Becoming a Person

One of our go-to phrases lately is “wow, she’s becoming a person!”  Obviously, Sienna has been a person her whole life, but lately she’s been seeming more like an adult, with strong opinions and a strong sense of herself.  And I hope to guide her into becoming a kind, confident and strong person.

This summer,  Sienna was adamant that she did not want to go to any camps. She wanted to stay home and “do nothing.”  No YMCA camp, no science camp, no art camp, no music lessons, nothing. I didn’t blame her,  I think the school year took a lot out of her,  having gotten sick so many times (the flu, pneumonia, 2 burst ear drums, and at least 4 colds). She was still below where we wanted her to be in weight, and we suspected that her daily medication was upsetting her tummy, so we reduced it since she’d have less interaction with other kids/ less exposure to germs.  Together we created “Camp Sienna” – we planned activities for the week each Sunday and she would do them with her au pair while I was at work: crafts,  science projects, art projects, baking, reading, gardening, and taking care of her pets  (which have grown to include 3 beta fish, 2 tadpoles and a dog).  She also did a lot of imaginative play with her stuffed puppies and little critters.  She knew exactly what she needed,  fought for it, and helped make it happen.  As a result she had a great, relaxing summer, is reading chapter books, grew two inches and added a few much needed pounds.


As the school year came near, we got all of our ducks in a row – bought all the “necessities” (new school clothes, new shoes, backpack, lunchbox) and made a doctor’s appointment for a checkup and to fill out all the paperwork needed – physical, gym exception form, immunization exception form, medication orders, extra prescriptions to keep on hand at school, etc.  We met her new teacher (who is terrific!) and did a classroom safety check together.  We were feeling pretty prepared, and the icing on the cake was that we got a call to let us know that Sienna would have her same aide again this year.  Actually, two calls.  We were so excited – Sienna’s loved her aide last year and we were excited that she is already trained in how to take care of Sienna!  We told Sienna and had a mini-celebration.  Another box checked!


But then the week before school started, her former aide let me know that she has taken a job outside of the school district.  We were panicked.  We decided not to tell Sienna until a new aide had been chosen. I barely slept for several days. In the end, we found out about the new aide the day before school started.  It turns out that two women had popped up who both wanted the job.  We told Sienna that her former aide wasn’t able to come back after all, but that there was a fight over who would get to take care of her instead.  She took it surprisingly well, and all her questions were about what exactly happened in this fight.  (We clarified that it was a friendly fight: “I can take really good care of her!”  “No, I think I can take the best care of her” “no, me!” “no, me!” and then they mutually agreed upon the winner.)  And it turns out my fear was unfounded because Sienna took to her new aide right away and has been happy as a clam in her first week at school.


As a family with an ultra-rare disease, one of the last items on the back to school checklist is to educate her classmates about F.O.P. and about the person that Sienna is beyond F.O.P.  (Fibrodysplasia Ossificans Progressiva, a condition where muscles and soft tissues progressively turn to bone, made worse by bumps and viral illnesses). We want to share how Sienna is just like them in many ways, and in how she is unique as well.  Many of you may recall preschool getting off to a rocky start when they would not let us educate her class.  But Sienna attends a terrific school where they welcome the education, and in fact before I even brought it up this year, they asked if I or the school nurse could talk to the class about F.O.P.  Since Sienna has been having such strong opinions lately, I asked her if she had a preference as to who should give the talk.  And she picked the nurse! “Because she has years of experience in my school.  You have no experience.”  Luckily her nurse is terrific, loved by the kids, and was willing to do it.  As Sienna gets older, I’m more conscious of using the talk to help her fit in with her classmates vs. stand out, so I suggested a few key bullet points including:

  • Sienna doesn’t heal as easily as everyone else, she’s “allergic to getting bumps”
  • She can do everything all of you can do except activities that could hurt her like running, monkey bars, etc.
  • She has an aide, ___, who is there to keep her safe.
  • We’d also love all of your help following the school rules to keep the class orderly and safe for everyone in the class, not just Sienna – no running, clean up toys on the floor, etc.
  • At recess she does relaxing activities like nature walks and she would welcome the opportunity to play with each of you.  She also loves animals and gardening 🙂

Apparently the talk was a success.  The kids asked insightful questions, and apparently Sienna wouldn’t stop talking about her animals.  She is often shy in groups of new people, and usually does not like to talk about herself, so this was thrilling to hear!  She truly is becoming her own person! (and an advocate for animals, if not quite yet an advocate for herself)

I hope all of your school years are off to a great start as well!




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