Confession time…I forgot that Bridget is now a senior in high school. It was not until this week when I started seeing all the back-to-school posts from the parents of former peers of Bridget that it hit me:

How different our lives would be, if Bridget had not been born with a rare disease.

What if she had been born and then come home instead of the NICU?

Instead of spending her newborn and toddler years in therapies and medical appointments, she may have had playdates and if I had forgotten how torturous Abbey’s dance recital had been, maybe I would have enrolled Bridget in dance class.

She would have gone to kindergarten and made friends that would have lasted through this senior year. She may have joined sports or been the class president. Based on Bridget’s sense of humor, with PACS1, she definitely would be the class clown had she been born without it.

Bridget would have her driver’s license now; had she been born without PACS1. I would be worried about her staying out too late or driving in bad weather.

Bridget would be making homecoming plans, maybe getting one of those silly over the top invites by a boy my husband would not trust with his little girl. I would be at her friend’s house watching the girls get ready with too much make up and too little dress covering her ass. Since she is a fashionista with PACS1, I can only imagine what she would be wearing without it.

Bridget would have a job, a life outside of mine. She would be making her own money. Probably at a garden center, working for a florist or doing something creative. Instead of teaching her life skills or using the garden center as an out of the box OT session, it would be something she might one day make a career out of.

If Bridget was born without PACS1, she would be making college decisions. Or as I said to her sister years ago: college, the military or not my house after you graduate from high school. She would be figuring out the rest of her life, making plans for life without our constant supervision. I would be wondering if she was leaving the sandbar for the iceberg and hoping she chose a school closer than her sister did but far enough away that she could begin to form her own life.

If Bridget had been born without PACS1, my husband and I would be preparing for life as empty nesters. We would be having weekends away. Instead, we are in a holding pattern. While our peers are living their best lives with independent children, we are living our best life with a child who will always be a preschooler. We will never be empty nesters, and while thankful our friends understand that and never mind including Bridget, it would be nice if we could just pick up and go.

Like our friends we would be dealing with our elderly parents but not also dealing with a toddler. We would be helping our parents with their healthcare issues, while not also dealing with hers. We would not only be our parents’ healthcare proxies but also our adult child’s guardian and power of attorney.

We would be making our retirement plans but not having to consider how Bridget fits into those plans. From relocation and the disability services available but the medical implications of leaving the security of Children’s Hospital.

Without PACS1, we would be watching Bridget take senior photos. Instead, there are no school photos, since she left public school.

I don’t usually go down the road of what if…I love seeing my friend’s posts and usually I forget that their child is the same physical age of mine. When I am seeing the senior flashback photos, I do not participate, as I did with her sister. Although Bridget is technically a senior in high school, when you are in a special ed school they don’t really distinguish grades. Rather you are grouped by ability.

I wonder, am I doing a disservice to Bridget by not participating, now that I remember she would be a senior without PACS1? Am a horrible mom for some days wishing she was born typical and not just loving the child that she is?

No, and if you at home have that not-so-typical child have these thoughts too it is okay to wonder what our life would be without rare disease impacting it. To me, it’s like loving your typical teen even if they aren’t really loveable in those hormone driven moments. Where you wonder with your typical kid, why can’t they just be quiet!

I forgive myself for these what if (and sometimes what the everlasting fuck) moments. I don’t love Bridget in spite of PACS1 or because of PACS1.

I love Bridget for the child she is and if there are moments where I wonder what our life would be without PACS1, I also have times when I wonder what our life would have been like had David gotten his wish of having six children. I wonder what my life would be like had I left the sandbar at 18, instead of making a life on it. I wonder what my life would be like in a hundred different ways had I just made one other choice.

Wondering what life would be without PACS1 doesn’t hurt like I thought it would. Well, okay, it hurts but not as bad as imaging a life without Bridget.