It has been five months since I've sat down to write a blog post. I have thought about it but in truth, not much has changed for us except that both me and my husband are vaccinated. Long story as to why RJC is not yet vaccinated but we do hope we will figure out all of the moving pieces needed to make it happen. Not sure how long that will be. Since she is not vaccinated we are still cautious about being in public - which is why our lives have not changed much. We continue to take walks, rides, have driveway visits and do activities in our home. She has really enjoyed receiving mail, doing arts and crafts, and baking. When her sister visits and we go out she is sooo happy! I think she gets tired of us at this point as we truly are attached at the hip. We are very comfortable outdoors though we still social distance and avoid large crowds.
It is what it is.
On another subject, I've been thinking how odd it is that G-d willing, in just a few days, RJC is about to be the same age as I was when I got married. I cannot tell you how weird that it is to me. At her age I was newly married and getting used to living with my husband just across the border in a different state, working at an intense full time job that I loved, taking care of a crazy stray cat, hanging out with our friends, hoping to be a mom, and getting my Masters degree. Right after we were married my husband had to travel out of state for work every two weeks for two weeks at at time (though he often flew home on the middle weekend) so it was an odd period of adjustment but a very interesting and exciting time in my life.
My gal's life in so different from my life experience. And yes, I know that no two lives are the same but the fact is that her autism limits many of her life experiences. I am not complaining about it as I thank G-d every day she is happy and healthy. But from my mom perspective it sometimes hits hard that even with the major strides she has made and the obstacles she has overcome, her life is complicated and yes, limited in many ways. Usually those moments hit hardest on special occasions - like her birthday which is just days away.
A brief update:
She is still a huge Barney the Dinosaur fan and she knows how to pull up YouTube videos of the old shows. She watches in various languages including Hebrew and Spanish and we sometimes will hear her use a word in Hebrew or Spanish properly. One day she looked out at the rain, turned to me and said, "Look, it's geshem!" Her language is still very concrete with incredibly limited comprehension about anything abstract and her grammar is her own version of what a sentence should be but she can often still get her point across. She enjoys our walks and long rides in the car and will call out the things she sees. She loves music (especially toddler tunes and the Beach Boys and I'd say this year she really took a liking to Neil Diamond and The Beatles), baking with her sister, folding laundry and loading, starting, and emptying the dishwasher. She tends to be loud, usually when frustrated by the internet and it can be jarring to those of us in the house with her. She has definitely been frustrated by small things that have lead to huge tantrums. I often wonder what she thinks of her life without the Day Program she was attending, without the farm she loved to go to, without Special Olympics, without the many day trips we would take to the zoo, the Aquarium, a favorite park she has, miniature golf, bowling, restaurants she has enjoyed etc. We continue to simply say "it's closed" when she asks about those places, though recently she called me out on that as we drove by a place I told her was closed and she responded "It's open" quite adamantly - I mean, she noticed the cars and the people! Yikes. So I said, "it's closed for RJC" and that will be my new response. One day she specifically requested to "call daddy" (who was at work) so of course I obliged because I was totally curious about what she wanted). She wanted to verify that she could choose a specific dinner meal that weekend. Apparently mom's word was not good enough. Sheesh.
But mostly she is happy and healthy and I am grateful that she is oblivious to the existence of Covid as well as the complicated political environment (both things which personally cause me anxiety).
This week she is going to enter the last year of her 20s. We have always made a conscious decision to meet her where she is developmentally, not chronologically. So we will celebrate in a way that makes her happy while keeping her safe. We will be home and it happens it will be the start of Shabbos - the Jewish Sabbath - which she loves. We will light candles together, give her a blessing, and have one of her favorite meals - stuffed shells (no sauce on hers) and garlic bread with cake and ice cream for dessert. During Covid we have made it a routine on Saturday nights to bring in dinner and her favorite choice is cheese pizza and a special cupcake of her choice so that will be the plan. Sunday we hope to visit her grandma and grandpa and celebrate with them because they are a very big part of her life.
Basically it will be a birthday weekend of celebrating our gal. And while she will only consider Friday as her actual birthday celebration (because the abstract concept of a birthday weekend makes zero sense) her dad and I will receive joy in celebrating each day in her honor.
If you are so moved to do so, please feel free to do some act of kindness in her honor. We always appreciate the kindness that comes her way and it would be so nice to know that perhaps on her special day, kindness would be spread in her name. Sending light and well wishes to all!
