Day #239 – My One, Biggest Fear

I have some heart funkiness.  No one knows exactly what is ‘wrong’ – but when it’s misbehaving it’s quite irritating.

Last night it was acting up. Last night was frustrating.

Normally, it doesn’t bother me much.  But, last night it did.

Probably because I had just read an entry from Autism Hippie. In the post she refers to her son (now legally an adult) being approved for Social Security Supplemental Income.  He will receive $710/month to meet his basic needs.  She went on to write about her (and his) reality.  During this graduation ‘season’ she was not posting about college acceptance letters, but instead about a life of poverty and reliance on governmental assistance.

All for her son, Michael.  For the boy she gave birth to – the boy she loves with all of her heart.  I cannot imagine ‘where’ she is in this thought process.  Having the true recognition that someone you love more than life itself will live the rest of their life in poverty-through no fault of their own.  Tucker is not like her son Michael.  Tucker *should* be able to go to college, to work regularly, to live alone…but there was something else in that post.

As I read her posting I came to this phrase, ” It is about hating that they will outlive us.”

I stopped reading.  I couldn’t go any further.  I knew just what she meant.

The older we get, the more we recognize our own mortality. I know, I’m only 39 – but 39 with a couple of kids, one of whom has some special stuff going on, adds a unique stress-inducing thought-process.

The thought of our children outliving us.

I’m caught in a strange place.  Parents should never have to bury their children – EVER.  Yet, many parents are plagued with worry about what happens to their child after our own eventual death.

As I sat last night with my heart thumping I couldn’t help but think about life…about both of my children…about not having had enough time with my husband.  In a way it brings you so much into the moment.  So thankful for all of the beautiful things that surround you.  Things not as in homes and cars…the things are the wet nose of a dog, Tucker’s kiss on my forehead, Estelle reaching for my hand, Alex asking for help, and my husband just looking at me like he does.  Those are the most beautiful things in life.  I knew I was ‘fine’ – but when you can physically feel your heart stop, skip, pause, and then begin again it takes you to a very real place of reflection.

And then…I put Tucker to bed.  As I pulled the blankets up to his neck my heart thumped. I looked at his sleepy face…which still resembles his much younger face.


I thought to myself….

Who would understand him in the moments that when he seems ‘ununderstandable’ (nice made up word by me)?
Who would help him in the moments he is overwhelmed?
Who would explain the process of getting a job?
Who would advocate for him at school?
Who would ‘trick’ him into pushing his boundaries?
Who would hold his hand in a store or going into a cave?

It’s not that I think I’m irreplaceable, although I realize this post reads as such…it’s just there is something about our relationship.  It’s a different bond.  Not better, just different.


I know that I can understand him in every moment.
I know I help him come down from too much sensory input.
I know I help explain the world in a way that makes sense to him.
I know the ‘language’ of the school and what he needs.
I know how to trick him into taking chances.
I know he’s not afraid to reach for me.

As I laid in bed last night I prayed a different type of prayer.  The prayer was a plea…a plea to give me enough time to help him to adulthood.  Not that we stop needing our parents then, but I know he would be well-equipped to deal with most of life.  I don’t know that Autism Hippie is the praying kind…but I prayed for her and her son Michael last night.  I prayed that someone would always watch over him.

As you say your prayers tonight (if you are the praying kind) do me a favor.  Pray for the most vulnerable parts of our populations…for those with no one to specifically care and advocate for them.  One day…that could be your loved one.

7 thoughts on “Day #239 – My One, Biggest Fear

  1. I posted yesterday about how your posts remind me of my brother. My fear is going to become a reality sooner that I would like to admit. My brother is an adult who, from all outside appearances, is “normal” and should be able to care for himself. However, his inability to function in many situations and with most other people has made him unable to work a “normal” job. He can drive but won’t. He can deal with life – but often forgets to. At some point, my brother will become my child. When my parents are no longer here, I will be tasked with making decisions that most people assume he can make for himself. I will worry about what he eats (He finds it much easier to complain about not having the food he wants than it is to cook it himself.) and when he has a doctor’s appointment. I will use his money to pay his bills instead of allowing him to waste it on things that are of more interest than responsibilities. And I will pray for him and for my family and for the strength to love him through his many “Eeyore” days.


    • I’ll be thinking of you. I just have to believe that we will one day know…one day understand all of this. I’m so glad that your brother has you – but life does feel a bit unfair for some siblings. ALthough, I’ve often thought that my daughter is ridiculously compassionate because of her brother. She will change the world in such wonderful ways because he willingness and ability to help and understand others. I sense you are the same…


  2. That’s a great prayer request. I had a neighbor who “adopted” adult twin autistic kids when their parents passed away. She took them on cruises but also helped them with many life decisions. She was an answer to someone’s prayer!


  3. Pingback: Day #308 – Fine Family | 366 Days of Autism

  4. Pingback: Day #327 – Indexing | 366 Days of Autism

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s