I think sometimes we forget.
I know I do.
I just go about my business of my days.
Focused on the things that need done as well as trying to be grateful for each gift of the day (and yes! some days those gifts require a bit of work to find).
But overall I do forget.
What is that I forget?
I forget that my life with my Elizabeth, my daughter with special needs, is so very different than others who do not have our challenges.
I know this sounds kind of funny being as my family and I live each day doing the work needed for Elizabeth to succeed in life. Doing the teaching that helps her learn new things that will help her succeed in life. Talking about feelings and emotions as she processes things…to help her succeed in life. So you would figure that I would be aware of this vast difference.
But…..
When you do things for so long, they become habits. So when she was young and I had to arrange shopping trips to coincide with Elizabeth’s “good times of her day” over and over, I didn’t think about it after a while. It became habit.
The same goes for where we sit in church. It is a habit to sit in the back near the aisle. Why? To have an “out” if her sensory processing disorder ( SPD) made her anxiety escalate and she had to leave. Now? She is so much better but guess where we still sit? Yep, it’s in the back near an aisle.
When we plan vacations or day trips, it is always with an eye on the thoughts of “how will Elizabeth like this/do here/or tolerate this?”. Again, these things are done so many times automatically that now they are actually done completely without thinking.
They are simply how we have been trained to look at and work in the world with our daughter with special needs.
Why? Because we wanted her to be in the world, living and growing and getting to experience new things…BUT her way.
So as we/I just did these things automatically, I guess I forget just how uniquely we live. I had this brought to my attention by a beautiful friend who I have not talked to in a while, but once we say “hello” it is like we talked the day before.
She has a daughter who has the same special needs that Elizabeth does, but her daughter is younger. She is an amazing mom and gives so much to her daughter.
As we talked yesterday, initially about the subject that I called about but eventually about our daughters, their lives and new goals. It was later in the call that we were both saying how much we see that living the lives we do, with therapies, work and stress, means we do not always have that much in common with other mothers, who do not face what we face each day. For us, it is hard to sometimes relate to the little annoyances of life, when you need your daughter to remember to turn her shirt around so the tag is in the back and how to put the lid on the toothpaste so it does squirt all the way down the sink. Or to plan a time for play dates with others when you are so certain that they simply might not “get” how your child works even if you explain it.
So we talked a lot more about these feelings that, in my opinion, are simply the result of the natural course life took us on.
But the beautiful thing of the call was that simply talking to someone who “gets it” is amazing.
It is being understood without having to explain.
It is being reassured without having ask.
It is support.
We all need it.
Because the journeys we are on can be hard, complex and all consuming. We know they are done for the right reasons…the best reasons actually, to help our children. But they are complex journeys.
But feeling that support was wonderful.
So if nothing else in our worlds, we should remember to support each other on these journeys. Take the time to offer a positive thought or comment. Take the time to listen and let others listen to you.
Support.
We need to be there for each other no matter how different the journey.
I wish everyone a peaceful week.
Michele Gianetti author of
I Believe In You: A Mother and Daughter’s Special Journey
Elizabeth Believes In Herself: The Special Journey Continues
Special Needs Essentials Blog 