by Stephanie Shea

Published: Lifelines for Health Fall 2019

When I first heard about the MUMS event (Moms’ ‘Uninhibited Meeting), I made up a zillion reasons why I wouldn’t be able to go. The dates weren’t right with tentative summer plans we had already made, it was too close to other events we had already committed to, my son might need me (his port had been acting up), a friend had mentioned she may potentially come to town that weekend....yada, yada, yada. Excuses. All of them.

The truth was, I was scared to leave my 5-year-old son. My husband is amazing and completely capable of taking care of our two boys, daily factor infusions and all. But if something did happen to my boy, I would want to BE there - to reassure and hug and comfort and do all those things that us mamas do. But it’s often all of those things that us mamas do that can lead to burnout and feeling depleted. And when we’re exhausted and
not taking care of ourselves, it’s often the case that we don’t have anything left to give to those we love around us.

Being a caregiver for someone with a chronic condition such as hemophilia can be frustrating
at times and exhausting. It’s often emotionally, physically, and mentally draining. It may limit your social life and can cause financial problems. Burnout occurs when the stress and burden from these negative effects become overwhelming, negatively affecting your life and health.

When I received the email about the MUM event,
I was definitely experiencing burnout. Before I had children, I was a professional counselor/therapist,
so I was very aware of the signs and symptoms. Yet I still had a hard time agreeing to the trip. My husband finally -lovingly- nudged me to commit to it (and I’m so grateful he did!)

The event was held at a beautiful hotel in downtown Santa Fe. When I first arrived and checked in to my room, I felt at a loss. What do I do with myself when I don’t have two little humans to look after?! I realized my predicament and committed to sinking into that uncomfortable space for the weekend in hopes of not only recharging my mama batteries but rekindling my relationship with myself.

The event started with a welcome session before dinner as everyone began trickling in from different places all over the U.S. Since I was one of the first to arrive, I took the time to chat with some of the other moms. And then I had a very happy surprise when I met someone with whom I had only ever connected with online. She was my first ever hemophilia mom friend and she reached out to me online through social media mere days after my son was first diagnosed (when my head was still spinning from the shock). She was a huge support to me then and I was thrilled to finally meet her in person. And I had no idea she was going to be there, such an awesome surprise!

Connecting with other moms at the event was definitely the highlight of the weekend for me. Hemophilia can be such an isolating condition to live with and when you throw an inhibitor into the mix, it can feel even more isolating within an already isolated community. I feel fortunate because I do have a wonderful group of friends and tons of support outside of the hemophilia community. Yet, sometimes I still feel isolated. When we’re going through a lot of hemophilia related issues, it tends to be forefront on my mind. And if I don’t talk about it to the people who I spend my time with, I don’t feel authentic or as if I’m able to truly connect. And although I have friends who will listen and provide support, there’s a part of me that knows they will never truly understand what I’m experiencing.

That is not the case with hemophilia moms and especially other mamas of kiddos with inhibitors. I often feel an automatic connection, a knowingness that we truly get what it’s like to walk in the others’ shoes. I also often learn more from other members of the community than I do from medical professionals and this weekend was no exception. Connecting with other mothers has been so incredibly healing for me and the MUM event was invaluable for that.

We had a “rap” session that was a bit of a free for all in terms of subject matter. We talked about the things that we felt were necessary to talk about. We talked about the biggest challenges that we face in raising a child with intense medical issues. We discussed new treatments and how we feel about them. We spoke about how we make decisions for our children and how we advocate for them. We talked about how we manage (or don’t manage) the stress we face in our lives. We spoke about anything and everything related to mothering a child with an inhibitor and it was very satisfying and therapeutic.

After dinner on the first night, most women walked a few blocks into downtown Santa Fe and checked out the sights. There was live music and wine-tasting and art and antique cars and all sorts of interesting things to see and explore. But the best part of the night? And the best part of the entire event? Simply being with other mothers who know what it’s like to have the extra challenges of raising a child with hemophilia and inhibitors. Thank you CHES for allowing me this opportunity!