Friday, April 11, 2014

The Hardest Job I've Ever Loved!

One of the hardest things I've had to do is raise children with developmental disabilities.  I have spent many moments alone just crying out asking why me?  I honestly do not feel qualified to raise them.  I've endured a lot of criticism over the years from family because of things they do not understand.  It wasn't until I gave my life to Christ did I switch my focus regarding my daughters. Do not misunderstand me, I love my daughters with everything that is in me.  But I would be lying if I said I didn't wish things were different.  I've often cried out to the Lord asking why He gave me daughters with disabilities?!! 

April is Autism awareness month.  My prayer is that everyone out there would learn more about this.  I pray you become aware of what its like having a child that isn't like everyone else.  When you head to the store and see a child screaming do not assume they are spoiled or the parents just need to discipline more. 

When we started homeschooling 8 years ago I jumped in not really knowing what to do next.  I knew it was the best thing for my children.  Even my son who doesn't have any disabilities.  We did not have a definite diagnosis for our daughters.  Getting a diagnosis on paper was going to prove to be the longest and toughest battle I had ever fought.  Every time we reached out to professionals regarding a diagnosis we were always met with a brick wall.  It wasn't until last spring everything started falling into place after a horrible event.  God does use EVERYTHING for His purpose.  It was this event that really got the ball moving. 

My sister use to work for an organization called Easter Seals.  She had mentioned previously that I should take the girls there.  For whatever reason I had not done so.  But now that the girls are getting older I needed something on paper so they could start getting the services they needed.  So we began the process.  There is a ton of paperwork involved with getting a diagnosis.  I filled out the paperwork and then waited....and waited some more.  After about 9 moths we finally had the appointments for the testing.  It was 3 days worth of tests she had to go through.  Then there was more waiting.  In January we finally got the official diagnosis on paper. 

I remember opening up the report of findings.  I started reading and one phrase jumped off the page "Autism".  Then as I continued to read I saw another phrase that knocked the wind out of me, "Intellectual Disability".  It is the new term for mental retardation.  It was all so overwhelming to me.  You would have thought I would feel relief while reading it.  But I started to feel the tears streaming down my face.  I couldn't stop them.  I wasn't sure if it was because of the diagnosis or a relief that we finally had one.  It was most likely a combination of the two.  For 16 years I had fought doctors and medical professionals.  I suppose I had just come to terms with the fact we may never have an official diagnosis.  I highly recommend Easter Seals to anyone in a situation like ours.

Now we are in the next steps of obtaining services for our daughter.  We are working closely with our local ARC office.  They have been wonderful!!  I can see God's hand in everything we are doing.  Paperwork has been approved in weeks instead of the months we had been told it would take.  It really hasn't hit me we are ending this road of trying to get these services for her.  We are also starting the same journey with our oldest daughter. 

Tonight on Facebook someone posted a song called "We'll Get By (the autism song)".  I sat here in the quiet of my living room once again with the warm tears streaming down my face.  It is hard for me to put into words all of what I'm feeling.  No parent wants to admit there is something "wrong" with your child.  But it is reality for us.  We know that God does not make mistakes.  He knew what He was doing when He was forming her in my womb.  I have to admit the WHY is still there.  Have listen to the song...but keep the tissues handy.


Christine said...

My heart is so heavy for you. I am so sorry for this pain. We don't deal with autism, but there are other serious issues here. I don't ask why anymore, but I do have to remind myself not to wonder about their futures. God has a plan for their futures just as he has a plan for each day. We are not responsible for securing tomorrow for them, but just loving and caring for them today, and praying for them always. Much prayer will be going out to you over this. Thank you for sharing your burden. It helps it bring glory to God.

Farmlife Chick said...

Beautifully written, Jen. Keep up the good work! You are an inspiration to many!

Julia said...

I can relate to your concerns about your daughters somewhat. I have two grandkids who have Asperger syndrome to different degrees, both are brilliant but have difficulties with social skills.

Good luck with your hopes of getting some help for them. Too bad it took so long...

Mary said...

I agree! Jen, I can only believe the Lord knew you had the vast depths of compassion and love your daughters would need. And truly, you are an inspiration to us all.

Chris said...

Hi Jen, just stopping by to say how delightful your blog is. Thanks so much for sharing. I have recently found your blog and am now following you, and will visit often. Please stop by my blog and perhaps you would like to follow me also. Have a wonderful day. Hugs, Chris