I know it might seem like I am comfortable discussing Urea Cycle Disorders and on my blog I am. However, in real life sometimes-especially if caught off guard-I find myself choking on the right words to bring awareness.
Corrigan has what many call an “invisible disorder”. On the rare occasion that we take him to public places his health issues are not front and center and as long as he is not wearing his feeding pump backpack there is hardly a chance that anyone would have any idea that he was not 100% healthy.
Of course, with his significant delays it is becoming more obvious that something is “wrong” and as he is growing into a little boy, rather than a tiny toddler, his behavior and speech indicate an issue of some kind. I imagine that most people probably think, when he is babbling repeated sounds, or yelping because he likes to hear his voice echo in high-ceiling places, that he is autistic. People are becoming more familiar with autism and the behaviors that can come with that issue, and who am I to stop someone that is staring and try to explain brain damage and Urea Cycle Disorders?
When he is tubed though it is an easier way to speak more openly about the “why’s” of his situation and I kind of mentally prepare myself for those questions when I know I am going to have to have him out with his backpack strapped tightly to him, tube dangling out the side.
To be honest though, as easy as it is for me to talk about here, online, it is not so easy for me offline. Which is strange because I was never afraid of public speaking prior to Corrigan’s arrival. I have spent most of my life as a member of various orchestras and symphonies, performing never scared me. Something about talking about my own child though, to complete strangers, renders me tongue-tied.
Part of it is the self-imposed isolation that has come with Corrigan’s diagnosis. Prior to my maternity leave I worked retail for nearly 17 years. I was always out among people, talking to other adults, carrying on face-to-face conversations, sharing funny stories, interacting with the world. After nearly three years of staying away from public places, due some to fear of germs and viruses but also because of Corrigan’s sensory issues and anxiety, I have lost that ease with people. Now, when I find myself at Walmart, alone after 9pm, I silently hope that I will not run into anyone that I know.
Part of it is because I know that that person’s interaction with me, in regards to Urea Cycle Disorders, might be the only time in their entire life that they hear about the disorder. I feel a great pressure to condense the information into a short, yet complete and easy to understand summary, one that conveys the seriousness of the situation yet also gives hope. I want to do the disorder justice.
Part of it is just that it is hard. It is hard for me to talk about UCD’s with people because that is my baby. I have spent a lot of time working on my mental health these past few months, forcing myself to see the positive in all of this, to try and view the world through Corrigan’s eyes…a child that has no clue that he has a disorder. I want to roll with the punches, like Corrigan does every single day, and gently ask Citrullinemia to quit standing behind me, tapping me on the shoulder and intruding on my thoughts.
This is a small town. I guarantee you that the man standing in front of me at the convenience store knows someone that I know. Heck, we might even be related! People know my family and sometimes the person that walks up to me and says, “I talked to your mom the other day, she was telling us about your little boy, now what disease does he have again?” is a complete stranger to me. Bank tellers see the name “Corrigan” and say, “Oh! I heard about your boy, how is he doing?” and there I am, standing there with a pen in my hand wanting to be anywhere but there.
That is my baby we are talking about and when you tell someone that your child has a dangerous disorder their eyes get sad. They say things like, ” Oh, I bet he can grow out of that, right?” and I can hear the hope that hangs on the word, “right?!?!” or “You are such a strong woman, I could never handle something like that” and then, if they are kind enough to touch me…a hand on my forearm, or a great big hug, there I am crying in the middle of the grocery store.
Which is just dumb. Why on Earth would I cry because someone was nice? Why on Earth is it a big deal after all of these years? He is healthy, he is growing, he is happy, there is nothing to cry about. Nothing at all!
Last weekend, the people behind our house were having a yard sale. From across the backyard I spotted a toy box that I could use and off I went to introduce myself to my new neighbors and barter a bit on some items. Connor came with me and towards the end of a row of stuff I spotted a bright red coat rack. It was metal with round balls on the end of each spoke and I turned to Connor and said, “That would make a much cuter IV pole than the ugly one we have now!” and Connor agreed.
I did not know that the gentleman that was having the sale was so close behind me and he overheard me and asked, “Who needs an IV pole in your house?” I froze. I was not ready to talk about my baby. Corrigan had never even been in the backyard to play since we moved. I only had one cup of coffee in me, I do not know exactly what my excuse was but I stuttered and said, “Uh, my little guy” and he boldly then asked, “What is wrong with him?”
Maybe I stood there for a second too long, maybe my mouth was hanging open, I do not know, but Connor walked right up beside me and started talking. “He has a metabolic disorder” he told him. “It’s his liver” he explained “and he needs a feeding tube because he never feels hunger and food makes him feel bad.”
Connor had it all under control. He is almost 14 years old and was better at educating our neighbor than I was at age 36. He was not afraid to step up and tell Corrigan’s story! He was succinct. He was confident, I was awed. I had never heard Connor talk about Urea Cycle Disorders before. He gave me the nudge I needed to speak up and fill in the blanks.
Yes, the neighbor’s eyes turned sad. He said something like, “I am so fortunate that all of my children and grandchildren are all healthy” and I replied that it was worth a million dollars, wasn’t it? He said, “Oh, it is worth much much more than that” and then he sold me the coat rack for two bucks.
Connor and I were right, the coat rack makes the most adorable IV pole in the world. The ball ends pop right off to slide the bag on the spokes and the pump clamps on the pole like it was meant to be. It adds a cute little color pop to Corrigan’s school bus yellow bedroom and it makes me smile.
I smile partly because it is so darn adorable but mainly because it reminds me of how proud I am of Connor. How he has his brother’s back no matter what. How he was not afraid to speak up and spread awareness with complete strangers. How he will carry Corrigan, and all that comes with being Cor’s brother, willingly and proudly…that’s worth more than all of the money in the world too.
Wouldn’t you agree?