I know that this disease is terminal. I know that there is no cure - no permanent treatment. But this is the first person I've personally known to die from it. There's something so utterly painful about that. When (2 years ago this month) the doctor came in and told me that he sincerely doubted I'd live long enough to see my baby born - that was a huge slap in the face of the fragility of life. (Most people don't face those types of issues in their 20s - not that I imagine it's much easier in your 80s.) I didn't think anything could make the gravity of this diagnosis - the ultimate mortality of ME and of YOU (not just the collective "mankind") more personal. But I was wrong. Today the "death sentence" of this illness hit home in a new way.
I've spent almost two years struggling with the voices in my head reminding me that this might be my last _________. And the comments some people make about how ridiculously many photos I take don't help either. SO WHAT if I take pictures of everything. Does it REALLY offend you so much? SO WHAT if I blog about what seems to you to be boring, mundane things - don't read it. The top of my blog says that this is a PERSONAL journal of sorts, but that I'm willing to share it. If you don't find it interesting then don't waste your time reading it. I'm not writing it for you - I'm writing it for ME and for US.
What if THIS is the last memory I have with my kids? I want THEM to remember it. I had a father die when I was young. How do you adequately share with your kids who their parent is when the child's memory of him (her) fades? I haven't had the strength to write my kids a personal letter "just in case the inevitable happens" - a letter of what my hopes and dreams for them are - a letter telling them how much they mean to me. But perhaps by having photos and reading this type of daily journal they could eventually piece together who their mother was.
Now that I actually KNOW someone who's died from this - my scab's been picked open once again. I'm not meaning to disrespect her life - or the pain her family's going through right now. That's not what this rambling is about. Facing death is hard. Sure I heard a voice tell me that "it will be ok - this will end" - and I find great reassurance in that. But that doesn't mean that I won't be healed and then 5 minutes later die. It doesn't mean that my husband - mother - or sister won't die. No - I don't just live in a state of fear. Don't misunderstand. ... Facing death - having moments when I've literally fought to live has changed my perspective ... it's changed my focus and my goals.
I want my time on earth - whether it's five more minutes or five more decades to count for something. I want life to be about more than just scrubbing the floor and bathing my kids and watching the latest movie. I want to make a difference. Yes, I'm currently struggling with the reality of our mortality - but that doesn't mean that I don't still have peace and confidence in who I am - and who my God is. I want to share what I've learned - I want to share what I've experienced (without sharing the pain). I know that people don't learn wisdom and gain perspective by osmosis. But sometimes I wish they did. I wish the pain I've gone through - the pain my family's gone through - the past couple years ... would be enough for everyone to have learned the huge lessons we've learned. I know it's not. But that won't stop me from sharing them anyway.
I will not die but live,
and will proclaim what the Lord has done.
(Psalm 118:17)
If you don't want to hear what I have to say - then I accept that. But that won't stop me from telling my story. If you haven't heard our story and are interested, then I encourage you to click on the link on the right to my other blog - "Million Miracles." It tells part of the story. I'm gonna die - my doctor's told me so. We're all gonna die - history's proven it. What are YOU gonna do about your eternity?
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