Now and Then

Photo by:  Judy Barranco

Recently, I have been really thinking about the now and then.  Now and then meaning life and death.  I cannot lie, it is deeply horrifying to me to even phantom and it bothers me just as deep to think about.  Recently, I saw a post shared on Facebook from Mombie Needs Coffee titled “Will I Die Before My Special NeedsChild…”   It made me go back and read my own postings from 2014:  “Life Expectancy…Do you wonder? Do you ask?” and “Not all moms share the same secrets”.  About a year after those posts, my mom passed away suddenly.  I remember standing in the waiting room at the hospital after she was gone thinking, “How could I explain this to Kerstin?”  “Will she understand that she would no longer see her Granny?”  Even when we are fondly looking at pictures of mom, I wonder what she’s thinking, seeing her in pictures and never seeing her in person even when we have family gatherings. 

By now we have all seen in the news recently the coverage of the helicopter crash that killed Kobe Bryant, his daughter and 7 others.  They were parents, they died with their children and even left children and families behind.  My thoughts go out to all the victims and their families.  This tragic event got me to thinking once again about now and then.  Hearing of the parents onboard, dying with one of their children.  I thought of them having partners or spouses and possibly other children at home.  That meant that those left behind had another to look after the other children.  It also made me think about single parenting; what if one of these people were a single parent and left a child to be cared by others. Or, if they had been single with only one child and their child was onboard that flight too. 

I do not know if it is natural to think like I have for so many times, that whenever that times comes, I do not want to be left without Kerstin and I do not want her to be left without me. Sometimes, I just keep selfishly thinking that the two of us dying at the same time would be better.  Better for who?    For that to happen, it would probably be sudden and tragic.  That ending would be one that is sure to devastate our family and friends.    

You see, I cannot imagine a life without Kerstin and I cannot imagine her life without me.  Will she be cared for the way she is used to?  Will others have the patience and understanding that I have grown to have.  She needs around the clock care for all her daily living needs.  I will not lie; it is no easy journey. 

I know that this is not something “typical” families think of on a regular basis if, at all.  They may not even prepare beyond wills and life insurance in the event of their own demise.  Raising a child with special needs leaves parents thinking of the daily to dos of doctors, specialists, school, therapies then there is their life insurance and that of the child,  wills, guardianship, power of attorney and quite possibly some things that I cannot even think of right now. 

We want to make sure that they enjoy and are good and kind beings.  We do all that all that we can to make sure our children are loved and cared for. Life is for living- the easy and hard.  We must navigate the hills, curves and valleys as we approach them.      

Photo by: Judy Barranco

More to come...

Life Expectancy...Do you wonder? Do you ask?

     This past week has been interesting, to say the least.  In one of my classes, the discussion of "Life Expectancy" came up when we were talking about chromosomal disorders.  My instructor posed this statement and question to the class:  
" It is natural to want to know the life expectancy of the child after the prenatal testing or diagnosis after birth? I think this is interesting, because in all honesty we never know anyone's real life expectancy. Ok yes, there is the standard life expectancy for any person born that is issued by scientist/ physicians. But in reality, it has come to mean very little in my opinion. I say this because when I watch the news I hear of young children, teens, and young adults that die everyday from things other than medical issues. Yes, the disorder would be a factor in how long the child may live, but in this day and time there are so many other factors, that can and cannot be controlled, that affect life expectancy, that I feel the life expectancy based on a disorder doesn't mean much at all." (Crawford, 2014)

    The discussion and the events following, really made me think!  Is it necessary for me to ask, do I really want to know?  My response in the class was that although Kerstin does not have a chromosomal disorder, she is diagnosed with Cerebral Palsy as well as Epilepsy (often reported in chromosomal disorders but it is not one alone).  I have never asked doctors about "life expectancy", none of the parents that I've come into contact with along this journey has ever talked about it.  They may have asked their child's doctor but it is not a common topic.  

     The talk of "life expectancy" never came up, even during the many surgeries Kerstin has undergone.  Her last surgery was intense,  she would need more anesthesia, and would be under for well over 4 hours, which meant it was 9 hours before I saw her.  That was scary yet, survival and expectancy never crossed my mind. 

     During this discussion, I also stated that I am always so thrilled when I seen teenagers, adults and seniors with Cerebral Palsy and other abilities.  I see hope!  I see fight!  I see encouragement!  We can listen to doctors and other scientists and we can take test after test...no one truly knows their "life expectancy".  Looking at genetics, my grandmother was in her 90's when she passed away a few years ago, one can only hope to reach that.  Like my instructor stated, people unexpectedly die everyday.  One statement I'll never forget from my Partners in Policymaking course;  having a disability can happen to anyone and at anytime, people aren't always born with a different ability...sometimes it happens. 

     So, just yesterday, I was feeling really bad with a stomach virus.  I could barely hold my head up after staying in the bathroom most of the night and morning.  I had texted my sister and told her that I was not feeling well and needed to get some Ginger Ale and Powerade, she told me that she was going to get the items for me and that she would get Kerstin and keep her for the day for me.  I was so thankful for that.  Watching my daughter leave with my sister bought tears to my eyes!  My stomach was hurting so much, I was so sleepy and needed that help at that moment.  I couldn't help but think about "life expectancy" once again.

     With no guarantees and no certainty of how long...I could easily leave this earth before my daughter!  What then?  That scene I just saw leaving our home, is what I deeply believe would happen.  I truly believe that my sister would step right in for my daughter!  That's what I want!  This is really hard to write because I am the only parent involved in Kerstin's life.   So life expectancy is not something I am going to dwell on.  I want to live, enjoy life and be all that I'm able to be for Kerstin!
     

L O V E

Crawford, Adrianne, 2014.  Life Expectancy.