Save the Date

First off, I would like to give a huge thank you to everyone out there who have been supporting Emily and our family in this medical adventure on which we are a riding.  When we posted the news about her condition, we did it out of courtesy to all of our friends.  However, the response we received has been overwhelming!  We have received dozens of emails and messages from folks offering meals, places to stay, prayers, tending, and above all, love.  Thank you.  This has been a most wonderful support to us, and we appreciate so very much your kindness.

Recently I found something that Emily wrote in regards to her condition and this roller coaster she is on.  It made such an impression on me that I wanted to share it.  Emily doesn't know that I am doing this, and so hopefully we will still be married by the time she gets her surgery (wink, wink... but seriously :)...).  To me, this captures so well the pain that Em has felt practically all of her life.  It drives home my point that Emily truly is a superwoman and is as tough as nails.  I also share this with you because of the hope we've received because of our Father in Heaven and the marvels of modern medicine.

From Emily, written June 13, 2014:

Save the Date!!

Okay, so maybe I’m not quite that excited about it, but we have a date set for my appointment with the neurosurgeon –July 9^th at 12:30pm. I am excited because it means I am one step closer to attaining that better quality of life that I hear about other people experiencing.

Did you know that if I really laugh, I get a migraine? And when I cough, my head explodes with such terrible pain, I can’t even breathe. It’s never a question of if I have a headache, but rather, how bad is my headache today. I wake up every morning wishing I could stay in bed and sleep all day because I know that my reality is that I actually could sleep all day. My sleep apnea is so severe that I barely get ¼ the restful sleep that I am supposed to have. I get only ¼ of what almost everyone else does.  When I stand up and lean in to my husband to give him a kiss, I usually fall into him because my balance is bad enough that I can’t just lean over a little. I have a constant ringing in my ears that grows incessantly loud and overpowers everything else when I stand up. Occasionally my hands will start to tingle and go numb and a couple times a day, my hands and feet will suddenly feel like they are 50lb bricks and I can hardly lift them. Randomly I will start to feel dizzy and when I stand, my vision starts to go black around the edges until I can’t see anything at all. I also tend to throw up at least once a week for absolutely no good reason other than I suddenly became incredibly ill and lost it. If you’ve ever been around me for longer than a week, you also know that I am in love with massages that include my neck and shoulders.  I will try to bum a massage of anyone that is willing (I do feel bad for my husband on this one).

You now have a summary of my life in a nutshell. Can I just say how hard it is to get yourself showered, dressed, and ready for the day when you can’t stand up without your vision going totally black? Make-up is a joke if you can’t see where you’re putting it!  And it’s really difficult to do your hair if you can’t see that one alfalfa sticking up in the back. It’s really difficult to put on a pair of pants when you can’t even stand up. How about when you are walking in to get your crying child in the middle of the night and comfort them, and by the time you have walked to their crib in the other room, you can no longer see anything, or hear anything over the ringing in your ears, you can’t stand up straight because the dizziness has caused the room to tilt sideways, and you feel as though you’re about to vomit all over…and all you can think as you clutch the side of the crib is, “Somehow I HAVE  to get my baby. Somehow I have to lift him out of the crib and keep my balance and walk to the rocking chair to cuddle him and rock him back to sleep….but I can’t even see where he is at the moment, and I can’t keep standing up….but I have to get him. I’m his mommy and he needs me….”

But soon this will end. This will no longer be me and my life. I will wake up with my kids ready to take them outside to play and run around because I will have the energy to run with them. We will play outside in the sunshine and water and I will not have to fight a headache that is worse in the light of the sun. I will stand tall and strong and walk with a bounce holding their little hands rather than clutch at the wall beside me as my world tilts. I will relish the times when my adorable girl sings at the top of her lungs, rather than cringe because her voice is magnified times 10 in my head which throbs with each bet of my heart. I’ll teach them how to balance on a balance beam and I’ll hold them close to my heart rather than set them on the floor beside me while I try to recover my strength. I will hear each word they say to me and will see their bright smiling faces always, rather than have their faces fade into blackness and ringing in my ears drown out their sweet voices.  

While I am very excited for the changes to come, I’m a little nervous as to the means by which these changes will come –Brain surgery. Yep I said it, Brain Surgery. Shave the back of my head, cut through muscle and bone, and start playing around near my brainstem and cerebellum…not to mention the bad hairdos I’ll be forced into. But really, I’m so relieved that it’s fixable. It’s not going to be fixed the way I thought it would but it CAN be fixed. I CAN have the changes in my life that I so desperately want. Yes, I’m nervous for brain surgery and a bit concerned, but also so excited and hopeful. Please save the date and pray for us. This surgery and recovery is the start of a new journey and when that ends, a new way of life begins for us.