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.

The Pacific

The first time I saw the ocean, I was 7 years old.  Coming from the Midwest, I remember the wonder I felt upon laying eyes on something so massive.  As I grew older and continued to travel, my marvel with the ocean never diminished.  I can now classify it as nothing less than a spiritual experience.  So, when Javier was born,  I knew that taking him to the ocean was essential.  However, I was unaware how challenging that task would be.

Javier turned 8 in May, and with great pride and sadness we celebrated another year.  Pride is, I believe, something every parent feels with the growth of their child.  However, I felt saddened
when I realized that Javi had never ventured out of our little world in the Midwest; and his time in the Midwest consisted of a rather mundane routine of school, doctors and home.  I had spent much of my time since becoming a mother traveling; using it as a sort of respite, but had never been brave enough to do it with him.  I was afraid.  I was nervous about flying with him, about being away from our beloved Gillette, about changing his routine: everything.  But this year, it suddenly seemed far more haunting to me that Javier could live his entire life and never see the majesty of the world.  So I did the only rational thing I could think of.  We sold all of our stuff, packed some suitcases, hopped on a plane and moved to Alaska.

I wish I could say "it was easy", the end.  Or even, "it has had its challenges but its great", the end.  But what fun are things of ease?  We landed in Alaska on September 3rd.  The flight went well, though the preparation was something of a hellish nightmare (though a lot of great work was done on the part of the Delta CRO office in Minneapolis who planned the entire trip and made the flight possible at all). Luckily, we had a house waiting for us which was already partially occupied by my best friends from high school and their 3 little girls that we moved into that night. 

On September 7th, my mother (she was along to help with the move), Javier and myself made the drive from Anchorage to Homer, AK.  For those of you who have never been, it is a place of dreams.  We pulled our rental car down near the beach and I unloaded his wheelchair from the back.  I noticed a slight tremor in my hand as the knowledge that something quite significant was about to happen washed over me.  I loaded little Javi into his wheelchair, and pushed him down through the rocks and onto the sand. The sun hit his face, and all of the glory of the world was before him.  I stepped back, and remembered how I felt at his age when I took it all in for the first time.  A few tears rolled over my cheeks as I acknowledged the accomplishment that we had just made. The world was his, and never would he be the same; nor would the world.

So, even though getting him to the ocean was one of the most daunting tasks I have yet undertaken, there is nothing I would change about it.  That was the moment of a lifetime for me. 

"What about contributing to society?"

Last night, my sister and I were talking, and she posed an interesting question.  "Elee, what do I say to people when they say that Javi will never contribute to society?"  This question interests me, because it is inquired by many.  The idea is that people who cannot or do not contribute to society by financial means are somehow less human than those who do.  For example, there is an overwhelming anger held in our society for people who "leech off of the system"; those who do not work yet collect money from the government.  American culture teaches us that to be of value, one must work and contribute positively to society.  If you do not, you are relegated to a low social status and regarded as a failure.  This value is evident in our daily interactions.  When a person is introduced to another, one of the first questions asked is "what do you do?"  This is because we define a person by their work; what kind of contributions they make to the world.

So how does all of this relate to my Javi? Well, to be blunt, Javi will never contribute to society in the traditional sense.  He will never hold a job, pay taxes, or vote.  Not because he chooses not to, but because he can't.  I could describe the many tertiary ways in which he has already contributed to society through the people he comes in contact with and the inspiration he brings, but I want to be straightforward.  He simply will not contribute, and will use public funding to assist him in his life.  In fact, the tax dollars that those of you reading this pay will contribute to the education, housing, medical care, and personal cares of my son.  How does that make you feel?

Now, lets think about this even further.  If I had known that Javi was going to be severely disabled, unable to work and pay taxes, yet still chose to become pregnant and birth this child, then how would you feel? The question I truly raise is, is his life less worth living because of an inability to meet societal standards of value?

My response, of course, is no.  Disability, though it is relegated to the abnormal; is the norm.  Most people will experience short or long term disability at some point in their lives either through themselves or a family member.  People with disabilities, are people too.  They think, feel, experience the world in much the same way that those without disabilities do.  Many, many, many people with disabilities work and contribute largely to society through this, however,  some do not at all.  But they still deserve; no, they are entitled to a life. Additionally, society should consider the ways in which people can contribute to society in means other than through work.

Javier, as a child, contributes to society in many ways.  First, he has inspired my sister and I to work with and serve the disabled community.  Without Javier, we likely would not have chosen this path.  Next, he offers selfless friendship to anyone who gives him a chance.  He provides great love to the people in his life, never judging or demeaning others.  This all counts for something; actually, it counts for a lot. 

So, in response to my sisters question: "Elee, what do I say to people when they say that Javi will never contribute to society?"

You tell them, that he already has.

Buying a home

So here we are, a mom and a son.  Him, 6;  me, 25.  We're ready to buy our first home and plant our roots.  Call someplace our own.  We imagine fun summer days in the backyard, with cookouts and friends!  We think of evenings watching movies together, laughing joyously. We imagine our home.


But as I am finding out, our imaginations may be a little wild; and us: delusional.  Universal design is slowly catching on in public spaces, but this is clearly not the case in the home-buyers market.  I was expecting some challenges when considering homes built in the 1950s.  However, even new built town-homes have massive staircases.

For a person in a wheelchair, these staircases may as well be  a mountain, because no matter how you try, you're not getting up them.  Sure, for an added cost we could reconfigure the entire space; pending approval of an association; to make the home accessible.  This often includes widening hallways and doors, increasing the bathroom size, adding ramps or elevators, opening the shower space and lowering countertops.  OR we could always move into a senior living community- though not exactly fit for a 6 year old kid and a 25 year old mom. 

I considered moving into a house that has bedrooms on the main floor, with added space upstairs or down.  But I figured it may feel bad to live in a home in which you could only access part of the space.   I can see the scenario now:

Me: "Hey babe, have fun downstairs, we're all going upstairs to watch a movie.  We'll see you soon."

Definitely not an option.

For now, we will just have to take what we can get, and find a way to make it work.  But it makes me wonder, why does my son need to modify his behavior for the environment, rather than the environment modifying itself for him?

about us

I'm the 27 year old mom of a great little man with cerebral palsy.  He is 8 now, and as he ages, the challenges become bigger and bigger.  Him and I do fine, great actually.  But it's hard living in a world that is not accommodating; or even accessible; to my child in a wheelchair.  So, we have a story to tell.  We have daily adventures in this world: some good, some bad, some just confusing.  But we want to tell it.