Thursday, September 10, 2009

Living With Choices

This is my first post since our move. My family and I moved out of Lymeland across the country to the beautiful Pacific North West. No matter how you slice it, moving is hard even when things go as planned don't you think? My husband lost his job over the winter, so we decided it was a good time to look for jobs out of Lymeland. Fortunately, we were able to do it, and got out.

We are still adjusting to our radically different lifestyle - from living on 3 acres in the middle of the woods in a small town to a city apartment up 2 flights of stairs. I am having college flashbacks that's for sure! We hope to sell our house back east soon, and then we'll see where we stand. It gives me perspective to live like so many people do all of their lives with kids and dogs, in a much smaller living space. We really had it good living in a house where I could just open the door to let the dogs outside, the kids could come and go as they please. Now I abide by the poop schedule along with the school schedule.

As we drove away from our house for the last time it felt right. Not that I wasn't crying a bit, we all were, but it was grief just as grief is, nothing else like regret, uncertainty.

Although our lives are all harder for the time being, I am relieved that my kids are out of a Lyme endemic area. I had to face the music - my kids are SICK. My kids have weak immune systems, and will probably be this way for the rest of their lives. I have a hard time accepting this fact, something I work on each day.

A practical decision. Getting Sydney better is one thing, but then once she is "better", keeping her in the same place like a sitting duck was just too much for me. And for Leo too - he has shown positive results to some of the Lyme coinfections, but is basically asymptomatic at this point. He had the facial tics, but they are gone for the time being, and maintain him through Rifing, homeopathy, and an anti-Lyme herbal regiment. While I am ecstatic to get to the root of the tics, I have to keep up with the program to keep him healthy. A delicate balancing act - us moms all seem to have one.

Both kids continue to have naturally low Ig levels which is part of the issue with them keeping bacteria under control - strep, lyme, the coinfections like Mycoplasma, Babesia, and Bartonella. They are high with strep every time we test! The facial tics seem to be my barometer to illness for them. I'd prefer something else, but at least I finally know and the guessing game begins.

Some good news - Sydney had a major jump in improvement over the summer, counter to what I predicted happening with the toll and stress of moving. We continue to have her on 4 antibiotics along with homeopathy for support. We are SO RELIEVED.

As the ILADS doctors say (they are the DAN of Lyme docs), "There is no cure of these diseases. Antibiotics work to cut the population down to a point where the immune system can take over. This is where herbs and homeopathy come in for support." So that is what happened - we did a trial on herbs and that appears to take the credit for some of her chronic pain disappearing. For instance, her sore throat that she had for 10 months is now gone, courtesy of a modified Cowden protocol.

The kids are adjusting nicely to their new school. It is hard though, especially for Leo as a 5th grader. All these kids that have known each other forever. His new friend Kevin that he met over the summer hasn't played with him yet at recess. He is nice to him and says hi, but that's it for now. I know it hurts Leo, but he doesn't admit it. He keeps reaching out, playing with different kids in the "jock" group so far this week. For Sydney, it's so much easier as anyone with a girl knows. And she is younger, in 3rd grade.

I am hoping that what we'd done with Leo will not crumble putting him in a completely new setting on all levels. A temporary home, a new school, all new people. It was really the only truly hard thing to leave behind - knowing our old team was just minutes away if we needed them for an intervention or for tutoring . We had to weigh in on the cost/benefits - we now had to make a decision that had Sydney more in mind than Leo.

It's been heartbreaking seeing him miss his old BFF. They are very cute on the phone and on video chat. Validating on how deep of a friendship he can have. He was SO sad, and still is. I am sure it just takes time. I felt bad for his BFF too, his parents tell me he is having a hard time. A little displaced at recess, just walks around alone sometimes, not sure what to do. They were inseparable for 2 years. It's been great talking to Leo about friendships, and to teach him about long distance ones, and how you need to adjust for phone conversations. It's been a learning experience for us all. He wrote a lot of letters and emails, which seemed to inspire him and make him feel good.

Who knows where we'll end up or how the school year will end. My hope is that Leo will have a couple good friends to go to middle school with next year. I am anxiously awaiting his standardized testing scores from the spring - hopefully they'll be validating or be telling on what we need to work on. As his old clinical supervisor says "The testing is like a test for ASD. All it does is test for inferences." I know this isn't his strong suit, but hope he tests in the normal range like he did last year.

The husband is tolling away, his new job is great but overwhelming and beyond busy. It will be like this until next year. We also have one car, so public transportation is beginning to take a toll too.

For me, I am still doing the settling in errands and chores. On major medical duty - getting doctors set up, etc. I am a bit isolated in the apt, not in a neighborhood street yet making friends. But, I've met some really nice parents so far, just don't have that consistency yet. Time will tell.


Tawnya Barrington said...

I am so happy for you and and your family. Transitions are tough (as you already know) but eventually things will fall into place. If anybody can turn the move into a good can. The July 14 and 20th posts had me in stitches all summer! Do you think being raised on Mr.Noodle and toast with honey has nay impact?

Ashley loves Leo said...

Thanks Tawnya for your positive words. I so need them these days! Our lives have taken tiny steps backwards that hopefully will pay out to giant steps forward over time. Mr. Noodle? What is that? I'm with you on the toast with honey. I don't think I knew what a protein was until I was in high school.