My Life's Reality - Guest Post by Christine

I do not know what's come over me! Literally it hit me yesterday smack in the face as I was discussing getting Johnathan enrolled in school. 

My life became a life of sacrificing my own needs/wants for those of others.

I dreamed of teaching (helping kids); being able to give to those who would someday appreciate it. What have I settled for in a job? -  A bunch of “me, me, me” ungrateful women. There is no "reward" in the job I have; I have so much more to offer this world and will never be able to show it.

I dreamed one day I would watch my children grow and share with them all that I was unable to have growing up and the milestones of life. I have the means, but God has chosen for my girl to struggle through this life while I sit and watch my unappreciative sister’s lack of desire to nurture her child and open the world of opportunity to her.  It kills me to think of all Kaet could have achieved in her life if only she was born "whole". Why was she cheated? 

I would love some mother-daughter time, going shopping, to the salon or even a movie together; all impossible as Kaet gets tired and/or overstimulated easily.

Almost 15 and should be getting excited to learn to drive and for the independence of getting a driver's license. Kaet will always be dependent on others to get her where she needs to go, yet never be able to tell anyone :(

Why was she cheated all life has to offer? – Yes, I know “it is God’s plan and we are not to question, just accept”.  I try to always keep this in mind and pray to him for understanding. 

In the end she is my rock. When I am down I run to her and hold her in my arms and thank God I have her in my life. If she gives me this peace, then why do I hurt so? 

Being the mom of a special child sure does have its own reward, but it also wears you down when you feel so trapped and secluded from the rest of the world because of the limitations placed on them. 

Yes, I know that some say our special needs children are only trapped by their limitations if we let them be; easier said than done. All the work that it takes just to get to and from the necessary doctor/therapy appointments with these children is exhausting; then add in the full time job on top of it; I just don’t have that much left in me. 

We are not alone in this journey... It is okay to feel.  Christine

Note from Stacie:
Christine's words hit me hard... every word rings true for me and reading her words brought the tears back to me.  Unfortunately, no one really wants to know including our families and we must keep it to ourselves as best we can.  It is also quite difficult to function while we carry all this grief.  She reminds me why I attempt this little niche blog... there really are other parents out there feeling just like we do and doing everything to offer their child the happiest life possible.  We can support each other through the miracle of the internet.

"Accepting a bit of Insanity"  on KatsCafe.org also explores the depression special needs parents face.

http://30daysofautism.wordpress.com/2011/05/13/let-the-tears-come-dealing-with-grief-and-letting-go/ shares the difficult decisions made by a mom of a child with autism.

Here is another post regarding disability and grief... http://www.differentdream.com/2011/06/how-to-cope-handling-constant-subtle-grief/ 

Just in Time: Tim Gort's "Good Grief. Bad Grief."

"...To me, the difference between good grief and bad grief is that good is the kind that you don’t bury.
Instead, you pull it up to the top by talking about it, sharing it with others, writing about it and learning to accept it for what it is – a physical, emotional or spiritual end that needs to have resolution in order for you to peacefully move on (with special needs children it can certainly be categorized as hopes, dreams and expectations or much more).

Bad grief, on the other hand, is the kind that can fester and cause you to live life harder because you have emotions or communications that are unresolved. The bad affects all of your relationships over the long haul. Think about loss of any kind – physical, emotional or spiritual – and you might find that they have had a dramatic affect on your life..."

Perfect timing on this post by Tim Gort.  I was just questioning why I need to blog about special needs and wondering if I should stop.  I see my mission clearly enough, but am so far a little shy of my goal.  Writing as the mother of a special needs child is at risk of being one dimensional.  I am limited further by not intending to be a full-disclosure and a reluctance to speak for my husband.  He is just as much a part of this process and wounded by Riley's disabilities every bit as much as I am.

Writing about this subject certainly exposes the raw emotions of my family.  It also opens me up to even more misinterpretation when I am trying to create just the opposite with some understanding.  Should I choose to go forward I have quite a task ahead of me.  Please be patient with this process.  Most importantly I am trying to share the experience and not trying to solve anything by it.  I share it for those who may benefit, perhaps grandparents, aunts and uncles who are in a position to need insight.

Thank you all for understanding and not trying to fix it:-)  Our future is for us to discover.  Stacie