Charlie Knuth's Journal
A tough year
Written Apr 21, 2013 9:31pmI know it's been a long time...I haven't updated Charlie's condition because as ridiculous as it sounds......I don;t want to jinx anything. One year ago today, Charlie was enjoying life to it's fullest. His skin looked amazing, he felt amazing, and he was just starting the taper of the anti rejection drug that kept his immune system susceptible to infection. We had just began the planning and preparation for the following school year in hopes that Charlie could join his fellow classmates at Sunrise School. The weather was sunny, warm, and Charlie was enjoying time outdoors, riding his battery operated four wheeler, and swinging on the big swing that hung from our tree in the back yard. I could not have imagined at that time what complications and pain Charlie would have in store. After the taper of CSA (cyclosporin), Charlie engraftment numbers began to decline. When our family came down with a virus, little did we know that Charlie's own cells would attack each-other in response, and leave him with a non-functioning immune system. To describe to you what this means or what this "looks like" on a little boy with EB is beyond what most people could imagine. To move forward, Charlie needed another transplant or he would die. He teetered on the "ICU respirator" line for a long time. After his transplant......it was waiting, hospitalization, and pain. More pain than I care to remember, or talk about. After the horrendous wounds on Charlie's knees, neck, and armpits began to ease....the pain in his knees and femur bones lingered. The recovery from this second transplant can not be compared to the first. It has been much harder, longer, and scarier. Why? Because the chemo, infection, and the major catastrophic events that destroyed his bone marrow, have taken a toll on him. He did not walk for a very long time. Even standing would cause Charlie to tremble and shake. He did not give up and we did not give up on him. His wheelchair never came out....He would not use his walker. Even through his pain, the desire to play with his brothers and sister outweighed the comfort of a chair. In the past few months Charlie has had his ups and downs. But, he is in far less pain. We took him to see the Grand Canyon. We took him to Colorado and watched him swim in a "natural hot spring" for two hours. He has NEVER swam. He loved it and didn't want to get out. Charlie is catching up in school. No one ever could have imagined how quickly Charlie would absorb reading, writing, numbers,ect. He has made amazing progress that no one was prepared to see. He just needed to feel good. That's all. He has two days of school at home, and two days "at school" in his own little class room. He wears a mask in the hall, but he is able to feel like he is part of something. I do not think the fear of germs will ever leave me. I do not think that I will ever be able to just move on and forget what has happened in this past year. It has been both emotionally and physically exhausting on our family. I have stepped back. Taken a break from it all. I know I have "with drawn" myself from much of the world. When a person is isolated for so long, it begins to feel normal. This weather isn't helping either...So, after two years of isolation and winter....I have had enough. I am ready for sunshine, fresh air, and people. I miss my girl friends. I miss nights out, and I miss community events. I do not know if there will ever be a "right time." to break free without risking Charlie's health. Just waiting for a sign..
Written Feb 22, 2013 9:23pmI have been dreading this. I have been tossing emotions around in my head all day. OK, all year. Many days I completely force myself to pretend it never happened. I do that sometimes, when things are just too painful. I simply will not let myself analyze them. But tonight, as I sit typing this, in the room that was supposed to be Seth's bedroom, I will spill it.One year ago today, I sat in a room alone, on the other side of the US. I was in disbelief. I simply could not believe that I just watched the little boy we planned to make ours...die. Many people have said to me that "all things happen for a reason." I still do not see the reason for this. I am angry. I have been for a long time. I wonder how many children go without adoptive families because of the ridiculous "process" it involves. Children who have gone years in neglectful households and have been unsupervised by the agencies meant to protect them....all of a sudden become the property of the state and any well-meaning, loving, adoptive parent becomes the suspicious person with some ulterior motive. I have so many questions of "why"?I want to know "why" it had to take so damn long. I want to know "why" I could not take any pictures with Seth. I want to know "why" every moment we had together had to be "supervised" by "a person in charge." I want to know "why" there were SO MANY people in charge. Tell me "why" the workers at the group home made me feel so unwelcome. Why did they try so hard to sabotage what was good, loving, and best for Seth? I want to know "why" the social workers who were supposed to be working for Seth's best interest were more interested in playing "the referree" for all the "people in charge" instead of focusing on this little boy. I want to know "why" no one wanted to hear any knowledge of EB I had to offer. You can not imagine what it was like for me to have to watch that little boy suffer at the hands of the unknowing and NOT BE ALLOWED TO HELP OR ADVISE. I proved myself. Our family, our neighbors, complete strangers from the community, we PROVED OURSELVES and still.....all of our words and messages to Seth were erased off of his obituary page. The candle our family lit in remembrance of Seth was blown out. BLOWN OUT! Really?It has been a year. This has affected me. I have not let it go. I will not let it go. How many other children in this world go without loving families because of the policies, procedures, red tape, people in charge, bickering amongst all the "hands in the pot", and who has more "say"? How many children have to wait only for it to be "too late"? Loving, adoptive families, who just want to give children a home should not be treated this way. After an experience such as this, most would simply walk away and not put themselves through such trauma again.I may have not spent a year and a half with Seth working shifts at his group home. I do not doubt for one second that his caregivers loved him and gave him the best life they could, BUT the day our family decided to adopt Seth, I became his mother. In my mind I was his mother. No one else can say that. No one else even offered. Darboy became his neighborhood, Alex, Hunter, Chloe, and Charlie became his siblings, and Kevin became his daddy. We will never forget this little boy. We will never forget what the people in our community did for him. If he was here, you would love him. Immediately. You would love him....
Written Jan 30, 2013 9:51pmCharlie's life here on earth changes drastically each and every moment. One day he is spunky, playful, happy, full of energy and the next day he is unable to walk, suffering with painful non-healing wounds, and unwilling to get off the couch. Can't say I blame him...Optimism, hopelessness, relief, worry, calmness, anxiety, happiness, sadness, acceptance, anger....day in and day out, this is how it goes. I am not complaining. I am explaining. I know that life has no guarantees for anyone. I know I can not "control" each and every hurdle. I just want Charlie to have a chance. He deserves it. It is hard to see what his future holds when there are so few to compare him to. When I see symptoms show up which mimic his graft loss I instantly go in to panic mode. Panic for Charlie, myself, and my family. I may be selfish, but, I do not want to watch Charlie suffer that way again. I do not want to live in a hospital anymore. I do not want to have to tell Charlie he can't be at home with his family. These thoughts scare me on a daily basis. I am sure that his upcoming procedure in MN this Monday is triggering much of this uneasiness.Charlie had his labs drawn on Monday. Results came back for his White Blood Count, Platelets, and Red Blood Count.They were perfect. ????????????????????????