When Max got on the camp bus this morning, my heart actually hurt and I felt like I couldn’t breathe. I am happy he is off for a fun day and I am happy to have some quiet but yesterday was a Max all day, all the time day. He had his appointment at Children’s Hospital with its never fail ability to rock me to my very core and then a lazy afternoon at the pool and a completely restless night where I spent most of it feeling sick the sofa downstairs watching a million episodes of That 70’s Show. and, that show is hysterical…not just funny, not just chuckle funny, laugh out loud funny.
So..here we are again… the semi-annual soul searching and gut wrenching- I have affectionately begun to call my “visitor.” Once again, we are the place where weighing various methods of treatment are necessary and the only thing that hangs in the balance is Max’s entire life. The fact that he has CP isn’t what is breaking my heart this morning. That is a given I have grown to find some peace with. The mere existence of it is manageable. The thing that is the most painful is what I see as his suffering and the assault to what I can’t seem to find any other word for but my sense of “justice.” It is so unfair. He is so sweet and kind and lovely and beautiful and life is so damn hard for him. He got on the bus with his special seat and his walker and his big bag and he looked a bit glum to be leaving this morning. He sits alone on the bus because he has a car seat. He brings toys to occupy him and everyone greets him with warmth and kindness. But, behind his bright smile, there is a struggle that I can’t help but see. He is getting bigger and older and his body is his enemy. He wants to run and play and he can only do that so much. His walking is so hard for him lately and he hasn’t made much progress in more than a year.
We are re-thinking everything for the future and are willing to consider the drastic measures of surgeries and injections and casting that we never thought were right. The holistic approach we have been taking and the person with whom we have been working seem to be abandoning us . He seems to be needing more than what we have been giving him and what that means is a journey down a risky path. With every possible surgery or injection of poisonous medication, there is a great risk of doing harm to him. Without them, we cannot say that we tried everything to help him learn to walk. If he doesn’t walk later in life, I need to be able to tell him that we tried everything we thought was right and that G0d had other plans. We have been all over the country looking for someone to tell us what is right and it always comes back to the surgeries.
He gets on the bus in his cute little camp shirt and says goodbye to me with so much trust in his eyes. He is looking to me to know what to do and I don’t. I have talked to people and read articles and talked to people who know other people and read more articles and message boards and books and Seth and I have spent 6 years debating all of it over and over and over and over and we still don’t understand anything or know anything more than we did years ago. I often think I know less and less as he gets older. The bigger he gets, the less we know.
Yesterday, as part of the doctor visit, they of course weighed him as they always do. They put him on this large scale with his walker and weigh them together and then weigh the walker and subtract. I was happy to see that he has grown and gained weight appropriately, but when the nurse told me that together the two weigh almost 55 pounds, it was like an alarm went off in my head. I cannot lift him much anymore and I cannot carry him and his walker as is so often necessary. I am stronger than I ever thought I could be but I can no longer manage that amount of stuff and person for more than a few minutes. The realization that he will grow and and get bigger has been a like an albatross around my neck. I knew it will come but I can hope it doesn’t. It seems like in the last few months, he has become a real kid – no pretending that he is a baby anymore – and he must carry his own self.
What does one do when he cannot carry his own self? I mean this in the most literal as well as the most figurative sense. He must at this point carry his own weight in the world and he can’t. What does that mean if I can’t carry it for him either. Seth admitted to almost dropping him this past weekend and if even he can’t carry Max’s weight for us, then I am suddenly afraid. Seth has been on this earth to carry our weight, to solve our problems and be the voice and shoulders of reason. If together we cannot carry this weight, what will we do? We are the parents, and there is no one else to do it for us. I wish I had parents who could carry it for me. I wish my own father could just sweep it up and take care of it.
I spend a great deal of time pretending to do other things. I work a little and I see friends a little and I clean up a little (very) and I even pretend that I can be a some sort of public official, but none of that matters to me one bit. The only thing that matters and the only thing I ever really think about is what to do to help Max. His life is the only challenge by which I think life is measured. If we choose right, his entire life will be better, and if we choose wrong, we fail his entire body and soul.
What is the next step going to be?