Did I really think there would be down time from the whole BRCA stress? Nope, that’s never going to happen. I’m just going to have to learn how to manage the stress better. Learning about my genetic mutation has allowed me to learn a lot about myself. It’s not all bad stress. But today, it’s leaning toward the darker end. My daughter, almost 18, no longer wants to wait to get her genetic testing done. She had in her mind that she will get the prophylactic bilateral mastectomy as soon as possible if she is positive for the mutation. We, obviously, have a lot of talking to do. The main thing I want her to consider is the impact on breastfeeding when she does have children. This surgery is a big step to take and she’ll be missing out on something I consider to be one of the biggest blessings in having children.
I told my husband and literally flipped out. Ali is very young to make this decision, I get it. I just don’t want to make this decision harder than it has to be for her. She is, ultimately, the one who has to make the decision about her own body. She remembers the death of my father, who was like a father to her as well. She was old enough to know the pain we all suffered with my mother’s illness. My mother’s death did it’s damage to her. Like me, she’s terrified of what the genes have in store for her. I won’t tell her she can’t have the testing done. I won’t tell her she can’t have the surgery. I just pray her test is negative so we don’t have to go down that road.
Ali’s never been one of the girls who is focused intently on her appearance. Yeah, we can be late someplace because she’s taken too long getting ready. That’s in her genes, too. What can I say? But, overall, she is so far from the hair/makeup type girl that it’s actually frustrating to me at times. She’s never cared about boobs. In fact, growing up, her whole thinking was “less is more”. Now that she may be faced with this decision to have them removed and reconstructed, I know it’s easy for her to say “let’s do it.” That is not a make or break part of her body image. I’m proud of that, yet it worries me. I don’t want this decision to be easy. Yes, I want her to be comfortable and happy with whatever she decides to do, but I want it to be a heavy decision.
This is my funny, beautiful, strong willed, incredibly intelligent, stubborn, true spirited, angelic daughter. My baby girl whose hands I look at now and still see the little baby girl hand holding mine. My girl who used to laugh so hard it would make her get hiccups and when she was a little baby she would spit up from laughing so hard. That was a warning I had to give everyone. You’re gonna make her barf if you keep that up. But her laugh was infectious and hilarious, so she spat up a lot. This is my girl who I used to watch sleep, marveling at how big her eyes looked even when they were closed. I used to watch her run on the soccer field with the other little ones, chasing the ball all over the field, bunching around the ball, not knowing what to do once she was close enough to actually kick it. My girl who’s true spirit held me physically and emotionally when my dad was taken away. My girl who’s courage blew me away over the years of riding horses and getting thrown, a lot. She rode the biggest breeds, making it look so easy. She even made falling off look easy, landing on her feet a couple of times. My girl, who is now grown and looking for colleges. She loves to engage me in conversations that will frustrate me, things like philosophy and alternate universes, things I can’t get my brain around. My girl, who has become my friend, who I am ultimately proud of and would fight to the death to protect.
So, we are scheduling an appointment with a genetic counselor for her to be tested. They may not test her until she’s 18, but that’s in April so I’m hoping they’ll do it. Then we’ll do the counseling part and maybe even a regular counselor to cover all the bases. I just want to make sure she makes the right decision for the right reasons. I don’t even know how old she’ll have to be to do the surgery. I saw there was an 18 year old in England who had it done. I didn’t tell Ali. If she’s positive, a lot of things will have to be considered and it will be a long, emotional road.
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