Tuesday, June 10, 2014

We're back!

The new site I tried to use for blogging was simply not as user-friendly (aka mom-who-already-doesn't-have-enough-hours-in-a-day-couldn't-easily-just-type-up-a-blog-post) as I had hoped, so, we are moving the blog back here to Blogspot. It's hard to believe I had hardly written more than a couple of blogs this year - but honestly, we went through a phase until fall where there wasn't much change. I'm going to import the blogs that were written on the other site, for preservation of our history here. And expect to see more of me, as Adam and I feel that we are at an important crossroads in this journey, and there are things that have yet to be shared. We have been waiting and praying for the timing to feel right to share the details with you guys.

Things are not easy right now. I'm too exhausted to even consider seeing our entire current summary of issues on paper tonight, but suffice to say we really need your prayers - for healing, for lifting of a few burdens weighing on us, and strength for the days ahead. And most of all, for courage - that we may not become angry or resentful that we appear to have won a terrible lottery of sorts. I never want to be angry at God again. I never want to view our life as unfair. I don't want pity. We are blessed with obstacles that have brought about a lifelong change in us. We are uniquely positioned to tell our story, share our faith, and the obstacles that seem to never end are like a sharpener, fine-tuning our ability to say "God's not done here. THIS is not the end. The suffering is NOT for NOTHING."

It was hard when Addison got sick.
Then I learned the real meaning of hard throughout the first year of Audrina's little life.
And now she's two and a half, and our battle has grown yet again, and twisted in ways we could not have imagined nor prepared for. I'm now having to learn how to push through and continue to advocate for them, while respecting my own disease process enough to know when to hang up my hat temporarily and let Adam take over while I rest. Admittedly, I'm not good at it. I hate laying in bed watching him do everything, but when your body says 'enough's enough' - you realize quickly your only option is to listen to it. I've hit a wall where I can no longer just ignore my own limits and push through the pain and debilitating fatigue. Doing that has only led to my health deteriorating even faster. It's so difficult because one day I am feeling pretty good and the next I can be all but bed-ridden. And our sweet, beautiful Brooklyn, is facing a courageous battle as well - with a rapid change in her health over the past 9 months - what started as what we thought were simply migraines has progressed very quickly into regression, learning challenges, physical ailments and abnormal brain activity. She had an MRI today, and we will be diligently awaiting those results, as much of our plan for her hinges upon what her brain is doing in that gorgeous, kind, amazing head of hers. She's also facing a sleep study, 3 day hospital for EEG, a very long day of IQ and educational testing, and a spinal tap.

So, if it seems like its an insane amount of things for one family to be going through, well, it is. But we will trust that it's all for a greater purpose that one day will be recognized; and until then, we will do our best here with our time here on Earth to stay cheerful, joyful and prioritize loving one another.

"Do not be *conformed* to this world, but be *transformed* by the renewal of your mind... that by testing you may discern what is the will of God, what is good and acceptable and perfect."  Romans 12:2




4 comments:

  1. Praying for you and your beautiful girls!!

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  2. Praying for your girls, you, your family; all of the medical personnel that work with you, and claiming victory in accordance to God's will. <3

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