The following is straight from the blog called "Our Stroke of Luck" by Jamie Krug. I could have written it myself...
I haven’t
written in over a week – not for a lack of things to write about as there is
always something going on around here – but out of fear.
Things are changing a lot – slowly but significantly, and I’m just not
sure what that means for me, for my family, for my life, for this forum.
This blog has been a place of solace for me, a place to feel surrounded
while still wrestling with my solitude. It’s a place where I think people
come to read, to listen, to pity, to relate, to appreciate their own lives, to
understand mine, to support, to understand, to share, to just…be there (be
here?).
I don’t
know where this blog goes if I’m not wallowing, if I’m not feeling lonely, if
it’s a day without a major struggle…if there is no blood, no sweat (there
are always tears). Is anyone still out there? Do I need the
drama, the stacked odds, the tragedy to make this worth reading?
More to come...
I just wrote a big comment and it disappeared. Augh! Everything you said about why people read your blog is probably true, but you left out one: to be educated. I for one didn't even know CMV existed before your daughter was diagnosed with it. The day you put up the MRIs I just about fell apart. I was so shocked. I honestly had no idea a virus could have such devastating effects. I think it's important that you keep writing. Not only is it therapeutic for you, but you are informing so many about this difficult situation. I hope you don't wallow in tragedy, that you find balance for you and your family. But I think your writing is a form of advocacy, for your daughter and for that desperate mommy who someday will find it necessary to google CMV and will find you. Speak your truth into the world. Teach us. Force us to understand the need for better insurance, understanding, acceptance, involvement. You did not choose your path, but it is yours. It is Keira's. Make us aware of what this means. It will change the world we, your readers, live in. Bless you!
ReplyDeleteThis means so much to me, Kathie. Thank you.
Delete"You never know how strong you are until being strong is the only choice you have." I think this should be the motto for every NICU mom as we really never know how strong we are until we are tested. You are such an amazing woman, to share your fears, your dreams, you disappointments and your joys with all of us. To share your Keira.
ReplyDeleteI hope that if you can you will continue to blog. I love hearing about all of the wonderful things Keira is doing no matter how small (I can almost hear the excitement in your voice). Kathie is absolutely correct make everyone aware, it will change the world and it starts with us. You are all in my thought!
Wow, thank you so much for including an excerpt from my Huffington Post piece... I am so honored that you connected to it enough to share it with your readers. All the best to you and your family... Jamie
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