My son is just the most incredible being in creation. The determination in him is parallel to an olympic athelete or beyond. I do not understand why God has allowed this affliction in my buddy’s life, and I really don’t know what a life “normal” would be like. A life without special diet and nutrition, Teletubbies, 3-year-old diapers, feeding and highchairs, a constant backache from lifting his strong yet limp and jerking little body, sleep disturbed multiple times a night by a little boy reaching out to make sure mommy is there “just in case” (even HE know’s daddy won’t wake up if something is wrong), isolation because it is so difficult to go anywhere, his frusteration and disappointment because he wants so badly to run around and “pay” with “balls” with all the other kids if only his body wasn’t holding him captive (if I have to see that look on his face one more time…), the medications 3x/day, the heart crying out to God each and ever minute of every single day that he won’t have a seizure and that he will be healed and restored and this nightmare will be over for our family but especially my buddy, the lump in my throat the size of a house that I have had since that March day of 2008 when I saw his little 1-year-old body rhythmically jerking, the memories that haunt me of his cries as I listened through the door as they stuck a needle in his spine, or the screams of terror as they stabbed and stabbed his tiny little arm with huge needles that sucked blood from his veins for “levels” and “tests”. I wanted to rip my eyeballs out so I didn’t have to see the look in his eyes as I held him down for them to “help” him because I didn’t want him to think I had abandoned him. My ears and heart bled in unison as my baby was again given orders for “NPO” (no food or drink for 12+ hours) because of a test or MRI for the next day. My lactating breasts were equally as miserable listening for him cry for nourishment that I could not give him. I would have never DREAMED that I would have experienced what I have as a mommy. MOST mommies pick glue out of their childs hair because they got curious during a craft project, I pick glue out of Buddy’s hair after an hour long EEG. MOST mommies see something like a cold or stomach bug as a sad inconvenience that will be over soon, I see it as something that could take my Buddy’s life very quickly. Am I paranoid? Yes. But I know the Author of his days has not closed the book on his life, and I have a hard time believing that something like a common cold is going to put an end to such a powerful little boy. It just can’t be! And I am not the mommy of MOST children. I am Buddy and Sissy’s mommy for better or worse, sickness and health, till death parts us until we are reunited in heaven with Jesus and all this pain and crap is over and the REAL journey begins! I LIVE for that.