Speaking of her naps, her sleep has been totally wonky. She's either waking up super early, or super late. She's been up late each night (about 8pm instead of 7pm) and has been taking 2 1/2 hour naps. I can hear her right now whining in bed. I don't think she has fallen asleep yet and I put her down for her nap 45 minutes ago. She's still waking up every night (except for last night!!!). Ever since her g tube was put in in January, none of us have slept through the night. She usually wakes up 2-3 times before we go to bed and about 3 times during the night. It's quite frustrating. Lately, I have taken a tough love approach. I go in to make sure she hasn't pooped, or gotten tangled in her covers, and if all is well, I kiss her and just walk out - even if she is crying. I think that she has learned that if she cries, we come running. She is usually immediately quiet (or even laughs) when we enter the room. So I think she wakes up for what ever reason and just wants us there, instead of falling back to sleep on her own.
I thought it was working because last night we had a blissful night in which we never had to go in. But right now she is screaming her head off (I just went in and put her blanket back on her and she is super pissed that I walked out without getting her up). We really need to get daycare set up because if nothing else, Jim and I need a break for our own sanity.
Speaking of Jim, he got a temporary job at my college (it's a union shop and no union jobs are available to those right off the street). He's also applying for jobs at the Clark (an art museum) and Williams College.
I think the stress of the move has really gotten to me. I seem to be crying a lot lately. Yesterday, I took Eve with me to join the parish of our local church. What a nightmare. First of all, ever since Eve's g-tube was literally ripped out of her stomach without any anesthetic, she is TERRIFIED of doctors and medical settings. In fact, she screamed at the DMV and we had to tell her it was not a doctor's office. She didn't believe it and we ended up having to take turns holding her in the hallway. It's frustrating and embarrassing. We try to talk to her about where we are going and what will happen, but it doesn't seem to matter. She literally has a total meltdown. So, back to the church thing. I took her with me and the second that we sat down and the secretary's desk (which is right next to the priest's desk on the first floor of a lovely Victorian home that in no way looks institutional), she started screaming. I mean screaming. I could barely hear what anyone was asking me. It felt like it was a million degrees in that room. So what do I do? I burst into tears. It was awful. So now this really nice lady and this really nice priest are trying to comfort me (compassion always makes me cry harder, btw) and I feel like such an ass. If they only knew (I had no words to explain) that these tears were just a by-product of being totally overwhelmed with life, and not simply because she was crying at that moment in time. Eve finally calmed down to a whimper (until they tried to talk to her and it started up again), and I stopped crying as well. As I was leaving, Fr. Wayne asked if there was anything he could help me with, at which point I wanted to ask him about Anointing of the Sick and I totally started bawling again. I explained briefly about Eve's disease and it's nature and he said that we could certainly do that at anytime. I apologized for boohooing all over their office, and left. I cannot imagine what type of an impression I made. They must have immediately galvanized the prayer chain for me. Anyhow, now I am dreading church on Sunday. I have made Jim promise to make some sort of joke after church about my flooding their office or something. I think (pray) that Eve will be good in church. I am hoping the music and people to look at will help. It's experiences like this that just make me weary to the bone about our situation. It seems as though everything is a struggle with Eve lately. Ah, well. We'll get rolling on daycare and that should help. But, on the up side - an hour or so after we got home from the church the doorbell rang. An african violet and a ballon were delivered with a note welcoming us to the parish! I wonder if they do that for everyone, or if they just felt so stinking bad for me!
Oh! Eve got MAssHealth! It's healthcare coverage (free) and it will provide medicine, pay for Dr's, even diapers!!! We are being referred to a care coordinator that will help us get hooked up with all sorts of services. We want to talk about a new wheelchair for Eve that is more appropriate (maybe a stroller type that tilts). I also heard that there is a possibility of getting a personal care assistant for a few hours a week, low interest loans for making a home accessible, and much much more. Massachusetts may have lots of weird rules (we had to hire a plumber to hook up our new gas stove, Jim would need a special license to use a forklift), but so far it seems like it has really wonderful services. I'll post more as I know more. All I can say is that this took a fraction of the time that it took to get the Katie Beckett waiver in GA.
Last week my parents came for a visit. In addition to my dad helping with all things electric (and installing two ceiling fans), we found some time to explore. We drove up to the top of Mt Greylock (highest peak in the state - intersects the A-trail). It was stunning. And so close!! (We live at its base).
Here's the monument on the top:
And this is the view from one side:
Here are some fun shots that I took of (mostly) Eve.
