It’s a long one… here’s my heart.
Sooo, after almost 5 years of research and careful thought… I think we’ve come to a decision for Shaeffer. We met with Dr. Brent, Dr. Kesser, Dr. Schramm, and Dr. Yip… and spoke to Robert Barron all before Shaeffer was 6 months old. He’s soon to be 5.
We have done plenty of soul searching, as I know all of us parents do…. Do we “change him”? Will he think we don’t love him as he is? Will there be long term psychological consequences if we pursue surgery/medpor/prosthetic? What if we don’t? What if he’s bullied? What if the damage caused by being tormented is carried with him his whole life? Will he feel we didn’t care enough to help him? So much uncertainty. Too many sleepless nights of worry and tears. Lots of dark hours. More at the beginning of Shaeffer’s life than I care to admit (my wardrobe was the same awful bathrobe and pj’s for almost 6 months…). The questions, the doubt, the guilt, the worry…. What could I have done differently? Did I sleep on the wrong side while pregnant? Did that diet coke do it? Maybe it was the shrimp I ate?
All I could think of was him as his future 4 year old self, getting off the school bus in tears because someone had been mean to him. He was only a few weeks old, and that’s all I could play over in my mind. I could protect him until he went to school. Then what?
Well, then Shaeffer started school…and well, he is the life of the party. The funny guy. The “happy, sweet boy” as his teacher puts it.
There was nothing within my control that could have changed the fact that my first born beautiful boy has microtia. Shaeffer is a blessing. He has made me a better person and continues to enlighten me every single day. I couldn’t be a more proud mum. I have realized that I do have a little bit of control now though. My husband said to me…”Shan, if he didn’t have a hand, or an eye, or an arm, we would get him one, right?” Right you are (again *sigh*)…
We’ve decided that the best decision for our little man is a prosthetic. For now. He’s made it very clear to us that he wants to keep his little ear and would like to have just his little ear sometimes. That made me happy. I showed him the before and after photos on Robert Barron’s website (https://www.prosthesis.com/ear_base.htm), and he was smiling from ear to ear. He’ll have the option to wear it if he chooses to. Nothing permanent. That was a benefit for us (I’m sure it would be a drawback for some too).
I had an almost hour long conversation with Robert Barron when we’d decided this was the best course of action for Shaeffer and he was wonderful. He answered all of my questions and put any worries I had at ease. If anyone hasn’t considered prosthesis, please research it as a potential option. We all have to make the best decision for our little people (or big people), and I think that the more informed we all are, the more confident decision we will make. God only knows, we all need a little bit of confidence when there has been so much doubt and anxiety for many of us.
I wish that I could express how important this group has become to me. The picnic on Saturday in Toronto was something I will never forget. So many beautiful faces. A great group of perfect little people with a common uniqueness.
Peace and Love. x
Shannon and Shaeffer Gay