This past week was very low key. Sarah got sick Tuesday night and it was only yesterday that she started eating almost normally again. She was up and about most days but not with her usual vigor. There were still some good play sessions but we also spent a lot of time on the couch reading or watching Dora or Donald Duck. I have always loved Donald, in part because of his lack of perfection and his temper. I am trying to remember this when Sarah is in a screamy mode or when I have more of a temper.
Notably, Sarah has a renewed interest in the early math elephant game that involves different mats for sorting the elephants in different ways. She spent 45 minutes with G. playing with the elephants in all sorts of ways. She spent time playing with the elephants with Amy and me, joining an activity already in progress. She spent time on her own sorting the elephants on the color sorting mat. So many things can seem so natural as to be of no consequence when we finally get there, but it is really huge that Sarah continues to learn and grow over time, returning to old toys with new focus and understanding. Perhaps the miracle is that all of us continue to learn, grow, and change as we do.
Twelve years ago today Carl and I married each other.
Unfortunately, Carl has now gotten whatever Sarah had so our anniversary plans have changed. I had planned a few meals out and we will reschedule those. We were going to be out for breakfast this morning but instead I am in my office, Carl is resting, and one of my fabulous sitters is with the girls.
In response to my last update, a friend asked if I ever wondered what having Sarah brought into my life that I wouldn’t have had otherwise. I know I have thought about this in the past, but I appreciate the suggestion to think about it again….I have been thinking a lot in general about my life and Sarah because sometimes I resent and resist it so much and I envy my friends with “normal” kids. Then I wonder about the point of life and having kids. I think when I resist my situation it is because I am thinking I’m not getting what I wanted from having kids. But I am. I have a loving connection with two amazing girls. I get to snuggle with them and read to them and watch short movies with them. I get to eat pizza with them, as long as it is non-traditional pizza that I make myself. We get to go on adventures, do art projects, and play together. Even with Sarah’s eating situation, we still get to enjoy food together. I get to go on vacation with them. I get to go to work and go on dates with Carl. Certainly there are some things I don’t get to do, yet, and that are harder or different than more “neurotypical” situations. But overall, is there really something I am missing? I don’t think so.
Having Sarah as she is has meant stretching myself in more ways than I knew possible. I have become a much better cook, and a much more creative cook. I have reconnected with the Option Institute. I have become connected with amazing people who give their love and creativity so generously to my family that I get teary whenever I think of it. I have gotten much better at asking for and receiving help. I write. My whole family eats more healthily than we otherwise would have. We found our current house, which we love, in part because we wanted a space that would work for a Sarah-Rise room. We have Amy. If Sarah had been “typical” then we probably would have had a second child sooner and then that might not have been Amy. I have a much closer connection to Sonia than I might otherwise have had. It is amazing that she and I can have so many coexisting relationships and still like each other! I have gotten to see and fully appreciate amazing support from friends and family. Not all families with kids with special needs have such support. Not all families in general have such support. Do I wish things were easier and could become more “typical” tomorrow? Sure. But perhaps then I wouldn’t be so aware of the love with which I am surrounded. Perhaps I wouldn’t be so aware of how deeply incredible some people are. I certainly wouldn’t want to give up knowing the people I now know. If things were easier and “typical” from the start, I might not have appreciated the ease that is Amy. Certainly parenting is an incredible challenge and source of growth for anyone on the journey and I have hugely challenging moments with Amy, but there are some moments that are so easy as to be laughable because of the contrast. And sometimes Sarah is the easier one. It is all relative moment to moment. I don’t think I could design a better life situation than this one for challenging my foundations of belief and attitude and giving me the opportunity to really be who I dream of being. (Remind me of this in a few hours when I am feeling like a tub with no water who wants desperately to eat a pound of chocolate and not have screaming children asking me for things.)
I often notice myself thinking that “once things get back to normal then…” in terms of our routines or schedule. Maybe there is no such thing. There is a slight routine to which we gravitate but there are always variations and changes. Always.
I have added some post-its and one of them is “what is the next tiny step towards your dream life?” This one almost always helps me shift instantly into a little bit more joy because it reminds me that I have the freedom to change many things. One tiny change is to make more time to read books just for me. I recently picked up the novel I started months ago and I felt as if I were a dying plant suddenly receiving water. I want to take note of those things that are water for me and include them in my daily life. There seems to be such a focus in society on being productive but what if our most important task of productivity is to take excellent care of our selves? Of our minds, bodies, and souls? What one will do with one’s time is irrelevant when one gets sick and the only task is to get well. What if maintaining wellness for myself and my family was my first goal and every thing else was secondary?
I hope you are all well and receiving the water on which you thrive.
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