On sadness, grief and hope

Being the mother (or any parental figure) of a child with disabilities is never easy.  I know this not only from my own experiences, but also through the shared stories of other parents. Yet, it can be difficult to discuss these feelings with anyone.  It's much easier to present a front of strength to the world while quietly crying ourselves to sleep some nights. And we are STRONG.  But we are vulnerable and sad and happy and grateful and often confused in our feelings.  However, I should not speak for all parents here, so I will speak only for myself.  I want to share this, so as to step out of the darkness of the secrets I carry; and be emotionally free. Finally.

On sadness

The sadness is persistent. A dull ache which never leaves my soul completely. When I watch you with your child; jumping on a trampoline, or hiking a mountain, or casting a fishing rod into the river; I'm sad. Rest assured, I'm aware of my selfishness in these moments.  And I mean not to steal from the joy you feel with your child; only that I can't help but feel a twinge of pain.


I am saddened when the world presumes that I NEED another, "healthy" child to feel fulfilled as a parent. The insinuation that my child isn't enough; that he's only "partial"; is constant. And I often have two choices: to begin conflict with many of the people I know and meet; or remain silent. I usually remain silent.  But in my silence, I internalize it.  I look at him and wonder how I can see something so different from the rest of the world. At times I even hate humanity.  That's not a positive front, but it's true. I question why people refuse to see the beauty in his difference.

And then I look at his body.  Honestly, his little body is a mess. A surgical scar here and a contracture there.  Very few of his systems function as science has determined they should.  I see this, and the dull ache is suddenly sharp.


On grief

Grief. It's much different than sadness.  Those of you in similar situations can understand this. Grief is being lost in a dark cloud and always seeking your way out, yet never finding it. It shadows so much of our lives. It is present at every missed opportunity and experience. For me, it presents when I hike a mountain and take in the beauty of the world in a way that I know Javier never will.  For the missed birthday party invites. For the missed sleepovers.  For the missed carnival rides. For the shortened life span. In anticipation of the missed first dates, missed sports teams, missed college, missed children.......in anticipation of it all. I grieve for the life that he will miss.  With the knowledge that no matter what I do, there are simply things he cannot do (see end-note).
 

On hope

Hope is my favorite life choice. Some call it denial, but I think they are wrong. Because without hope, I cannot get out of bed tomorrow.  Without hope, I cannot continue to ensure that Javier and I live an incredible life together. Call it what you want, but that's what keeps us strong.

Hope rises from deep within me, when I look in to my sweet boy's eyes and see the reality of life.  Javier has daily physical pain.  He recognizes that he is different from his peers; that they can do things he can't. He understands so much but is given credit for understanding so little.

That being said, he greets each day with a smile.  A HUNDRED SMILES! Those smiles overwhelm me.  And at those times I realize that life is just that: A series of moments.  Special seconds spent together.  

I am sad and afraid at times; but he remains a jovial warrior of life.  He hates none and loves all.  So I carry on through my sadness and grief to give him every second of the life he deserves. We camp and fish and hike and laugh and enjoy each moment as though it is our last. 
And at those times all the pain melts away into a moment which makes life worth living. 

End-note: Javier and I oppose any form of pity for his disability and things that he cannot do.  We believe that many of the things he can't do are the product of social institutions and of cultural beliefs.  This post is intended to only reflect my personal feelings and is not to retract from the independence of all individuals living with disabilities. 

Notes on Interacting with the Public

Being a mom to Javier is awesome. I listen to my friends talk about raising their kids, and I am grateful that I don't have to harness the type of creativity in parenting that they must; or at least not in the same way.  I never need to worry about disciplining him, or teaching him basic things like how to share with others.  Javi is already just about perfect in his unconditional love for anyone he comes in contact with.  So the hard part is already done. The challenges I do face as a parent often have more to do with our interactions with strangers or acquaintances.  And frankly, it's annoying. So here is a list of the most common "stuff" we deal with, what my response is, and what I'm actually thinking.

 The loooooooooooong stare

Usually performed by a middle aged adult in Target who just can't wrap their mind around a child in a wheelchair.  Also may crash their cart into the isle or another shopper because they are just too busy staring at my kid to watch where they're going.





My response
 Because I'm a human, and I dislike confrontation, I tend to let this slide.   Occassionally I squeeze my way into their sight-line and give an exagerated stare back.  The offender usually blushes before quickly averting their eyes attentively towards the deli meat or tampons or lightbulbs; basically anything in the exact opposite direction of us.

What I'm actually thinking
"Welcome to the world.  People live here.  People look different from each other. You're an ass."


The inappropriate questions disguised as concern



This happens most frequently with people I've recently met.  And by recently I mean sometime within the last 20 minutes. Because within 20 minutes we're friends and everyone is free to be however rude they want to be.  It's fascinating to experience people asking offensive questions with a tone of caring, such as: "If you don't mind me asking (I do), what's wrong with him?" or "So, not to be rude (you are), but does he like, do anything?"




My response
Now I do recognize that some of this is borne out of curiosity.  BUT, I'm curious about a lot of things that would be inappropriate to say out loud (i.e. "did you intend to sound so ignorant, or does that just come naturally?).  So my typical response is something along the lines of  "I'm sorry, I'm not sure what you mean...............so, uh........."  Awkwardness usually does the trick.

What I'm actually thinking
"You seem to be weird and awful, and I don't see other people asking what's wrong with you. Maybe take a lesson." 


The "better off dead" words of wisdom

Ya, this actually happens.  Not that often, but enough that it's worthy of writing about.  Again, this "wisdom" is typically dispensed by people who don't know Javier or myself that well.  So, it goes something like this: "You know, Javi is just such a blessing; suuuuch a blessing (I know, get on with it). But I just can't help but thinking it would be better for him if he just passed on. That way, you  know, he wouldn't suffer anymore...." Usually these sentiments are expressed with their head cocked to the side to convey real sincerity.



My response
"I don't even know what to say to that. Really, you left me speechless. Goodbye."

What I'm actually thinking
"Did you seriously just tell a MOTHER that you think it would be better if her child were dead?! You literally must be one of the least considerate people of all time.  No wait, you're a sociopath and will probably end up on the news and I'll get to say: I knew it!"


And Finally.......

The public prayer

So, in the nature of full disclosure, this has only happened once.  But it was mortifying enough that it mandates discussion!  There Javi and I were, grocery shopping and minding our own business. A seemingly nice woman approached us in the middle of the store and asked if she could pray for my son. This is a somewhat common event, so I said "sure, thank you." and started to move on.  NOPE! Right there in the milk isle, she stepped in front of us, placed her hand on his forehead, and proceeded to LOUDLY command Jesus to "Take the illness from this child!" A small crowd of onlookers gathered for the 1-2 minutes this was going on.  Javi laughed.  I blushed......a lot.




My response
Momentary paralysis, confusion and a small utterance of: "Um.......thank you?" before running from the store.

What I'm actually thinking
 "Did that just happen, like really just happen? Or was I transported to some alternate universe where its appropriate to touch other people's kids and embarrass them for all of time? ugghhhhhhhh!"




This is by no means a comprehensive list of the types of interactions we're constantly faced with. And again, it's annoying. So I just have one request of everyone out there: ACT NORMAL! He's a kid.  Similar to other kids.  He likes to laugh and watch tv and play baseball with friends and do cool stuff. If you cant manage to act normally, then at least don't be super weird or rude. We'd appreciate it.  Thanks.