Maybe I'll get in the groove of writing as the month is ending. :) So, onward to the final part of this 3 part thought... Back in the beginning of April, when I started writing about Ally's experience with modeling and how it intertwined with Vicki, something kind of cool happened on the first Saturday of April. Of course, as everyone is well aware, we are in the middle of a very difficult health crisis in the world, and we are doing our part being safe and quarantining. Like I kind of alluded to before, a lot of how our family life is structured is very different from other people's families. And in that regard, yes, there are still a lot of changes we have made with the quarantine, but, unfortunately, a lot of the time, we tend to self-quarantine our lives on our own terms. Over the years, we've recognized situations that are very difficult for Vicki and subsequently, our family, and we try to balance what we do to maximize everyone's comfort and enjoyment. Every family unit does that, right? Anyway, with Ally's modeling over the past year, we have definitely stepped out of our comfort zone. But always still tried to balance how we approached events to maximize everyone's comfort and enjoyment. And we always have to plan for the unexpected. A seizure, a behavior, a toileting accident, difficulty and inability to transition from one place to another. So for each event Ally has had, we've thought long and hard about how best to handle the day.
Some days that looks like a long drive and a movie in the van for Vicki, Daddy, and her aide while I take Ally into a rehearsal. Then we would all go out to dinner, which of course everyone loves, and drive home. Other times we've done hotel stays. And still other days it's just too difficult and we have an aide come to the house to stay with Vicki for the day, after I get her up and ready. Then Vicki gets to relax on the couch with Skipper and watch Tasty food videos on her tablet. The last 6 months have been extremely busy on the weekend (pre-quarantine). There always seemed to be a rehearsal, a fashion show, a photo shoot, a model call... And, it's definitely been a challenge to make sure it runs as smoothly as possible. One of the things Vicki has always loved and feels comforted by is looking at her visual schedule when she wakes up in the morning, and then when she comes downstairs she looks at the wall calendar that I write pretty much our whole lives on. I've always color-coded activities. Blue for Joe. Red for Vicki. Green for Ally. And there has been a lot of green writing lately. Vicki looks and takes in a lot more than I ever give her credit for. I've said before how she has such an amazing memory, especially with dates and things we have done on those dates in years past.
Sheesh. I go on and on, don't I? Anyway, with the quarantine, I've obviously crossed out a lot of previously scheduled activities, and the next few months are looking pretty bare and not too colorful. Well, on that particular Saturday in the beginning of April, she must have been looking at the wall calendar the night before, and when she woke up the first thing she said was "Fashion Show" and then "Ally". She was very frustrated that there wasn't any car on her schedule for the day or a picture of Ally (what I put on when Ally has an event). Also, a few weeks before that I had gotten Vicki 2 dresses and a new pair of shoes that she had tried on at home. I had been planning on getting tickets to a ball here in our town. I had seen it advertised in years past and was looking forward to the day when Vicki was old enough, and in a place that I thought she might like it. This was the year I was going to do it. With timing, everything seemed right. Ally has been taking voice lessons since the fall, and it was her voice teacher that was the founder of this ball for young adults with special needs. Ally had signed up to volunteer for the whole day. We had an aide that was available and excited to attend with us. And then I found those 2 dresses. She looked so beautiful in both. Vicki would never go to a high school prom, and I thought this would be something just for her. A way for her to dress up like Ally does, a way to experience something unique. I'm telling you all of this because of course, with the quarantine, the event had to be canceled.
So that Saturday, Vicki was asking for "Fashion Show" and she was very emphatic that day that she wear one of her beautiful black dresses. I kept telling her that we were not going anywhere for a fashion show (it's been very difficult to explain why we aren't getting in the 'red van car' like we usually did on the weekends to go for a drive.) But I did tell her that she could have a fashion show at home with Ally. Some of our flowers were starting to bloom, and I thought, why not? Let's put on a fancy dress and celebrate the day. The only time Vicki will allow make-up is on a very special day (when she used to do dance recitals, if there was a special event we were all going to, seeing Santa... those are all very special days in her book!) And that day, because she put on her fancy black dress, she let Ally do her make-up. It's so rare that this happens, but I love it so much. Ally is so gentle and sweet with Vicki. That day marked the first time ever that Vicki had a 'full face' put on. Foundation with the little spongy thing, bronzer, highlighter, the whole deal. Because Vicki tends to have specific routines (ie... she only ever allows blue eyeshadow and red lips, because that's what they were required to wear for dance recitals years ago). Well, this day, she allowed Ally to do some different colors. Ally was thrilled. Vicki did so well. Ally let Vicki try everything, touch everything, she explained everything she was doing to Vicki. Sometimes it can be a daunting task to do something different with Vicki. She has some resistance, which can be vocal or physical. But we made it through the whole process with minimal issues. And yes, there were tears in my eyes, through pretty much the whole process. It is not easy for Ally to connect with Vicki in a 'typical' sisterly way. Vicki doesn't allow much interaction. It's always been tough. But that day, the shared interest in make-up, not playing out how you would typically envision with sisters... their roles are reversed, but it was something that they enjoyed together. The younger sister leads, the older sister follows. When Ally was drawing on Vicki's eyebrows, I lost it. As most of you know, Vicki also has trichotillomania. She has significant anxiety and OCD and gosh, I think it's been 3 years now?? 3 years. Of me drawing on eyebrows for Vicki every morning. She has very minimal lashes (just some on the lower), so we couldn't do mascara, and putting lashes on is still way above our comfort level. But just seeing Ally lovingly drawing on her eyebrows, being so gentle and encouraging... I have tears even now as I type this.
So, that pretty much sums up the day. Vicki looked absolutely beautiful. The girls had a moment together that I will never forget. We did a "Fashion Show" for Daddy and Joe and Skipper. And we had a photo shoot outside with the flowers. Although this was not what Vicki asked for, per say, we made some memories. Vicki didn't love the rest of the day. She knew that what we did wasn't what she wanted. She wanted to get in the car, go for a drive, dress up and see Ally walk in a fashion show. We made the best with what we could do. She got to wear her beautiful dress, maybe not for the ball I was envisioning this year, but there is always another day, another time.
Ally's modeling may have taken us all out of our comfort zone, but it has given us all so much as well. It has forced us to create and be present and put all of us out there. If you remember last year, I wrote about the first fashion show Ally did, and how the organizers were so wonderful to us to ensure a successful day for Vicki...and there are photographers who have gone out of their way to include Vicki in photo sessions with Ally. We had one photographer in particular, who had known Vicki would be in the car with Dad, waiting for Ally doing her shoot on a beach. She specifically asked about Vicki and what she liked, didn't like, how she interacted etc... And that day the photographer wanted to take some pictures of Ally and Vicki together. Yes, there were difficulties, but there were also moments that I will never forget. Funny, how currently I am now humming the theme song to The Facts of Life, (remember that show??)
"You take the good, you take the bad, you take them both and there you have the facts of life, the facts of life...."
So, in conclusion, :) I think we are all ready to start putting colored markers on our calendar again. I believe with my whole heart that Vicki loves the events in the green marker in her own way. And I will forever be grateful that Ally can share this part of her life with her sister. It may look a little different than I imagined years ago when I had a 3-year-old and a newborn baby girl... but it makes the heart feel just as full. Love you all. Thanks for reading. xoxo
PS... I will most definitely attach a few pictures to this facebook post for you to enjoy - that deal specifically with this post. And, if you want to follow Ally on her modeling journey, I know she would love the support... @ally.rosette (on instagram).
Next blog post is one I have been dreading writing for some time... stay tuned.
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