll be able to move forward and put all my TRUST where it should have been all along. I never stopped loving God, thanking God, praying every single day over Ginger in Gods name, but honestly I felt like I had to fix this. I had to find the answer.  What makes me think I’m going to find it? Don’t get me wrong I will keep being Ginger’s advocate and searching under every rock for anything I can do to help her but I will put all my hope into God from now on. Instead of going on pretending I’m not angry (like God doesn’t know my heart already) I’m going to work on my relationship and trust. I want to give all these feelings over to God. I feel like it is important that I deal with these feelings and work through them, not mask them. It has been mentioned that I look into anti-anxiety medication or something. I think this would not fix the problem when there is so much to it. The feelings I have are VERY real. I have them for a very good reason. I think that it helps me make better decisions for her then if I was a subdued but happy person. I’m never going to completely be the happy go lucky person I once was. I don’t think anyone can completely be that after having children. To have your heart walking around outside your body is a scary thing, but I think putting less pressure on myself and letting go of what I can will really help me. When I came home from lunch I got a very encouraging email from another CF mom (thank you Emily) and then I logged onto facebook and there was a photo of a rainbow. I have seen a rainbow always at my lowest and really felt it was God giving me comfort and peace. Letting me know he is there. I needed it today. Then all of a sudden the saying, “out of the blue” came into my head. I thought our miracle is going to come out of the BLUE. (Ginger Blue   that is) I prayed with Ginger tonight and she kept looking up while I prayed and when I was done she yelled, “Amen!” I think God was here with us. I think our babies being so fresh from heaven can probably still see God. That is why they have no worry, just joy. I just might sound silly but I know at my lowest God gives me all these signs.  God puts people in our lives, he gives us rainbows of promise, he gives us words of encouragement. The key is to be listening so you don’t miss it. My sister sent this to me tonight and I love it.

Phillipians 4:6

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God will guide your hearts and your mind with Christ Jesus.

I was rocking Ginger in my arms last night. Her body long and limp in my arms. I get these floods of emotions. I want to stop time to rock her forever. Get 1 year old hugs and kisses for all time. I looked her over in the dark. She is perfect. No one would ever know the destruction going on inside. The things she has already been through at just one. I had a friend tell me that she doesn’t read my blog. She said laughing, “I just can’t! I don’t want to know.” I thought how nice it must be to not want to know so you just don’t have to. That it’s that simple for some people. Ignorance is bliss for them. I wish everyone had to know. I think this disease would have amazing funding and maybe a cure already if people opened there eyes to how our children suffer. I hope that even if you have the choice to turn your head you wont. I hope you’ll help us save lives, Ginger included.

Ginger is featured on Hip2Save.com!! Check it out!!

http://hip2save.com/2010/07/hip2give-cystic-fibrosis-foundation-2.html

What can Ginger say?!

Mama, Dada, Papa, yellow, no, ticktock (for clock & watch) she pants when she sees a dog, meow for cat, tree, poo poo, ni ni (good night) coco, cracker, Hi, bye, Hello (when the phone rings) What’s dat? What’s this? Boy, sniffing is flower, cold, water, slide, ouch, wow, oh no, la la (to sing along with a song), Mmmm (when something taste good) Up, Muah (kiss)

So I know I’m the queen of metaphors these days, but for some reason I think in them all day long. I see a fly stuck inside and buzzing around the screen and I know if it just flew down to the corner where the cat made a hole it would be free… I watch the fly thinking is this what we look like to God looking for a cure? So close but needing his guidance to get us there? I watch and then grab a cup and cover that fly and bring it to the opening and watch it fly free from fear… I always pray God will direct us. Push the scientist where they need to be. God help us.
Sunday morning a cartoon was on and, I need to ask my mom what bible story this was, but it was the story of a women that was very rich and had many servants and she had two new born sons (maybe twins?) when her husband died. She had to sell everything she had and give up her life of luxury and the servants to live a humble life. She worked for others cleaning their homes to take care of her sons. A women that she once knew came to see her. She had her servant show all her jewels, diamonds and ruby’s and gold… When she was done she asked the women is it true that you clean for others and have no treasures of your own? The women told her she had the most precious treasure there was on earth. The old friend asked to see it if it was true. She said it was her two sons. She said are my sons not more precious than any jewels? (I probably slaughtered this story because I don’t know what it is and it was on in the other room but that was the jest of it.) It hit me so hard! Our children are our biggest treasure. This I already know and I never take for granted. The part that hit me was IS MY CHILD NOT WORTH MORE THAN ANY EARTHLY TREASURES? She is. She is priceless. This is what all of the kind people that donate and have donated to the CFF are saying. They are giving their treasures to help me keep my priceless one. I want to say thank you for that. The tears flow when I think of all the people that did this for Ginger… for us. She is my everything. Thank you.

Tomorrow is clinic and like all clinics before I’m a nervous wreck. Please pray for all to be good. Clear lungs, good weight gain, clear culture, and that we can find a new enzyme that works well for her. Her’s was not ok’d by the FDA and we have to try to find another which is a struggle most times. Thank you for your prayers.