Wednesday, February 5, 2014

Another Perspective

Another perspective.

So…I have to blog something that I know people will disagree with. I have to, because I teach my 12th graders to speak out, to not be cowed by public opinion when there is something they believe in that needs to be spoken.

Today I saw something that made me think, and realized I have to practice what I preach. Ugh.
Seriously, I've had a silly blog written for 2 weeks and haven't posted it. Ugh. But this...just wrote itself.
So please, if you read this, just hear this as a different perspective. Not a judgment, not a rant, just a perspective that I think sometimes is missed…a perspective that comes from my faith tradition, but also from my role as mom to two NF children, one with a moderate case, one with a severe case, wife to a man with NF, and advocate for kids with NF.  Everything here really is meant to be said with great respect and lack of judgment: if it comes across otherwise, please forgive my clumsy use of language. I truly just want to present a perspective that isn’t always spoken.

And I get that people may very well have the opposite opinion. That's ok.
Can you tell I hate stirring the pot? sigh.

Anyway, I saw an online article today about a family that used a new technique called pre-implantation genetic screening before  IVF to make sure that they had a child who does not have NF.  (Boy-born-free-of-potentially-deadly-gene-thanks-to-IVF-screening)Embryos were examined, and the one eventually implanted was found to be NF free. The family is very happy with their child (which makes sense, children are a huge blessing, and this family obviously thought long and hard about how best to have their family). Doctors are pleased that the "controversial" selection process worked so seamlessly.

And I felt...uneasy.
I just felt troubled by this process, the selection process, I guess. Because where scientists see NF the disorder FIRST, I see my NF children, children who by this process would not have been born.

I get it, I do, the fear parents have when one has NF, the knowledge that even a parent with a mild case can have a child with a more severe case. I have that t-shirt in blue, pink, and purple.  And I understand, heck, I work very hard to fund research to make NF NOT destroy my children.  We’ve had some close calls in this house.  Really close.

This week was MRI week for my child with the severe case of NF. We compared this scan to the one that showed massive tumor progression in an inoperable location in May 2012. I get how bad NF can be.
And yes, my children have endured suffering. This is the worst part of parenting, seeing my children suffer—but I also see them thrive, and succeed, and bless others. I see them laugh with friends, sled down a hill, go to school, dance in the Nutcracker…heck, my second born danced in the Nutcracker (in the way she does) 4 days after brain surgery.  And when she was up there being a Lead Gingerbread, her hair carefully arranged over the surgical incision, and with all the little kids twirling around her, I didn’t see NF. I saw my child.

Yesterday my youngest got her back handspring alone for the first time. I saw my child, not NF.
When our little buddy calls for G to help him with his chemo, even DURING HIS CHEMO we see this riotously funny and spunky kid, (and often his cat), NOT NF.

When G’s friend pins her latest nail polish design on Pinterest, we see a hugely styling and creative kid, not NF.

When a friend out west sings his heart out at karaoke, we see a boy with the voice of an angel, not NF.
When we hung out with our friend Sandra, we laughed, we watched Sponge Bob, we ate ice cream, we saw her amazing heart and spirit in everything she did, even as NF took her from us.  We saw HER, not NF.

All of these children…well, that’s what I see. That’s my perspective. 

There’s no such thing as life without pain. Well before I had heard of NF, LONG before I could spell it, I had pain in my life. Much of my own life journey has been trying to focus on the joy in life. My children are joy. Ok, they drive me insane, too, but really—their lives better the world. And they love life.
At teacher meetings this year, my youngest daughter’s teacher told me this: that my R had said that yes, sometimes NF and brain tumors are hard, but because of them our family has gotten to meet such wonderful people, such kind and amazing people, such great friends.  Her teacher got choked up telling me this, and honestly, I was …well, what do you even say to that? A few weeks later at home my R said the same thing to me, her head tilted to one side, her crazy hair loose around her face. “We are pretty lucky, mom, we know so many great people because of NF and brain tumors.”

Yes, we are.
An NF mom once said to me that her NF child sometimes felt sad when he saw the tagline END NF. He took it personally.  I think that’s kind of the same moment here—I understand why families may want to make this choice, and I do not judge them for it—I just see this through the lens of a different perspective—I see MY NF children as not making the cut in this process.  I would hate to have lost them to NF before they were even born.

And while we will NEVER stop working for better treatments, for more research, for a cure (my brain is dizzy some days from reading about MEK inhibitors and bRAF this and that) —we hold on to this perspective that sees the person first: with all that may entail, the unique, amazing, mighty, funny, loving, compassionate, persevering kids and adults we know and love…and the disorder second.  My husband has said that his experiences with NF have made him the man he is today—one who never judges by appearance (EVER), one who is always ready to help, to lend a hand, to show compassion, to work hard for his goals.  I hope and pray my girls get to grow up…and be like their dad, and the other amazing NF grownups we know.
That said, I better go work on stuff for our next fundraiser, our Coffeehouse for a Cure…FOR NF! 

Thanks—I know folks may vehemently disagree with me, and I respect that. I hope that folks can respect this perspective too.


  1. K - I feel your post. I would not have chosen a brain tumor for my kid, but because of it, I found you - and EVERYONE else who walked along with me - which I feel like is a blessing! The journey sucked at times, no doubt, but I wouldn't have it any other way. I just feel like there are some things we aren't meant to have control over... I'm glad I didn't have a choice between Josh and a cancer-free child because I cannot imagine my life without Josh!

  2. This is one of the most compelling humanist arguments I have read in a very long time. Thank you for speaking so thoughtfully to the problem, and to reminding us all that life is beautiful - in all its forms - not just the ones some book tells us are worthy.
    I want to share this - I won't post it on my wall (I know better) but this brings hope. And this reminds us what beauty really is - not just the prettiness of perfection - an elusive end that doesn't exist - but the beauty of struggle and community and love and the human person.

  3. Well said, friend, you know where I stand on this issue. IVF is an amazing gift. Let's be respectful of all gifts.
    Others are sincere in how they process their decisions concerning implantation,
    but I wouldn't have 'missed' Nora for the world of normal. Her difficulties were not hard in her eyes. It was what she knew, and she was thankful for it all. Struggling is a human condition and it is only 'temporary'. Go CoffeeHouseForTheCure!