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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

Thursday, September 1, 2011

The race of life



Photo credit Steve Rubin Photography. Little Miss Firecracker in her 4th of July birthday clothes. (Red, white, & blue tutu.)

I often think of life as a race. Perhaps because of this Bible verse where the apostle Paul wrote:

"I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing." 2 Timothy 4:7-8

In the Trisomy 18 world I have always pictured this race very vividly. In watching Lilly each day and also in my mind I see these children working so very hard to stay alive. Every day they are racing uphill, attempting to live another day.

And then when I hear about one of these precious children dying, in my mind I always see that race ending for them. The race is still going on, with the other Trisomy 18 children running. But that particular child is then gone from the race on earth. It brings such a mixture of emotions for me. Such sadness for the family, fresh fear of losing Lilly, and utter joy for the child that has made it to heaven. For that child is then free of Trisomy 18 and is whole and perfect. No more doctors and medical equipment and pain. Ever.

The death of little Lakia (see my last post) is still on my mind, throughout the day, as I pray for comfort and healing for her family. And now I've added Caleb's family to my prayers. Caleb is the little boy I mentioned recently that went in for a routine procedure and ended up having a number of heart attacks. What a strong little boy - he hung on there for quite awhile. Here is an article about him:
http://www.ocala.com/article/20110830/ARTICLES/110839970?p=1&tc=pg

Have a kleenex handy if you want to see these pictures of Caleb and his family at the hospital: http://www.ocala.com/article/20110830/ARTICLES/110839970?p=1&tc=pg


Caleb, Lakia, the other Trisomy 18 babies that died this week - these children were called Home "before their time" by our human standards. But it was just the right time by God's standards.

"A person’s days are determined; you have decreed the number of his months and have set limits he cannot exceed." - Job 14:5

In my heart I know God's timing is perfect and I completely trust Him. But in my struggle with being human I battle fear. A few days ago Lilly suddenly began grunting in distress - obviously in pain. The fear clutched me and I found myself quickly pleading with God not to take her. Not yet. Venting her g-tube and patting her back was all she needed to feel relief from tummy discomfort. I felt irritated with myself for fighting fear over something that is completely normal for babies. Something I wouldn't have worried about with my other kids. What a refining process life is.

"These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold--though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world." - 1 Peter 1:7

5 comments:

  1. well said my precious daughter, well said.

    mom

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  2. You have such a tender heart for these moms and I praise the Lord for your beautiful words and love for others. I looked at the pictures of Caleb's family and they were heartbreaking and beautiful. Your blog is a blessing.

    CMWH

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  3. LOVE THAT LITTLE FIRECRACKER!
    IT IS SO NEAT TO BEGIN SEEING A FAMILY RESEMBLANCE IN HER LOOKS.

    LOVE, SHISSHY

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  4. Cute picture!!! Looove the tutu!

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  5. I love this picture of Lilly - how she is looking up! Reminding us again where and to whom we need to continue to look to, our Heavenly Father! We are all in the race although we each have a different time frame, our purpose is still the same to bring Glory to God! Little children seem to do it unconsciously and so innocently no matter their circumstance, but as we get older we tend to become more aware of ourselves and less aware of God... maybe that is why we need these precious little ones! Thank you for sharing your thoughts and words. Also the precious story of Caleb , he finished the race and His reward; eternity with our FATHER! [I picture him singing with the angels!] I will continue to pray for his family!

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