Have you all ever noticed the more “connected” you are with other people, the more you share in their sorrows? Being aloof from folks really does make one an island of sorts. In just the past couple of weeks, I have prayed for a woman with a brain tumor, a woman with an adoption gone awry, my own dear niece and sister and a friend’s daughter newly diagnosed with cancer.
If I could make a bubble, I wouldn’t have to share this pain or grief. Of course, then, I would not share the joy and friendship that comes with it. Excluding my sister and niece, I know none of these people about whom I have thought so much this month.
My sister and niece and brother-in-law are at their monthly cardiologist appointment. Today, they find out what course of action the doctor recommends. Two months ago, the doctor seemed to indicate that one of the holes in her heart had been healed. We know Marshall is being healed, but sometimes the process seems so painful that we forget what has happened.
If you’ve never before read my blog, I’m not usually so melancholy. This is just one of those days.
Anyway, next week, Marshall is scheduled to have the cataracts removed from her eyes. The opthalmologist believes she will be able to see once they are gone. She does have limited vision now, but is having to look around the cataracts. She also has some sort of optic blood vessel that usually disintegrates at birth that is still intact. The surgery will remove that vessel as well.
It seems there is so much to say about Marshall that I have not been telling and I know people have prayed for her. When she was released from the NICU, the doctors believed she only had a few weeks to live. So, the g-tube they inserted was only temporary. My sister dealt with that tube for four months and then took Marshall to a gastro-enterologist. He was astounded that the doctors were so sure of her imminent death they didn’t provide her with a more stable feeding arrangement. Now, Marshall has a “g-button” that is much easier to keep clean and MUCH less likely to be ripped out than the tube was.
Marshall was diagnosed with Trisomy 13 at birth. Usually, this condition is diagnosed in utero. Marshall was flown by jet to New Orleans where she stayed in the NICU for two months. Initially, the doctors said she wouldn’t live past two months (95% of babies diagnosed with trisomy 13 die before birth). Now they say, not past 1 year. Please pray with us that our family continues to be able to provide for Marshall’s needs. As long as any child receives proper medical attention, the survival rate is much higher! Because of the multiple organs affected by this condition, most doctors just give up the fight. If you are praying, pleas pray that my family finds the best doctors possible.
Thanks for sticking with this post. I’m just really thinking about all of this a lot lately…