Charlie Knuth's Journal
Written Nov 17, 2012 8:41pmI am watching first hand the lesson of "compassion" which has been passed down to my children. I have always taught them to respect and embrace another's individuality. To try and "blend out" rather than "blend in" with the majority. When my twin son's were in grade school, I always felt comforted that they had "each other". When Charlie came, he always had Chloe. She was his playmate, his little nurse mama, his absolute idol. Charlie often goes to Chloe for comfort and most of the time, she will give it to him. Today, I saw a side of Charlie that I have never seen before....Chloe has about 20 electrodes attached to her head...They are connected to a heavy cable which is feeding her brain waves into a little computer which she carries with her where ever she goes. She has to wear this until Sunday at 2:30 pm. She has had them on since friday afternoon. Chloe was severely shaken by her babysitter when she was 3 months old. We are now starting to recognize some of the damage this has caused. At night when she becomes tired, I am noticing slurred speech, spacey eyes, and odd words that have no meaning. That is why she is having a 48 hour eeg to detect seizure activity.Friday afternoon changed the dynamics in this household. All Charlie focus left the building. Much deserved and needed attention has gone to my baby girl. We have coddled her, babied her, and completely revolved our world around her. I would have thought that Charlie would act out in defiance over this new experience of "not being the center of attention." To my surprise I am witnessing the exact opposite. Charlie has not left Chloe's side. He has given in to every request she has made, including watching the "Katy Perry" movie and giving her one of his hospital robes to wear. He told Kevin and I tonight that he is her "loyal companion." (who knows where he got that from??) I am seeing so clearly how compassion is taught and imitated. Charlie is just treating Chloe the same way she has always treated him. How wonderful it must be for Charlie to give someone else happiness and comfort.
Written Nov 5, 2012 8:32pmI have written updates on Charlies condition over and over again. Each time deleting everything I have written. Where does inspiration come from to write something meaningful? Happiness, sadness, anger,excitement, compassion? Today....... it is coming from "The Couple at Walmart".We had only been home two days. I needed to get some necessities and I knew that because of my husbands work schedule, I would only have this chance. It was last Monday, at 10:30 at night. As I waited in the checkout line with a small handful of other customers it seemed as the whole store went silent. I wonder if you knew that every single person in the store had their eyes on you. I looked past your angry faces to your four children. Two in each shopping cart. All of them under the age of four. As you screamed at each other, whipped the carts angrily around in no particular direction, and bent down to threaten your children in their ears, I wonder if you thought no one would hear you. Did anyone else notice the hatred on your faces, the fear you must have created in the minds of your babies, and the fear you created in me as I watched.... Your faces red hot with fury, slamming things, jerking the carts around corners, searching for "who knows what?" at Walmart, at 10:30 at night... I wondered if you tuck your children into bed each night. Do you read them stories? Give them nite treats? Kiss them on the cheeks and tell them how much your cherish them? Do you ask them about their day? Do you make them feel wanted??? You see, I was going to complain tonight. I was going to tell everyone how hard it has been coming home. Trying to stumble through schedules again, divide myself up between kids, keep the house clean, make appointments, and do laundry. Or how about that my baby boy still cries in fear of pain. Everyday. That he can still not walk, go to school, play with friends, go to birthday parties, or places other children like to go. But, then I thought of you and your four children at Walmart. At 10:30 at night.... When my children look at me I want them to feel safe, cherished, secure, and most importantly....WANTED. Suddenly, those hickory nuts in my backyard do not seem so damn important. Neither does the weeds growing in my burm, or the leaves piled up on the side of my house. There is no going back in time. You can not un-change the example you set or the actions you throw in the faces of your undeserving children. For every person in this world who has a healthy child, be thankful. Never underestimate how lucky you are or how much your actions affect their life.It is too late tonight....but tomorrow, when I tuck Charlie in to bed, I am going to read him a story, kiss his cheeks, and tell him how proud of him I am. I am going to tell him thank you for fighting so hard because I just don't know how I could ever live without him. That even though life can be so hard, so unfair, and so stressful, that he makes it "all worth it" every single second of it.There, now I can stop beating myself up for not getting around to all the promises I have been unable to keep this week. I am trying. Very very hard.Please do Charlie a favor. Now this is huge. You can help raise $20,000.00 for research for Epidermolysis Bullosa and you don't have to spend a dime. There are only a few hours left. Please go to the link below and hit one little vote button. That's it. You don't have to register, give your email, or any information. Just VOTE. Christi Zink is one of my beautiful friends and EB advocates. She has devoted herself to raising awareness and raising money to help cure EB. She is in 3rd place right now and I know that if everyone who reads this would just vote for her she would win first place. Charlie is counting on you. Thank you..
Written Oct 22, 2012 9:51pm
“Even though it is difficult to measure suffering objectively, EB is one of the most tragic conditions I know.
We are at a critical juncture, where the cost of not moving forward is not acceptable.”
~Dr. Jakub Tolar
I truly believe this...choosing this route, the only route of treatment for severe forms of EB, is a very personal decision. Once you begin the process of transplant, there is no going back. Parents who are forced to make the decision for their children, have to believe that even though transplant is extraordinarily risky and there is a possibility t their child could die from the transplant itself, the alternative..... to do nothing and let this disease progress, is far far worse. This whole process has been extremely hard on Charlie and I. I miss my Alex, Hunter, and Chloe. I haven't seen my son Hunter since he end of July. I missed watching my sons run an entire season of cross country for Kimberly High School, I missed their birthdays, I missed my daughters first day of school, picture day, school shopping, and her birthday as well. I haven't seen my sister or her family in months and months, I miss my Grandma Nanny and wish I could be around to help her. If we add the time spent in Minnesota for the first transplant and the second it adds up to almost a year. That is a long time. When I start to obsess about my absence from my children's lives, all I have to do is think about is how absent I was in their lives before transplant. Physically and emotionally. The amount of time it took to care for Charlie and his wounds, took me away from them anyway. The hours spent behind a closed door, relentlessly bandaging Charlie's body, hour after hour, day after day, isolated us, and cut us off from the rest of the family and the world.
Right now, Charlie is in the hospital again. I knew he was going down hill on Saturday night. Sunday I took him in to he hospital before he even spiked a fever. I was not about to wait for the infection to eat up all his cells again. He was immediately started on some major antibiotics and today he is much much better. Tomorrow will be day 100 post transplant. We will be down in the O.R. for skin biopsies, endoscopy, and photos. Charlie will have his central line removed. Thank god. I know that the Central Line has been the cause of these recent infections and the drop in counts. They are going to replace the line with a temporary PICC line in his arm. If all goes well (please please please).......we are coming home this weekend. We are so ready. Keep your fingers crossed!