Thursday, November 17, 2011

The final results from blood work

I got a call from the neurologist office yesterday telling me that all of Jacob's blood work came back normal.  Obviously, I was a little confused.  I asked why his arginine was low on the first test and they told me it could have been a lab error or something.  I wondered how they knew this test wasn't a lab error.  I made an appointment for Monday to hear the news in person and to make sure there is nothing else to check for. 

So this was good news, right?  No rare disease, no medication.....

After I hung up I could not stop crying.  I don't know how to explain the way that I feel.  Am I happy that my son doesn't have some rare disease?  Yes.  Of course I am.  But that was an explanation.  That was something that they could test, could treat, could fix.  What in the world do I do now?  I called my husband, hysterical and barely able to speak, but somehow managed to tell him the news.  He didn't understand.  He was so excited Jacob was ok.  He told me that I should be thankful.  I knew he was right, but I just got upset.  I want to FIX Jacob.  Honestly, the past couple of weeks have been the hardest in my entire life. I have been just in this daze, waiting to hear the outcome, waiting to hear what my son's life is going to be like.  To tell you the truth, this was the answer that scared me the most.  The nurse told me that most parents do get disappointed when there are no answers.  There is no treatment for autism.  There isn't even a test to test for autism.  Its a huge unknown.  I am just so sad for him and the life I wanted for him.  The life we all want for our children.... to be normal, healthy and happy.  Now the hope that I had in a medication to fix him right away is gone.  Now his life of therapy session after therapy session and never ending doctor appointments is now his reality.  I think if I am being honest with myself I must have been in denial that this was really going to be his life forever.  I just hoped his autism was a symptom of another problem which was going to be fixed.  After all, he has so many medical issues and he isn't growing which isn't typical of regular autism.  I watch those videos of kids with autism and their parents praying that they out-live their children because the government won't take care of them.  It's horrifying actually.  I watch how much of a hard time they have in school. with friends, with family and now I see our reality.  I'm so sad.  Once again, I feel like its all hit me for the first time. 



So where do I go from here?  That's what I have been thinking about.  How do I stop feeling so sad?  How do I manage to keep from crying every fifteen minutes?  I have to keep fighting for him.  I won't accept that there is no cure.  I won't stop searching for answers.  I won't stop praying all day every day for God to heal him.  I won't lose hope for him.  I won't stop being the best mom I can be and I have to stay strong for my children.  I have to teach my other children to be compassionate for the handicapped and helpless.  I have to somehow build in them the desire to help Jacob and others like Jacob so that if Cret and I aren't around, someone will always be here for him.  I have to help raise money for research.  I have to do all that I can to get my sweet baby the best therapy we can afford.  That's my plan.  Through this sadness I will let God's strength prevail and not let this keep me down.  He sees my tears right now and is holding me tightly through this and because of that I have hope. I can say to all you moms out there that even through this pain I KNOW that God has a wonderful plan for Jacob and for your child.  He has a plan for all of this that you and I can not even begin to understand and may not until we get to heaven, but because I trust God I am choosing to honor Him and thank him for Jacob's autism.  I am thankful for the lessons I am learning, the man that Jacob will become and I will remain hopeful that he will eventually be able to live a normal life, loving and fearing and honoring God.


http://youtu.be/A8JsRxVczmQ  (click to hear)

You must, You must think I'm strong
To give me what I'm going through
Well, forgive me Forgive me if I'm wrong

 But this looks like more than I can do
On my own
I know I'm not strong enough to be

everything that I'm supposed to be
I give up I'm not strong enough
 Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough Strong enough For the both of us
Well, maybe Maybe that's the point

 To reach the point of giving up
Cause when I'm finally Finally at rock bottom

Well, that's when I start looking up And reaching out
I know I'm not strong enough to be

Everything that I'm supposed to be
 I give up I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
 Strong enough Strong enough
Cause I'm broken Down to nothing

 But I'm still holding on to the one thing
You are God and you are strong When I am weak
I can do all things Through Christ who gives me strength

And I don't have to be Strong enough Strong enough
I can do all things Through Christ who gives me strength

 And I don't have to be Strong enough Strong enough
Oh, yeah
I know I'm not strong enough to be

 Everything that I'm supposed to be
 I give up I'm not strong enough
Hands of mercy won't you cover me
 Lord right now I'm asking you to be
Strong enough Strong enough Strong enough