The Twins - Thoughts From When They Were One Year Old

This was originally written in December of  2007. I could not post it at the time, but I think I am able to now.
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Robert Latimer is back in the news. He is up for day parole. I was not aware he was still in prison. He has served 15 years of his life sentence.

I lack detailed knowledge about his daughter's medical situation, but there are some parallels to J's, at least in the effects.

Although barely one year old, our doctors have been mentioning about her hip. Her lack of control over her muscles cause them to contract involuntarily and are causing a hip to pull out of alignment. It may require surgery or a brace, or something.

When we go out, I am constantly asked about the girls. J is obviously smaller and seems like a newborn while K is obviously at least a year old. People wonder how they can be so close together in age. When I tell them they are twins, you can see they are even more confused. However, I don't normally offer an explanation unless asked.

J's head is about half the size of her sister and has not really grown since she was born. I have seen the MRI scan of her brain. White spots indicate tissue and black indicate no tissue/fluid. The black spots were larger than the white. Seeing those pictures immediately dashed any hopes I might have had for her to have anything close to a normal life. She has somewhere between 25-30% the higher brain mass of a normal child. How can therapy work with something that is not there? I don't expect she will progress beyond the mental age of a 1-3 month old baby. K is growing up fast. Yesterday she walked unassisted for the first time. Yet every milestone that K passes reminds me of the one that J will never meet.

Right now is a bit of a false spring. We have an appointment in a few weeks and they will be looking at her hip and the curve in her spine. I can now pretend that I have two daughters, one that is over a year old and another who is just born. However, we will soon have to face J's dislocating hip and severely curved spine. I expect that life will increasingly become more painful for her, require more invasive procedures, and require more hard decisions from her parents.

I can see ourselves in a future situation similar to the one that the Latimer family faced fifteen years ago.

It is true what they say about judging a man before you walk in his shoes. Although we have no idea how long J will survive, I cannot fathom life without her. As I write this, she sleeps quietly in the living room, finally having worn herself out during tummy time. I can think of nothing more beautiful than her sleeping face.

You really do not understand love until you experience the love you have for your own children.