We are finishing a long Thanksgiving weekend in Canada, and Emily already decorated the house for Halloween. This reminded me of this beautiful picture I took four years ago while she was doing exactly the same thing: bringing the house into the orange – pumpkin mood; the official opener of our holiday season! For Emily, years are not divided in months or seasons; years are divided in celebrations: Thanksgiving & Halloween (Oct), her birthday (Nov), Xmas and New year’s (Dec – Jan), papo’s birthday & Valentines (Feb), Easter (Mar-Apr), summer & mama’s birthday (Jul), and finally back to school & Sammy’s birthday (Sep).
Halloween is coming soon an Emily cannot stop talking about her costume: “Mama! maybe we should get something new from Monster High or Ever After High for school, and the old vampire queen for the night. This year, October 31st will be on a Saturday, so we can think about having a little party in the afternoon, before going outside to trick or treat that night”. She just goes on and on, and I feel a little bit guilty for not paying full attention; but I have so many things in my head to think about: work, bills, money, therapies, haircuts, meltdowns, dentist, assessments of the assessment!, appointments, IBI, ISP, school, etc.
Wow! It feels like I should get and external hard brain to back up the current one…
There was a time when she owned the world and had mama and papo only for her, until the arrival of her little brother that she decided to call Sammy since the first day. It doesn’t matter his official name; for Emily, his little brother was going to be “Sammy” and they were going to have the time of their lives playing and exploring the world in the backyard; just like Stella did with her little brother Sam on the TV show “Stella and Sam”.
I promised to Emily it was going to be fun! But I couldn’t keep my promise for long…
Related: I Wish I have my own Mama
I spent Sammy’s first year at home and could notice early that something was not going completely OK with his development. I started to worry more than usual, and soon phone calls, doctors’ appointments, endless assessments, physiotherapy, OT, ST, etc., occupied most of our time and she had to learn to deal with that. We all had to learn to deal with that colorful guest that came one day to stay with us forever; Mr. Autism.
I am not saying that we forgot about Emily, but I have to recognize that this visit changed her world dramatically. I have to acknowledge her struggles, and admit that maybe we are doing many things wrong, but what else we can do? we are just living this in a survival mode. The autism diagnosis was the explanation to Sammy’s behaviour, but there was no manual for parents and siblings included! The journey that we started with Sammy is something for what we weren’t prepared. And, as any other autism parents, we are doing the best in our hands juggling in this colorful spectrum.
I don’t need a holiday to be thankful, but Emily has been yelling for my attention lately that I need to openly honour her and thank her for being such an amazing person.
Tonight, when I kissed her goodnight, I felt so thankful for having her in my life, and having her when I need it the most. I am grateful for her independence and responsibility; but the most important, I feel profoundly proud because she is nurturing a kind heart and becoming a good person. Maybe these years feel difficult for her, and there is not a lot of fun in therapies and doctor’s appointments; but I’m sure one day, she will also remember these days with joy, because she is participating in every milestone, and she is very important for Sammy’s development and happiness.
Having a sibling with special needs is difficult, but it’s also an asset. This challenging experience is showing Emily a tougher but at the same time kinder version of the world, as well as preparing her for the future. Sharing Sammy’s life in the spectrum is teaching her valuable life lessons, that I am sure, one day, she will be thankful for:
- True love
- To appreciate the difference and the real value in each person
- To be patient and persistent
- To enjoy life an appreciate the beauty of the simple life
- To celebrate a word, a kiss, a hug
- To share with joy; particularly from what she has, not what she doesn’t want anymore
- To save money and think about the future
- To appreciate family
- To believe and care for people
- To be part of the solution
- To be happy, follow her dreams and many more!
What are you thankful for?