Archive for December, 2009

01~01~10 feels like the perfect time to start over. It looks like a reset clock. I love a fresh beginning and chance to do things different.

In 2009 I was more thrown into seeing things different, resolution or no resolution. This year I want to consciously change things around me. No more having things change me! I will change the world this year. A bit ambitious? No… It is the only way for the heart of a fighting mother to survive. This year I will look at the bright side of all situations. I will fight hard for a cure. I want to let go of things and people that are not good for my heart. I will forgive and forget, but no longer let in those that have continued to hurt me.

This year will be wonderful! Who knows this year could even bring our cure! Yesterday Derek and I were in the car and it was kind of rainy but clearing up. (It felt very symbolic) All of a sudden there was a rainbow. I mean the whole arch. It was beautiful! I told Derek that was how God showed his promise never to flood the earth again. We both felt like maybe we were seeing our own promise. The clouds cleared and the sky was a magnificent blue. I think there is always a silver lining to the gray clouds in our lives, but there is nothing like the times in life when we have pure blue skies. When things are right and the gray clouds are gone. I think it is fitting that Ginger’s middle name is Blue… our Blue sky is coming. We will get our rainbow and then the clouds will clear. 2010, what will you hold?

Today I just held my little Ginger in my arms and stared at her. She is absolutely perfect. Every little finger nail, all her tiny eye lashes, down to her round belly. It amazes me that we can do this… I mean two people can produce a perfect little child so much of the time. It’s hard for me to think that she can be so perfectly formed on the outside and something could be so wrong on the inside. I can completely forget sometimes, until something makes my heart drop. A cough, a doctor’s phone call, an insensitive comment from someone that doesn’t know better. There are times I feel like why did “they” get healthy kids and my one and only love has to suffer daily just to live, but I have learned that we can’t tell by looking at a person what they are going through or what they’ve been through. We all have something to be grateful for and we have to sometimes stop focusing completely on what would make our lives better, or more complete and just love what is good. At every point in life there is something you think would make that time better (to be thinner, the perfect boyfriend, an engagement ring, a wedding, a home, a baby, a cure…) Later when I looked back at where I was at I think wow I had it really good. That was a wonderful time in my life. I should have enjoyed it more. I refuse to feel that way about this very important moment in my life. This very likely may be the only day I ever get to hold a nine month, 2 week, & 5 day old baby that is mine. I will never get this day back with her. THIS IS THE BEST TIME OF MY LIFE. I will fight, dream and pray for a cure, but it will not steal my attention away from the gift I have. I will not be this strong always, but I want to be. This is what I strive to do. Enjoy this moment, with or without a cure. A cure will come and I’ll enjoy that moment too. A lot! But I will love this day and the ones between now and a cure with my whole heart. God will protect her. I trust that.

This year has by far been the best year of my life. I finally feel complete. I could have never dreamed that having Ginger Blue would have filled my heart so full of joy and love. At the same time this has been the hardest year of my life also… The news that Ginger has Cystic Fibrosis was the most devastating blow I’ve ever experienced. I will never stop counting my blessings because I have SO MUCH to be grateful for and I will never forget that. I have my moments of pure hope and others that I have to sit down and tell Derek “Tell me about how they are going to cure her.” He will tell me he feels in his heart they will find a cure and while she is young and her lungs are not damaged. He’ll talk about the day we’ll find out and how it will be the 2nd best day of our lives. The first being the day we met her. He has a sureness about him that gives me peace and heals my heart for a while. I think Derek has seen the changes in me since the day the phone rang with “the news” the lines deepen around my eyes and worry tends to consume me. The things I loved to do before we had Ginger aren’t really things I can go do for fun now. I’m not going to go snowboarding all day and be without her. Not ready for that. Derek has always encouraged me to find a hobby just for me. I’ve really taken to loving photography. Well Derek has been looking into it and surprised me (early) with amazing camera! What a wonderful way to get out with Ginger and enjoy myself, get lost in it and forget the things that scare me. I have the most loving thoughtful husband that ever lived. He really cares for me and shows me so much love. I’m still figuring it out and there is so much to learn but here are some of the pictures I love it!!!

If you’re like me, before we received the dreaded news that our daughter had Cystic Fibrosis (CF), I had heard of it but didn’t really know what it was. You may have also heard it called 65 roses… This is because it is a disease that takes children and young people, and this is how we teach them to say the name of the monster they are fighting. It is a beautiful name for an ugly and painful disease. I can and will give you the medical definition but first I want to tell you what CF means to me,  a mommy.

It’s sleepless nights of praying to God to save the child, he gave you.

It means being grateful for every day (especially the healthy ones) and never looking too far ahead.

It is hours of treatments every single day. This is what I mean by we fight for her life everyday.

It means being worried  every time you hear someone cough or sneeze & thinking it could mean a hospital stay for her if she catches it.

