Offline

If you are wondering why I haven't posted as much lately - I have been in my hole.

In a recent post I stated how I am having a real hard time of it right now. A relative who I believe has not read a lot of my blog read this post and my rant about not getting a lot of support, particularly familial, and sent me an email. I read one paragraph into the email and realized that they were upset with me and were about to chew me out. I had a break down in my house that moment. I sat in the corner crying as the two kids ran around the house, Sophia asking me what was wrong. I didn't read the message any further. Apparently, this person truly did not understand the edge I was standing on. Steve was at work, and unreachable. I called this person's house and got their spouse. I basically told the spouse I was losing it and that I didn't think I could handle reading the message.

I have a feeling that this person took my generalized post and concentrated it on their relationship with us. I was complaining about many people, and not just this one. I want everyone out their to realize that - yeah - maybe I was complaining about you, but no one person, or family, were the source of my complaints. I still stand by my post, and my disappointment and hurt. I will go on to say, that perhaps I have concentrated a little too much on my family, because I was raised and always felt that they would be there for me, above anyone else. I had a huge loyalty and sense of pride as to how my family was this way.

I realize now, that I am the one who needs a paradigm shift, not necessarily them. If we cannot seek and find the support we need from them, then we will get it from some of the other loved ones in our lives - terrific friends, old and new. I don't want to demean my family, and certainly they don't get where we are at if they decide that showing support includes making sure we are put in our place. This doesn't make the situation better at all for anyone. I certainly never want to hurt anyone else, and so perhaps it is just best to shrug this off, and agree to disagree on what constitutes support.

I am sorry that these posts are not more about Zach's progress - but it has been limited, and perhaps, our frustration with that has made my posts turn into more rants. I am angry. Not at Zach's condition, as much as those who blundered in regards to his diagnosis, care and treatment. Add that to the other things life is throwing at us.

His EEG as an anomaly on it - his neurologist said it is normal, two other neurologists who read it said that it was suspicious. What does this mean? What do we do?

Our sitter announced on Wednesday that she can only work 1 day (and we suspect will likely leave us soon) - so now I have to find a trustworthy sitter that can deal with two special needs kids and a crazy schedule at our home. It took me several months to find her! Anybody gotta name?

My Mom can barely walk and has been told she needs a hip replacement. However, her health condition doesn't make her a candidate for surgery.

Zach needs to go in for the following tests: Lyme, Fragile X, genetic testing, allergy testing - do you know how many vials of blood they will need to take from him - and I cannot explain to him, because he has no receptive language meaning he has no idea what we are talking about.

We are still figuring out Sophia and what to do for her. We are getting conflicting advice from various people. Her meeting for the school district comes in a few weeks. She will likely continue services because her OT has been really fighting for her.

Remember the autoimmune virus I contracted late last summer? I realized a few days ago - it is still going. Gotta ask the doctor why. Could this be the reason for the mega hair loss? The various rash/skin patches all over my body? How tired I am? The fever I run from time to time?

Layoffs anticipated at work. $50,000 costs anticipated for Zach next year without that insurance reform. Messing up at work makes me a likely candidate, don't you think?

Looking for one more therapist to work with Zach. Send me resumes!

I write what is on my mind at the moment. This is a log of our families experience trying to help Zach, and I will not censor it, may it be offensive or not. If you find you cannot bear to read my words, I kindly ask that you do not read.