Frustration, Hope, Fear and Sadness

I sit here at midnight, trying to get all this off my chest before I can actually go to sleep. Although, at the same time, I feel like I could sleep for days.

It’s just that I’m having this weird culmination of feelings: frustration, hope, fear and sadness. I am frustrated that it took so much to get a proper diagnosis, and that doctors that I am supposed to trust, wouldn’t take the time to listen to me. I know it must be hard to be in a job where you are always dealing with overbearing moms. But, we are the ones that know our kids best. We are with them the most. If I hadn’t been an overbearing mom, if I hadn’t been doing research, if I hadn’t gotten a second opinion, then I don’t know how long we would be continuing down the wrong path with the wrong treatment.

You may not realize it if you looked at me with all the tears running down my face right now, but I *am* hopeful. I am hopeful that the medication (Sabril) will work. But, the statistics aren’t great. There are stories about how wonderful it is when it works. It can truly be a miracle drug. But it seems there are many more stories about when it didn’t work. If it doesn’t work, then there’s only one other medication that is suggested. If that doesn’t work, then we don’t have a lot of options.  Maybe the ketogenic diet, or brain surgery, and I can not stand to think about surgery.  I’m not even sure if this is coming out coherently, since I’m tryint to type through so many tears. I just don’t understand. Why would this happen to any baby, and why did this happen to our sweet baby? You know, in the news, they’re always featuring people who have hardships, and their loved ones always say that they never questioned why, that they just moved on, and dealt with it. I wish I could be one of those people. But, I’m not. I don’t understand. I don’t know why. Why? Why? Why?  I mean, look at this sweet baby.

My Sweet Baby Z

The Sabril has to be special ordered and should arrive at our home early next week. But, I’m TERRIFIED to start giving it to him. Yes, I’m glad he will finally be given the *right* medication for his condition. But, what if it doesn’t work. I just don’t know how I can hold it together. I’m trying to hold it together, for my daughter’s sake, but I feel like I’m failing miserably. My house is a disaster, and my daughter is overdosing on junk food and tv, but I’m doing the best I can. I hope I can hold off visitors, because I’m just not in the mindset to entertain for an hour or a week, and I’m not good at accepting help, and it would just end up being more stressful, and I don’t need any more stress right now. We have been planning a trip to see my husband’s brother and his wife, for next weekend. I do hope that baby Z’s seizures and controlled enough for that. It sounds good to get out of here and have a break from our routine. If the seizures aren’t getting better, then it’s going to be a sad realization that life as we knew it is over. It’s weird to be in the midst of that kind of life-altering change, and see on FB that everyone else is going along in their happy little lives at warp speed, and we’ve slowed down and are taking things day by day, sometimes minute by minute. It’s hard to see your baby seizing. It’s hard to see other people seeing it for the first time. It’s hard to imagine all the things that you had imagined for your little guy that are no longer possibilities. Even if the medication works to control the seizures, did I mention that it can cause loss of peripheral vision, or even blindness? And, I’m not talking in a few cases. The drug’s website says 30%. But, controlling the seizures and stopping any regression is most important.

I guess I just feel like I’m mourning the loss of all the hopes and dreams I had for my little guy. I’m not talking the reach for the stars, become president type dreams. I’m talking the little stuff that most parents take for granted. I want to see him crawl, and walk, and talk, and feed himself. I *want* him to color on the walls and bang on pots and pans. I want my happy, healthy, smiley, giggly baby back. What I wouldn’t give for that.