From the Brain and Tissue Bank

*WARNING: This post is a little graphic and may not be for the faint-of-heart.

NKH is very rare.  There are less than 500 people world-wide, living with it even now.  This week, our NKH Family lost two precious boys.  And while they are complete and whole now, the pain and suffering they endured on earth does not go unnoticed and the tragedy of their deaths has crippled their parents and everyone who loved them here on earth.  Sadly, this isn't new to us as NKH is considered "terminal".  I honestly cannot tell you how many children have died since we started our journey over nine years ago.  It's painful to think about.

With so few people around the world having NKH, and with it being considered "terminal", there isn't much research being done.  In fact, many doctors do not even know about it, and if they do, their information is sometimes terribly outdated.  One leading doctor here in the US, Dr. Johan Van Hove,  has dedicated his life to researching NKH.  He is the one we have seen in Denver and whom we have met with at all of the NKH Conferences in which we've attended.  We've seen so many families affected; so many children pass away . . . it causes a fire to burn and an urge to fight, if not for a cure, at the very least for better treatment for our children.  As NKH parents, we want them to be able to live better lives, lives that are not filled with chronic pain, seizures, GI issues, cerebral palsy, etc.  We want them to live lives that are filled with eating for pleasure, walking, playing with other children, and maybe even talking!  These things are a possibility because of research, but more of it needs to be done.

When Ellie Kate first went on hospice before she was one year of age, we decided to donate her brain to NKH research.  The leading NKH doctor had talked to us and we knew that NKH brains were needed.  They would help research in so many ways.  So when Ellie Kate went home on hospice in December 2012, we called Dr. Van Hove at Denver Children's Hospital and told him that we once again had decided to donate Ellie's brain and any other tissues that could be helpful in finding better treatment for this awful genetic disease.  This isn't a decision that everyone can make, and I fully understand that.  And I would never judge someone for choosing not to donate their loved ones organs, even if it is for NKH research.  It is an extremely private, intimate decision that only the closest family members can be allowed to make.  And we must respect the decisions that are made and support those who make them.

Today we received a letter from the University of Maryland's Brain and Tissue Bank, the place where Ellie Kate's brain was sent.  I knew what it was before I opened it.  It was the pathology report; the final report on Our Daughter; over two years later.  I let the letter sit there for a while and I debated reading it on my own.  But, Lucy was asleep and the boys were entertained in our bedroom, so I had the living room quiet and all to myself.  I was at peace with opening it, and so I did. 

There isn't much that I gleaned from that report; not much that I could understand.  After all, it was a forensic pathology report and I am not a doctor.  I'm sure the report will be explained to us by our trusted doctors here at some point, and the report of course went to Dr. Van Hove for research.  But, on the last page of that letter, there was a picture.  A microscopic picture of portions of EK's little brain.  Two pictures, actually.  And when I saw them, I broke down.  I wasn't expecting pictures.  I didn't know what to think about that. 

All of a sudden, during my sobbing, my fingers touched those photos.  I did that with Ellie Kate's pictures a lot that first year after she died.  Touching a photo is like touching her, in a way.  And it was no different with these photos.  And that surprised me.  Before I knew it, I was thanking God.  I was thanking God that I had a NEW picture of Ellie Kate.  I know that sounds so strange, Friends and if you haven't lost a loved one, then I don't think you will understand that this reaction is "okay", but it is.  It's okay.  I am SO grateful, that even after My Daughter died, I was able to see a picture of a part of her - a part of her that grew inside of me.  How precious is that?  Twistedly precious?  Maybe so, but precious to me nonetheless.  I. Am. Grateful.  God knew, back when I signed the papers to donate, that a little over two years in the future, I would need to see a picture of Ellie Kate.  He's Sovereign and what happened today was NOT an accident, of that I am sure.  I want to be clear: I do not see this as a cruel act; that this letter had to come to us and that we had to see those pictures.  I'm thankful that I have a God, who is so tender-hearted, that He sent this to me on this day, for His purpose.  It is for my good.  For Mike's good.  It's a gift - that's how I choose to see it. 

I don't know how to end this post.  I truly hope it wasn't too upsetting for you to read.  I don't want that at all.  What I want from this blog is for all of you to see the good, bad and ugly of the life of a special-needs family; the life of a family dealing with child-loss, while striving to love Jesus with all of their hearts (and we so often fail, just like everyone else).  We do have a prayer request tonight - Lucy had a lot of seizures today and is still having diarrhea (going on three weeks now although nothing has grown in cultures - yay!).  Would you pray that she isn't getting sick?  And, Friends - love your babies.  Take lots of pictures.  Cherish the ones you love while they are here on earth with you. 

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