When Lily was learning to count, among the first things she counted were the silos on the farm. There were three; three is easy. She would count them every time we went for a walk, which was most days in good weather. As she got better at counting, she still counted the three silos every time we walked by them.
Around that time, we took Lily to a city where she encountered towering buildings of many denominations. "Silos!"
We tried to explain what a silo is, and that those buildings were not silos but we stumbled a bit because the silos on the farm are not in use. They are not full of food for animals, or anything else. They are just impressively tall buildings.
Lily did learn, somehow, in spite of her parents' stumbling, what a silo is.
Shortly after Sarah was born, and immediately hospitalized, Lily did not want to go for walks on the farm anymore. She had always loved her walks, so we pressed a little. Lily was afraid of the silos. Startled, and worried, we wondered why. "They are going to fall down."
The world had been rocked and things seem to be falling apart. What do we tell her? Is it reading too much into her brilliant little mind to have heard a terrible fear of instability?
It was only a week ago when I admitted to myself that my daughter was living out of a suitcase- and so I bought a suitcase. That may well have been the most emotional purchase I have ever made. I found a leaflet in the NICU which discussed what to expect out of siblings of NICU babies. Potty training regression. (check.) Temper tantrums. (check.) More clingy and sensitive than normal. (check.) On and on the list went with predictable familiarity. Then I read the list of feelings which the sibling might be experiencing: they do not understand; they blame themselves; they are afraid they will get sick and get stuck in the NICU; they are jealous.
What could I say to alleviate her fear? I wanted to gather her up and tell her that everything would be fine. Soon, life would go back to normal.
Sometimes silos fall.
On Halloween Lily wanted to be a butterfly fairy. Or a princess. Or a butterfly princess. Or a fairy princess. let there be pink! Let it sparkle! Let there be magic and flying! Let it be beautiful, light and happy!
I was not going to be around to go trick-or-treating, so I took Lily for a walk in her costume. Skipping down the road, she used her magic wand to turn the cows into frogs. She turned a puddle into a mirror. She turned me into a pirate. Uncle Chuck and his dog, Jethro, were threatened.
Then we arrived at the silos.
A meltdown? Would I have to carry her home?
Lily lifted her wand and waving it around proclaimed that the silos were beautiful towers! One purple, one pink and one blue!
We had a family meeting on Thursday to talk about Sarah. We have not had these meetings as often as one might like or expect; this in only the second. At the first, two month ago, our doctors looked at serious problems with five major organs and told us to say goodbye to our precious child. Now, the kidneys are fine; they cannot find evidence of the earlier finding. The liver is fine; despite all evidence, she never had biliary atresia. Her heart is fine. Her lungs are fine. Her brain is fine. Our baby is going home! One serious concern after another melted away.
Next week, Sarah will have a surgery to place a tube in her belly. She cannot coordinate sucking and swallowing yet, and this tube is a better option than the tube she currently has which goes through her mouth. (no danger of aspiration, and no gagging.) When she heals, we go home. It could be a few days, it could be as long as a few weeks. But we are going home soon. Miracles abound!
Through everything, we have depended on our family, our friends and our faith. Our relationships are stronger. Our faith is deeper. Our marriage is better.
We will have to create a new "normal." But I think Lily is right. Our silos are beautiful towers.