Hello to my friends in Facebook World! :) Yes, I am slightly more chipper this morning. How can you tell? Um, Im awake before 10:00 am? Jordan, those darn -never ever go to sleep- CF kids, got me trained to stay up late! Lol! First, I am currently writing a book. I will publicly thank my dear friend Heather for inspiring me and continuing to inspire me every day. She.Is.Awesome! I have most of it mapped out and I am working on it. There is a documentary about Jordan that started filming three weeks before she died. It is still in production now and hopefully will be finished before the end of 2015. Thats the goal. :) (LOVE these awesome incredible guys doing it!) Jordan was never about Jordan. Im still surprised she agreed to do the film, she had turned other TV and media things down. She did the film for two reasons, three really. Jordan Ulrich prayed about EVERYTHING! She did it for 1. Because she believed God wanted her to do it. 2. She wanted to make everyone aware of what CF was. Leave it to Jordan to state now the obvious... She said, YOU CANT FIGHT SOMETHING YOU DONT KNOW EXISTS! (Im dedicated to CF Awareness! ) 3. She did it for Luke, Mike C Prices young son and for Heidi Landess, Hannah Ruth Landess little sister and for Bre Pierce and all those still fighting CF. Jordan had three different production companies interested and she picked the one she believed was suppose to do it. She was right, what a blessing they were able to start filming before she had to leave us! We have beautiful movie screen quality footage of our -cant believe shes really gone- daughter Jordan. Jordan was like no one else. Really! Someone asked me once when I knew she was different. I didnt know what to say until I started looking at home movies. The answer? From before birth! There will never be another Jordan and I am not sure I can live without her for long. I have to literally take it day by day, sometimes hour by hour. Jordan was unique. She was willing to endure another, a THIRD lung transplant for 4 reasons. She was willing to do whatever it took to live as long as she was suppose to and she didnt want to leave us, especially me as she worried I would be lost without her. (She was more right than I ever thought.) A transplant doctor had talked about babies who had lung transplants at infant ages. They could need second ones as early as ages 5-10 and potentially third ones by ages 15-20. Jordan knew four little friends who had been transplanted as babies. She never forgot them and on her birthday she went online to see how they were doing. 1. Faybree, Nicole Brawdy Neufelds daughter transplanted at 3 months old. 2. Little Lucy Diamonds in the Sky (Jordans name for her) who was about 8 months old, Marlena Fields daughter. 3. Eliana was 4 months old, shes Gina Krabill Whites daughter. 4.Sweet little Aidan, Lori Gearharts little guy. They all were transplanted with Jordan in 2008, Aidan got his in 2009. She knew if she did a third transplant possibly she would have to accept lungs no one else would take and there was no guarantee she would survive the surgery. Jordan was convinced she had BO again, though it seemed mild to her. On Monday we told the transplant team Jordan wanted to do another transplant if the biopsies taken on Thursday showed BO. (The biopsies would have shown mild BO as she was right but she went into cardiac arrest before they could get any biopsies.) We also told them that Jordan was still convinced she was going to die after her birthday, which was two days away. (I believed her, I just thought it would be her next birthday cause she wasnt sick enough to die.) (One of us was right, i was very wrong! :( ) I remember Brian, her beloved transplant coordinator just shaking his head in incomprehension. Its worth noting that even though several doctors had told Jordan she WAS dying before, Jordan never believed them nor did she ever give up! She believed she was suppose to live exactly as long as God wanted her too. Ive gotten quite a few comments about my support for Eryne CF Shan and her wonderful mom Kimber Shan who is one of my bestest friends. Erynes dad Russell Shan is okay....just kidding. He is mischievous and funny and he is one heck of a husband and father! Think Papa Bear! He is ferocious in protecting Eryne and all of his children. I promised Jordan I would always fight Cystic Fibrosis. I will continue to do so. I believe Jordan had a Journey she was suppose to make. I believe she lived exactly as long as she was suppose to live. There was nothing left unfinished for her to do. She finished her race and won her fight. Eryne is on her own Journey as we all are. She is suppose to be here. She will go on to do some pretty great things. I think she and Carrie Giddens might have to team up and talk to people about ECMO. Erynes Journey will not be over until she has done everything she is suppose to do. I believe Jordan is rooting for her as she is rooting for Jessica Anne Rossman. Its not hard for me to support Eryne and these other wonderful people mentioned above including dear Bradley, Teresa Williams Daviss son. They all have a calling as do we all. I guess Ill end with a reminder for myself and for my family and friends as well as all of you today. Do you know what your calling is and are you doing it? It doesnt have to be big, we are all called to do what we can. It may be as small as giving the homeless woman actual bills instead of flinging coins her way. It may be buying her a meal and bringing it to her. It might be as small as asking your employees and coworkers how their day is going, or paying for the meal for the people seated behind you asking them only to Pay It Forward. The world could change but it starts with one person. I fail miserably many times, I continue to try to start again and move forward. So....for Eryne, Jess, Kenna Taylor Anna Taylors sweet daughter) Aidan, Faybree, Lucy, Eliana, Bre, Heidi, Luke Bradley and all the others, Ill do my best to try to fight
Posted on: Wed, 05 Nov 2014 17:39:34 +0000
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