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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14
Wednesday, June 29, 2011
"Renewed by God"
During homeschool lately, I have been assigning my daughter T. some digital picture projects. While loading her pictures to the computer, I found that besides her school assignment, she had taken these photos of Lilly.
I asked her about her sign she made on Lilly. It says "Renewed by God." She said that God renewed Lilly like a library book and that she keeps getting better. I thought that sounded pretty good!
We got an itemized bill for Lilly's last hospitalization. For 11 days the total came to $69,944.79. Whew! Thank God for Samaritan Ministries. (Our health insurance alternative.) The entire bill will be paid. The itemized bill is 11 pages long. I have to say it's rather interesting reading everything. (And makes me want to tell them where they can get better prices on some of this stuff!)
Readers of this blog have left such kind comments about us as individuals and parents. I have to say though - you're way too generous! We are far from perfect. We're trying the best we can. But I'm not on the inside what I appear on the outside! My thoughts are often all jumbled, sometimes I feel so panicky about Lilly, I get frustrated with things - especially her feeding pump and pole that's always attached to her (dumb I know since it keeps her alive), at times I wish we didn't have to be so careful with Lilly (but then I feel guilty for thinking that since God has been so gracious to let her live this long), and I've felt like I've needed a really good cry since May. (Why won't the tears come??) One day at a time though ...
May we all be "renewed by God!"
"Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is -- his good, pleasing and perfect will." - Romans 12:2.
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Oh both your daughters are precious darlings. To both of you, love and warm feet. From Carol in New Zealand.xxxx
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ReplyDeleteOf course you're not perfect. None of us are. But a hero is an ordinary person who does extraordinary things. You're still normal on the inside, which leads to frustration and wishes that things were different. I wish we didn't have to lug a ventilator around, but without it, we wouldn't have Aaron. And you worry because she is so precious and you realize how fragile life can be. That's okay. It's part of being mortal. You are doing extraordinary things and your daughter (and family!) is blessed because of it. Keep on keeping on, and yes, may we be all be renewed by God.
ReplyDelete(removed my previous comment because there was an interesting typo. oops.)
Tabitha,
ReplyDeleteThat was so CREATIVE AND INTUITIVE OF YOU!
I LOVE THAT YOU PUT RENEWED. If you don't know what intuitive means, don't ask, look it up.
You are such a good big sister.
Love Shisshy
Wow-
ReplyDeleteLilly behaving is the way I took those photos! :-D
Love the red, white and blue. I can't believe she is almost one!
ReplyDeleteI totally relate to the feelings of needing a good cry but no tears coming. My husband has been having some health issues, (Shisshy can fill you in). We were in the hospital and outpatient for about 4 weeks in May. Since we have been home I felt the exact same way. I think it has to do with the build up of doing the caretaker things we do constantly without complaining and without a break. The only answer I have for it is that I told Satan that no matter how he makes me feel I am convinced of Romans 8:38-39. I call his bluff so that his intentions won't be accomplished in me. He can make me feel bad and depressed but I still believe God is there for me and will accomplish HIS purpose in me even in the depression.
ReplyDeleteThose bills are just crazy...someone needs to negotiate them down. Our insurance never pays that price.
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