Waiting, waiting, waiting… What is the next step… drain, no drain; surgery, no surgery; cancer, no cancer…. Right now cancer does not seem like the worst option, although, if God is reading this please don’t let it be that!
My strong willed boy, my defiant youngster, I know you have fight but I see behind the eyes and I see that sparkle fade a little. Everyday Dr. Nz asks you in an accented holier (like you are also hard of hearing) “Aiden, can you open your eyes?” “Move your leg Aiden, Aiden move your leg”. I have seen you 10 minutes prior swat at the nurse or turn on your side but you now lay unresponsive. I can see you are fed up, frusterated with their questions. Through hand squeeze you seem to understand what we are saying. I believe you are deliberately not listening but, then there is that 10% that wonders if you really do understand. It is a constant battle with no words yet spoken. This silence is killing me. I wish someone could tell me something concrete. How long will it take for you to talk again? How long will it take for you to walk again? Everyday I confirm with the doctors that your speech will come back. Dr NZ assures me it will. He says can be 2 days up to 52 weeks but on average around the month mark. What kind of answer is that?
You were always such a talker, you talked so clear, in full sentences at 2 years old. I just can not get my head around this “cerebral mutism”. It just makes no sense. In all the studies I have read it says there is no real explanation, no medication, just waiting, waiting, waiting. I sit by your bed, you lay there in what seems like a coma or paralyzed, and I cry. More tears then I ever thought possible. What I would not give to take this from you. I just want to ask you how you are? How to you feel, are you in pain, are you uncomfortable, are you scared, sad, lonely but I can’t because I don’t want to project these feeling onto you if you are not feeling them. I did not expect this. I did now know…I AM SO SORRY.”
How to Help
I am so incredible grateful for the support we have and continue to receive through our friends, family and community. December 2017 we were given a life expectancy of a couple months. We are now in year three and fighting everyday to beat this awful disease but I have been unable to work in order to care for Aiden and receive no child or spousal support and very limited social service funding. Donations will help with all of the medical, travel, and accommodation expenses that I have incurred over the last three years as well as those expenses that are still coming. Donations will help with daily living expenses and will ensure the boys have great memories together for whatever time we have left.
If you follow Aiden’s Voyage on MamaOutpost please consider making a donation. Any contribution would be greatly appreciated.
Stephanie (aka MamaOutpost)