Friday, January 25, 2019

Amazing Amelia is Officially a Teenager

Happy Birthday Amelia! Yesterday Amelia turned 13.  Whew, that was fast!!!  Amelia may not be the typical teenager but she is excellent at ignoring me, eye rolling and yelling at everyone when we interrrupt her TV watching.  She loves playing around on the IPad, she is part of an incredible weekly adaptive dance troup and as is every teenagers right, she has been less cooperative in almost everything we try to do with her (walking, sitting, standing, respiratory therapy, etc). Sometimes we chalk it up to her being a young woman.  Other times it seems more neurological and her lack of ability to coordinate her movements.  

Amelia is a wonder.  She has taught us so much about enjoying life and overcoming struggles.  With Amelia we must all live moment to moment.  Day by day.  Nothing is taken for granted because everything about Amelia’s life can change instantly.  Her health, her nursng care, her therapists, her body and her needs being met.  The world is different for her in that her communication with us has not developed easily.  We know when she’s happy and sad by her sounds.  With all the programs and devices out there, Amelia hasn’t been terribly motivated to speak to to us and therefore, that piece is still a challenge for us.  

However, all that said....Amelia is having her Bat Mitzvah in June! We are beyond excited!!!  We’ve been working closely with one of Amelia’s former teachers.  She is absolutely committed to helping us make this happen.  Actually, we are surrounded by an incredible village who are paving the road with us for this extraordinary event.  From her teacher asking OT’s and Speech therapists for their input (and them coming up with stellar ideas), to our temple who just updated the Bimah in the sanctuary to be wheelchair accessible and the multiple meetings we’ve had with our Rabbi and Cantor to tailor the service exactly to Amelia to set her up for wonderful success, to all our family — especially her little sister, Lucy and my nieces and nephews who have stepped up to say they want to be her “voice” for her Bat Mitzvah.  So many moving parts here to make her day a spectacular success.  

When your child is born with special needs, you learn to let go of milestones and expectations.  It’s the only way to survive as a parent.  Well, I now have a lovely vision of Amelia’s (near) future.  A beautiful, sunny day in June where Amelia will be surrounded by the love of her village and participate in the tradition of becoming a Bat Mitzvah.  It is rite of passage for every young Jewish person.  I am so grateful that Amelia will have the opportunity to stand before us and create that milestone for herself.