Followers of Vectra Voice already know our Vectra® Ambassador, Stephanie, who has shared her desire to become a mom and the unexpected challenges she faced as an RA patient during her pregnancy. As part of our Parenting with RA series, we sat down with her to get her perspective on caring for an infant. Her son, Santiago, recently celebrated his first birthday.
You are well connected in the RA community and have friends who also have RA and are mothers to babies or young children. What did you know going in about how parenting with RA was going to be different? What plans did you set in place before Santi actually arrived? What would you do differently, and what really worked?
Yes, I had a lot of conversations with other moms – both with and without RA – before Santi arrived, and I was mentally prepared for the fact that caring for an infant as an RA patient would be different. For example, I knew that the physical work of motherhood, such as holding my baby, changing diapers and opening bottles would be harder for me. And a lot of what I thought would be difficult has been difficult!
However, I also ran into challenges I didn’t foresee. I love being outdoors or at the playground with my son because he loves it so much! I didn’t expect to find that the playground close to my home isn’t at all friendly to people with disabilities like mine. The parking lot is so far away from the equipment, and I had to walk such a long distance to get to the play area. I was exhausted before we even got there, and after trying it a couple of times, I realized I couldn’t do it.
The thing with RA is that everyone is different. What is difficult for one person might not be as challenging for another, so it’s hard to prepare. What was most helpful to me was advice I received from my doctor – which was that I needed to have a support system in place. I took that very seriously, asking all of my friends and family for support and help when I was still in the stage of preparing for pregnancy. We even took it so far as to move in with my parents. It’s helped so much since I’ve been flaring. My mom has helped with babysitting or tasks like bathing Santi when it’s been too difficult for me to do on my own. I’m so grateful to everyone who has helped me and to my doctor for advising me to put a support system into place early.
Becoming a first-time parent is an adjustment for anyone, but caring for a baby can be even more challenging for a parent with RA. How is caring Santi more challenging because of your RA?
The hardest part of being a mom with RA is that I can’t always listen to my body. Even though I am a person who tends to push past limits, there are times I can’t. Yesterday was a tough day. I was home alone and in a lot of pain. Santi is too young to understand why I can’t do things. I’m hoping it will get better when he’s older and can understand more.
Some of my other mom friends have been sleep training their babies, and I want to do the same with Santi. They are using the method where you go to the baby if he starts crying after you’ve put him into his bed so that he’ll feel reassured. I just can’t do that. It’s too difficult for me to get up and down so frequently when I’m in so much pain. So, he’s sleeping in our room.
One of the most universal pieces of advice that I receive is around how important it is to be consistent with a baby. Sleep training is just one example. It also includes creating consistent routines, which might include going to the playground or a Mommy and Me class, or meeting friends for a playdate. Even if I have every intention of showing up for something, or taking Santi to the park, sometimes my body has different plans. Aiming to be consistent is so hard as a mom with RA because with RA, every day is a different day, and it’s sometimes just not possible to establish a routine in the way I really would like.
It’s also hard because many caring people without RA have suggestions about what I should do with the baby but don’t realize the difficulty of what they’re suggesting. I appreciate their wanting to help, but it sometimes feels like added pressure. On the other hand, I’m always asking people for advice because I like to hear different perspectives, even when I find myself making a different decision.
In an earlier blog, you mentioned how your RA experience had equipped you to be a more empowered patient during your pregnancy. Has your RA equipped you for motherhood in any special way?
Having RA has taught me to advocate for myself, and right now I’m finding that I’m using those skills to advocate for myself as a mom with RA. Recently my doctor and I have been going back and forth on my prednisone use. He really wants me to discontinue it. He’s looking out for my best interests, and I understand and appreciate that, but I don’t think I could survive as a mom without it right now. I need to be able to walk. In some ways, it’s similar to what I experienced with my pregnancy where I had to balance doing what was best for my baby with what was best for my RA health. Some moms with RA might make a different decision, but for me, in my situation, I feel this is right. It’s important to know your inner voice and to be confident to stand up for what you feel is right for you.
Has your use of Vectra factored into your parenting journey in any way?
The Vectra test has been so helpful throughout this whole baby journey – from how we used it in deciding to go forward with pregnancy, to now with my post-partum flare. After giving birth, my husband could see I wasn’t doing that great, but I refused to recognize it. I was nursing Santi at the time and wanted to continue as long as possible, even though it meant staying off my RA medication. I had the Vectra test and was absolutely shocked when the results came back showing that I was in high disease activity.
It wasn’t news I wanted to hear, but it motivated me to stop nursing and get back onto medication, and it gave me the perspective I needed. I realized that in addition to caring for Santi, I needed to care for myself – and my marriage. My husband Andres is beyond supportive, but it was a lot for him to leave for work each day worrying about my health and how Santi and I would fare together. I didn’t want to add to his stress by neglecting my health. I was really grateful to have a tool that connected me with that reality in a positive way.
After my Vectra test result, I began my sixth biologic. Sadly, my next Vectra Score also came back very high, so I started my seventh biologic yesterday. It is exhausting to start a new medication, and to be on so many right now, but I’m grateful for this tool that lets my doctor and me know that the medication didn’t work so that we can find one that does, and I can get back to feeling better.
Do you have any tips for RA patients who also are parents of infants or toddlers?
You won’t be surprised to hear that my top tip is to make sure you have a support system. I can’t imagine managing this without all of my family and friends who have been there for me – and I feel so much love from them. Whether it’s babysitting, emotional support, allowing me to vent or encouraging me as a mom when I’m struggling, it’s been my best gift. There really are no words that can adequately express my gratitude.
Although I knew that RA tends to flare after giving birth, I didn’t grasp the full reality of it until I was in it. It has been really hard. I’ve also given myself permission to be realistic. My mom recently went back to work, so I’m doing more on my own. By nature, I’m a Type A personality, so I want to be productive when Santi is napping. Instead, I’m letting myself rest beside him when he naps so I have energy for him and less pain myself.
Another piece of advice I have, which goes hand-in-hand with having a support system, is to be involved with new-mom communities—in real life and online. I am very straightforward with other moms in my real-world play groups in telling them that I have RA and that I’m not able to do certain things because of it. I say this knowing full well that they probably won’t grasp the reality of my situation or understand why I do or don’t do certain things. At the same time, I have another community, an online community of moms who have RA and who understand exactly what I’m going through. Those friends support me in ways my in-person friends can’t, and my in-person friends add to my life in ways that my online friends can’t. No one is all things to all people. I’m fortunate to have the best of both worlds in having different types of support.
What has been your greatest joy in being Santi’s mom?
Oh, every day is a joy with Santi! He’s now at the stage where he’s learning words, and he says the cutest things! When he says, “Mama, up!” it just melts my heart. He’s so good, so fun, and he brings a smile to my face every second. I can’t even describe how much I love him.
It’s strange to say, but in some ways I’m grateful for being a mom with RA because it’s taught me to slow down and cherish each moment. Before my post-partum flare set in, I was feeling energized and would use Santi’s nap time to do projects around the house and was trying to be always in motion. I didn’t take time to cuddle with him at naptime or appreciate that stage of babyhood. Now his nap is one of our favorite times together, and I am appreciating every second with him.
Thanks for letting me share my perspective!