My life has been so insane lately and I am totally looking forward to some down time. Life seemed to come into perspective last week when I received a phone call that I never ever expected. It was my friends sister. I thought we were talking about buying jewlery when she informed me that Seth died. It didnt register, and she had to repeat it three times. No, this cant be true...How could this be true? He has a cold, kids get colds ad they get better...I must have fallen asleep on the couch and am having a bad dreak right? After al it is nap time...When Ayva came by me asking why I was crying and held my hand I was well aware that this was not a dream and Stacy had given me some awful no good news.OMG. Why? Why does this happen? Why does a little boy who was so close to receiving his family have to lose his life? Why does my friend have to have her heart broken like this and what am I going to tell my kids who have grown to love this little boy that they have never met? Oh my gosh... I will never understand and I think this whole community will always have a bit of a heartbreak over this little boy we have never met. All I keep thinking is my friend is heart broken and there is nothing I can do about it. Nothing I say or do will help make her heart feel better. Please read the beautiful words that she writes about her whole experience and please say a prayer for Seth and the whole Knuth Family. Trisha sure is my insperation to be a better person. I have learned that life is short, live it, and be the best you can be and help others when you get the chance. Leave your mark...I know I am never going to take anything for granted anymore, and I am going to have as much fun as I possible can with my kids. And darn it all, I am going to do the EB run and I am going to run it all...Who is with me??
Written by My dear friend Trisha, and Trish if you are reading this, the world needs more yous...(yeah I am sure that isnt a word)...Love you pretty lady..
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I have not been able to share much of my experience about Seth until now. Because Seth belongs to the State of Washington there are confidentiality laws to protect him. I can share my story with you now. I flew to meet Seth on Feb. 3rd. As soon as I landed in Seattle I immediately got in a rental car and drove to Olympia where he lived. Seth lived in a group home for children who were considered “medically fragile.” Seth’s social worker, and Staff met me. I was nervous. I was not sure how my emotions would react to meeting Seth for the first time. Seth drove out in his electric wheelchair. Large eyes, blonde hair styled in a Mohawk, skinny skinny legs wrapped in dressings, and little fingers poking through thickly wrapped hands. All my nervousness disappeared. He drove up to me. I told him I was in Washington to meet him. I had a little boy with the same kind of skin and I would like to spend some time with him. He said yes. He showed me his bedroom. In the middle of his bed was his “light up turtle.” This turtle lights the ceiling at night with stars and a moon. You can choose 3 different colors of lights. Seth’s favorite was blue. I sent Seth this turtle from Santa Claus at Christmas time. Charlie has the same one in his room. His favorite light is blue…
The next morning I went back to the group home. And the day after that, and the day after that, and so on for ten days. He waited by the window for me to come. I read him books, we made food that he could never eat, I brought him toys, I told him about Charlie and my family, I showed him pictures, and I fell in love with him. I would tell him about the EB Butterfly and the doctors who were working so hard to “make EB go away.” I wanted to give him hope. Real hope.
Seth liked to help by holding things, pouring, stirring, throwing things away. He would follow people around in his chair and ask, “what are you doing?” I brought him “boy things.” I wanted to pretend play with him. He did not know how. I would pretend to be a dinosaur eating other dinosaurs. He would look at me like I was crazy. I would attempt to put legos together. I brought him Star Wars action figures. His favorite was Yoda. I read a whole book to him in the “voice of Yoda.” I had a sore throat for 2 days. He held Yoda in his hand where ever he went. Even in the bathtub. Seth was very quiet and withdrawn. I so badly wanted to see him act goofy, loud, and obnoxious like boys his age should. He had a very dry sense of humor. He was so funny. So funny in an adult kinda way. He has been surrounded by adults his entire short life. So many adults. Adults who were “in charge” of him. So many people who loved him, but wanted to control the way things should be. Too many people. So many in control of Seth that no one ever really was. Decisions had to be sent down a command of people who disagreed often to what was right or wrong, or how things should be done. I often felt like I was intruding on their turf. I was taking away their child. A child they were paid to care for. All I wanted was to make him a home and show him what it was like to have a family who loved him. A real family. Not groups of people paid to care for him.
The night I had to fly back home Seth got sick. His cheeks were rosy and he had a fever. He was admitted to the hospital. That is where I had to tell him I was getting on a plane because it
was time for me to go home. He shook his head and stared straight ahead. I told him to look at me and he did. I told him that I loved him. I loved him so much. And I was coming back. I promised him over and over that I was coming back. I left him the EB Butterfly necklace around the Stuffed Ladybug I gave him. “Please keep this safe.” “When I come back for you, you can give it back to me.” and then I left as he shook his head no. I got home on a Tuesday night. The next day I got an e-mail that Seth got very sick. It was a very vague e-mail. I packed my bags and got right back on a plane back to Seattle. I still could not get too much information because of HIPAA laws which protect the medical information of patients. Even though I was to become his mother….his medical privacy was held from me. I ran through the halls at the hospital to the PICU unit. When I arrived Seth was on a Ventilator and attached to continuous hemodialysis. This scene was the same scene one year ago with Charlie. I was actually relieved to find out that Seth did not have a bacterial infection in his blood, he did not have pneumonia. He had a virus called RSV. I was hopeful that in the coming days the docs could slowly wheen him from the ventilator and he would be fine. I stayed with Seth at the hospital. I guarded him from unknowing hands who inadvertently pulled sheets of skin off with their sticky gloves. He seemed to start and improve. I held his hand, sang to him, and put lavender on his sheets. I whispered in his ear that I was going to make him my son. Even though he was not supposed to know yet. I told him I wanted so badly to be his mommy. I told him about his new bedroom, about the workers putting up the walls. I told him about the village of people who came together for him. People who never met him and loved his already. I told him about his daddy, his brothers Alex and Hunter. I told him about his princess sister Chloe. I know he could hear me….I was not supposed to tell him yet, but I didn’t care. Wednesday night I went back to my room to sleep. He looked peaceful and he looked good. When I came the next morning their was a flurry of activity. The nurse told me that in the night Seth’s blood pressure started to drop. They were giving him medication to keep it up, but they did not think he was going to live. They did a ultrasound of his lungs and stomach. He was full of fluid. Everywhere….there was nothing they could do at this point and his body was shutting down. He had had enough…..I sat with him all day. Groups of nurses who became his family came in to say goodbye all day. Doctors who have cared for him since he was born shed tears. His brother who is 11 even came to say goodbye. I held his hand, wept for him. Finally at the end of the day as the sun began to set his breathing tube was removed. Seth took his final breaths with my head on his. The color drained from his face and he was gone….
I am devastated. I am on a plane back home with a lock of his hair, his armband from the hospital, his ladybug, and his EB butterfly. I am so sad. So so sad….He was so close, so close to having what he deserved to have and it was ripped away from him. I will never understand this. I take comfort knowing that I told him how much I loved him. How much I wanted to be his mommy. I was glad that I could be there for him. As a mom., not a paid employee. I wonder what happens to him now. Where do his remains go when he belongs to the state? What about his things? His favorite books? Will there be a funeral for him? Was he ever baptized? This is so unfair.
There are volunteers at our house right now. Building Seth’s bedroom. These men who work so hard. For nothing. All for a little boy who they never even met. A little boy who has died. His bedroom is still going to be built. We are not changing a thing. He will still have his medical room, bathtub, and bedroom. He is not the first little boy to be born this way and left. He will not be the last. We will be here waiting. We will be ready this time. I will never forget the image of this sweet, gentle, loving little boy who laid his head on my shoulder while I itched his wounded back. I love you Seth . Mommy…….
