Fevers, Tennessee, and Lot's and Lot's of Prayer

                   
                  It's been a while, I know. I'm really terrible about writing in the midst of stress and pandemonium. It's like "Hey, I'm going to write." So I set up my lap top after the baby goes down, determined to relive the nervous apprehension eating away at my sanity. With coffee in hand I finally sit down with a purpose and a pre composed  draft I'd just passionately and eloquently rehearsed verbally while bouncing the baby on my hip and wrapping up a soiled diaper. 'It is perfect,' I think to myself. It'll be a synch, just like a stitch in the quilt- quick, simple, with intent to hold me together just a little longer.

             But I always find when I actually sit down and put hand to key board, all of the passion fades away like the sun in the horizon on a cloudy day. ( I don't even know if that made sense, but I think you get my point.)  Long story short, I end up staring at a white screen for a good hour or so, typing and undoing the same sentence over and over. I'm at a loss for words. Point comes to blank- I don't know how to write about what I'm going through or dealing with right now because I can't fully comprehend it myself. The honest truth is that I'm just trying to get through each day on a prayer and I'm attempting to leave the rest in God's hands. I'm learning that sometimes there aren't answers to questions of uncertainty- Sometime I just have to wait and see what God's going to do and accept when His plans don't meet mine.


             So... If you haven't caught the drift yet- Life is hard sometime. The hardest part about it, for me in particular, is not knowing what I'm up against or what to expect. I don't have the words all perfectly pre-constructed to give you a clear concise picture of where we are, so I'm just going to try my best and let you in on what's been going on. :) So please bear graciously with my through this.   There have been three main things in the last few weeks that have filled our days with unknown mysteries.

                   1. We might be moving to Tennessee.  

       .... Yes Tennessee. (I almost forgot Tennessee was a USA state before my parents mentioned it) With my whole family. Long story short, my seizures aren't getting better so I have to stay near to my family so I can get the help I need with Charlotte and getting around. Longer story short, my family (and Alex and I) would greatly benefit moving to the Gatlinburg area of Tennessee due to: lower expense, more and better job opportunities, different social environment, GREAT hospitals, and lots of other reasons. The only hiccup in this ongoing invention is that we have to sell our house first.  The great part of this plan is that God is in control. Sooo....If He wants us to move our house will sell, and if He wants us to stay here...then I guess our house won't sell and we will stay here.

        Alex, I and my parents did take a trip down a couple weeks ago to check out the area, and we pretty much fell in love. I really can't explain it better. It's one of those, "You have to see it, to understand it." kind of things. For Alex I know it reminded him of his home in Colorado where he grew up. There were many warm fuzzy feelings experienced in those few days. I think...nope, I know we really hope that God is leading us out there, but I also know that I can trust God no matter what happens in the next few months. For who knows the plans of the Lord? I just don't like this whole, who knows whats going to happen thing.

       
         2. Charlotte has been really sick off and on, and we don't know what it is.

        It breaks my heart in a million, and then some, pieces. There is nothing like seeing your child hurting and sick and not being able to do anything to help it, or to know what is causing it. She has been struggling with low grade-very high fevers since she was 2 months old. She on a good week she'll only have maybe four low grade fevers, and be slightly fussy- however, on bad weeks she can have low to mid grade fevers (sometimes really high fevers) for days non-stop and be utterly miserable and uncomfortable and the doctors can't figure out why. They have ruled out: teething, colic, acid reflux, several kinds of cancer, infections, viral illnesses, septic hips, ect.. In doing blood work (which is a grueling procedure that has lasted to the upwards of three or so hours to get enough of a sample to test) we have found that her white blood cell count is low. The last time we took her blood, her count had gone up slightly but not enough that it was back where it should be. The other strange symptom has been a phantom pain in her left side/leg, always followed by a fever of 100.1 or more.

       She has seen a hematologist/oncologist (blood and cancer specialist), and a pediatric orthopedic. The verdict has been to continue redoing blood work so we can follow her white blood cell count, and if the pain in her leg/side continues to come back and her cell count is still low, we will have to do a bone scan. It is so sad and frustrating to be playing this waiting game and honestly exhausting, both emotionally and physically. She is such a happy baby, even in spite of everything. She can have a fever of 103 with an IV in the hospital and she will still smile and giggle for us. Even when she is cranky and unwell, while obviously uncomfortable she won't let it put a frown on her face.

         We are waiting to have blood work done again in the next week, and then we will be talking with the doctors once again. We just have to keep praying and trust that God knows what is going on, and that He is ultimately in control. No one ever said that was easy though.

         3. My seizures and anxiety attacks.

    Obviously things are a little chaotic. That makes sense. What doesn't make sense is that nothing we do or have tried has helped my seizure in the least. I'm having episodes regularly every other day or so, often several times in a day. They are very painful, sometimes scary, sometimes incredibly embarrassing, and always a pain in my butt. Sometimes I just want to stomp my foot and scream for a good while in pure exasperation.

     I think the hardest part of dealing with this, is that I have lost hope for ever getting better and I feel like I'm constantly letting my husband, daughter and family down. I know that not a soul holds it against me, but I know that it is super inconvenient some days. It is so frustrating that I have to rely on other people for simple things, that I have to live with my family, that sometime I can't let my husband sleep when he really needs it because my body is a freak of nature. I am carrying so much guilt. I know that I don't need to, and I'm trying really hard not to, but, well...it's really hard. (Note: My husband is super wonderful and supportive to me through all of this and never does or says anything to make me feel bad about it. I really couldn't have asked for a more understanding and encouraging husband and best friend. Having him by my side really does help ease the struggle.)

      I really don't want to fully accept the idea that I may never overcome these. But in any case, God may be asking me to do just that. We are starting to ask questions like, 'if this is going to be a lifestyle how can we make this work for us, and what are things we can do to help.' One of our ideas has been to look into getting a puppy to train and certify as a seizure alert, and aid dog. We aren't anticipating that a puppy will solve everything, but possibly give me a little independence and security when I'm out in public, and may help therapeutically relieve stress and anxiety. We are also starting to think and figure out in what ways we can make this work for us so that we can someday live on our own.

(As much as I love my family, it is really difficult living among them everyday all the time, without a separate living space of our own. They can be...well, like Wolfes; a hyper, howling, hungry pack of chaos.  I might have an ulcer from trying to keep people quiet while praying the baby can sleep through the laughter, stomping, running and yelling.) *** Dear Family, if you are reading this, please know that you are truly wonderful and I have been so grateful for your help and support and the love and kindness you have given us, but lets face it, you guys can be a little crazy. ;) I love you!


       So long story-stories short, it's been kind of an overwhelming several weeks. With upcoming changes (maybe, hopefully), unknown illnesses, and dealing with my health, it's left me a little tired and worn. I'm continually reminded that trusting God isn't a one time commitment,  it is really an ongoing, every day, every time I want to cry choice. 'Will I trust You? Even though I don't know what is going to happen, will I trust You? Even if things don't go my way, Will I trust You?' I'm really walking a life-time journey of choosing God and bringing Him my worries and fears daily, moment by moment.

       So if I'm not writing a lot lately, you can bet I'm either changing diapers, trying to sleeping, or sitting on my bed room floor with my bible, praying that God will help me choose to trust Him. So thanks for your patience...even though you pretty much didn't have a choice. ;)



End of Post.

I hope that wasn't too unbearable
.

Love,
Leah