As a mother to a child with extraordinary needs, I am busy.

Phone calls to multiple providers for our son. Running our older son to school and then driving directly to daily therapy appointments for his younger brother.

Emails to catch up on and more phone calls to insurance, medical supply companies, and the county.

I am constantly working on home therapy with our son or I am busy catching up on housework that has been put off for far too long.

I have friends although my social life is fairly non-existent; and I’m sure that’s partly my problem. But at the end of a long day I’m exhausted and the last thing I want to do is leave my house.

We are running here to there all day long, phone calls, interacting with therapists, but yet I am lonely. I talk to many people, text girlfriends, and keep up with friends on social media.

So, no, I am not sitting alone in my house all day completely isolated from the outside world. But, yes, I am lonely. This isn’t fixable by nights out with friends or a vacation away. 

The loneliness of a special needs mother is a different kind of loneliness.

It’s lonely with worry. Is the next illness going to send our son to the hospital, or worse, will we lose him forever?

Are we doing the right thing? Are we doing the wrong thing? Will our son ever walk... or talk? The worry is constant and never goes away - alone or in a room full of people. It never leaves.

It’s lonely with guilt. Should I have done more? Am I doing too much? Did I lose my temper on our older son today when my patience was running thin after a night of no sleep?

Is he going to grow up and think all we did was care for his little brother? Will he resent us? Do our boys know just how much we love them?

It’s lonely with thoughts of the future. Every year that passes is another year that we have had the ability to care for our son, but there may come a day when we no longer can.

Instead of thinking of his college days, marriage, or fatherhood I am thinking of making our home accessible and pushing away thoughts of the possibility of placing him in a care facility. Our future will always include caring for him.

It’s loneliness with all of the should haves, would haves, and could haves. It’s loneliness with far too many what ifs? It’s knowing countless of other mothers are in similar shoes, but yet you are still alone.

We are a tribe of mothers who are warriors for our children. Lonely, exhausted, but strong. And I know this journey is a tough one, but as lonely as we may feel we are all in this together. Alone, together.

If part of this journey included loneliness, I willingly accept it. The thoughts of worry, guilt, and the future will always linger - but the joy, pride, and love will trump them all. Always.

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