It was a simple question. However, it is one that no one has ever asked us. “Were you ever angry?” This was the question our dental hygienist, Mandy, asked my wife last week when she took Monkey and herself for a cleaning. She is a friend of our family, she works with my sister-in-law Lindsay.

Morgan came home and told me about it. I asked her how she responded. She told her that more than anything, it was perfect timing. Two weeks after Princess was born Monkey had his first EEG and MRI. We didn’t have time to sit around and dwell on what might be.  Angry, it is just not anything we have really ever had time for. From the time we knew we were ready to start a family and through her first pregnancy, I guess we always knew that we could have a child with special needs. We skipped the option for genetic testing for both of our children and will for any future children we have.

Sure, we could have found out about Monkey’s genetic mutation earlier. You may wonder why we seem so indifferent to this seemingly huge decision, especially looking back. The reason is because we would not have wanted to have done anything differently. I mean this from an emotional standpoint but also medically and practically.

If we had known going in, we probably would have been slightly less prepared to receive our son for who he is. We would have been far more concerned with medical complications and naming his disorder. We might have even forgotten to name him or remember what to call him. We might have possibly talked more about his potential obstacles in life more than we would have talked about how overjoyed we were to become parents.

There might not be a Princess.

Let that sink in a minute. I know I have to. If you have been reading my blog from the get go. I don’t have to explain to you the hole that could have potentially been left in our family.

Medically speaking if we had all known, and by all I mean us and the medical staff, how might things have gone differently when Monkey was born? We already had the an entire NICU staff on standby in the delivery room. He did not have to spend any time in the NICU and I attribute that largely to our pediatrician who thinks with common sense instead of his credentials.

Monkey had a feeding tube for all of a day and a half. I can certainly see how knowing might of incidentally effected the amount of time that feeding tube would have stayed in. If it had stayed in longer Monkey might not have learned to feed on his own when he did. Therefore, he might not have developed crucial habits and early skills related to eating and swallowing. If this had happened there is a large possibility that Monkey may have faced a similar fate to most kids who are born with some degree of lissencephally. That would have most likely looked like aspiration pneumonia. Due to the lack of strength and low functioning of his esophageal processes, liquid and other foreign substances (foods) would have made it into his lungs. In most children with lissencephally, because of other missing or low functions, it leads to death.

It was a fair question. It was good question. It came from a person who cares a lot about our family and has followed along through our lives with Monkey. It is just not something we have ever taken the time to do. It is not for a lack of our ability to be angry. If you know me or my wife really well at all you’ll know that we both posses just a little bit of anger attached to a sometimes short fuse.

So, were we ever angry? Or are we ever angry now? I don’t think so. At least not about how he is or how things turned out. We are angry about plenty of other things though.

There was some time right after we found out Monkey’s diagnoses that I think I did what most would have done. I was sad. I mourned, what at the time I saw as loss. The loss of doing some of the things I love with my son. Snow skiing, soccer, mountain biking, hiking and backpacking, camping… I couldn’t shake it for about three days. Then, it was over. Loss turned to instinct to care for and fight for my son for the rest of my life.

Most of the time we just find ourselves feeling grateful that he is awesome.