This little girl is strong! She captured our hearts from the second we saw those two pink lines.... and she continues to every single day. She's hilarious... a HUGE personality.... and she's going to do something BIG in the world.... no doubt about it!
I find it crazy that I draw strength from her strength.... and I find positivity in our new life of never-ending treatments, in HER positivity about these treatments....and even though every time I look in those big brown eyes.... I have to force myself to keep it together.... I do it (mostly).... for her! She needs a strong mommy right now...so that's what she'll get!
It is still definitely sinking in....that these treatments are a permanent fixture for us....and for her. Typically with illness, your treatments are a few weeks, months maybe.... it really is hard to grasp the reality that we are in.
We are encouraged by the progress we have seen in her cough and other symptoms.... but I am very burdened and disappointed to report that the $7000 "super drug" is so entangled in red tape... that my sweetie, now two weeks later, has not received it. Every day it's a new hoop to jump through....and it's left me feeling more helpless than I have ever felt before. I've always been of the mindset that "nice wins"....and each day that I've called, I've tried to kill them with kindness, thinking somehow this might move things along and help us get her this drug... unfortunately, after two weeks....today I had to let my desperation be known (in the most polite way I knew how) and I THINK (fingers crossed... toes too!) that I may have gotten somewhere!
Please, please, please pray with me that we get this medicine WEDNESDAY! They are projecting that as the date! I'm not sure how much longer we can wait otherwise!
If I could turn back the hands of time, I would a million times! I thought long and hard about getting her another primary insurance policy (with prescription coverage) at the same time we did Kenton in December.... but ultimately decided, I was over-reacting... letting my worry creep in too much.... and since we really did not think we would be living this nightmare.... we decided to just get it for Kenton. A big mistake I now know... and one I will get the pleasure of reliving over and over until we can get her the right insurance coverage in place. I'm afraid it will be a very long 8 months.
We have had some pretty exciting things to celebrate the last week or so! We participated in our first Cystic Fibrosis Great Strides walk... and had over 60 of our family and friends come to show their support... many that traveled several hours to join us. I never remember a time where I have felt more loved. It truly lifted our spirits and reminded us of the amazing support that God has placed in our lives!!
We raised about $7500 for the cause in just the short few days we had before the walk! Fundraising is so very important.... many believe that we could possibly see more "miracle drugs" for CF victims in this lifetime....possibly even a cure....and I am ready to do my part to raise awareness in any way I can! It's our best attempt at turning our lemons in to lemonade!
Many of you that know me well, know that God brought the most unexpected of business opportunities in to my life about one year before my life got really crazy.....and 28 days before our world was rocked with this diagnosis for our sweetie... my twin sister and I became Executives with this company. Little did I know that the weight loss and energy these products have brought to my life, would become secondary to what the business would do for my family. My husband has an amazing job....and is a wonderful provider for our family.... I never want to take anything away from that....but his income was used for all of our EXPECTEDS..... the financial blows that the UNEXPECTEDS have brought in to our lives, could have been devastating without my income as well. But God had our story written long before we did. He knew what we needed before we did....and he provided for us....in the most unconventional of ways..... as he ALWAYS does.
This company has brought the most amazing people in to our lives..... people who pray for us, organize meal trains, donate products that my daughter desperately needs for her immunity, and it continues to just amaze me.
Today, I was snuggled on the couch with Kambree doing a treatment.... and we were covered in a blanket with my company's logo on it....and she said, "Mommy, are you so glad that you are an "X" girl?" (something she has called me since I started)...and it brought me to instant tears... because I am.... sooooo very, very, very glad.... that God brought this into my life....at just the right time. I was snuggled with my new blanket.... almost like a child with their "security blanket".... and it struck me...our true security, of course, lies with our trust in God, but I could not help but think how much earthly security this company has brought in to our lives.
Without it, our lives would be so much different. I'd likely be eating myself into a severe depression.....and then I'd be sleeping to avoid the reality that I'm in. I wouldn't have nearly the number of friends and support that I have now... friends that are truly more like family.... lifting me up every single day. Sending me encouraging scriptures through text.... organizing prayer luncheons, singing praise songs to me over the phone, reminding me just how awesome our God is. I shudder to think how much debt we could have accumulated with all of our medical expenses.
Initially it felt weird, and I had to stretch myself... but I said YES... and this company has changed my life in so many incredible ways. It's going to allow us to provide for our children in ways we may have struggled before. This company is going to allow us to GIVE in ways I could never have imagined previously. I've got a running list of ways I want to bless people---and as soon as we can get our kids squared away, I can't wait to see how God will use this and me next! He has expanded our circle of influence a hundred times over....and we have so many people we can now lead....and love....and serve.... and there is really no job more gratifying that that.
This blog is about the WHOLE White World....and I don't for one second want to let Cystic Fibrosis define our entire lives! It's a sad part of it....a heart breaking part of it... and one that has left a lump in my throat for about 3 weeks now (who's counting?)....BUT there are a lot of WONDERFUL things in our lives too..... and we will most certainly celebrate the good, while we are dealing with the bad!
Danielle and I got the privilege of presenting at our convention this past weekend....and we created a video to show how much our lives have changed since we began our Xyngular journey in April of 2012..... our husbands and kids even participated in the fun with some messages we included.
Watch it....and cry HAPPY tears with me for a change.... because I think you will be able to tell from the video.... that this is a HUGE source of happiness in my life! Our stories have all been written.... we just have to live them out... and this part of my story, has been a pretty amazing one to live!
Changed Lives
Love you all... that's it for now..... I'll keep you posted on the arrival of the meds!
XOXO
Deanna :)
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