You know I am going to just tell you straight up, I HATE this disease. It has robbed my child of his strength, quality of life and dignity. I have watched with diligence for almost 21 years of his life. I have watched as the life has been drained out of his spirit. I've watched the frustration of this disease steal his stature and ability to become the man he desires to be. Knowing that there is not a dang thing I can do about it makes the hatred of this disease grow stronger. The strong feelings of hate for this disease can come out of anywhere and at anytime.
Yesterday we had a long wait at the airport in Baltimore. We were in the family restroom all together and it hit.....We had a meltdown.....Yelling, anger, fear and tears filled this little room in a public area. (Hopefully no one was waiting.) My heart still hurts today as I remember Dake plea desires to be independent and to be a man. A man with an independent life. It breaks my heart I cannot give him that. As a parent, we are suppose to teach our children independence and then one day give them it. It is one of the best gifts of all and to let them fly.
On Wednesday night, Dake stayed alone in the hospital. "They" highly recommended the parents not stay....as David pushed me in the cab, both our hearts were reluctant. This is the first time EVER Dake stayed away from us without someone he knew personally to help him. (on of the hardest things I have ever done). Before we left I was trying to explain to the staff he was not able to turn over and he would have to be turned regularly in the night. The nurse nonchalantly said, "Not a problem all he has to do is push the button and we will be here." Sounds simply right? Not for a Duchenne patient who #1 cannot reach to get the button and #2 then push it. Finally the research coordinator understood and had maintenance replace the call button with a "soft touch" button. You could almost breath hard and set this button off. (This made leaving a little better. Not much but alittle.)I placed the button where he could easily touch it and David and I positioned him in his favorite pose and we left. I kissed Dake goodbye and he told me not to cry.....he was calmer about it than I thought he would be.
Early the next morning we arrived in the hospital and Dake was in an awkward position for him. I greeting him cheerfully and said, "Hey, we all survived!" I asked him how it was last night and he said he did OK until early morning and he could not find the button. I said but I left it right here to help you. One of the nurses who took his vitals moved it during the night thinking he just had to roll to touch it and call. I asked him, "What did you do?" He said he yelled for a nurse until the lady next door pushed her call button to get help for him. (my stomach did a flip flop....ugggh.) Within thirty minutes David and I were worn out adjusting and arranging him to a comfortable position. He was almost in a panic, he was in constant need of us all day.
I do not know if this was what triggered the moment in the restroom at the airport or not. But I think reality kinda showed him (even though he knows)independence may not be plausible.
I am not sure but it hurts either way.
Lynn, I have no words, just your post brought me to tears. For a moment, I imagined that it was me writing this post about one of my children and I got so overwhelmed that I couldn't breathe. I pray for y'all and am so thankful that you are so proactive at finding a cure for this awful disease. I'm hopeful that one day (soon) a treatment will be discovered that could improve Dake's quality of life...and help other families who are (or will be) where you were 20 years ago. We will remain prayerful - for both potential treatment/help AND for your whole family. Love you all.
ReplyDeleteAs a nurse that has worked in nursing homes and currently taking care of a Duchenne's patient in home, I can feel your pain. I know all to well about the call buttons and pads being moved to where they "should" be able to reach them, but most commonly can't. I also know about the want for independence. My ccurrent patient is 32, on a vent and only has movement in his right thumb. He did graduate college with a degree in journalism, but has had to live with his mother and brother all of his life. There are days that I can see that he wants to do for himself, but he realizes that he cannot. I will continue to follow Dake's story, as it is just now that I fully understand what his disease can do and put the family through. Thank you for sharing your story with the world. Dake, Lindsey, and the rest of your family will be in my prayers.
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