Friends With FOP

We did it!  We made it through the first day of school and kindergarten for Erin.  Erin is fortunate to have a great group of teachers and specialists that put together a safety plan in order for her to participate in all-day kindergarten. Alan and I had two meetings with the school to make preparations for this school year.  From bathroom issues, types of seating in the classroom/cafeteria/assemblies, playground safety, and stairs…we covered everything in those two meetings.  My anxiety was high throughout the preparation period and especially the day before school went back into session; however the first day of school was anti-climatic for me at least.

Erin started off the school year with a great night’s sleep, a good breakfast, and a cute outfit.  We gathered the kids outside for a quick picture.  Then Alan shuffled the kids off to school and that was it.  Our day at home was fairly uneventful.  The daycare routine went on as usual and surprisingly the kids  were quite content and quiet throughout the day.  Then 3:00 rolled around and everyone started coming home.

I was so anxious to hear all about her day but she gave me a quick “it was fine” comment and ran out to play in the backyard.  In my mind Erin was to come home, give me a great big hug and kiss, and talk non-stop about how exciting the day was.  But no.  Instead I had to ask her twenty questions just to get the gist of her day.  Erin was excited to share that they went to the library and picked out a book called “Pinkalicious” (very cute book for girls btw).    Later  Erin did tell me she wasn’t too pleased with recess.  She said there were too many kids for her to do anything.  I was sad to hear her say that but was glad to know that she understands her own limitations.

Brennan, on the other hand, did not have a good day.  All because a group of kids in his class saw Erin’s halo helmet.  They asked Brennan “what was wrong with her.”  Brennan, being the protective brother who he is, explained that she has FOP which causes her muscles to turn into bone.  Well, the kids heard the letter “P” and that just started a round of potty humor.  Of course Brennan didn’t like that the kids were laughing at the letter “P” because that meant they were laughing at his sister.  I understand why Brennan got mad.  Part of wanting to protect Erin is from knowing kids can be cruel.  No one wants their child teased or bullied.  Then to be laughed at because of something they can’t control.  Within the last few weeks the “momma bear” in me had to be subdued because of comments from other older kids.  I understand that kids “don’t get it.”  All they see is a child with a pink helmet on.  Adults use their life experiences to be tactful when approaching us and asking questions.  I am totally okay with answering questions and talking about FOP.  But to stand and stare, snicker, or make snide comments…  Well, I definitely have horns under my curly, box-red colored hair.

Currently we are working on day two of school.  Another good night’s sleep, a sort-of good breakfast (is Pop Tarts okay?), and another cute outfit and she was off for another adventure in kindergarten.

Tonight is Erin’s “Wish Party” with Make A Wish Foundation.  Make A Wish has teamed up with Maggiano’s Little Italy restaurant in Bellevue, WA to give Erin a fantastic dinner to celebrate her upcoming wish.  I can’t wait to share the story along with some pictures.