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A&A #3: NOT ENOUGH - PARENTING AND SPINAL MUSCULAR ATROPHY
SEPTEMBER 06, 2016 AT 14:02PM EST BY EFREM ROBERSON

Our grand prize winner, Kimberly Sullivan, has a grown son with Spinal Muscular Atrophy (SMA). Of course, life is difficult with a disease as severe as SMA, but what about the caretakers, the brothers or sisters, the moms and dads? Life can be very difficult for them, too, especially when people in their lives don't appreciate the extent of care required for whoever it is in their life that's suffering.

The passage below is Kimberly's reflection on being told through her life that no matter how much she does -- even given the colossal amount of effort she puts into caring for her son, Adam -- it's not enough. We hope you'll enjoy it, and if you want to read more, you can read further at her personal blog.

My whole life, I have struggled with being enough.  This weekend, I spent the whole weekend being not enough.  I am not gardening enough, cooking enough, cleaning enough, doing enough.  I am just not enough.  This is the message that I have been hearing my whole life.

This constant state of not being enough is exhausting to my already exhausted, over-worked body.

I am the mother of a 22-year-old son in a wheelchair on a ventilator. He has a condition called Spinal Muscular Atrophy.  In order for him to participate fully in life, I have to be fully involved and tuned into his every need 24 hours a day, 7 days a week.  I don't ever get to rest.  I never get to shut off.  I never get to not be in charge.

Never the less, people in my life still feel the need to point out where I need to do more.  It makes me angry.  It makes me feel undervalued.  It makes me feel like I am not enough.  

The people who seem to be saying I am not enough are the same people who couldn't maintain the level of activity that I have no choice to keep up with for 24 hours, let alone 365 days a year.  My husband doesn't usually make me feel this way.  In fact, I am sure that he feels the same way.  There is always too much to do and not enough time. My son does not make me feel this way.  He asks a ton of me, more than I can do much of the time.  He realizes he requires a ton of care, and tries to stay distracted so that I don't have to be getting up every two minutes to take care of this or that need.  He frequently thanks me for taking care of him.  

The reality of the situation is there is a lot of "not enough" in my life.  Not enough rest, not enough time to relax, not enough help, not enough time in the sun, not enough alone time, not enough time to shower, not enough time to do the things that recharge me, not enough time with my husband, not enough escape from stress, not enough time to eat chocolate cake, not enough time to color, not enough time to paint, not enough time to devote to my chocolate business, not enough time to read the Bible (this is one of my favorite things to do), not enough time to...  

The list just goes on and on.

Here is what there is enough of:  Love for my son.  Time for late night conversations and video games together.  Time to work on his homework together (not enough energy on my part). Time to discover how amazingly smart my son is.  Time to spend days together exploring Chicago in his speech class.  Time to walk to 7-Eleven to have impromptu picnics of Slurpees, taco rollers for him and tacos for me. Time to go to movies, or Denny's, or wherever else he wants to go for Mom and Adam Sunday date nights.  

These are the things that are important to me.  These are my priorities.  Taking care of my son and his needs is the only thing on my to do list.  Anything else that gets done is bonus.  When someone tries to guilt me into doing things they feel are important, they are robbing my son of my time.  When they try to get me to do things beside rest, they are robbing me of energy that I need to listen for Adam overnight when we don't have night nursing (I usually have 1-2 nights of night nursing, and hubby takes two nights.  That leaves me with 3-4 nights a week with constantly interrupted dozing).  

If I share some of my precious energy with you, you better appreciate it, because that means you are important to me.  Because there is just not enough of me to go around.


Congratulations from the DNAsimple team, Kimberly!