Lesson #1

Accept and embrace the many ways in which your loved ones deal with fear, stress, and sadness... even though they may be vastly different than your own.

In the months after my mom's diagnosis with CADASIL, I found myself confused and frustrated by the way she was dealing with her diagnosis.  She didn't seek out as much information as I thought she should, and it seemed like she was in a sad state of denial.  I, on the other hand, dive into things (often too fast) and immerse myself with information.  I found several Facebook groups dedicated to CADASIL and CADASIL support.  I did research on the diagnosis and prognosis for those newly diagnosed. I looked up medication pros and cons.  I pressured my mom to do the same - and got so hurt when she didn't seem interested.  It took me a while to understand WHY I was so hurt.  Slowly, and after many small internal battles, I realized that I wasn't hurt because she wasn't doing it for herself - I was hurt because I wanted her to do it for me.  I wanted a role model.  All I could think was, "If I have CADASIL...I want to see first hand how it live it - and embrace it.  I would cry myself to sleep with fear and anger.  I was angry at my mom.  I was angry at myself for being angry at my mom.  I was just angry and terrified and alone.

It took a few weeks before my mom was able to clearly explain to me her viewpoint.  "Jo" she said, "I am not going to deal with this the way you want me to.  I don't want my life to be defined by it. I don't want to eat, sleep, and breath it.  Some days, I don't even want to think about it - the future scares me so deeply."  Still feeling that I was right in my opinion,  I interrupted..."But it is your life now!  You can't hide from it."  She continued..."I am not hiding, Jo.  I am doing a lot more than you see.  I am in a tough place, too.  I read about dementia and strokes and behavior problems and that's not me.  I don't want to think about fading away emotionally...physically...cognitively...and become a burden.    I am not like you, sweetheart.  In some ways, I wish I was, but I don't move quickly.  Please know that I am not hiding - not living in denial.  I'm just not ready to fully embrace it.  All I need is some time."

After our fight that evening, I realized how selfish I was acting.  This was not about a possible diagnosis for me.  This was about my mom and her diagnosis.  It was about her needs, her fears, and her desires.  This was all her.  My job?  To support her in whatever way she needed me to...and what she needed was love and comfort - the opposite of what I was offering.