I have a lot to say... there's so much on my mind but it's too tangled and jumbled to get it out. I have heard this from several different people... my friend, who writes Cira's Lyrics, said recently "I always think to myself it is when I have the absolute most to say, that I end up saying nothing.". She's a smart lady...
I guess I will start with the Monkey... as I said before he has a lot of appointments coming up. Wednesday he is scheduled for his first unsedated MRI (4th MRI in all). I am so glad they are not going to put him under, it's really dangerous for him and each time his reaction seems to get worse. I know it will be hard for him to stay still and to tolerate the noise but I also know he can do it. I am trying to prep him for it but I'm not sure there is a way to truly prep a 7 year old for an hour and a half MRI. I'm not sure how far self or assisted imagery is going to get us. Hopefully he will be able to take some breaks in between... He had a dream Friday night that he was in the hospital and the doctor wouldn't allow me to stay with him, Adam and Claudia were there though. In his dream Claudia kept talking and moving and the doctors kept starting his procedure all over again. He said it was the worst dream he ever had.
I hate this... I don't want to hold my son down for one more procedure. I can't listen to him cry and beg me to let him go even one more time. I can't lie to him any more... I can't make any more promises that probably won't be fulfilled.
But I will... I will and I will hope and pray that this time is different. That this time we get the answers I've been promising him, that this is all for something... that he will be helped.
you are an incredible parent... I see moms like you everytime I walk into work and I am amazed daily. I can't imagine going through what you go through on a daily basis. I am the Nurse and I care for these children but I get to go home. Often on my drive home from Boston I think of parents like you who are stuck there, looking at the same walls, same building to the point of just wanting to run outside screaming!! I pray for you, all of you. You were chosen by God because He knew your son would be taken care of in the most incredible way. Melissa
ReplyDeleteMelissa, thank you so much for your response. Your words mean so much to me. Even though there is no way to stop the pain that comes with seeing your child suffer, the work you do helps to lessen the blow just enough so that we can shoulder it. I know there are so many families that have to deal with much more than we do and my heart aches for them. I'm not sure I could be strong enough to do what you do... Thank you...
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