An early-morning conversation with Gavin:
G: Why do you wear this golden ring? (pointing to a plain gold band on the ring finger of my right hand.)
Me: It was Bubby’s wedding ring. She gave it to me for good luck when you were sick.
G: Did you have good luck?
Me: Yes, because you got better.
G: Does it still give you good luck?
Me: Yes. I get to snuggle with you every day.
G: If I were you, I would say that you have different good luck.
Me: What do you mean?
G: You have good luck because you have a baby in your tummy.
I am not religious. I don’t go to church and do not believe in God as presented by the major world religions. I do believe in universal energy. I believe in the power of prayer and good intention. I believe in the human spirit.
The road I’ve walked with Gavin has made me kooky-superstitious and an observer of signs.
I do believe that it is my fate to be mother to this child, and during the four years since diagnosis, I’ve been waiting for baby to arrive and complete the circle of my family, like a train holding at the station until the last passenger boards.
This pregnancy could only happen when I was willing to let what will be, will be. I had to stop trying to control the outcome with IVF and planning. That route only led to disappointment. When I opened myself up to the grand possibility of great joy and great pain, then and only then could this come to be.
Let’s rewind to last February. Every woman who has tried for a pregnancy knows the heady thrill of those few days of uncertainty before finding out which way things have gone. And then, either the disappointment as you realize that another cycle has passed you by, or the ecstatic, buzzy high of, “I can’t believe I’m pregnant!!”
On February the 22nd, Craig, Bean and I were at the cottage. That day was the 13th anniversary of our meeting in London in what now seems somebody else’s life. The number 22 has always been meaningful to us, it is the date of both Craig and his father’s birthdays, and it is our aforementioned anniversary. It is a “lucky” number that follows us around in the form of hotel room numbers and show tickets and street addresses. June 22nd, 2010 was not only my father-in-law’s birthday but also the day the beast was removed from my son’s head. It feels right and fitting that our genetic mutation is found on chromosome 22. And it also felt right that it was the day I knew I was pregnant with our daughter. Today, Friday the 27th of June marks the 22nd week of this pregnancy, with baby doing flips in my belly.
We have all probably known first or second-hand a woman who “didn’t know” she was pregnant until she went to the hospital with abdominal pain, only to be told, “You’re in labour!” I’ve always viewed these tales with a high degree of skepticism, because in both of my pregnancies I knew I was pregnant from day one and have never been able to comprehend how disconnected one would have to be from one’s body to not know it. So on February 22nd I woke up feeling absolutely, 100% certain that I was pregnant. I told my ever-dubious husband, but he insisted on the scientific validity of a stick test to confirm. The next day we had hard proof. The plus sign in the window showed that I was certainly, definitely pregnant.
At home I calculated my due date, and laughed at the results. And did it again just to make sure. My due date is my birthday, October 31st.
In the normal course of events, I would be the woman crowing the good news from the rooftops, as I’d done with Gavin’s pregnancy. This time, with what seemed like endless bad luck behind me, we decided to wait. Wait until the first trimester was over and everything was “safe.” Wait for the results of preliminary testing. Wait for the results of chorionic villus sampling. Yes, we had decided to pursue early testing to discover whether or not baby was a carrier of the mutation.
Prior to getting pregnant, testing seemed like an easy thing to do. Test, and then… decide? Decide what? To terminate the pregnancy if the news wasn’t “good”? Talking about termination cerebrally is one thing. Actually absorbing the emotional trauma of doing it is entirely different. I cannot conceive of the woman who would undertake that decision lightly. And as the weeks passed I realized that it was a complete impossibility for me.
For me to end my pregnancy because my baby “might” get cancer? To not take the chance of all the love, light, joy, and wonder that my child will bring to this world? It seemed inconceivable. And yet, I went for testing anyway. Of course, it was a horrendous experience, and due to holidays and lab bungling it took a full four weeks to get the final results instead of the promised two.
The initial results came in one day while I was in a Queen Street baby store shopping for my new niece Olivia, who had yet to arrive in the world. I told the owner that my sister was about to have her baby, and she said, “Congratulations!” It was impossible not to take those congrats for myself, as I unfolded tiny, dreamy, organic cotton onesies and girly patterned leggings. At that moment, amongst the natural rubber soothers and Sophie the giraffes, my phone rang.
Ringing phones are not good for my nerves. I am always on high alert for bad news. My heart pounded when I heard the voice of the genetic counsellor at Mt. Sinai. I relaxed somewhat at her cheery tone, and listened as she told me that they had the first results back, which revealed no chromosomal abnormalities in the baby. So in other words, the baby was “healthy.” She asked me if I wanted to know the sex of the baby and I said, “Yes!”
“It’s a little girl,” she said. Of course she is, said my heart.
The wise voice of my mama’s intuition knew that. And sadly, in that moment, it also said, this baby is a carrier. I cannot say how I knew, but I have learned to trust that voice when it speaks to me. I cannot tell you how it feels to be SO happy and SO sad at the same moment. Happy because finally you are here. Sad because oh I didn’t want to worry about you too.
The final, final results didn’t come in until later. It was a busy Friday evening and I’d given up on getting the results for the weekend. My parents had given me opera tickets and I was rushing to meet my friend Rachael who was joining me. In the shower, shampoo in hair, I heard the phone ringing and called to Gavin to bring it to me. Dripping, I heard the voice of a Mt. Sinai doctor asking if this was a good time. Is it ever a good time to hear bad news? I knew from her flat, sympathetic tone what she was going to say. So she told me. Yes, my baby carries the same genetic change that Gavin does and that I do. With that done, what else was there to say? I hung up and finished washing my hair, did the Gavin hand-off when Craig arrived home and headed out. We are very used to carrying on in the face of implosions.
I found Rachael outside of the opera house. She is about 8 weeks ahead of me in her pregnancy. With sadness, we discussed what this means and what the future may hold for me and my baby. But our talk was cut short as we realized it was time to go in. Wiping tears from our eyes, we handed our tickets to the young woman at the door, and her name-tag caught my eye. I was shocked to see the name that I would like to give my daughter. It is not a very common name and so seemed much more significant than seeing, I don’t know, “Mary” blazoned on her lapel.
In the time since, I’ve been trying to process what this means. According to geneticists, this means that for my baby, the possibility of having a brain tumour is much higher than it would be for another child. How much higher? No one can say. And yet, there is no explanation for those kids who just get brain tumours and don’t have any faulty genetic mechanism to blame. So I suppose, scientifically, I’m meant to be a realist and just accept that this is going to happen.
I’m going forward with the firm belief that this little baby will never, ever have a brain tumour. She will come into this world a healthy little being and she will continue to be so. I need to believe that just as I believe that her big brother will never have a tumour again. I can’t know or predict all of the painful and difficult things that will happen to her in her lifetime. Pain and difficulty come to all of us. If they haven’t? Just wait awhile.
There are 5 of us carriers in our family who have yet to sprout undesirable growths in our heads. I’ve decided that none of us ever will, and my baby will be 6.