Saturday, August 22, 2015


Freedom. I feel like we are Prisoners of War finally released from our bondage. A year ago our future looked bleak. I imagined what it would be like to plan Emma's funeral. There were days I would grab her and sink to the floor sobbing at just the thought that I could not rip the tumors out of her brain myself. Now we have a future, I can make plans for her, for us. Freedom.

This week in the most literal sense Emma is going through a detox and slowly her body is returning to normal. Her hair is growing rapidly, her nerve pain in her feet happens fewer times in a day, and her chemo rage tantrums are happening less and less. Of course Emma was one of the rare children that becomes hyper from chemo treatments. She was bouncing off the walls after hospital trips and now she falls asleep easier and actually takes a nap in the afternoon.

She is detoxing in other ways as well. For so long her health was the center of the family dynamic, now she is closer to being a "normal child" then she has been in her recent memory. I see her trying to make sense of it all, I am too.

Now that we are off chemo it is inevitable that other issues will come fill the giant void that it once consumed. I find myself sitting in shock that she is legally blind. Of course I knew she was blind and needed glasses to see out of her only seeing eye but now that I have a clear head I am realizing my child is blind. She may never drive a car or do well at sports that need depth perception. Of course Emma can and will do anything she sets her mind to do. That is one determined girl. I am realizing it is time to research things to help children with low vision.  Although my MA is in Special Education I had only two classes on the blind. My focus was the Deaf and Hard of Hearing...anyone seeing the irony here?

Emma goes to the surgeon on Thursday. We will be monitoring her main tumor for more debulking surgeries to prevent it from causing issues like seizures. She will also see the Neuro Pediatric Opthalmologist to check her eye health and get a more accurate prescription.

Gracie also gets a break from Stanford tests and medicines but she will begin a party of different therapies as soon as I can find specialists that are not two hours or more away! She needs to get into Occupation Therapy, Speech Therapy, and Physical Therapy. Of course we live in an area where all those doctors do not take children.

This week was our first full week of homeschool and we took "no more chemo" pictures with the
same photographer who did our "before chemo" pictures last year. Next week Emma and Gracie start ballet! It has been a life long dream of mine to have a tiny dancer and I cannot wait to watch them twirl. For me it is a sign of normalcy, I can sign Emma up for a class with her peers. That makes my heart happy.

I am still not in a position to share publically what happened with Emma. So many of you wonderful friends and family members have asked gently what occurred. I wish I could talk about it, soon, just not yet. Just for now let's be happy that we are free from chemo.

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