For twenty minutes he looked me in the eye and told me how to save my son’s life. His mouth moved and words flowed out with such ease. It was as if he was explaining how to make a peanut butter and jelly sandwich for him while I was hearing the recipe for a fancy foreign French delicacy. “Be careful to not suction on the way in or attach to the sides of his esophagus,” may have been a complex chemical equation. “If the catheter comes out of his mouth, pull out and reposition,” made me do the heebie jeebie dance. The catheter is sent down his nose into his esophagus to remove mucous blocking his airway. I am not a nurse but am tasked with performing medical procedures to save my child’s life. Twenty minutes of instruction, zero practice, and must perform it with accuracy or live with serious consequences for the rest of my life. No pressure, eh?
I woke up early this morning to head out to the local gym. They provide sitting services, and we can typically bring Braden if it is early enough in the day where his legs still function properly and he has enough stamina to handle it. That is unless we have a morning like today. It is only 7:45 in the morning and have already performed chest physical therapy to get his oxygen saturation levels up to where they should be. In short, my child was having a hard time breathing. Breathing issues mean no gym. Braden was looking forward to playing and I to exercising. Of course, I have to leave the class every so often to go and check in. However, his sister is now really good at knowing when something is wrong and can alert people to when he needs medical attention. There is comfort in that and deep sadness. Today I nearly had to pull out that intimidating suction machine and attempt to clear my son’s airway. Alas, I manage to dislodge the mucous and life went on as if it had never happened.
A-T changes our lives in such challenging ways. We can’t just turn on music and clean the house. One ear must always be trained to listen for that specific sound Braden makes when a coughing fit is about to happen, or when he is about to vomit, or when he is sucking in to get enough air. There are many many things we just can’t do, but there are many that we can. So, instead of playing at the gym we are having a tea party and playing dress up. We may bake cookies, play games to clean the house, have a popcorn movie watching party, and Nana and Papa are coming over to play. We focus on those good things. We stay positive. Remember that old analogy about the glass being half full? Well, we are those people. However there is also the story about how it doesn’t matter how full the glass is. If you have to hold it out in front of you for a long enough time no matter how full it will be too much weight to hold. Sometimes you just have to set your glass down and feel your way through this mess.
So, I made myself a second cup of coffee and gave myself twenty minutes. Twenty minutes to reposition and redirect my brain. I let myself be grumpy for a moment about not getting in that workout without guilt or feeling selfish. I allowed myself to feel nervous about under qualified to handle the tasks I am forced to face. I allowed myself to feel sad for what appears to be a very new normal in our lives. I acknowledged just how scared I am and to hope for more courage and strength. Then, I took a very deep breath and closed my eyes despite the loud click clack of play high heels traipsing through the house and pretended to be on a beach with the sound of waves gently crashing on the beach. Another exhale and I set all of that down. They are only little for so long, and in Braden’s case here for so long. I do not want to spend that time living not fearing, loving not angry. So, it is time for me to go find a princess crown and have us a royal parade if the subjects will let me!