When Bridget was born, I knew something was wrong. I thought it was a “normal” medical condition and begged the nurses to save her. That first year, I was so in the trenches that I did not realize this would be her life. I thought that she would be cured. I did not know that we would be facing a lifetime of therapies, medical treatments and intervention.

I remember when she was a newborn, just wanting her to live and saying I would be okay with however she turned out, as long as she lived.

Over the past 16 years, my outlook on life with Bridget has evolved.

I remember thinking all those years ago, that I was okay with Bridget being my forever toddler. That she fought so hard for every milestone, I would not change her for anything.

Then I began to wonder who Bridget would be if it was not for PACS1.

Now I live with that forever 4-year-old and there are days I would change her into a typical 16-year-old in a freaking heartbeat.

There was a time, when I swore Bridget would never be in a contained classroom, or a special school. My daughter was going to graduate with her class and be a valuable member of her community.

Then she slowly stopped going into the mainstream classroom, spent most of her day in a contained one and we moved her to a school that specializes in children with significant special needs. Where she is a member of her community, just not the one I ever imagined.

At the moment I cannot imagine Bridget ever being in a residential program, but I have learned throughout this life that something can be true yesterday and false tomorrow. I no longer talk in absolutes with Bridget. What works for now (being home) might not be best for her in the future.

Recently another parent told me that they wouldn’t change their child with special needs for anything in the world. That they loved their child just the way they were.

I smiled and said of course.

Because I was that mom 10 years ago. I know that there is a certain taboo in thinking that we want our kids to be typical. There is something in us that makes us feel if we wanted to them to be “normal” we don’t love them.

We love our children, the way they are. And it is 100% okay to say we love this child but not this life. It is 100% okay to wonder what they would be like if they were typical. It is 100% okay to feel frustration, or down, or hopeful for a cure.

The truth is, we feel this way about our typical children, too. Name me one parent that doesn’t wish their child was an all-star on the baseball team, a future Olympian or a Rhodes Scholar.

That is parenting, wanting your child to be the best they can be.

As their needs change, as they get older, so does our outlook. We need to be patient with each other and ourselves. We need to be able to look back and say, yes, I wanted Bridget to walk at high school graduation in her cap and gown, with the friends she had been with since kindergarten. And it hurts to see those friends getting their licenses, looking at colleges, insert whatever dream just died a little.

And give yourself grace in those moments.

Because when these moments happen, you always made the right choice for your child based on their needs, not your dream.