When Reality Sank In

When something traumatic happens, I guess they say people go through stages of grief. Denial. Guilt. Anger. Depression. Up-Ward Turn. Reconstruction. Acceptance. I never really thought of Handsome's hospital stay as a traumatic event. People go through worse everyday. My baby was sick in the hospital, but I had a friend, who at the same time, was dealing with the tragic death of her child. She was going through a traumatic event. In my mind, I wasn't. I was just doing what needed to be done. I was just taking, what was being put in front of me, day by day. It took months for it to really sink in.
 "... intractable epilepsy" "Generalized tonic-clonic seizures!" "a lifelong treatment... special diets... compounded medicine" "... has developmental delays." "EEG. MRI. Home health care." 
 My baby boy was nearly two months old, and I was getting ready to take him home from the hospital for the first time, but instead of listening to a discharge nurse briefing me in newborn care, I was listening to a neurology team going over what to expect over the next few months with an epileptic baby. I was listening to a physical therapist, telling me how to do exercises to help my developmentally delayed baby progress. I, also, had a nurse teaching me how to insert an NG tube and how to clean it and use it... Through all of it, I held it together. I took it all in, but I wasn't processing it. It was like my brain picked up on the how tos with taking care of Handsome, but it wasn't letting me process the whys. 
 We had an hour long drive from the hospital to our home. I was alone, except for the sleeping baby in the backseat. The radio wasn't on, because I didn't want to disturb him. You would think, an hour alone in a quiet vehicle, that reality would have sank in, but it didn't. I kept my mind busy, going over and over in my head the correct dose of his medicine, what to do if he has a seizure, making sure I had the doctor's number memorized. 
 I went to all his appointments, his therapy, kept up on all his medications, tracked his weight... When he had a seizure, I'd get the dystat and time it. I kept a notebook, where I wrote down every seizure he had and how long it lasted, what he was doing when the seizure started, what the seizure looked like and what he did when it ended. I could say it out loud, "My son has epilepsy." I could talk for hours about his epilepsy, about his delays, BUT still I hadn't let it sink in. I still kept telling myself, it's okay. I'd even get mad when someone else told me my son was "different." He wasn't "different" to me. I had convinced myself that all these things we were having to do was normal. There was nothing more difficult to our life with our special needs son, then our life before we had a special needs son and our family was just like everyone else's. 
 Then one night, his seizures looked different then usual and he just wasn't acting right. I wanted a doctor to give me their opinion, but the doctor was already out of the office for the day, so I opted for taking him to the ER. It was a good thing I did, because 30 minutes after we got there, he had his first prolonged seizure. He stopped breathing and had to be intubated. After an hour and 16 minutes, they couldn't stop the seizure so they put him in a medicated coma. I watched my nine month old baby boy's body go from jerking all over to completely still and lifeless. And I felt the weight of the world fall on me, knocking me to my knees. Everything just hit me. My baby wasn't just sick, like I kept telling myself. My baby wasn't going to be better in a couple days, if I just kept up on his medications. I cried there on the floor of the emergency room, while doctor's stuck tubes down my baby's throat, in his knees, his forehead... Other people in the emergency room came over to where we were and held my hand, prayed with me, and offered a shoulder to cry on. For nine months, I had held it together. I had been strong for Handsome. I had told myself everyday, he was just sick, if I did everything the doctor's said to do, he'd be okay. But that night, I couldn't lie to myself anymore. I couldn't pretend that he would be okay. 
 It took me nine months to get past the first stage of grief. And yes, I then went through the anger, guilt, depression stages. And I've been watching my husband go through them, as well. I think he struggled a lot more in the guilt stage, because he was deployed and I think not being there for Handsome... and me, bothered him, a lot. But we are both getting to a point, where we can accept it. We may cry a lot more and doctor's appointments are a lot harder, but we get through it, because we have to it. People ask me daily, how do I deal with it? And I just do. There's no real answer to that question. Yes, I cry. I even lose it sometimes, but after I cry, I wipe my tears and let the doctor finish saying what they were saying. Then we try to make the best choices we can for him. 

It's not hard being Handsome's mom. Taking care of him is NOT the hard part, in fact it comes naturally. It's the knowing your child isn't well and you can't do anything for them that hurts. As his parent, I feel like it's my job to protect him and knowing that I can't protect him from epilepsy, kills me.