We have neighbors.
We have “met” those weeks ahead and now my husband informs me weeks behind in this journey.
From the future ones, we have hang on every word.
Dissecting them to learn what to expect, but like with everything in this process, no one person’s words are the same. Every child/family experience is different. Every tumor unique. Every story full of a roller coaster of emotions. We do get tips. We ask the BIG questions that are debated on parent blogs all day and night long. We solve some things. We will change Jacob’s port (his “tubies”), even though that is another procedure, parents insist that the quality of life is better. This everyone said. The idea of another procedure scares me, but in this world, things are a bit different. This is nothing. Going under is nothing. This is a small procedure. Another scar against the dozen others. So we will do this. We would do anything to make Jacob’s life better.
We are parents. We will do everything to make life better for our child. That is our job…
Two nights ago we even met people who have returned to your time. People from our time who inhabit your time FULL time. WOW. They complain of jet leg, but they made it. They work and they go out to dinner and they PLAN. They plan on going places or even a birthday party. One was even planning her son’s bar mitzvah. Wow. I look forward to planning that. It’s going to be HUGE. You’re ALL are coming right?! You better be!
We did get some bad news. Many parents believe we haven’t even started yet. That after surgery the clock really starts. That the chemo and immunotherapy that follows, the phase I’ve been looking forward to is the worst part, your child will be in pain.
WHAT?! How can get it worse?!
But I guess it can.
And then Steve told me he had a run in.
On Facebook. I can’t look at social media, so I only know from him.
He saw a post. It was on the neuroblastoma page. Someone 4 weeks behind us. Someone at the first starting line of this crazy race with multiple starting lines.
The experience reminds me of those corn mazes. You can only see the way out from the sky, the bird’s eye view. Unfortunately, we are humans and have no wings. We will only find out way out through trial and error. Birds must look at us as stumbling idiots as the answer is so clear. “Go right you stupid human!”
And I hate corn mazes.
The last time I was in one I was alone with THREE children. I had someone else’s child with me. And they all wanted to go. Okay, something to do. And then… BOOM. All three running in opposite directions. This is a parent nightmare. I can’t find them. I can’t find them.
I was yelling. I was screaming even. I found one and then another and then the third. Sweating, screaming, cursing. The whole thing.
Once I had my physical hands on them you know what I did next? I got us the FUCK out of that parent torture chamber. I told myself to look for light. Find an edge. I then hacked away at that corn maze wall and created a small tunnel and I made all three kids get on their hands and knees and crawl out of that place.
Maybe not the best lesson. We never found our way out, but We created one.
That is how this feels. I’m back in that corn maze. I keep looking for light. I keep looking for a way out and just WISH I could fly above and be wise like the bird. To know that there is an end. To see the end so I can start walking in that direction. To stop walking into dead ends. And again I’m shouting for a child.
Chills. I hate corn mazes.
And now I know there is someone who just stepped into the maze.
Steve responded immediately to her post. A private message with our information. Call anytime. We have not heard back, but I know we will. And I will pick up the phone. I don’t talk anymore, but I will for her. I will cut my arm off for this woman. I don’t even know her name yet, but I would. I would. And I’m dead serious.
But I’m not sure what I will say. I’m sure it will come to me. But I am unclear what to share. I can’t say “it will get easier.” That’s a lie. I can’t say I know the way out of the maze. I can’t really say anything except that I live in her time. I understand her. I hope that is enough.