Tucker has been sick for several days. What began as an elevated temperature and sneezing turned into a fever, runny nose, earache, coughing mess. He has been one sad, tired wreck of a baby, just not himself at all. The kind of sick that inspires some to conduct frantic Dr. Google searches and others to share social media messages of woe. But for our family, despite our inexperience with this kind of infant illness, despite our sincere sympathy for his discomfort, despite the dried snot on our shoulders and the sleep deprivation, this sick seems so simple, so survivable. Because it was this week last year, after spending all day with a team of developmental specialists, we were told our daughter's MRI showed diffuse volume loss, that her brain had atrophied, that she was very sick.
JEB
7 comments:
oh Sweetheart, you all are certainly in our prayers. Our hearts are so heavy for y'all and we love you so much.
The crystal clear reality of the big picture changes how you look at all the details doesn't it? Thinking of you always.
I so wish there was some herbal remedy, a dose of Tylenol or cough syrup, something that would make the terrible pain and devestation go away...for yours and mine.
JB, AMB & KIDS,
WONDERFUL to see you all yesterday...thanks again for having alcohol for me to blame stuff on. I'm sure that "Handy Andy" can fix anything I broke.
L2A4
P.S. Poppy John's Insights(PJI)#16...It's official now...ALL of our neighbors have served time in jail.
I've been following your blog since I saw a link to it through Amy Parrish Photography. Our son will be three this christmas, he has kidney cancer, and it already relapsed, and I lurk, following your blog, trying to figure out how to tell you I'm out here, milling around Children's probably crossing paths with you in Columbus without knowing it.
But your post today, it's how I get my head straight with his diagnosis and all that comes with it. You, you inspire me to try harder when I don't want to, to be a better mom through this. I know you'd trade anything to you know, not have reason to inspire me, but I want you to know something redeemable is happening amongst the just, wrongness, of it all. I think daily, your family is always there in the corner of my thoughts, wondering if today was a good day for you, if you were graced with a beautiful moment you so richly deserve.
Thank you for reminding me, it's all relative, how you choose to deal with the situation presented to you, it isn't really about what you are dealing with, but how you choose to respond.
When I want to get fed up with it all, I see that beautiful header of Celia in my mind, and remember to breath and cherish what I have for what it is, today, that you just can't focus on tomorrow, or a yesterday you'll never get back. I don't know if you know that you express that in your posts, but you do, and I thank you for that. For reaching out from your own situation to gift us with lessons you are learning in a way I ache to only imagine. Your post, Sun and Wind, I think of it in every quiet moment I sit in the sunshine with my son or his 4 year old sister. And I cherish those kisses just a little more deeply than I would have if I had not met you via the internet.
Thank you for your honesty, for your willingness to get on the computer and let us all walk with you in this.
And I think Batten Disease sucks (that's the best censored word I could come up with), a lot, and should crawl back down the hole it came out from and stay there.
Love To All 4,
and Christy and Melissa's families.
Amen Poppy John!!!
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