March 15th, 2005

A little bit of a rough night last night. I have some sinus thing going on and couldn’t sleep. Jakob woke up at 3:00 crying. Still not sure why, I think he was upset that one of his socks had fallen off. He was pretty wound but ended up falling back asleep after a little cuddling and a Baby Einstein video. Sometimes I wonder what we’d do without the videos. He doesn’t watch near as many as he used to and I know they’re not the best thing for him but sometimes, they’re our only hope. Everything in moderation, I guess.

We had our first play date at ABC on Saturday. I really think it was a huge success. I sure know Jakob had a blast. He was all over the place…climbing up the slide, going up the rockwall and even jumping on the trampoline! It was very exciting! All the kids did great, I didn’t see one meltdown and they had no problems taking turns. It was just so nice to see the kids just being kids…it wasn’t structured therapy, it was just playing with whatever they wanted to play with. I loved it. I can’t wait to do it again.

I got to talk to a lot of parents at the play date, there are so many of us in the same boat. I was extremely impressed with the level of passion all the parents had for helping their child. They were just like me…whatever it takes to make it better. It was so nice to be surrounded by people who understood exactly what my life is like. I don’t think you can fully understand unless you live it. People can sympathize but not empathize. There was a whole lotta empathizing going on in that room. Like I said, I loved it and can’t wait to do it again.

The one thing I learned talking to all the moms is that inevitably I will have to fight for my son. Most of the parents who have been dealing with this longer than me have had to fight somebody…a teacher, the school, therapists, doctors. I’ve been really lucky so far that I haven’t had to fight anybody but the insurance company (and I’m letting Kenny handle that). After Saturday though, I know my day will come. I’m not looking forward to that, I hate confrontation. And I suck at it. I’m a wimp, I back down easy. But who knows, if I’m fighting for Jakob, I may just turn into a raging nightmare. Kinda like the woman with super-human strength that lifts a car off of somebody…yeah, that’ll be me. We’ll have to wait and see, but I’m starting to mentally prepare myself.

While I’m mentally preparing for a fight, I’m going through the worst of my phases. (My whole life is a cycle of phases that just keep repeating themselves…most of the time in a specific order. Last phase was exhaustion and depression.) I’ve moved into my “I’m insecure and I desperately need lots of validation” phase. This is a very annoying phase. I’m making everyone around me nuts. I don’t blame anyone if they don’t really want to be around me right now. I question everything I do and second-guess every decision I’ve made. I way over-think all the decisions I’m currently making and I swear, I’m bouncing off the walls. I cannot sit still. I have to go, go, go or else I go nuts. I have to feel like I’m doing everything humanly possible to make Jakob’s life easier and if I’m not doing everything then I’m not doing enough. Now if I could just quietly go through this phase, it wouldn’t be so bad. Problem is, the validation thing. I need to hear over and over again what a great job I’m doing. I need to hear it from EVERYBODY. It’s ridiculous. If I don’t hear it, the cycle continues…my brain tells me “if no one’s telling me that I’m doing great, then I must not be doing enough so I need to do better. I need to do more…what can I do? How do I accomplish that? When am I gonna have time? I’ll figure it out cuz I have to cuz I’m not doing enough. If I was doing enough, I’d be getting more praise”. Scary, huh? Welcome to my reality…I think too much.

Taking into consideration that I think too much…this phase always has me questioning whether or not I’m crazy. And if I am…will medication alone help or do I need big-time therapy? And if I need therapy…how will I pay for it? All my money is going to Jakob, I’m not gonna cut back on stuff for him so I can pay to go “talk to someone”. Once I get this far, I decide that I’m not crazy. I’m just tired.

Unfortunately, this phase affects the people closest to me. I constantly go fishing for praise and voicing all my insecurities. I can tell I’m making everybody nuts. I’m sorry, I don’t mean to. This phase will end soon…I promise.

One thing that has to get done is a schedule. I need help scheduling. I’m gonna have to get a “schedule book” and write everything down. My whole life, I have fought having a schedule. Ask Jeff, he’s been telling me for years to “make a list” and “write it down”. I don’t like schedules. I have always felt that people who live by a schedule are wound too tight, too serious. Too much structure would make me feel “trapped”. I always wanted to “be free” and “go with the flow”…”take things in stride”. I have always lived like that. I can’t anymore. I’m too overwhelmed with information and places to go and questions to ask, things to do, errands to run, books and articles to read, people to call, e-mails to answer…. Party’s over. I have to write things down.

I feel like a pre-schooler who overnight skipped K-12 and undergrad work and went straight to getting my doctorate. That’s what this feels like. Another Mom put it well when she said to me “Baptism by Fire”. We have all these wonderful people working with our kids who know what they’re doing. They’ve spent years in school learning about our kids’ issues. Thank God we have these people…but when can they move into our house?? We parents spend more time with our kids than all their teachers, therapists and doctors combined yet we know the least about what to do to help them. That’s a rotten helpless feeling. Knowledge is power…I’m working on that.
On a much lighter note…the basement is coming along, my Mom gets here Thursday. Kenny will be leaving for New York Thursday afternoon and I have a fabulous event for Cincinnati Children’s Hospital Dept. of Developmental Disabilities on Friday night.

Jakob is really doing great. I try very hard to not let my “phases” affect how I am with him. I think I do a pretty good job of that. When he and I are together, I really feel like everything is gonna be ok. His smile fixes everything. I look at him and I feel it in my gut…he has so much potential, I just gotta figure out how to reach him. It’ll happen, I just know it.

-Jenn