In the last six years, I have attended exactly three of the more than a dozen baby showers that I have been invited to. And, while I love each of those mamas and their little ones infinitely, each one of those days was excruciating for me to get through. It has only been very recently that I have finally gotten to a place where I no longer feel as though I have put myself through such a painful exercise.
This without a doubt might sound selfish to some people, but I cannot apologize for how I make other people feel. Instead, I’m learning that it is OK to prioritize my emotional well being over social obligations and the expectations of others. And it’s because at any given moment on any given day, I am still coming to terms with the idea that I might never be a mama myself.
When I was in post-op recovery after hip surgery number six, my surgeon came out to talk to me about how everything went. The first words out of my mouth were “How bad was the reconstruction? Can I still have kids?” even as I slipped in and out of awareness from the effects of the anesthesia and pain meds.
A few days later Dr. S told me that he had used six screws to anchor the new cup liner into the hip socket, including one big one that is screwed deep into my pelvis. His immediate concern about pregnancy is that the eventual widening of my pelvic bones could cause fractures where the screws had been inserted. Even without such an intricate reconstruction, being pregnant with hip replacements always carries the risk of dislocation, fracture and total failure of the artificial joint.
It’s not just my hips that we have to worry about either. Now that my Pericarditis has been upgraded to chronic, it requires medical intervention and constant monitoring. The only drugs used to treat this condition are not safe to take during pregnancy. Because there is almost no data about Pericarditis in women of childbearing age, it is virtually impossible to quantify the potential risks posed by the combination of pregnancy and discontinuing medical therapies. And it wouldn’t just be the Colchicine that I would have to discontinue, but ALL of my medications for my RA…
Yes, I’ve heard the stories: the women that go into remission from their RA the entire time that they’re pregnant, but I am too terrified to even think of what could happen in between the time I’d have to go off all of my meds, getting pregnant and possible remission.
But the thing I think about the most is just how uncertain my future is even as I sit here writing this. Yesterday during lunch I missed a phone call from my Cardiologist. Even though I am scheduled to see him a week from Monday, he was calling me to go over the results of all of my recent tests. In his voicemail, he said “We have a lot to discuss, and I would like for us to take the time to go through everything one by one” and left me with instructions to call his assistant and have him paged as soon as I received his message. Unfortunately, I missed my window of opportunity to speak to him yesterday in between surgeries, and I am stuck waiting until Monday (at the earliest) to learn about my test results.
And so I’m scared. Scared that even if I could forge ahead, risks be damned, that I might never get to be the kind of parent I want to be: active, hands-on, healthy, strong, present. Or how the progression of my disease would affect the need for my children to eventually play the role of caregiver themselves – like me and my sisters did with our own mother. Or what my likely shortened life span and losing me would mean for them in their lives. And what the strain of all of this would mean for Vin as a partner and parent and caregiver. But more than anything, I am scared of what it would be like to pass on RA or another autoimmune illness to my child.
Trying to deal with all of this is exhausting and all-consuming at times. There is not a single day that I don’t think about it – sometimes just passing an obviously pregnant woman on the street is enough to put me into a full tailspin. And so there are plenty of days that I simply don’t have the energy, physical or emotional, required to ‘ooh’ and ‘ahh’ over baby gifts, or to put on the brave face required for such a public celebration of someone else’s happiness and good health. And, after all this time, I really think that’s OK.
It’s OK for me to send cards and gifts in lieu of attending a baby shower, and to wait until I am ready to join in the celebration. And when I do it’s genuine and joyous and full of love – but it’s with the understanding and self-awareness that sometimes I just need a little bit of extra time to get there.