Saturday, September 8, 2007
This is Poppy’s most recent picture to date. I think she looks so sweet…so much like her big sister did in her 20 week photo! In fact, to my untrained eye, I’d say she looks flawless. This was one of the hardest things for us as we sat through the diagnostic ultrasound where they were searching for all of the abnormalities that could be found. As I lay on that table for nearly two hours, all I kept seeing was a little baby. She would move and kick and suck her thumb, all signs in my mind of a thriving little baby. But the reality is that by the time they had finished, the doctor had come up with a laundry list of problems: 3 times too much liquid on her brain, a hole in her heart, only one kidney, short limbs, and a club foot. All of these things on their own are fixable, but each symptom simply points to the greater problem, which is that each and every cell of her body contains too much information because of the extra 18th chromosome. This is the condition for which there is no cure.
The weird thing about trisomy 18 is that there is no way to predict the severity of her case. All of the problems with her organs are not really indicators of how long she will make it. My doctor reminded me the other day at my appointment that she might not make it to her due date. If she does, she could live any time from a moment, a day, a week, a month, or possibly even a year. Medical science just doesn’t have any accurate way to give us an estimate. Not knowing is certainly one of the biggest challenges; another is being completely powerless to do anything to help her. As her mom, that is so hard to accept! That’s where the day-to-day thing comes into play again. This continues to be my biggest prayer request, that God will give me strength for each day and that that will be enough.
I’ve been talking to a friend, who is also going through this same thing right now, about how life is filled with seasons. There are seasons of joy and sadness, growth and loss. This reminds me so much of the song “Untitled Hymn” by Chris Rice. As we were coming home from the zoo today it was on the radio and I was reminded that we are definitely in the midst of the season described in the fourth verse:
Sometimes the way is lonely
And steep and filled with pain
So if your sky is dark and pours the rain, then
Cry to Jesus
Cry to Jesus
Cry to Jesus and live!
This is how I feel! It is a lonely road sometimes. Thank God, He has provided us with precious people who have experienced similar heartache to help share the burden, but sometimes I still feel so alone in this! However, I was reminded today when I was listening to the song that this verse is followed by:
O, and when the love spills over
And music fills the night
And when you can’t contain your joy inside, then
Dance for Jesus
Dance for Jesus
Dance for Jesus and live!
This current season will not be forever. There will be seasons of so much happiness and joy in our future. But for now, we give this season in our lives to Jesus and praise Him for it.