Endings and Beginnings

Sometime in the past year or so, I read a headline suggesting that less than 1% of the world's population had a certain rare personality type.  I laughed a little and thought...With my luck, that would be me.  Because I couldn't stop thinking about that, I took the Myers and Briggs personality test and wouldn't you know it, I am the world's rarest personality!   It actually explains a lot of why I'm such a misfit. 

It talks about the best career choice, partner choice, parenting patterns...etc.  In the parenting department, it talks about how this personality sees their children as an opportunity to learn and grow together and to be their equal, a friend they can relate to.  

Without a doubt, I have raised my kids to be my best friends.  I never once really saw them as children but really did feel like we were learning and growing together through the thick and thin things of life.  

Now that Spencer is getting married, so many different feelings are coming to the surface and I can't stop thinking about the beginnings and endings of life.    I'm sure all parents go through a period of reflection when life changes happen, but the addition of Dyskeratosis Congenita has added a difficult dimension to process. 

 

It was always hard to imagine my kids would live very long.  We never really did wish too far into the future because more times than not, it didn't seem possible that the normal milestones of life could be reached when there was always someone in the hospital, life flights, and ambulance rides, seizures and CPR that made up so much of our reality. 

Looking back, I did everything I could to 'normalize' our situation.  I tried to be a shock absorber and provide a layer of hope in spite of the disabling moments.   I diminished each trial.  I didn't deny it, but I certainly diminished it.  I kept it contained...for them and for everyone else we bumped into in a day but it was never contained for me.  I swallowed the fear and all the blows, whole.  I denied that we were living this extraordinary life because I never wanted a life this big.  I kept most everything a comfortable distance so I wouldn't have to feel the complete overwhelm that was mine and mine alone. No one could possibly know the burden that life itself became for me and still is. 

But...now, I know.   I know better or differently.  I know that just because we deny our feelings and emotions doesn't mean they go away.  

A volume of living is coming to an end.  I never had the awareness, all these past 26 years that someday, maybe one of these kids would find themselves doing something so normal as getting married.  Had I known or believed in that possibility, decades ago, would I be better prepared?  Would I have done it all differently?  Instead, I sit alone, holding the tension of a disease that changed us in profound ways and a child who wants nothing more than to choose this normal life. 

We've had to have some hard talks about how we move forward in the medical world.  Spencer will have no choice but to get off my insurance plan for healthcare.  The cost will be huge, not to mention my plan will escalate as well with one less person.  His girlfriend has never been to a single appointment.  She doesn't know what to look for when his blood pressure drops and he hits the floor.  She's never sat through a bone marrow biopsy or two or three or 23.  She hasn't sat by his hospital bed, counting the beats of his heart but I have and how do I let all that go?  How do I pass the baton when we have had no context with which to transfer the power?  How will he ever be able to fully support a family when he has so many days of being sick and unable to work?

We've had to talk about this and more, things normal parents never have to discuss when their kids get married.  Spencer respectfully told me that he doesn't want to go to another doctor appointment.  No more bone marrow biopsies...ever.  He just wants to let things take their course.  He has always had this attitude...when his life is over, it's over.   He wants to die doing what he loves with the person he loves.   I'm sure he will visit doctors when he gets sick but no more testing or treatment beyond the standard issue, seasonal problems we all face.  Many of his appointments were put on hold for COVID and we will not be rescheduling those.   I accept what he wants...would I want something different?  Maybe, I'm not sure.  Will I worry more than I should?  Probably.  Can I visualize how this is going to work?  No.  Will I miss my role as his mom?  More than anyone will know... a part of me is dying and I'm not sure what to do next.   

There's an odd feeling that marriage is so normal yet so far from that when you consider the limitations of disease.   So much is ending and I feel a depth of sorrow and grief I was not expecting. Things will never be the same.  

Yet...there are new beginnings too.  I am happy he gets to experience the wonder and beauty of marriage.  I'm hopeful the temples will open soon so they can be sealed for eternity.   I'm glad that he has someone he loves to share his life with.  She is amazing in every way and I love her. Together, they will discover their own system of working out the details of life.