One year anniversary as a "tubie" parent

I just noticed the date this morning. It's almost July 4th and I feel nothing but gratitude that we are not at the ER, that we are not worried about Grant's life, and it's just better than it was a year ago.

I know I can't say never, but I am fairly convinced that there will not be as painful of an experience as this time was last summer. I won't strip back the memories right now as they still lay raw in my heart. I will say to you instead that everything is infinitely better than someone that has gone on hunger strike for months and is withering away right before your eyes.

This June has been nothing like last June, but appears it can't be easy either. Like I told you 2 weeks ago, I felt panicked as I lost significant hours with our PCA. I flustered at the thought of trying to do all of the things a person needs to do AND take care of Grant. But, I got over the hump of that challenging first week home and have been able to find some peace.

As of lately, there have been many good and exciting things and then there are also been the ongoing challenges.

As you probably know - we still wait. I haven't heard from KKI for awhile. I send updates bi-weekly and I haven't heard anything back. All signs point to that this summer, Grant will be home with me. And we try to enjoy each other's company. He loves me more than ever. I can feel it. He doesn't attack me. He wants to spend every minute with me, even when dad is home!! This is shocking. Scott and I tease each other playfully about which parent he prefers. Most of the time, we chant "Daddy #1", but I am fairly certain I have currently passed him, "Mommy #1"!

Grant remains intensely self-injurious. He still will not wear his gloves and a helmet wouldn't protect his chin. It's summer. These items are too hot to wear. He won't change to shorts and will not wear shoes, ever. When you are in charge of Grant, you are forced to hold his hands. He likes this, which is interesting, but it's also sweaty and very impractical. It's hard to have any control over your own body. Meaning, it's like having a baby. You don't get to put a baby down much and Grant's constant need for touch and attn is very similar.

I can't drive anywhere alone with him. This is impractical for all of the obvious reasons. Simple trips to a gas station or to visit a family member are unpredictable and concerning. I have just adjusted and do not go anywhere alone. Yesterday we took a walk down the street (a new thing we have been working on and he seems to love), but out of no where he laid down. He was calm-ish as he dug his fingers into the earth. Dirt all over his face and up his arms. He pulled the weeds. It wasn't my property, but he wasn't doing anything that should bother anyone. He hid his face. I stood there for a long time waiting for him to pop up. But, he wasn't. It was hot and humid. I was dressed too warmly for this and I had left my phone at home. Internally I was kicking myself for all of the above. Neighbors showed mild and limited concern. I assured them that we were just laying there because he was. I don't know how much time passed before I realized he wasn't going to move. I sat next to him and acted like it was ok. I stroked his back and enjoyed his calm self. He was in a mood, but I wasn't sure where it was headed. Luckily, Scott was on his way home and we were able to get him into the car and get home. I am fairly certain I would have not been able to do that independently.

When we pulled into our own drive way, he was quite content. He wanted to run around the yard and up and down the driveway. This confirmed that I think he was having a mild protest. I think he was waiting for someone to come home. He had been anxious about our visitors. I was thankful that laying on the sidewalk was the extent of his feelings because earlier he had been kicking and lashing out at his PCA.

And that is the thing, from one moment to the next, it is very, very hard to know what you will get. Joy turns to sorrow very quickly in my home. Feelings are big all of the time. Whether they are at one of the spectrum or the other. I tell myself to not go on the "emotional rollercoaster" with him, but this will always be easier said than done.