When you have a child with or without a disability, surgery, sometimes is an inevitable reality. The emotional toll on us parents is significant. We, the ones supposed to be in charge of the situation, feel helpless. Our children go through the physical pain, we go through the emotional one. They can't eat, neither can we. They go through healing, we go though a storm of emotions. They get better and stronger, we get older and grayer. We signed up for this, well, the responsible ones did.
That feeling of helplessness is horrible. You feel like nothing more than an spectator in this game called healthcare. Doctors, nurses, therapist and everyone else have a plan, and you just listen and wonder. You had a simple plan. All your plan consisted of was getting the hell out of the hospital with a child that is better than he was before this all started. Well, that plan is no good, but your gets blocked and you cannot generate a coherent one. Am I stupid? I know I can do better that this! They poke, and listen, and monitor and move, sometimes not fast enough for our liking, yet we just follow instructions, answer questions and get pissed off with the world. "Has your child ever behaved like this before?" they ask. All you want to say is, "Well, this is the first time we sliced him open, fill him up with all sort of drugs, so I don't have a damn clue! Do other children behave like this because I have no idea?" Anecdotal data floods our brain in an instant. He scraped his knee this one time, useless. Oh, that one time he fell from a chair and cried for an hour, better not to remember that one, it was my fault. He got a bad cold once, damn it, not enough to be relevant! We sift through memories searching for that nugget of information that will make all this mess better, but there's nothing there. We should know all this, yet our memories fail us, stress takes over and clouds of impending doom fill our conciseness. Medical staff has seen all this before, they listen and nod and follow their plan and we let go of the steering wheel. They take over, you are just along for the ride.
Right after surgery comes the pain. That invisible beast that is chasing your child day and night, ready to bite at all times. Every time it closes it jaws, your world cracks just a little bit more. Impossible to capture, it can only be tamed. Here come the drugs! That wonderful invention that can get us in lots of trouble, but we so desperately want. You have an entire array of them. Pain meds, nausea meds, muscle relaxers, antibiotics, stool softeners and so on and on and on. The merchants of health have them by the millions, and at a priced to match. Our wonderful child is now chasing the dragon through a lifeline that broke their skin and grasp their vein. More fluids, less fluids, more painkillers, less painkillers, all administered by a little pump that sees nothing, feels nothing but pushes its glorious content down. We pay the price, they pay the price. No good deed goes unpunished, and their healing miracles are not free. We become the dealers of comfort, the suppliers of good nights and wicked dreams. What is a few neurons as the price to pay, so pump some more for good measure. Side effects, we deal with those later, for now, comfort is the name of the game.
Our child is depleted, his reserves are going down. Time to eat, but it is not so easy. Now our child starts paying for those wonderful drugs. This first bill was due quick, damn it! Hello nausea old friend, you come in to take all the fun out eating with your constant desire to keep the belly empty. Don't you know that the sooner we get their tank filled, the sooner we can getting the hell out of here? We want to get back to our routine, even though we hate it, but it is familiar, predictable. That first sip of water, simple, but wonderful. Burping? Great, something starts to fill the void. You sit and wait for more gases to move. I bet you were never so exited about hearing or smelling a fart as you are now. The sweet smell of digestion that any other time gets a weird look but now is celebrated by everyone around. But how about us. We've been in silent solidarity with our child. They don't drink, neither do we. I guess we can spare a couple of meals ourselves also. Hell, we may even gain something from this experience by losing a couple pounds.
Pain is controlled, hunger is at bay. Something must be working! Now we are staring at the long road ahead, recovery. The human body is an amazing machine. It regenerates tissue, closes wounds, regains strength. Parent's bodies get old and tired, and stress is here to get its pound of flesh. We now look at every minute our children do, we protect every action and remove all obstacles. This can be a very stressful time for everyone. On the one hand we are happy that surgery is done, and we are back home. On the other, you see what needs to be done in order to get to where you were before. Here comes follow up appointments, therapy sessions, missed school days and late nights. The sacrifice we make now may be even bigger than the ones we did before. Now life must resume. All the shores of the household look at us, waiting for attention and we may not have any to give. We are focus on one thing, and that is to make our child whole again. All this weights heavily on our shoulders. They gain health, and we lose it. For every tear they shed, we shed hundreds. There is no deeper pain than seeing your own children struggle. Our world hurts.
All this is a balancing act that some people are not equipped to handle. I regularly wonder if I'm capable of getting through all of this myself. Others have walked this path before and emerge victorious, many others have failed. Where am I going to end up? Our path is not a straight one, and the journey sometimes takes us to dark places. The trick here is to not stay there, but to come back. It is ok to be angry, pissed off and hate the world as long as it does not consumes you and blinds you from the task at hand. I was the one that wanted to have a child. Come hell or high water, I will bust my ass to get them through.
