DiRN's Journal

Lots of little tidbits mixed together, sounds like potpurri to me so...

Kylie's zoo trip- What a blast! We had the best time! Just to be regular people doing something that normal families do... That was so fine. I did spend more time "Kylie watching" than looking at animals. I plan to upload pictures, and change my avatar on Thursday.

Oral Aversion- That battle is ongoing for both Kylie and Christian. Kylie is drinking from a bottle better as long as Whoever is doing the feeding is calm. She eats best to "This little light of mine" with the rythm patted on her butt! Don't ask me why...I never question success.

When you see the new pictures of Kylie, you will notice that she is turning into a little butterball. Love it, love it, love it!

Christian has learned a new way of going places. It is difficult for him to learn to crawl due to trach, vent and g-tube. So, he lays on his back, hikes up his butt and uses his feet to push himself where he wants to go. He is also learning to pull himself to a standing position. Yeah Christian!!!

Ethin's infection is gone, Lindsay's doing well after her last weeks scare post heart transplant. Zachy is heading for the floor after his hemi-Fontan. Brittny went home, her appendectomy will be done in 6 to eight weeks, All of our heart kids are doing well, just keep praying.

Missy has to go back to court 7-6-09... Her someday ex has filed for full temporary custody. How he expects to get it when he has a restraining order on him for abuse and harassment....Well, that is another question that I am unable to answer. His lawyer, the Hippodude, really had me scared. Shaking in my shoes. Now lots of things have me shaking in my shoes, I do have some PTSD due to a rather horrible childhood. I sometimes wonder if it isn't better to develop PTSD early like I did. I really don't know any better...I thought everybody got so panicky, had panic attacks until I was in my mid thirties. I also had a lot of time to learn to cope with it. So yeah, I get scared, but I no longer let it stop me from doing what I want to do. But Hippodude with all of his nastiness almost scared me out of testifying. Not quite, but believe me, if a way came up that I could get out and things would have worked out well for Missy and Christian, I would have been very tempted. Now I see confirmation of something I have known for a long time. Bullies are all bluster and bragging, I am muscle and mind. I will win against the bullies. At this point their harassment of witnesses is to the point of being illegal. Yes, we are backing off on witnesses that took the point in the beginning. Me and Cassie are still there and we will probably be subpoenaed later in the case. We are the ones that are getting harassed through work. We have 3 more nurses, a social worker and a policewoman volunteering to witness for us. This battle isn't over yet, but we are growing stronger daily.

If you see a parent with a child who has an obvious handicap, please don't walk up and say "What's wrong with that child" Worse yet don't go up and say "Is she retarded?" We have had that happen all the time, it get's very old and it takes all of my self  control not to answer that retarded comment with "No...ARE YOU!" If you can find something cute or normal comment on that. In spite of the vent, Christian's smile and laugh would light up a room. If not, walk on. And when you see a kid really acting up in a store or restaurant, don't imediately think "Brat" or bad parenting. Autistic kids melt down regularly in these environments. Maybe ask, "Is there anything I can do to help?" or walk on.

These thoughts are coming out of ideas that I have held for a long time. There are a lot of variation on normal that can still contribute a lot of good things to society. Normal is not a spot on a graph, normal is a spectrum like a rainbow. And the world is a much richer place when instead of judging, you explore and learn and build bridges.

Love and blessings, Diane