Empowerment As A Mom - Empowering My Twins - Becca and Ian

I've been asked more times than I can recall, “How do you do it?” I’ve been told more times than I can recall, “You’re so strong. Where does your strength come from?” How do I do it? Am I really strong? I don’t know how the answer to either of those questions, but what I do know is that I am a parent; a parent of twins – one medically fragile and complex and one typically developing. I do it because they are my children. Strength - somehow, somewhere it’s just there, internally guiding me, empowering me to just do it because they are my children.

Empower, according to Webster's Dictionary, means to make able or possible. The dictionary defines empowerment as the act or action of empowering someone or something; the granting of the power, right, or authority to perform various acts or duties or the state of being empowered to do something; the power, right, or authority to do something.

Until the age of six, we watched our twins, Becca and Ian, met their developmental milestones, each at their own pace and on different levels but both reaching them. Then Becca continued to meet her milestones while Ian started slowing down and eventually regressing on most of the milestones he had previously met. The fear of the unknown and the need to know what was happening to Ian’s body continued to “empowered” me,  to find out why. I needed to know why and what was happening to his body. I started advocating for Ian and never stopped. Doctors appointments, therapy appointments, questions upon questions, tests after tests; the doctors, the therapists, even the internet - even social media - kept me going, looking for answers. I was going to find out what was causing Ian to regress, what would that mean for him and our family.

As time went on, he continued to regress.  As this happened, his needs changed which meant our family's needs changed. What was going on with our perfectly, imperfect son that was causing him to have problems walking, feeding himself, dressing himself, problems with everything he had previously been doing? He went from walking independently to walking with a walker to using an adaptive stroller to being wheelchair bound over the course of two and a half years. Ian went from being 95% independent in all his activities to being 100% dependent in all of them. By advocating for Ian, I was also advocating for our whole family, getting support from the doctors, therapists, teachers, and others in the community, helped us to continue to thrive as a family.

Looking back, I now realize I had no idea what I was doing, except what I was supposed to be doing, being a mom, being their mom.  But how? There are manuals for almost everything but not being a mom; each mom has their own unique style. For me, being a mom means doing my best, nurturing and promoting the kid's well-being, by supporting their physical, intellectual, emotional and social development. Throughout this time, my husband, Brian, and I agreed that we would make the best decision we could at any given time with the information we had at that time. For us, that also meant including Becca and Ian in the decisions. We were honest with them, at an appropriate age level. After all, they were living it. They deserved to know what was going on and be included in the decisions that needed to be made. By including them in the process and letting them have some degree of say in the decisions, it helped them learn the responsibility of making choices. Making difficult choices is, well difficult. Including them felt right. It was important for Brian and me to know how Becca and Ian felt about the situation and the decision that needed to be made. We were all living through it together. We talked about the situation, asked them what they thought and then Brian and I made the final decision, keeping their opinions in mind.

Each day could bring us new information, to add to our ever-changing “normal”. My husband and I would rely on each other to help get through the tough moments. When one was struggling, the other usually wasn’t. We were strong in different areas and would let the stronger one take the lead to get to where we needed to be. Over time, we realized that we could not give Ian the care he needed (he eventually became 100% dependent care, bedbound, trached and vented), while still being there for Becca and giving her a “normal” childhood. Admitting we needed help was hard for me. It's not part of who I am, but I realized we needed it.  So we learned to ask others for help. We learned to rely on others. Relying on others, to take care of the laundry, running errands, bringing us dinner – just to name a few - empowered us to focus on spending time together, making memories.

Along the way, we learned that Ian’s life would be short. His life expectancy was into his late childhood or early teenage years. We began talking to both kids about Heaven and what we thought it would be like, what would be there waiting for Ian. We told him all of his body parts that stopped working were up in Heaven waiting for him. He would have no more machines to help him breathe, no more therapies and no more medicines. The smile on his face was priceless. We told him he would be able to walk, feed himself, dress himself, to be able to do everything he had previously been able to do. This belief seemed to make sense and work for Ian and Becca. In truth, it seemed to make sense and work for Brian and me as well. It helped us deal with the inevitable and made us feel a little better at the moment.

Along our journey, I have realized that my kids, my twins, Becca and Ian, have empowered me as well. Watching their strength come through in their personalities, watching their need to know where the other one was at all times, even watching the smiles on their faces, each and every day when they knew that one day, someday, our family would physically change forever gave me strength.

Even now that Ian has passed, our forever family of four continues to empower each of us as we have learned and continue to learn how to adapt to each “new normal”.