Fear

Saturday started out normal, Tadan was a little cranky so I knew it was probably going to be a bad day but was hoping I would at least make it to the store before any big meltdowns. Tadan got all his meds before I went and when I got back he was "ok". At 5:45 he began to hold his right arm and I knew he was in pain so I gave him morphine. After that, different jerks began to occur that I had not seen before and wondered if a seizure is starting. He tilted his head back and then grabbed his throat looked at me and said my throat, usually if his neck hurts he says his neck, but I still asked if it was inside and he said yes. I gave him a drink thinking maybe it was sore, he couldn't swallow it spit most of it out. I began to think oh my-his throat is closing up. A little panic started to sink in. I called Carousel(hospice), I was informed to give a couple other meds. But that didnt work he had spiraled into complete "storm"-brain was firing way too much and he wasn't making since, screaming, crying, jerking, hot.  My mom and Tadan's father made it over rather fast. He was in such distress that he wouldn't  take a breath, I picked him up and just kept saying breathe Tadan breathe and he was looking at me with such fear in eyes but yet had a look of, he was determined to get that breath. Once he took that breath I felt my knees buckle as I placed his bottom on the edge of his bed so I wouldn't drop him, I started to cry. I wanted to turn my head and vomit. I had told myself when the day comes that Tadan passes away I will let the Fear in for a second, accept it and then do what I need to do for Tadan. That did not happen, the Fear was too powerful and held on to me like I had been handcuffed to it, for it hasn't left my side. After the breath came I sat him back in his bed waiting for the nurse to arrive. Now through all of this Tadan had his eyes open, talking but not understanding him nor is he making since. All of sudden he closes his eyes and begins to say "no, no, no" over and over, then "I'm afraid, I'm afraid" and then "not yet not yet not yet". I asked if I wasn't the only one hearing this and they heard it too. When he started the not yets I sat in the chair beside his bed, put my hand over my mouth and just looked at Tadan, telling myself he can't go like this, he isn't suppose to go like this, what is the purpose of him dying like this, it should be peaceful . The Fear was weighing me down, blank at what to do now. Should I pick him and hold him or would that make it worse, I couldn't tell if he was in pain or if it was all the brain being out of control with signals. The "conversation" soon stopped but the "storm" did not. The nurse arrived looked in his throat to check for maybe an infection, no. Took his blood pressure and it was 142 over 107. Now I was told today that in children that number means in pain or anxiety is at its limit before moving on to a higher number. So now my question is if he hadn't have had the "conversation" would that number have gone up to cause cardiac arrest, its possible with this disease. I believe someone came to end his suffering but what I don't understand is why that way. Tadan was obviously not ready so he is still here to fulfill what he needs too. Fear however will be my handicap because if they came to put him at peace Sat evening but in a way I cannot understand, will they choose to do it the same way later, my only hope is that the answer is NO. Please no! My Fear of Tadan dying is not what I'm talking about, its how he dies. How can I accept an unpeaceful one, how does anyone? The last moments of Tadan's life should not be of screams, cries or jerking out of control. Another hurdle and more lessons, just when I think Tadan has shown me everything, he throws bigger and harder lessons at me to work through.  I have come to accept many things on this journey, but I will not know acceptance of this, for one-I can't unless it happens and two-I will forceable handcuff my other hand to Hope and Faith that he goes peacefully. Carisa <3