I was asked recently about “fixing” Bridget. I was very happy Bridget wasn’t there to hear the question.
I understand that Bridget is different, but I do not want her to see different as bad or something that needs to be “fixed”. She isn’t a flat tire but a person. Had Bridget been sitting next to me, she might not have understood the question but what if she was? What if she thought she was broken and not whole? What if she thought I did not think she was right, perfect or awesome? What if her sister thought that Bridget needs to be “fixed”, that she isn’t as incredible as her friend’s sibling?
I do not want to go down that road, truth be told. I know with gene editing we are making designer children. I do not want something designed, I want a child my husband and I created. Yes, our lives would be infinitely simpler if Bridget was born without PACS1. But our lives would not be as enriched.
I would not have begun blogging and met Kristi, Dana or Kelly. I would not have met the fantastic cast of Listen to Your Mother or realized that by sharing our journey I was guaranteeing that we would not be on this road by ourselves. I wasn’t a writer before Bridget. I am a writer because of Bridget.
I would not realize how accepting Abby is of those who are not the same. She naturally, without effort, accepted that her sister was not the sister she anticipated. Abby is kind, but I think she is kinder and more accepting because of Bridget’s influence. When Abby enters a classroom she intuitively knows what classmate needs more understanding and what classmate needs to learn that we are all unique.
My marriage would not be as strong. Having Bridget has strained our marriage at times. There have been times when all I was focused on was her needs. I forgot that my husband is my partner. Bridget has made us planners, not just for our future but for hers. We talk more and we find ourselves on common ground. With Abby we were different parents, sometimes going in different directions. Bridget unified us.
I would not have the friendships (or pancakes) that I have today without Bridget. I never would have met my Spaulding Chicks or the teachers and aides that have become my friends. The friendships I do have would not have been as deep as they are with Bridget. When you break you learn who is there to put you back together. Without Bridget I would not have broken, but I would not know who I could count on. I am also a better friend to others. By needing them, they have taught me how to understand when they need me. I’m not a perfect friend, but I try to be better tomorrow than I was today. Having Bridget taught me that lesson.
I would not be as brave as I am today, without Bridget. I would not have the courage to argue with a doctor, advocate with a school system, hang from a trapeze or run an obstacle course. Surviving Bridget’s first year made me see I was stronger than I thought. I have become more confident because I have Bridget.
If I “fixed” Bridget, I would not have grown or been able to be fixed. My world would be smaller. I would be colder. I would not have the understanding to see when a child is having a tantrum in a restaurant to send the mom a glass of wine instead of a stare. I would not be on the school committee. I would not have a village. I would not, I would not, I would not…
It is only with Bridget my words change to I would do this and I will do that.
This sounds selfish, I’m sure. That I don’t want to “fix” Bridget because of how my life has been changed in the positive. Yes, there is a lot of negative. There is head banging. There is out of control crying and tantrums. There has been 8 years of therapy to get Bridget to speak. There has been 8 years of therapy for Bridget to be able to jump. There has been 8 years of surgeries, surprises, hospitalizations, medications, therapies and special education fights.
I do not ever want her, our family or myself ever think that she isn’t perfect. The 8 years of heartbreaking work wasn’t because Bridget isn’t perfect. The 8 years of work has been because Bridget has PACS1. If I could go back in time and “fix” Bridget I do not think I would take the chance. Bridget is Bridget. PACS1 makes her the way she is and I am okay with that. PACS1 is why I have evolved as a mom, as a partner, as a friend and as a person.
I finally realized that after all the years of searching for a diagnosis wasn’t to fix my child, but to understand her. The real epiphany was that getting a diagnosis for Bridget did not change Bridget. It only made us realize why she is so perfect.
In truth it wasn’t Bridget who needed fixing. It was me.