The other day my cousin Sue shared a song with me via Facebook. It's called Blessings, by Laura Story.
One of the lyrics is, "this is not our home." That brought back a poignant memory from when Daniel was just over a month old.
We had no diagnosis at that time, other than microcephaly. We'd been to the geneticist, all tests were normal. They told us to "wait and see". He could develop normally. Some people just have small heads.
On a beautiful, sunny day in February our pediatrician called after a visit with the geneticist. She said that the two had talked and decided we needed to be admitted for Failure to Thrive.
Wait. He's gained weight! That's not what Dr. P says. No! He has! I have it written in my log. I'm on the phone outside while Melody plays on the porch. My mom and dad are still in Florida following his birth, helping us out everyday. I don't want to leave. I DO NOT want a hospital admission. My son is FINE.
The decision was made. They admitted us to the Children's Hospital to monitor my milk supply (it was fabulous, I felt I could get side work as a wet nurse), keep close tabs on his weight, and maybe do a few more tests to see what was up with this tiny boy with the small head and big ears.
I was so sad. I just kept repeating to myself "this is not our real home." (Meaning earth.) I was terrified.
During our stay I kept my log of his weights, weighing him before and after every feeding. He DID gain, although not alot. Still, the pediatrician didn't want to let us go home after 3 days because the nurse's notes didn't reflect what my notes did.
I showed her my record again, and we weighed him once more. We went home late that evening. I think I let go a little, too. I knew then that Daniel would not be a typical boy. I knew in my heart that we were going to face hard things.
In the song she asks, "What if the trials of this life, are your mercies in disguise?"
I do know that what looked unbearable to me at that time turned out to be just fine. Are there struggles? Yes. But the happiness definitely outweighs them. He enjoys life, we enjoy him. That's all I know for sure.