Mar 22, 2011

What's your legacy?

I Do have other children besides Manny.  Most of you know that, some might not.  Well this blog is about some of them. 

Jacob, our oldest, is 12.  We adopted him when he was 19 months old (so basically Manny's age).  And he came to us with several special needs.  He had been drug addicted at birth and that was complicated by being in a less than ideal foster home.  And of course, there were very low expectations for him by those in the foster system.  He came to our home and started to blossom.  I could tell you stories that make you bawl about those early days. 

Eventually "love" had conquered basically all it could.  And what was left was a little boy who was high functioning autistic/asperger's, some hydrocephalus (though he is non-shunted) and very few other medical conditions. 

Until last Summer. 

He'd been sleeping more than normal and tired more than normal.  Didn't think much of it as he is growing very fast and what almost teenage boy doesn't do that?

12 year old check up in July.  Proteinuria very, very high.  Normal is under 30.  His was over 3000.  By the time the docs had run all the tests to rule in/rule out everything, his number was over 4000.  And his creatinine levels were 2.4 (3 is dialysis).  FSGS was confirmed upon biopsy.  And due to his age, gender and race, his prognosis is not good. The 5 year survival rate is very, very low. 

But this diagnosis came only 6 weeks after Manny's "terminal" diagnosis.  So we were already fighting for the life of one kid, why not two?  Clearly God has plans for both of these little guys.  God is the healer for all people. 

Due to his extreme fatigue (and other factors) we decided to keep Jacob home this year and home school him.  That has been the right decision for sure.  Yes, I can do a lot better on his math (subject he hates) but you should see the reading list he's finished.  I can't keep this kid in books ... and he has a "photographic" memory so it's all in there too.  (Non fiction is his thing.  I dare you to challenge him on a fact in a book he's read.) 

I work for Dale Carnegie Training as a Master Trainer (meaning I help coach new instructors and mentor them).  We teach a program called Generation Next which is our youth program, ages 12-18.  I'd given Jacob the book How to Win Friends and Influence People (written by Dale Carnegie) and he loved it.  He is very interested in learning how to make friends.  We are always working on his social skills and he is aware he is "awkward" in those social interactions.  I was going to evaluate, not teach this class, so we figured this would be the perfect opportunity to put him in this class. 

He went for 8 weeks and won some awards along the way.  He was by far the youngest in the class but it didn't stop him.  For Graduation, all the families come and celebrate their achievements.  So all 8 of us were there.  When it was time for the other kids to receive praise from their family, only one person would come up typically.  But we all went up (even Manny in his wheelchair).  Dan said something, I said something.  Then Kaley (11) said, "You're a good big brother." and the crowd said, "aaaawwww".  I asked if anyone else had anything and they said no. 

But as we turned to walk to our seats, Zoe (5) was still standing there.  She had something to say.  For those who don't know, Zoe has cleft lip and palate (repaired) and an associated syndrome Hemifacial Microsomia.  Articulation is difficult for her.  We understand her, but this makes her shy around strangers.  So I was shocked she wanted to talk to this crowd of 50 people or so.  She said, "Jacob, you are so smart. You know like everything in the whole world." or something like that.  And I was in tears.

At the graduation, the classmembers vote on some awards.  One is the "Human Relations Champion" and Jacob won!  He got the Golden Book Cube and an Ipod Shuffle.  He was over the moon!! 

Recently, Jacob asked me what happens if he dies from his kidney disease.  (He's in the room when the doctors talk.  He can read.) And while we don't think this will be the way this plays out ... our faith is that God can and will heal Jacob completely... we know that sometimes God Says "No" (I wrote a blog about that recently).  And so we speak the truth to Jacob. 

I tell him how I believe in a loving, merciful Healer God.  I tell Him that He loves Jacob completely.  And that kidneys are nothing for God to heal.  He made the original ones, there's no reason He can fix these or give him new ones.  I tell him stories of healings/miracles we've seen.  I read scriptures of miracles in the Bible.  etc etc etc. 

And he still asks again, "What if I die?"  So we talk about that.  With complete truth.  I tell him that only God knows the number of our days.  That HE is in charge of when we die.  And that truth brings me peace.  I know that Jacob loves God.  I know that Jacob is in the palm of God's hands ... either way ... live or die.  I tell him that we pray Jacob will be with us another 100 years.  But ... when God says it's time to go, it will be fine.  And we talk about that for a while. 

He walks away.  Hours later, Jacob comes back and says he wants to write a book.  He wants to write down his legacy.  He says he has ideas he wants to share with the world.  What it's like to be autistic and what it's like to have kidney disease. 

I can't wait to read it.  I have a feeling it will be an interesting read. 

What about you?  What's your legacy? 


  1. oh wow! What a great idea! Jacob is living such an important story and he is absolutely on the right track in wanting to share it. I would like to pre-order a copy for myself and several for gifts.

  2. You have me crying here. This reminds me so much of our J, now 23 with high functioning autism, reads any books he can get his hands on however doesn't have kidney disease. He read books on chess, on card gams, on hockey, encyclopedias, etc. We couldn't keep him in books, used 5 different libraries. If your son writes a book, I definitely want to purchase one...WTG to him!!! Hugs

  3. bawling here... huggin you through the miles in understanding and loving you and all your kids

  4. Beth, reading your blog after what is a "hard" day for me is so inspiring!! God has placed those children with you for a reason!!