We spoke to the neuro-surgeon last night. He explained that some circumstances are black and white and some are gray. The one we are in with Zayne is gray. He basically said the decision is up to us. Up to us. My husband and I both felt the weight the neuro-surgeon put in our lap. When we first went to Texas the decision was clear. He was having awful headaches, the surgeon said he could help us. We did brain surgery and I saw my boy again for the first time in years. And now that everything has grown back but not having headaches the table turns. The decision tossed. Tossed in the air for any of us to grab and make. It’s a catch 22 I feel like. How do we as his parents decide what he needs? If we wait does he go blind in one eye? If we choose to put a port in his brain to drain the cyst risks of seizures, infection swarm over our heads like a bad dream you can’t wake up from. If we choose chemo we risk infection, depleting his body, and having him feel all around horrible. I was watching him play in the corn field the other day, so sweet. Innocent. Flashes of random memories are constantly running through my head threatening to choke me with grief. I want to go back. Back to after surgery. Back to Disney after we left Texas. I haven’t seen that boy in so long. The doctors tell me the cyst doesn’t cause behavioral changes. I know better. It was the little things that made my guts roll 2 months after surgery and I knew. I knew. I knew. I didn’t want to know. He wasn’t having headaches, his vision was normal. It was simply his demeanor. I can’t even explain it with all the words in the dictionary. NO word explains what I know from simply being his mother and having my kids be the very air I breathe.
People are always asking me what I think. What direction we will go. And honestly I feel betrayed. I wasn’t prepared. I thought I would be thankful when the boys went back to school. It would give me an opportunity to cry. Just cry and not worry about alarming them. But I fear all the free time has allowed my mind to dwell. Thoughts I would never allow into my precious barricaded heart have morphed into smoke and found cracks and crevices. The thought of being forsaken has become strong. I play my worship music and try to believe the words…make myself fight for what I know to be true. But it’s tug of war. I go from cursing God and screaming at Him asking why He would give us that gift of normalcy for 2 months after surgery only to take me deeper to rock bottom than I imagined. How could He do this? Why? It’s down right mean. Then leaving the hospital a week ago I see children with far greater need than my own. And I am thankful. I’m thankful my son runs and plays. I’m thankful he’s not in a great amount of pain. I’m thankful for his beautiful smile he’s able to give me. I’m thankful to hear his little voice sing the songs he’s heard his mama sing. I find myself teetering on CHOOSING to believe what I know in my heart to be true or believe God has left me and let it change me forever. I’m so tired. I find my fighting spirit struggling. I’ve always been a fighter. And I find myself asking what to fight for. This battle with my son is beyond my reach. I can’t make the cyst deflate. I can’t make the tumor disappear. I can’t kiss away the blindness in his eye. I can’t erase all the pokes, the sickness and headaches. I find myself researching his tumor, the chemo, the cyst. All to no avail. Any information I gather does not change what I know in my guts. That is, that this plan is not mine. No one would choose this for their child.
So I come to the defeating and surrendering conclusion that I have to believe God has a plan. Because Faith…Faith is unseen hope. If I were to turn from my faith…all hope would be lost.