Sunday, January 30, 2011

It Runs In the Family--Part II

My mind started to wander after receiving the news.  My doctor recommended a particular doctor up at the Moran Eye Center and encouraged me to contact them on Monday.  I started asking Dr. Lloyd to write things down on post-its since my brain was still processing.  As he watched me, Dr. Lloyd gave me a post-it with his personal cell phone number on it.

"I'll meet you here night or day," he said.  "Please call me if you have questions or if I can place a call to the Moran Eye Center for you.  I can't guarantee that my call will do anything, but I'll be willing to do anything I can to help."

From what Dr. Lloyd understood, the Moran Eye Center can't do anything more for my children than the retinal specialists that we're currently seeing.  The advantage, in his mind, is that they are a cutting edge facility and will have the newest treatments available.

"You need to get all of you in," Dr. Lloyd instructed.  "You need to get the baby tested, but Jenna, I think this disease is dominant not recessive."

I blinked.  My brain was working so slowly--there was simply so much to take in.

"What I mean," Dr. Lloyd explained, "is that I think one of you has this.  There are simply too many kids effected for this to be a recessive trait.  Perhaps the blind spot for you or Wendell is way in your peripheral vision so you don't notice it.  But when you call the Eye Center, tell them that you have 4 kids and 2 adults who need to be tested.  You'll need to make a day of it.  Treat it like you would a day in the car.  Bring the snacks, games, the DVD player.  Just expect to spend a day there."

He went on to explain how much hope there was in the future.  Not just for the current treatments which were unavailable as recently as 7 years ago, but also for treatments that were yet to come.  There is current and future research.  There is hope.

I nodded.  In addition to all of the other thoughts running through my brain was, hold it together--just hold it together.

Mike looked at me and around the room.  The boys were climbing on the furniture and Annika was pulling on my arm and whining.  Since the kids weren't paying attention, Mike gave me the worst case scenario, too.

"It's possible that everyone's eyes could end up like Emma's right eye," he said.

"I know."

The code is, it is possible that Emma, Nathan and Annika could go blind.  But we've caught it early.  And we'll be able to give it a good fight.

4 comments:

HARA said...

I can't stop thinking about you and your sweet family. I cried when I saw this on facebook. We are praying very hard over here. If you need someone to help process stuff with, I'll just listen.

Keryn said...

Wow, Jenna. What a blow! We're praying for you. I know you are strong enough for this challenge. Be sure to let me know--even down here in Spanish--if I can help.

Kari said...

I've been contemplating what to say to you. Because I can not imagine how I would react to this situation if it were my family. I do know, that I am taking a child in to be tested for learning disabilities. This has been a long arduous process. I have been wavering between depression and hysteria. Although I know there is no comparison between the two situations, I know how my situation makes me feel. Even though I know in my head it is not my fault and she can be helped somewhat. Because I have no definite hope for her, I feel like a bad mother for not catching it sooner and I feel like I've done something wrong. I feel like I did something wrong in her younger years that caused this situation. I know what I want, but do not know if I will get it. I want her to be normal. And even thought thought makes me feel horrible and selfish.

So I do not know how you feel, but if you feel anything like me, or if you feel even worse, you feel pretty darn bad. And considered yourself hugged, because that is what I need too.

Jenna said...

Thanks everyone. You know, our trials are all different, but they lead us to the same feelings of heartbreak. But our trials break our hearts for a reason. We are required to bring to the Savior a broken heart and contrite spirit. Then He, the Master Healer, can heal us and show us how we can follow Him and bless us in ways he never could have if we had never come to Him.