I feel like I should give the usual caveat that I love Bridget, before you read this post. However, unless you are new to this blog, you know my love for my child is all encompassing. Yet there are days I wonder. What would our life look like if Bridget was as typical as her sister.

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I was talking with another PACS1 mom recently about how having a child with a disability becomes (in some ways) to define your family. I was commenting how the person Abbey has become in college versus when she lived at home. We spoke about how there are times I wonder if Abbey would be the same person if Bridget did not have PACS1.

In fact, who would we all be? I have written many times about how being Bridget’s parent changed me, for the better. Yet to be honest, there are other not so good changes that are created when you become a parent of a child with a rare genetic disease. It is easy to see now, looking in the rearview mirror. And Bridget is only 14, so I am sure 10 years from now those optics will change once again.

While I have become more vocal and confident, I have also become more sedentary. I love to hike and bike and walk and once upon a time I went to trapeze school. When Bridget was younger, her lack of mobility did not really affect my life. I ran obstacle races, as she watched from her chair. I hiked Shenandoah with her on my back. After years of physical therapy, Bridget got out of her chair and can walk / run and freaking jump!

But not at our pace or our stamina. It becomes easier to walk at her pace/level than to force her (and deal with her temper tantrums) in increasing her endurance. She does not have the coordination for bike riding, so that is something I’ve given up.

I wonder who her sister would be today, had Bridget been a typical younger sister. Would their bond be the same? Would Abbey have had a stronger friend group, gone to a dance or tried out for a sport? Abbey gave up horseback riding because we couldn’t afford the time or the cost of lessons. Abbey spent most of her elementary years doing homework in the waiting room of the therapy center, instead of after school activities.

Lastly, I wonder who Bridget would be without PACS1. PACS1 has affected Bridget since birth, we know it is a multi-system protein defect that impacts every aspect of her life.

Who would she be without PACS1?

She is so social and plays pranks on her school secretary. Would she be the class clown or the class president?

She loves music, would she be in the school band, chorus or theater company?

What would Bridget want to study in college or would she go into the trades? Would she fall in love with a boy we approved of or a rebel?

Would she still be as lovable or a typical melodramatic teenager?

I’m not sure who Bridget, or any of us, would be without PACS1. But I do believe as much as it has changed us, the core of who Bridget is as a person remains.

The silliness, the sense of humor, the love and most importantly the bonds she has created.