Finally Getting There

As I look over the past two years since my diagnosis of PNH, I see that the biggest struggle I’ve faced has been in letting go of control over my life. Now to be honest, I of course never actually had any control over what was happening. But I did my best to feel like I had it by trying to figure everything out and make lots of big life decisions. I thought that if I could just learn everything I could about the disease, make all the treatment decisions I would need to make for a lifetime, and decide on our future as parents, that if I could just get all of that “done with”, that I would be able to file it all away and continue on with life as normal. Of course looking back on that now I realize how crazy that was. But when faced with a life change like that, I suppose we are all bound to go a little crazy for awhile.

These days though, I am doing better and better at letting go of the idea that I have to have it all figured out. The feeling that I need to have control is becoming a memory and being replaced by a sense of peace. I now realize that I don’t have to have it all figured out. Worrying about what my labwork is going to look like every two weeks isn’t helping me in the least. If my counts get too low and we have to add more treatment options, I can deal with that then. Worrying about it now simply extends the worry far longer than necessary. For now, my counts are stable and that’s all that matters. And I finally realize that I don’t have to decide on the if/when/hows of parenthood. If we are meant to be parents, one day it will just feel right and work out. We have explored all the options and we know everything we need to know about them to make an informed decision when the time comes. That time is not right now, but that doesn’t mean it will never be the time. Right now I am just enjoying the freedom and independence that comes with a childfree life. I’m looking forward to doing some more traveling and fully capitalizing on the great life that Justin and I share right now. Someday we may add a kid to that great life, and it will be incredible, I have no doubt. But for right now, it’s just us and it’s perfect. I don’t want to miss this time in my life because I was too busy worrying about the future. I can’t even begin to tell you how great it feels to finally reach this point. To feel like I can simply enjoy life without trying to figure it all out right now. I truly feel like I have finally handed the reins over to God and am no longer trying to push against him. I feel more at peace than I’ve felt in two years and it feels amazing. There is no doubt that there will still be days when I struggle with trying to take back control, but I am finally getting there, finally getting to a place of peace and joy in the moment, a place that I believe God has been pushing me towards for two years now. Life is good!

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3 thoughts on “Finally Getting There

  1. Thank you. Its comforting to find something that hits close to home. The beginning of your post is exactly how I’ve felt (husband has recently been dx). I felt like “if i scower the inthernet, learn as much as i can…. ” Caught myself thinking “maybe i should get back into the medical field but get a phd this time so I will always know what to do…” and have had an out of body experience where I realized I had all of the tests scattered around me for hours reexamining CT, bone marrow, countless blood work. Trying to find what? A new dx? (i know that all sounds very dramatic and trust me i realize now that its time to be a cheerleader. That life is beautiful and there are lessons that bring amazing blessings ;)I only shared bc its what really happend.
    the second part of you post helps in letting truth and peace set in for us faster through your experience. Because your right;)

    Thank you for being open and sharing your experiences. You are beautiful, helpful, and inspirational!

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