I was really struggling for something to write the other day. The topic I chose was me myself and my iphone... it will probably be published soon, but I made it about 2/3rd of the way through and got the most amazing email from a woman named Sarah. She lives in St. Louis and had a baby boy at Barnes with Dr. Warner (the same Dr. We want to handle our surgery.) She had her baby in September and even though he had an Omphalocele containing liver and bowel they were released from the hospital within one week!
There is no way of describing to others how you feel when your child is sick. My job as a parent basically is to make sure my child is healthy and safe. When the child is not healthy or safe it creates a feeling of unease. I liken it to listening to a very omnious note from a cello that just goes on and on forever. At times you can distract yourself enough to not hear it... but as soon as the distraction goes away there it is droning on. Constant.
The other thing that is hard to describe is how you try to keep your emotions in check. Yesterday when we got an email from Sarah it was like fireworks went off. It was the first good news we have had in a while and it felt nice to imagine what it would be like to bring Bayta home in a week. But as soon as I began to feel that something like that could happen to us there came a voice from deep within that said to "knock it off."
My wife and I both knew that we shouldn't get our hopes up. Even though everyone says I am focusing too much on the negative, you have to. You have to be prepared for the worst and hope for the best. It seems like every day I make decisions that seem extreme. Going to St. Louis is extreme. There is nothing wrong or bad about St. Johns we love the hospital doctors and staff there... but if you are planning for the worst case scenario... St. Louis is the no brainer best choice....
I hope someday soon to laugh at how paranoid and "extreme" I was getting ready for Bayta. I also hope that we never have to look back and wonder if we might have done that one thing more that would have improved the quality or quantity of her life.
Where I was started with this is that during this pregnancy we have been the benefactors of so many people's kind acts and deeds. Sarah could have chosen to not send us an email after reading our blog. But she did. Her only reward is my constant emails: "What about... "
A group at a church we have never seen sent us a prayer blanket. The American Rental Association has made the Ronald McDonald House a charity for the month of January based upon our situation. Friends and strangers have called and emailed offering support and prayer from all over the country. People we barely know other than a few casual conversations at our church have made beautiful outfits for Bayta. And just the other day a couple from our Home bible study sent us a box containing something that must have taken days to make. I have had friends from St. Louis I haven't seen in years offer us places to stay and suggestions for things to do in the area. We are so thankful to have so many people who care so much about our little girl.
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