Monday, February 10, 2014

Marcus Gunn

I have this little boy.  This rough-and-tumble, adventurous, brilliant, sensitive, kind-hearted, loyal-to-the-last, slightly stubborn and quick-tempered warrior of a frog-loving little boy.

And I have no words to describe how my heart overflows at the thought of him.

First Week of Homeschool
Fall 2013
Oh, he's the one that, a few years back, planned to marry me, alright.  Until Daddy said I was already married to him, and that he's not willing to share.  Then my little suitor settled on growing up and building his own house in the back yard, so he could just walk in through the back door anytime he wanted to see his Mama.

He's the one that somberly informed me that if there was ever a war nearby, he would fight right in front of me so no bad guys could get to me.  I have no doubt in my mind that he would, too; he comes running to my rescue whenever Daddy teases me, growling ferociously and facing even the most dreaded tickle hand in an effort to protect me, the one he loves more than any other.  

This is the same little boy that insists that he's never getting married.
"I never want to have to love another lady more than I love you, Mama."

Be still my heart.

I adore this boy.

This past week, he started asking questions...questions I knew he would ask someday soon.

Mr. C has a rare phenomenon called Marcus Gunn Jaw Winking Syndrome.  Never heard of it?  Not surprising.  Neither had we, until a few months after he was born.  It felt like a heavy blow when we first heard the diagnosis:

Marcus Gunn Jaw Winking Syndrome.
Miswired nerves connecting jaw movement to eyelid.
Prominent winking of affected eyelid, most noticeable while chewing/drinking.
Permanent condition.

Ptosis (droopy eyelid).
Possible need for corrective surgery.
Possible repeat surgeries needed every few years as child grows.
Potential for permanent damage of sight in affected eye if not addressed.

When you have a newborn baby - a tiny, helpless piece of your heart that lives and breathes on his own - and he's lying there newborn-limp up against your body, as if your mere presence could solve all the world's problems...when you're in a dark square room with light and chair and white coat and file folder, notes scribbled down...when your throat is dry and your head is spinning...when you're in that place...

...there are few feelings that could be worse than learning that there is something permanently "wrong" with your child.

Mr. C at age two
And then the shock wears off, and weeks and months go by, and you get a second opinion from a great pediatric ophthalmologist who reassures you and promises routine monitoring to catch when or if surgery is needed.  And things get a bit less scary.

In the meantime, you fall more head-over-heels in love with this little winking baby whose face lights up when you enter the room.  You soon forget that the world may see a flaw in his precious face.  His winking eyelid...the way it flutters when you nurse him or when he chews his first foods, the way he pops his eye open as wide as his smile when he sees you, and how he lets it fall closed in the bright sunlight.  The way you can always tell how tired he is by how much of his eye is opened, and oh, how that little wink melts your heart into a puddle on the floor!  You soon learn that there is, indeed, nothing "wrong" with your little son, and that he couldn't be more perfect. 

Marcus Gunn Ptosis is just a part of who he is.

Mr. C will be six in a few weeks, and we haven't talked with him much about his condition, although we haven't ignored it, either.  He sees his ophthalmologist every six months, and has worn glasses since he was two years old.  For my husband and I, for our other kids, and for our close friends and family, it's never been a big deal.  But I knew the day was coming that it would become a big deal to him.

Some time last week, Mr. C informed me that his eyelid moved up and down every time he took a drink.  Did I know that?  I said that I did.  He wanted to know why his did that, when no one else's did, so we talked about how he's wired a bit differently than most other people. I told him about Marcus Gunn Jaw Winking Syndrome.  We practiced saying it right then, and also a few days later when he brought it up again.  It's obviously been on his mind.

The truth is, I've been dreading the beginning of this time in his life: the time when he notices he's a little bit different, and the time when other kids are quick to point it out.  As the "chubby girl" and the "nerdy boy", my husband and I know that kids can be mean.  Ruthless, actually.  Our little guy has such an incredible heart, and I can't stand the thought of him being tormented.

Please, World, be gentle with my little boy.  I love him so.
Forget the notion that there is something "wrong" with him, and remember that the only thing that is wrong is the expectation that we should all be the same. 

Teach your children, World, that differences are interesting and not bad. 
That perfection is being the best you that you can be, and not being just like everybody else. 

And remember, World, that behind every "imperfection", there is a sweet, gentle (and perhaps frog-loving) spirit that simply wants to be accepted for the amazing person that they are.

Please, World, be kind to my son. 

Thanksgiving 2013

If you have a Marcus Gunn Jaw Wink, or are the parent of someone who does, please join me over at!  I'm trying to find others so my son knows he isn't the only one. 


  1. Made me can we not love that boy? He is amazing!.....Aunt Wendy

  2. I hardly even notice it anymore, and when I do, it just seems, well, him!! He is an amazing child, and I loved reading about his self appointed role as protector of his Mom. I have one of those protectors, and it is an awesome blessing! Love your boy, but then, you knew that!!! 8-)

  3. thanks for this post. i have a 3 1/3 year old with mgjw. he is also very very small for his age - we are small parents so this wasn't a surprise- but i worry that plus the mgjw means he will be teased when he starts school. i have never been much of a helicopter parent but man, i want to go to school with him when the time comes and sit beside him at lunch time and explain and help and hug him. ahhh so hard. thank you for this post. it is good to know there are other mom's out there thinking the same.

    1. Oh, it is so hard. We are a homeschool family, so are insulated a bit from some of it (especially the lunchtime issue!), but I'm not naïve enough to assume he still won't be teased sometimes. God's blessings on you and your sweet little guy as you navigate life.

  4. @Lisa Hi Lisa , I am from India. i have a son with M.G & ptosis. I blessed this boy after 11 yrs of my married life. me and my wife love him like any thing. he is our world. The way you describe your boy was heart touching. keep in touch.