a bump in the road

Where to begin?  As is usually the case, when I am absent from blogging for a time it is usually because things are going on in our house.  This week there was the usual busyness.... and then there was the exceptionally hard.

I've struggled with how much to share here with issues concerning my children.  I want to respect them and their privacy and I hope I always do that.  But this is also the place where I process and share with a few close friends the daily ins and outs of what is our life.  I find encouragement here and hopefully can at times be the encourager as we see together that none of us are alone in our struggles.

As I've alluded to before, we have had concerns for a while that Jacob was dealing with some developmental delays.  First with speech, then over time we've noticed other things that have caused us to be concerned.  Initially, my pediatrician dismissed our concerns, but over time and different paths (and a different doctor) we were finally able to see a neuro-developmental pediatrician and address some of the issues.

This Tuesday we went in for his official evaluation with a multidisciplinary team of doctors.  The appointment took all of 5 hours, full of questions and observation and them trying to engage Jacob.  After the evaluation, the doctors met and came back to us an hour later with a diagnosis and a plan.

The diagnosis they gave him is Autism Spectrum Disorder, specifically PDD-NOS.  He was clearly on the autism spectrum in several areas they evaluated.  During the evaluation it was obvious and painful to watch him struggle with what they were asking of him.  We left with a plan for years of language therapy, occupational therapy, ABA (behavioral) therapy, a ton of reading material and even more questions.

First, I will say that I am thankful many things in this situation.  God has provided for us in so many ways.  We've already connected with resources here and with people who have children with ASD.  We see that God is already meeting our every need.  Through Ken's job, most of Jacob's therapy will be covered by insurance which is an enormous blessing because that isn't usually the case.  God has gone before us and provided for us, as He always has.

That being said, the whole thing just pretty much stinks.  As much as we knew that something was wrong, we really just wanted to believe that this was just a bump in the road, that he was just a little behind and he would catch up.  The older he gets, the more obvious it gets that that is not the case.  As I watch him now, now that we know, I can see it all so clearly.  Alot of his symptoms have gotten worse rather than better, and I really can't even describe what it feels like to see that.

As we are reading and learning, I am fighting discouragement.  We are dealing with, as the doctor put it, a "lifelong diagnosis."  There is treatment, but no cure.  I am afraid of what the future holds for him.  I am also afraid for Nathan because, due to the genetic factor, his odds of having a similar diagnosis are now 10 times higher.  I really want to pound my fists and scream that this is NOT what I want for my children.  

But.  This is where we are.  I am holding on to the fact that God created Jacob.  He made him exactly the way he is for His purpose.  He intends this for good in Jacob's life and He will never leave him for forsake Him.  He will also walk with us through this... as we pray and decide and seek and ask... He is with us.

I have so, so many questions but am resting in the knowledge that I don't have to have all the answers, because I am trusting in the One who does.  As I have watched Jacob the past couple of days, it has been harder than ever because I "see" the disorder.  Everything he does, I see as an autistic behavior.  It is and it was before, but I didn't realize it before and now I do.  I'm really praying right now for God to just allow me to see Jacob again as He sees him... not for what he can or can't do, but for the beautiful creation that he is.

He is so much for than any one phrase can describe.  He is fun and loving and affectionate.  He makes us laugh, tells jokes and loves to read.  He is gentle and kind, a wonderful son and a great brother.  I am so thankful for this little guy.  Exactly the way he is.  As hard as this is, I wouldn't change him for the world.  I love his heart.  What I would change is the struggle that he is facing.  No mother wants to see their child hurt.  I don't want him to be sad or discouraged or scared.  The thought of someone making fun of him makes me furious.

But.  I know that God is with him through this.  He is his protector and provider and He will make a way for him.  We are praying for healing for Jacob.  As we are doing this and pursuing treatment for him, it will effect our whole family.  So, we are praying for our other kids as well, who need us just as much as Jake does.  

I am overwhelmed.  The time and resources this journey will take.... spiritually, emotionally, mentally, financially... only God can provide these things.  But He is God and I am not, so we trust.  He is the same God as He was last week.  And He will be the same next week.  We are trusting Him to carry us all and we are giving thanks for all the good things He has given us, even in the midst of this.  It sounds trite to say that it could be so much worse, but really it could.  He has given us so much... and in the big picture, this really is just a bump in the road.

Today on my friend Jen's blog, I read this timely excerpt from "Streams in the Desert".  Just one more way that we are being encouraged:

"Perfect through suffering." (Hebrews 2:10)

Steel is iron plus fire. Soil is rock, plus heat, or glacier crushing. Linen is flax plus the bath that cleans, the comb that separates, and the flail that pounds, and the shuttle that weaves. Human character must have a plus attached to it. The world does not forget great characters. But great characters are not made of luxuries, they are made by suffering. 

I heard a mother who brought into her home as a companion to her own son, a crippled boy who was also a hunchback. She had warned her boy to be very careful in his relations to him, and not to touch the sensitive part of his life but go right on playing with him as if he were an ordinary boy. She listened to her son as they were playing; and after a few minutes he said to his companion: "Do you know what you have got on your back?" The little hunchback was embarrassed , and he hesitated a moment. The boy said: "It is the box in which your wings are; and some day God is going to cut it open, and then you will fly away and be an angel." 

Some day, God is going to reveal the fact to every Christian, that the very principles they now rebel against, have been the instruments which He used in perfecting their characters and moulding them into perfection, polished stones for His great building yonder.- Cortland Myers.