Thursday, January 10, 2013

I'm having a hard time...

There are days when I feel okay and ready to do what is needed to help Noah.

These last few days... not so much. Grief, sadness, fear and regrets creep up on me and I feel paralyzed.

I have a hard time seeing the regression and difficulties Noah has with learning. We go over the same words and activities every day... over and over and over and over... and some days he gets it, other days he acts like he forgets. He struggles to spit out words... it is painful to watch it. There are days when he zones out and I feel like he leaves us. I don't know how to take him out of this fog he is in.

I want so badly to give him the therapy he needs, the hours he needs.... but I am hindered by finances and no insurance coverage for this therapy. I don't know how we are going to afford this... I really don't. His diet alone is costing a fortune. I leave the grocery store with just a few bags and it is almost $100 a trip. The DAN! doctor consultation visit is almost $700!

It is a fight just to get him help- waiting lists everywhere (for ABA and speech therapy)... 4-6 months of waiting! That is too long when early intervention is key. Then, while you are waiting, no one is willing to train you to do the therapy yourselves. You have to read books and try to figure it out.

And then there is support--- as soon as my friends and family found out about my situation with Noah, many disappeared.... I have never felt so alone in my life. I don't really understand why... maybe they just don't know what to say to me or they think I am too busy to be bothered. It is very hurtful. My sisters... my brother---- where are they? Why haven't they just called to check on me?

A few nights ago I looked at all of Noah's pics since his birth. I noticed that he went from a smiling, interactive, happy child to a child that rarely makes sustained eye contact, zones out and will no longer smile at the camera. The change occurred from 9 months to 12 months.  What occurred during this time??? Shots at 9 months and then 3 ear infections with 4 rounds of antibiotics....

So, I am now struggling with regrets and with self blame. Should I have not received the flu vaccine while pregnant? Should I have not had as many ultrasounds? Should I have limited Noah's TV time? Should I have allowed him to be around more children early in life? Should I have not allowed vaccines? Should I have questioned the overuse of antibiotics? Should I have picked up on these changes in Noah and intervened sooner? Would this have changed the course of this disorder and prevented it?  I don't really know how not to blame myself for this--- I was supposed to protect him and make sure he was doing okay and I failed.

I know that I will have better days and that I will look back at this time (and this journal entry) and feel differently.... I just don't know how this is going to pan out. I really don't. I want to trust that God is going to handle it... that He is going to provide.... but I don't feel it right now. I don't know why this would happen... especially to little Noah. He is the sweetest little boy and he deserves the best in life.

I am praying for the Lord to give me peace in this storm

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