Archive for June, 2010

Today was Derek’s Wednesday off. Thank God! Today was also Conner’s funeral and on our way to get Derek’s car fixed we saw 2 stray dogs that we could not catch. Anyone that knows me knows that upsets me to no end. I’m probably the biggest animal lover there is and I was already so emotional about Conner and then to see more sadness in the world set me over the edge. I just bawled my eyes out. What a cruel world. I just don’t understand sometimes.

It’s amazing how the world can be so ugly and unforgiving and in the same moment beautiful and kind. We pulled way and I cried, but then I looked into the backseat and there was my baby girl. Sleeping soundly, breathing in and out. That was beautiful. That is my blessing. I can not complain. I thank God she is here and breathing. She is what makes me breathe. I love her so.

So I’ve been wanting to get Ginger a chair or a beanbag to do her breathing treatments on. Somewhere comfortable. Today we found this big blue bird in Target and Ginger squealed. This was the one. She loved it and it was just what I was hoping we would find. My little blue with her bird.

Well I have had the day to let it all sink in. Conner’s passing was SO much harder on me then I thought it would be. I felt physically ill. My head hurts, my eyes burn, my body is exhausted and I wanted to sleep all day long. I feel so sad. So so sad. I would do anything to change this situation. I would do anything to cure this disease. I held Ginger close. Closer then normal. I let her fill her cup in the sink, eat blueberries in her white dress, play past her nap and drink coco at lunch, crumple up the mail on the way to the box, pull every box out of the cupboard, pull the wet wipes out one by one as I changed her diaper. Today I let the small stuff go. The laundry would wait, the phone could ring, the dishes will get done, but not today. Today I let my heart be broken. I had to. There was no choice. I will never get over today. Today made everything so much more real. Far more real then I would have ever wanted it all to be. I will fight even harder for Ginger because I HAVE to. We HAVE to. Thank you from the bottom of my heart to everyone that has ever helped us. Given a dollar… Given a hundred. You’re fighting for so many. Not just Ginger,but for Laila, Mason, Karlye, Maddie, Sierra, Madeline, Briana, Gabe, Tess, Skye, Brock, Brady, Scotty, Lucy, Gavin, Ben, Sophie, Rad, Jaydon, Ashely, Brian, Zack, Kaleb and 70,000 others like us. We will make Conner proud. We’ll find a cure.

We lost Conner… The words make me sob and my heart ache.

Please pray for this family. It is all we can do is pray. How does the world just keep going without him… How can this happen.

I feel so many things, beyond sad, angry, and most of all scared shitless. It makes it all too real. If we don’t find a cure this will be Ginger. My Ginger Blue. We have to cure this disease. No child should slowly drown.

NO GOVERNMENT FUNDING! I keep thinking of all the crap I pay taxes to pay for and I have to beg everyone I know for their hard earned money to keep the research going to save my baby. It makes me so upset. If we could have found a cure Conner could have been saved.

Save our children! Stop the suffering. I just can’t take it today. I’m so broken… God help us!

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

Every single day I pray over Ginger’s body. I pray for healing, for strength and safety. I give thanks for her health today. I pray that God will never let us feel the pain other CF families have felt and continue to feel. I feel guilty to ask God not to put through that, because I feel like no family should go through that kind of  heart ache. Being a mom is hard enough on the good days. Just trying to make sure they grow into a well rounded, honest, loving person should be enough. Add health problems on to that and it’s all a bit much to take.

I knew even as a little girl that my biggest dream when I grew up was to be a mommy. That was really my hearts desire. To finally be blessed with a child is my biggest gift. Ginger is my reason for everything I do. I NEVER imagined it would be this great or that I could love so much. I just pray I will never lose that. I would switch her places in a second. I would take every test, every hospitalization, every treatment, every fear to never let her know what it was like. I wish with all my heart I could do this. I know that she is so young and know no difference but that also breaks my heart. She should get up and eat without meds and then play not worry about starting treatments in time to have her down for a nap. This is all she knows though and I can see strength in her because of what she has gone through. She is an old soul that knows a secret the world hopes she will tell them someday. Everyone wants to be close to her to hold her hand and steal her heart. How did I get so lucky to know her best. To have her love. To be the one she reaches for. I know God has a plan for her and it is to touch lives. She does that everyday. I pray Gods plan for me is to keep her. To outlive her. To never miss her. To never see her suffer. I have so much hope in Gods plans and I believe her long life is part of that plan. We continue to watch the news on the drugs that have the potential to save Ginger. Ginger has a type of mutation they call a nonsense mutation. This is when the body has a premature stop sign when making the protein. The protein can not work correctly because it was not formed completely.  This drug would tell the body to read through that stop sign and finish making the protein. Some how it does not mess with the other stop signals in the body which to me to a miracle. If this can make enough correct working protein in the body then it would be our CURE. Oh how sweet the words.

Here is a picture of how it works.

Today a guy wrote on the Cystic Fibrosis Foundation’s Facebook wall that he started this drug on trial. This is what he said…

“Good news everyone, I started the PTC 124 study for anyone with the X mutation (stoppage gene). This drug is absolutely amazing, I don’t think I’ve really coughed in 3-4 days since I’ve started it (I haven’t done any of my normal meds either, tho I should be). I feel amazing, and have the most energy I’ve ever had. Tonight I’ll re-start my normal meds in addition to this phenomenal drug. This is it!!! Good News for everyone with X genes!!!”

This could save Ginger!!! Please pray that we can get our hands on it before her lungs are damaged and that there are no bad side effects and that we can find drugs like this for all the different mutations that cause CF. Vertex is another company to watch they are working on 2 different drugs that could save lives too.

This is Ginger in her new blue vest. She LOVES it!

New vest happy dance.

We went on vacation last week and it was wonderful!! We went up and visited my oldest and bestest friend. This small town has such a special place in my heart. I went to college there for 2 years with Jess and loved it so much I would have stayed for good if I didn’t miss my family so desperately. This trip was full of fun and much needed rest. Derek and I took turns getting up early with Ginger and doing treatments. I really needed the break. It’s all so much more work than people would think. Jess and her mom and sister all went in for my Birthday and got my hair done. I got highlights and a much needed trim. I had confided in Jess that I was really having a hard time. I’ve put EVERYTHING I have into Ginger and I started to feel like I gave up on me. I just really don’t have time to worry about what I look or feel like. There are bigger things to tackle. I sat and looked at pictures and videos of the past couple months and it really shows. I’ve gained weight, my hair was stringy and out grown and I look tired ALL the time. I hear it from everybody. “Are you tired today?” Get use to it. This is me now. I do have to say I will look tired BUT with way cuter hair now! Ha! It made me want to try again. I don’t want to give up on me. So I started eating better on Monday and I’m determined to lose the 14lbs I gained over the past few months. I really do know, more than anyone that the only thing that matters is that I’m healthy but it is so hard to feel uncomfortable in your own skin, to not want to try on clothes without crying, not not want your picture taken. So I’m taking a stand. I will stop eating off the VERY high calorie plate of Ginger. I will not think I can eat the same things as my bottomless pit husband. I will take pride in me again. I’m telling you all because I think I will hold myself to it if I share that I’m going to. So I got the new hair and I working to feel better about myself again.
Here are some pictures of our trip. You can see why I would love to live there again someday.

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.