Tuesday, March 13, 2007

Good news

So, we found out on Friday that Thomas will, very likely, have his trach removed for good in mid to late April.

The thought of this change is so big . . . there are almost no words. He will be stable; we will not have to worry all, all, all the time about his breathing.

The end of the trach means the end of 5am/11am/5pm/11pm meds. It means we can shower during his nap, even if only one of us is home. It means I can run into the gas station with my baby and my wallet instead of my baby, my wallet, and my double-checked-for-fresh-supplies trach bag with its motor, tubing, extra 3.5 and 3.0 trachs, lubricant, extra "nose," trach cap, bib, saline bullets, and sanitizer. It means . . . everything will be different. We are breathless with wonder.

We have had very good news lately. I got a new, much-better paying job which will start next month. Thomas is looking great, and he has started to eat nearly enough to feed himself. We will have another MRI soon, but it does look like Thomas will be one of the lucky ones.

I've been thinking, lately, about that - our luck. A lot of the people praying for us have started to say, "See? God answered our prayers." I think so, but I am not sure it's in the way they mean it.

I was thinking of how to explain this today when I read this article in the New York Times about hospice care for terminal newborns. Alaina Lund, in the story, was diagnosed with a fatal disease in the womb:

“When we were expecting Alaina, people said, ‘You’re in our prayers,’ ” Mrs. Kilibarda said. “But people were praying to make it a mistake, to make it all better for us.

“We weren’t asking, ‘Make it all better,’ ” she said. “God doesn’t come down and touch you to heal you. He sends people to be with you.”

...“I want to go through this with my eyes open,” [Mr. Kilibarda] said, explaining why he turned to the hospice program.

“I want to feel every ounce of pain, of happiness, because if I avoid it now, it will come back to bite me. I want to experience grace."


I think it's too soon for me to talk about this, maybe. I guess I'm just thinking about people who are not as lucky as we are. I don't think it's because God is ignoring them. I don't think that if Thomas's tumor comes back that it is because God has not answered prayers.

I guess what I'm saying is that I still think grace is real, and present, and one of our miracles is that it has been available to us in the middle of cancer, and not just now at [what seems like] the end.

Read more!


At 9:43 AM, Anonymous Anonymous said...

I have an opinion on this.
Not that I don't believe in praying for things, it shows you know who to go to when the stuff hits the fan. I really I don't believe in luck either. I just think life can be crap sometimes. It is indiscriminate, cruel, uncaring, and brutal.
But that's why we all need to pull our loved ones closer and enjoy the time we have.
Is that depressing?
I'm just glad T-dog is doing so great.

Love to you,

At 11:13 AM, Anonymous Anonymous said...


((((((BIG HUGS))))))


At 5:17 PM, Blogger sarah's_mom said...

At the risk of turning this into a spiritual debate of sorts, all I want to say is Thank You to each and every one of you who listened to that "tug" at your heart, to you who "trusted" when you gave your money, to you who "for some reason" had time enough in your schedule to take meals to the hospital and or the house, to you who considered it "no problem" to mow the yard, ...gosh... the list is endless. I personally happen to believe ....well, that's all. I believe. And, I thank Him for you all. Mostly - selfishly tho - I am thankful for an amazingly wonderful boy in our lives. :) Much, much MUCH love! My heart is glad. Love, Mom/Oma/Mallorie

At 8:54 AM, Anonymous Anonymous said...

sarah, i am so happy to read this news!!!!

grace to you and peace!


At 2:57 PM, Anonymous Anonymous said...

Whats the new job??? I'm curious as is the rest of the world. Best of luck!

At 3:03 AM, Blogger Ctelblog said...

I wish I was as sanguine as you. To me it is just too too unfair for little innocent children to be put through all of this.

It makes me wonder whether our view of Him is just wrong. Can he really be the God of love as set out in the New Testament or is He more like the vengeful, wrathful, capricious God of the OT (or indeed of the pagan gods)?

Or maybe this is just a representation of the lack of inner peace (or Grace) I feel about what Thomas has been through and my boy is going through. Whatever, it's a question that I wrestle with a lot.


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