When I am looking at the day to day now, there doesn’t seem to be much to report on, but that would be a fallacy. Is she making huge jumps like she did early on? I can’t say that she is. What I AM seeing is slow and steady improvements in so many aspects of our lives.
Her diarrhea, which was so massive in the beginning, is completely under control now and seems a lifetime ago. Her mood changes are less frequent, and severe behavior doesn’t last as long as it used to, though it can still get pretty dicey. She continues to verbalize more and more which is encouraging . One of the most gratifying things is how calm she is during doctor visits now, even if they are doing invasive testing she listens, does slow breathing and doesn’t scream. I am so grateful for this as office rooms used to terrify her.
Her gross motor skills continue to improve, she’s learning how to kick a ball and had SO much fun with the neighbor boy kicking the ball back and forth (he did get more kicks in but he tried hard to get it to her and was a fantastic cheerleader!) It kinda snuck up on me, but she’s eaten her whole breakfast by HERSELF for the last two weeks using utensils. Incredible. Her balance just blows my mind and she’s taken to walking more, especially over the last couple of weeks.
Just as she is making strides, I am slowly, slowly entering the “normal” world- taking time to relearn who I am besides a caregiver. I have time now to get my nails done once in a while. I got a perm so I could grow out my hair (women will understand ) I don’t need to keep it short because she isn’t pulling it anymore. I’ve set aside a time each week to write; I haven’t written anything yet, but I pulled out old stories to edit and go from there.
Two things that are standing out to me right now are that yesterday I was able to go see my grandson play his first volleyball game and with all that noise, the echoes, the whistles, the squeeeeaaaakkkyyy sneakers, she held it together for the whole match. What a win for both of us. The other thing is I’ve committed to do the 39 Mile Walk Challenge for the Carter Center in honor of Jimmy Carter. This is no easy task for me, it takes about 2 hours for me and Katelin to get to 3 miles. However, at my slow pace, it is easy to find things that make me happy on our walk. One of my favorite things is the little picnic we have about 2 miles in. I feel like I’m contributing to the memory of a good man and Katelin is basking in the sunshine.
I am SO content with this outcome so far. Dame Brimble, Neuren, and Acadia have all given Katelin and I a new lease on life and I hope to take advantage of every moment.