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I'm Amber... Born July 15. I was born with a genetic disease called Cystic Fibrosis (CF). CF is a progressive disease of the lungs and also affects the digestive, reproductive, and endocrine systems. All my life I have been a fighter. I've had to fight for something most others don't even think about, to live and breathe from the day I was born. I'm stubborn and I can be a huge handful. I'm very strong willed, but easily pleased. I love putting a smile on peoples' faces and making them laugh. I believe in second, and sometimes third, chances. I wear my heart on my sleeve and I tend to trust too easily. My family and friends mean everything to me. <3  I try hard not to judge people because I hate when others judge me. I am who I am and that's all there is to it, but that doesn't mean I always like who I am...
 

Thursday, April 28, 2016

Memories Make a Difference

I've always been a memory hoarder. My mind is full of memories that I cherish beyond measure. Most of the memories that I hold so close and near to the front of my mind are ones of moments I've shared with my brothers, sisters, and parents.

I remember many evenings spent with my little brother, Ryan, and my baby sister, Kassy. Ryan and I would pick Kassy up and spin her around in circles as fast and as long as we could stand and then put her on the floor and watch her try and walk as she weaved back and forth across the carpet in the livingroom, falling down every second step. Ryan and I would laugh until we cried watching her. And Kassy would laugh too just because Ryan and I were laughing. She probably had no idea what we thought was so humorous then, but she laughed anyway. Other times, Ryan and I would pretend to take Kassy's nose, or her arm, or legs, or eyes. She'd ask for them back because she really thought we'd taken them from her. Sometimes we'd give whatever we "took" back to her, other times we'd put it on our own bodies and tell her she couldn't have it back. This usually made her cry and frantically try to to take whatever we had taken from her back. These moments were probably worthy of being on America's Funniest Home Videos, but we never got it on tape.
My baby sisters and I at Ryan's last ever
high school football game!

My foster mom, Jen, and I at the 2010 Mpls Great Strides Walk
I have so many memories of my baby sisters coming with my foster mom to visit me at the hospital. We'd spend hours coloring, and laughing, and watching movies together while my foster mom sat on the side and watched or tried to read. (I can't imagine she got much reading accomplished thought between the four of us telling her to look at the pictures we drew or colored or the incredible amounts of loud laughter the resonated throughout the hospital room.) We'd go out of the hospital on day passes between treatments and meds to explore parts of Minneapolis. I especially remember our trips to Fat Lorenzo's Pizza near the airport. We'd get pizza and gelato and walk around the trails that bordered Lake Nokomis. One time I was okayed to go out on an evening pass and we were trying to find a certain destination (I forget where), but ended up at a huge cemetery with beautiful statues and massive, yet gorgeous trees. I remember the sun shining through the mature branches and fall colored leaves. Ryan, Jennifer, and I walked around the cemetery that evening, instead of turning back to find our original destination.

My foster dad, Chad, and I at my graduation party.
I remember taking many family trips with my foster family. One trip we made was up to Lutsen/Duluth area in northern Minnesota. I don't remember the name of the park we were at but we'd hiked at least a good couple miles until we reached the river. We were all having a great time splashing around and playing in the water when my blood sugar decided to tank. All we had by that time was water because we'd eaten our snacks when we stopped to play. We packed up as quickly as we could and started making our way back to the truck. We were taking it slow so I wouldn't be exerting so much energy, which would have caused my blood sugar to drop faster. Chad, my foster dad, and Ryan decided they needed to run back to the car and bring me something to eat because I wasn't going to make it back without something to eat. My foster mom, Jennifer, and my 3 sisters stayed back with me, and we slowly continued to walk back. We passed one family on the trail back to the truck. All they had was some really gross chocolate covered wafers, that I really had to force myself to eat and not choke back up. Looking back, I am so grateful for those disgusting chocolate cover cardboard things. I probably wouldn't have made it out the park without them.

Lucas and me <3
I have some pretty incredible memories with my bio family as well. Like when we all got to go to Florida to Disney World through Make-A-Wish. It was our very first family vacation. We went to South Dakota a few years later together. And then to Texas a few years after that. Those are all wonderful memories, but I think my favorite memories with them are just our family game nights, especially ones with my brother Lucas. If you are ever looking for a belly from laughing, Lucas is the person to be around.

I have so many happy memories stored in my brain, but there are also some very unhappy memories I have filled away as well. Even in the midst of those hard times, there are some pretty amazing memories thrown into those unhappy ones. The happy memories from those times are probably the only reasons I was able to make it through.

My brothers, Nick & Lucas, and my dad, Jim,
and mom, Johnna, and myself
Lately I've been struggling with the possibly of not being able to make many more memories with the people I love so dearly. It scares me tremendously.  I constantly wonder if I'll get a chance to see my brothers and sisters and foster parents again. That's the hardest part about living over 1300 miles away from each other. It can be difficult to see each other as often as I'd like. It makes it even more difficult when I'm having to fight every single day to get a second chance at life.

For me, the hardest thing about transplant is not raising the thousands of dollars it takes to be listed, it's knowing someone else has to pass away for me to live. It's also the most motivating. Knowing that someone made the decision to give life once their's was over makes me fight so much harder for a second chance at life. I refuse to give up. And I refuse to go down without a fight, and if I have to go down, I'll be swinging and landing punches the entire way. They always say your outlook is half the battle. Well my outlook is positive and my will power is strong. So I've already won half the war.
My baby sisters and foster mom, Jen when they came to visit
me when I was stuck at Duke! <3

Here I am saying BRING IT ON! I've lived through 100% of life so far, I think the odds are in my favor.



*** As many of you may know, in order for me to get listed for this life-saving transplant that I very desperately need, I have to raise at LEAST $15,000; however the goal is $40,000 set up by COTA (Children's Organ Transplant Association) to be sure I will have the financial stability I need to make it through the most critical months after transplant. I fully understand that many of you may be financially tight at the moment, but if you could spare even a few dollars, I'd be forever grateful! No amount is too small, I promise! So, if you can afford to give even a dollar, please do! Help me get my second chance at life and the ability to experience what its like to breathe easy. You can donate through COTA in honor of me. Your contributions are tax deductible to the fullest extent allowed by law. And 100% of your donation goes to helping with transplant expenses. Please consider!

COTA Fundraising Donation Page - Click the link to be redirected to the donation page :)



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