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.

Interested in what everyone else lives like?

Curious to see where others live, but don’t feel comfortable asking?

Want to take a peek into your friend’s home….who lives across the country?

Then join along in our weekly blog hop!

This week’s flash….your “extra” room!

Whether it’s a rec room…bonus room…guest bedroom…let’s see that extra space!

Ours is the guestroom.

flash…

YOUR DISHES!

Plain? Patterned? New? Antiqued? Matching? Mixed set?

Mine are not very exciting. They are my favorite color but other than that they are plain. Hehe! Oh well here they are my friends.

To see others visit Jenn’s blog.

Plates

small plates and bowls

cups

https://burtonk.scentsy.us/Home

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!

Tomorrow is clinic. Clinic my friends will turn your world upside down and dump you on your ass. I noticed when I mentioned it was clinic week to a mom with a healthy child I got that look of, yeah so. I decided that tonight I would write why every CF mom HATES and DREADS clinic.

It is a realization. You’re child is sick with a life threatening disease and that is the only reason you are there.

You’re going knowing that this could be the month you get bad news. The anxiety sets in…

We go on Derek’s day off. Luckily twice a month Derek has a weekday off because he works Saturdays. I wait outside with Ginger and Derek goes and checks in. This is because we are so scared of cross contamination with other CF kids. Our angels can catch bugs other kids can not and are not aloud to be around each other. I walk in a straight line back and forth in fount of the building trying to be brave and hold back the tears.

When we get inside Derek wipes down the room (anywhere we might have to touch) the table and chairs mostly. We replace the paper on the bed with new paper and pretend we are not OCD when the nurse calls us in to weigh Ginger. I go in with her, take her clothes off while holding her with my knee. I have them re-clean the scale and where they measure her height in front of me. We wait while it drys. I try hard to make small talk. I hope they will like me enough that the extra work wont piss them off. I then ask as nice as I can for them to wear gloves before they touch my child. This sometimes gets the eye role. I smile and thank them (cussing in my head.) Then you start to pray for good news.

The RN comes in first asking a million questions and about the list of meds your child is on. It’s funny how I can’t remember who I need to call back or what bills are due, but I can name off meds, doses and times like it’s nobody’s business. We talk about growth and poop and questions Derek and I might have. To be honest I try to spread the questions out through the doctors otherwise they get annoyed I always have so many. Most of the time I’m fishing to hear them say Ginger will live a long life.

The dietitian comes in and we talk enzymes and vitamins, poop, acid reflex, and heath. They adjust doses.

Then comes the Pulmonologist  (I start to sweat)  they listen to her chest as she breaths. The room is silent and all you can do is pray that her lungs are clear.Then they check her O2 stats and look in her ears, nose and throat. This is the most knowledgeable person we will see and so we ask many questions. We talk about growth and development and any blood work, cultures, or Xrays that need to be done that week. Sometimes meds change or increase.

Depending on if you got any bad news or if you’re a crying mess after some news you got you might get to see the social worker. She helps you not kill yourself. Ha! Really though I know how stable I come off by if she “comes by for a visit” or not. She also figures out how you will pay for all the new meds too.

You might also see the Genetic Counselor, phlebotomist, and students. This appointment can last from an hour to 3 or 5!

Here is why CF families have such a hard time with clinic. It’s so uncertain. You NEVER know what you’re going to hear. You could hear all is good and normal or you could hear go home and pack your bags you’re getting admitted to the hospital. All of it is enough to make the strongest mom or dad crack. The smallest change in meds or the smallest bit of bad news set you back at square one. You never get too far from that square with CF. You think your on top and then BAM you’re where you were the day you found out. Helpless and begging for answers.

Please pray for Ginger tomorrow. That she is healthy and strong through it all and that the week to come waiting on the culture results don’t kill me. Love you all!

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.

As you all know I met Derek in high school. We started dating our senior year and fell in love. I remember bringing him cookies I baked him one night when he was sick. We sat there on that cold Fall night and he said to me (after 3 months of dating) “I think I’m in love with you.” I said, “I know I’m in love with you.” Little did I know I had found my husband. That cute boy I thought would be nothing more than a high school crush is now my world and my rock.

*Now there are 1 in 28 Americans that carry the CF gene. If you are a carrier you would NEVER know it. I just so happen to be one and the man I fell in love with was another 1 in 28. Nether of us had ANY family history and so this was not a worry in our minds. K back to the story.

We got married 5 years later. We did it our way. We had ALL of our close friends in the wedding which was a VERY large wedding party, I walked down the aisle to Des’ree’s Kissing You (not here comes the bride), Derek’s grandpa was his best man, there was no smashed cake in the face, I had my dad AND mom walk me down the aisle, I wore RED,  Derek and I saw each other before the wedding. It was not traditional at all but at the same time it was completely traditional.  It was perfect for US.

