In March, I learned I have a rare genetic disorder effecting my endocrine system, and resulting – mostly, but amongst other things – in an over 90% chance of developing thyroid cancer. The days since then have been a bit of a roller coaster and, at times, extremely stressful. I have coped gradually in phases, but mostly I have been completely preoccupied and concerned with the welfare of my child. This news came on the heels of an unusually hard month for us. When I first found out, I could not stop thinking about what Mason would do and how he’d get by without me. I know that sounds extreme, but the gravity of learning I had a genetic disorder and being a single parent hit very hard. I thought about a few health issues I’ve been trying to resolve for a couple of years and questioned whether these could be related to this disorder. I obsessed about my age and the fact that I’m not as young as I used to be. I thought about all of the ways I’ve failed Mason and all of the things I haven’t done with him, taught him, seen him do yet and I prayed and prayed and prayed that I’d have time to correct them, do them, teach them, witness them. I thought about how I should have a plan in place, just in case. That he should go to live with my sister. That I should make sure she knows – though I know she does – all of the things I worry about, like how sensitive he is and how important it is for him to feel understood and not alone and special. I thought about the things I should have told him, time I should have spent with him, and millions of things I would miss if life turned out to be shorter than I expected.
A lot of this process meant learning to wait and be patient and stay hopeful. I had to make an appointment with my primary physician and wait. Then make an appointment for genetic counseling and wait. Then have genetic testing and wait. Then testing to see whether any cancers had developed and wait. Then more tests. And more waiting. I had a solid month of near daily, sometimes more than once a day, appointments with doctors, specialists, diagnostic centers, etc. In the grand scheme of things this is a minor blip. But from the inside it has felt like a very, very long time. I have been pushed to manage my anxiety and expectations in a way I’ve never had to before – not when I first had Mason, not when I ended my marriage and deliberately changed my life on a dime. Nothing like this.
Up to this point, fortunately each bit of news has been positive. All of the testing and waiting has led me to a place where I fortunately have been able to formulate a plan to pro-actively deal with this. I am painfully aware of the fact that there are people – some who I love and know well – who live with this type of testing of faith and strength every day. I know there are people who deal with these challenges and far worse. I am even more in awe of them than I have ever been.
I am now at the point in this process where it’s time to get Mason tested. I pray and plead with powers larger than me that he’ll be spared and not have had this gene passed down from me. I’m terrified at the thought of him having it, of putting him through this kind of testing and uncertainty, of following what all of the doctors and specialists have suggested for kids his age who have this gene. I’m not in any way really at a point where I can talk about Mason and this possibility. I can’t really speak the words or consider the possibility, but I can’t stop thinking about it either. If you are reading this and you pray, or you wish, or you send positive thoughts or energy – whatever it is you choose to do to personally cope and have faith, I ask that you please take a moment and do so for his sake. For me. I would be grateful and I will promise to return the favor.
This experience has brought my priorities and values sharply back into focus. My faith has been tested and I’ve had to question what it is that I really believe in. Family is without a doubt the most important thing to me and giving Mason a strong sense of family and community is my primary purpose. I am also reminded of how absolutely lucky I am to have the people in my life that I do. My boyfriend has been whatever I need him to be, whenever I need him to be – beside me in my appointments, quiet and listening when I’m overly emotional, co-conspirator when I need a distraction. As if I wasn’t impressed with him enough, he’s been the one to get me through and put me first. My sister has grounded me and reassured me and defended me when I needed more time, had more questions, wasn’t sure of my next step. I haven’t talked with many people about what’s been going on, but those I have are great. My boss and my closest colleague have been so supportive, checking in with me and being endlessly forgiving of me for being late for everything, rushing off to another appointment, distracted and emotional.
And through the haze and paralysis of anxiety and uncertainty, I know in my mind, if not in my heart, that all of this is a good thing. To know that you have something before it develops into something you can’t do anything about is a blessing – 10 or 20 years ago we would not have even been able to be anticipate this or isolate a disease to a single piece of DNA. I now know that I can choose to have a surgery that will significantly – nearly totally – eliminate something that had previously been almost guaranteed to happen. This is a good thing. In the long run. In the big picture. For now, I am moving forward one step at a time, slowly and from the inside.