Monday, June 27, 2011

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/ 

Stumbo Family Story

10 comments:

CinfulCinnamon said...

There is absolutely NO WAY that I can ever appreciate or understand what a mother of a special needs child goes through. NEVER. In fact, sometimes I feel that God gave me my "so called" normal child because He knew that I would fail the test, if given one that needed special attention. All I can do; as someone on the outside looking in, is try in some humble way to support with my words. I have told Stacie about the guilt that some of us outsiders may feel, and the helplessness. It's not a good excuse for not supporting in any way that we can, but it is all the defense we have. I would say this though. When you hurt inside because of all the things that your daughter is missing, and all the things that she won't be able to do....try to remember that you are looking at all the things that YOU loved about being 15 and growing up. These may not be things that she will be sad about, because she has no frame of reference for these things. Sometimes, in the same way that we wish we could spare our children pain and heartbreak because of the lessons that life has taught us; so too has God spared your child of some of the pain and heartbreak by never having to face those things. No, your child will never drive herself. But she also will not be responsible for causing any traffic accidents by being a young inexperienced driver. Its not much to rejoice over I know but it's all I have. Thank you for guest posting here, I learn more everyday.

Shasta said...

Yup. Special Needs parenting sucks for the most part.

This is not nearly as eloquent as the comment you left me, Stacie, but it's all I got at the moment!

Shasta said...

P.S. I like what the commenter above has to say, but cinfulcinnamon, if you had a special needs child, you would do it all too, because that's what moms do. We aren't extraordinary, just put in extraordinary circumstances.

Anonymous said...

It's difficult to ask for what you need sometimes. Support? Sympathy? Prayers? There are people aching to help. Aching to know what you need.

Anonymous said...

You are never closer to Heaven than when you hold a special child....I have been very close to Heaven. Thank you for allowing me that blessing if just for a moment..

Alex said...

Beautiful blog..looking forward to reading more.

Alex

Leah Kelley said...

I am visiting from the Kat's blog hop. I love your blog and the format is beautiful...

Your post touches me as well...

Here is a post I did on grief. Perhaps it will speak to you...
http://30daysofautism.wordpress.com/2011/05/13/let-the-tears-come-dealing-with-grief-and-letting-go/

Ellen Stumbo said...

Although I have grieved for Nina's diagnosis, there are times where something comes around and I have to grieve all over again.
oh but the love we experience! Unconditional love becomes exactly that, unconditional! And what a beautiful gift we are then given because of our kids!
Thanks for joining the CP Connection!

ErinL said...

Hello! I am part of the CP connection and stopped in to read this heartfelt and wonderful post. There is nothing quite like knowing that you are not alone in all of this!

Becky said...

Hi! I'm part of the CP connection and clicked over to read your blog. What a great post. I know that how fast the CP connection grew was very comforting.... having others in the thick of it with you.