It is saying things like… what a beautiful poop (poop is a big deal), don’t let her touch ANYTHING, could you wash your hands again, or we were only in the hospital for a week (many stays can be over a month)

It is never painting your nails, wearing perfume, hairspray, or burning scented candles again. (all things that can bother their lungs) I just read the blog of a 21 year old with CF that opened one of those smell good things with the oil and the sticks coming out the top. She started coughing very, very hard and one of her lungs collapsed! (just to let you know how important this it.)

It is worrying that all the shots, blood draws, IVs, doctor visits, hospital stays, and testing will effect her happiness and well being as a person.

It’s constantly thinking of ways to give your baby a longer healthier life (wood floors for her breathing, sealing off the heater vents, air purifiers and plants in the house, home schooling anything you can think of…)

It’s bursting into tears when someone says they feel there will be a cure or when you read a quote that gives you hope.

It’s feeling anxiety… a lot.

It’s staying home away from germs and people, even when you feel stir crazy.

It’s dreaming of one thing only from now on (it’s not a big house, a car or nice clothes) I only want a cure. I would give anything on earth for that.

At first the news that your child has CF robs you of the joy you should be experiencing as new parents bonding with your infant. This is still the happiest time of your life because there is no love like the love you feel for this child, but the fear over comes you. It is scary to bond with a baby you’ve just been told you will out live. This is the kind of news NO parent should ever get (We refuse to let that happen. She will live a LONG full life!)

When Derek and I first found out Ginger was 3 weeks old and being new parents was scary enough to us. Normal things like jaundice, noises she would make, and how many poops were happening a day was a bit overwhelming to us. I’m not sure if all parents feel this way but we were scared to death from the day they sent us home. We would take turns staying up at night watching her sleep. My mom said it was probably my mother’s instinct because I felt something was wrong when she was a day old. You still are NEVER prepared for this kind of life shattering news. We sat here on the couch and cried for 2 days straight and then decided we had to fight for our child. We already loved her more then anything else on earth (literally)

Derek and I are usually VERY private people, but it is our goal by opening up our hearts and our lives that we will be able to spread awareness and save lives.  CF is considered an orphan disease because the government gives us NO, none, not a dime for research.  Now if your child was dying of a disease it would outrage you when you saw the ways money is wasted that could save lives. This is why you will hear me (until my dying day) trying to earn money to save my child. I wish I was smart enough to be a scientist and dedicate my life to finding a cure, but because I’m not this is how a mother fights for her angels life.

You feel alone with such a rare disease. No one seems to understand. You hear a lot of “well she looks so healthy” CF is not a disease you can see. It is damage being done on the inside. All of us have little hairs in our lungs that a THIN layer of mucus passes over to help clear the germs out. A person with CF has  cells that don’t work completely right and the imbalance of salt causes the mucus to be THICK. Our doctor compared it to a jar of paste you used in elementary school. This  mucus clogs the lungs and the viruses and bacteria we would clear out sits and grows. This can cause permanent lung damage and life threatening infections. This mucus clogs the pancreas and they can not absorb the fats and fat soluble vitamins. Many times kids with CF have failure to thrive. Weight gain is so important because when a child is growing their developing lungs need the nutrition to grow healthy lung mass.   Everyday is a fight to keep her healthy.

CF is not contagious. One in 30 people are carries of the gene that causes CF. You would never know you were a carrier. Think of all the people you know out of every thirty, one of them is carrier of this disease. Derek and I are carriers and happened to fall in love all those years ago, not knowing that together we had this gene that would cause our child to suffer. This could happen to anyone. It is my hope by opening my heart and my life to all of you that maybe you might feel drawn to help by praying for our baby, spread the word to the people you know, donate to the cause (http://www.cff.org/Great_Strides/SarahSampson6603 ) , or walk the CF walk with us next year. The Foundation working towards a cure has done great things for people with CF. In the 50’s the average life expectancy was just 2 years old. Now it is 36. As a mommy 36 is not good enough! 36 is SO young and by this time many had to have lung transplants and gone through so much! I want my baby to have a HEALTHY, happy, long life. Every person deserves this chance and if you know Ginger you want to give that to her.

Oh and if you want the medical definition here it is…

Cystic fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that lead to lung damage.

Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help people grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with medicine they take with their meals and snacks, which helps them digest food and get proper nutrition.

About 65 Roses^®

“65 Roses” is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary’s 4-year-old son, Richard, listened closely to his mother as she made each call.

After several calls, Richard came into the room and told his Mom, “I know what you are working for.” Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, “What am I working for, Richard?” He answered, “You are working for 65 Roses.” Mary was speechless.

He could not see the tears running down Mary’s cheeks as she stammered, “Yes Richard, I’m working for 65 Roses.”

Since 1965, the term “65 Roses” has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The “65 Roses” story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.

65 Roses^® is a registered trademark of the Cystic Fibrosis Foundation.