We had two miscarriages and the first almost took me. I almost bled to death and Derek held my hand while they desperately searched for a vain to give the blood transfusions through. I looked around me and there was my family and Derek praying and keeping me conscious. It was that heartbreaking experience that made Derek and I start to know life is precious and uncertain. How uncertain it would be, I had no idea.

It was after this miscarriage I walked into the coffee shop my brother worked in and he asked if I wanted to buy a rose. (A little paper rose for a dollar, that they hang on the wall with your name on it) He told me it was for the Cystic Fibrosis Foundation. (I felt scared to even try to repeat the name because I thought I would say it wrong) I had NEVER heard of Cystic Fibrosis in my life. I asked what it was. He said the lady that dropped off the roses told him that they were trying to sell 65 roses for Cystic Fibrosis. 65 Roses is how they teach young children to say the name of their disease. He said it was a disease that filled their lungs with thick mucus slowly drowning them. I started to cry. I had never even met the child I had just lost and I was so heartbroken I could not imagine a child going through something so scary or terrible. That day I gave all the cash in my purse and said a prayer for the children that suffered. A year later we had another miscarriage and we were transferred to a high risk OB for our third pregnancy. They had found I had a gene mutation called MTHFR. To be honest I don’t even know what it stands for because I just referred to it as “Mother Fucker” It is believed to cause blood clots that then cause miscarriages. They were not sure this was really the reason for our miscarriages but they had me on a high dose of Folic Acid, Aspirin and progesterone.  Thank God Ginger made it through and at 38 weeks I delivered (barely ) a beautiful 8lb 5oz baby girl. That day will forever be the best day that I ever lived. My life was perfect. For some reason I was uneasy though. I was scared to have people near her (I was never a germaphobe before) and I kept asking the nurses questions because I felt like something was wrong and I needed reassurance that she was ok. We brought her home and she had Jaundice and I honestly thought that was the scariest thing that would ever happen. I didn’t care how common it was I was SCARED! That cleared up with time and we got back in the swing of things. Derek went back to work after his two weeks home with us and I was on my own. That is when IT happened. I was alone breastfeeding my 3 week old baby on our red couch. It was partly cloudy and cold outside. The phone rang. I picked it up and for the first time heard a voice I still to this day dread to hear. The women on the other end told me her name was Nancy and she was a RN. She said coldly and straight to the point, “Your daughter’s newborn screening came back positive for Cystic Fibrosis”. I said, “What?” She asked me if I knew what CF was. I told her kind of. (my mind shot to the coffee shop and I thought, Oh my God, my child is one of the few I prayed for and forgot years before)  She told me I could find more information at cff.org I tried to write it down on a piece of paper. My hand was shaking. She said, “Do you have any questions?” I had a million, but could not think of one. I burst into tears and could hardly talk. She told me we would have to do further testing to confirm.  I called Derek and could hardly get the words out. He said he was coming home right now. I called my parents and he called his. My mom and Derek showed up. I was so grateful not to be alone. I didn’t know anything about the disease and thought she might just stop breathing right then and there. Everyone had a million questions and so we called the RN back no answer. We called over and over until we were all in a panic for answers. I called our high risk  doctors and my own doctor. Derek started to read the website. The more we knew the more devastated we all were. We sat here and cried. All of us. Uncontrollably for hours. We waited weeks for the final results of the sweat test and the DNA testing on Derek and I. During those weeks I begged God to give us a miracle. To make it negative. I would do anything. I would dedicate my life to finding a cure for everyone else. I would be a better person. I would never cuss or talk behind someones back again. I would be perfect if he would help my baby. The news came. It was 100% positive she had it. I was scared to be angry with God. I felt so hurt and so scared and really alone. NO ONE could know how I felt. No matter how much they love Ginger I’m her mom and I love her more. No one could get how I was feeling. I know now that I’m not alone.

So that is how we found out that CF would be in our lives to stay. I have come a really long way… some days. Others I’m at square one. I’m so grateful we know God and that we have the amount of support we do. I really don’t think we could do it without all the love that surrounds us and Ginger. She will grow up feeling nothing but pure LOVE and HOPE in this house.

These where on her tray when she was hospitalized last year.

• Five Stages Of Grief
  • 1. Denial and Isolation.
  • 2. Anger.
  • 3. Bargaining.
  • 4. Depression.
  • 5. Acceptance.

  I have to be honest… I don’t think I’m to Acceptance yet. I don’t really know where I am on here. I feel like I bounce all over the list from day to day. One thing is for sure though, I don’t take a day with Ginger for granted. I know that they are all precious. I love her so much that it literally makes my heart ache. I have a hard time holding back tears when I think of what she means to me. She is the best gift Derek and I ever got.

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

♥ Courage is not the Absence of fear. It is believing that something is more important then that fear. ♥