I have a close friend who lives just down the street.
She sees more of our day to day stuff than any other person outside my husband and me.
She brings wine or food or both.
She doesn’t flinch when I have to leave her sitting on the couch for the 14th time to go help my son in the bathroom, or when the meltdown starts and all the chaos begins.
She asks, all the time, “What can I do to help?”
Last week, we were talking about my youngest son and all the things we are trying right now to help his health stabilize.
She looked at me and said, “Shawna, your life has been hard every, single day for more than a year now. Every single day.”
I started to cry – not because I was sad. I wasn’t sad.
I started to cry because I felt seen.
Yes, every single day of my life has been hard for more than a year now.
Yesterday, I went in for a parent conference with my son’s therapist.
We sat down and she began to ask me questions about him at home, our family dynamic, the effects of all of this.
Honestly, I was a little bitter.
Having to explain, all the things, over and over to various professionals can be exhausting at best, and even more so, discouraging.
As I plowed through some of the most intimate and difficult experiences of my life and my son’s short life, I fought the urge to shut down.
She needs to know. It’s how she will help him. She needs to know.
When I was about through, she looked at me and said, “I’m glad you shared all this. I recognize that I am only seeing a point in time. You and your son have been dealing with this all along. And you deal with it every day outside these walls. This isn’t reality in here. What you’re doing is the reality. I need to know the real stuff so that I can best help him.”
Again, I started to cry.
Again, I felt seen.
What I Wish You Could See As A Mom Of Children With Special Needs
There is so much that no one really sees, not just in my family, but in all of ours.
Unfortunately, that minute sliver of life is the one that everyone knows and responds to. It’s the one that informs opinions and judgments, treatment plans and prescriptions.
And that tiny slice of all that we are? It is simply not enough.
Not enough to inform what can be life or death decisions. Not enough to really support and love a family in crisis. Not enough to really, really make a struggling mom feel seen.
Here is what I wish everyone knew – what I wish you could see.
I wish you could see my son with an animal – any animal. You’d be astounded at his heart and his gentleness.
I wish you could see all the years, day after day after day, that he has worked so hard to learn to read the few words he can.
I wish you could see his older brother, trying to understand, trying to help, even as he struggles with his own differences and frustrations.
I wish you could see my husband, grief-stricken and paralyzed because his little buddy, the one who looks and acts just like him despite no shared DNA, is slipping away.
I wish you could see the sleepless nights, the horrible messes, and the piles of prescriptions that didn’t work.
I wish you could see my sweet boy, hear his soft voice, urgently praying for change, for relief, for help.
I wish you could see how much my family loves each other, despite all the mess.
I wish you could see me mothering them, caring for them, creating routines and consistency for them.
I wish you could see my sons playing with their friends when they can.
I wish you could see how much they love street fairs with unusual foods and plants.
I wish you could see the pile of evaluations and medical reports, some conflicting with one another.
I wish you could see how hard it was for my son to overcome his anxiety and actually show up for his blood test this morning.
I wish you could see the beautiful pictures my boys paint.
I wish you could see how much we all love to sit on the couch and watch funny YouTube videos together.
I wish you could see the way they love me.
There are so many things I wish you could see.
So many things I wish the doctors and therapists could see in my children and family.
So many things I wish the lady at the store, angry because my son is using the women’s restroom with me – so many things she just can’t see.
So many things the world just can’t possibly know, and probably wouldn’t know what to do with them if it did.
What I wish you could see.