No. You don’t. And it was 6 years ago today. We would meet with Dr. Lulla the oncologist on the 25th for the treatment plan but today 6 years ago we heard that Adler has Pilomyxoid Astrocytoma brain cancer. His neurosurgeon explained to us how it was inoperable. He said “with the several small tumors in his brain, it’s like scraping sugar off a donut. If you do that, it ruins the donut”. So those can’t come out. And with the cervical spinal tumor “it’s like a hot dog and the tumor is in the meat of the hot dog and that can’t come out either, it’s too risky”. And the lower lumbar spine that is thick with the same material in the tumor…..”that’s just like sludge and we will keep an eye on it just like the others”. We sat on the couch in the window. He sat by us and the nurse practitioner was with him. Adler was in his bed. It didn’t truly hit me at that point. Not until we would walk out of that room with the treatment plan in my hand and the fear in my heart. But I can tell you after he left everything looked different in that room that we had been in for over a week. Everything. Diagnosis day is a day you never forget. You begin to grieve the life your son will never have at that moment. But you don’t know it’s grief. That word hasn’t been introduced to you yet. You will also grieve your own life that will be forever changed. But again, you don’t know that yet. It will change the very fabric of your mind, body and soul. The living nightmare will keep you awake and unable to rest or find peace from then until…….who knows…..it’s still happening. But you will also gain an appreciation for things in life that others will never have because they don’t live life like you have learned to live. One day at a time. One moment at a time. Until you hear the odds against your child because there is a now named killer living inside him that they are going to try to halt that may also kill him…..you just can’t understand. It’s borrowed time. Daily. He knows it. We know it. Adler knows it. This life would break most people. And it has broken me for sure. I walk around in pieces. Existing for the love of the joy that comes so minimally now. 6 years. It’s a very long time. And yes we are thankful for every day of those six years but we have lived them forever changed, forced to live a life we didn’t get to choose and in unimaginable pain and anguish that had only just begun.

from Life with our little Super Hero Adler Bear https://ift.tt/3hT42HP

Adler