In the 7 years since my diagnosis of Multiple Sclerosis, I’ve had to make many changes in my life. My husband and children have also had to make changes. A few of these changes came a bit easier than others. The hardest change being my way of thinking. Before my diagnosis, I had been brainwashed into thinking to be a “supermom” I had to be a perfect morph of Mrs. Cleaver and Ginni Rometty to be a successful “supermom.” For many years, I attempted to become this perfect mom: that unattainable, fairytale being.
Then, I became sick. I lost a bunch of weight, couldn’t stay awake to save my life, had vision issues, ect. I could no longer keep up with the lifestyle I had made for myself. While we had no idea what it was that was wrong with me, we knew that things needed to change. I wasn’t getting better. The more I fought to keep up with my normal life, the worst I became. So, the first change that came was the loss of my job. After 10 years as a restaurant manager and chef, this was a huge change, but I could no longer work 60+ hours a week; my body just refused. While I mourned the loss of my career, I was able to find a silver lining in the realization that I was finally granted the opportunity to spend more time with my children.
The next change required my family to leave the life we had built for ourselves in Tennessee and move back home, to Michigan, to be closer to family. This was a difficult decision to make. My husband, an audio engineer and music producer, needed to be in a music industry hub (L.A., Nashville, New York) to build his career, but I needed help with the kids, with the house, ect. My husband understood that this was what I needed and gracefully agreed to move back to our hometown.
It was November 2007 when I finally received a diagnosis for all the troubles I had been facing, Multiple Sclerosis. Although it terrified me at the time, I was also relieved. The last couple years of doctors appointments, tests, and no answers were finally over. At least at this point I was no longer at a standstill. I, and my family, could finally move forward.
Over the next several years, my husband, my daughters, and myself, settled into our new roles, a new routine, and things were going okay. My husband found a job managing a restaurant and my girls were doing fantastic at the local public school. I began an exercise routine with yoga and meditation and began Avonex to manage the progression of the disease. Although, I was doing fairly well, the “flu-like” symptoms from the injections never improved. I had never been the type of person who asked for help. I was an independent woman and I took a lot of pride in that fact. Yet, every week, I took my injection and would be down and out for at least a day. This meant I had to ask for help.
I struggled with depression. I had convinced myself that I was no longer a good mother because I had to ask for help, because I could no longer do it all, and because I had to learn to say “no.” I continued to think that I needed to be everything, I needed to do it all, have all the answers, be the jack of all trades. The fact that I knew in my heart that I couldn’t be those things killed me inside.
In 2009, we welcomed our third, and last, child, a beautiful baby boy. The pregnancy was wonderful, as far as MS symptoms go, and I was lucky enough not to relapse as soon our son was born. We were so happy that I, and our son, were healthy and thriving, but it didn’t take long for fatigue to set in. Not the normal, every new mom, I haven’t slept a full night in weeks, kind of fatigue. The unrelenting, it doesn’t matter if I sleep 30 minutes or 18 hours, I still can’t keep my eyes open to save my, or anyone else’s, life. I would fall asleep while eating a meal, while in the tub, and while helping my daughters with their homework. It came to a point where my husband was calling into work if someone couldn’t come stay with me while he was gone or my daughters would stay home from school to help. Not only for my safety, but for the safety of our newborn son. It was at this point that I began looking for other options. I knew that I didn’t have the energy to homeschool our girls, but realized the educational benefits that would come from them not attending the local brick & mortar school (BMS). We couldn’t afford my husband to miss work or lose his job because he was staying home with me. My girls were old enough that they were able to help with the baby and I didn’t worry about them hurting him. I spent many days looking into our options and I found K12 and Connections Academy. After discussing it with my husband and our girls, we decided to enroll in Connections Academy. This meant that the girls were able to be at home during the day while my husband worked ensuring that our son would not go unattended to if my fatigue ran rampant, the curriculum was more advanced than the local BMS, and the staff constantly was going above and beyond to ensure the success of their students.
The switch from BMS to Virtual Academy was not an easy one, for the girls or myself. The first year was a lot of teaching the girls time management skills, as well as prioritizing tasks. The teachers were amazing. Our youngest daughter, then in fifth grade, had a teacher who called every afternoon to see if she needed help and ensure that she was staying on track with her assignments. This was priceless. We made it through the first year of Connections, barely. There were days that we laughed, cried, fought, and almost gave up. It was those days which we almost threw in the towel that I had to remind myself why exactly we had made the decision to go virtual. Not only was it for the safety of our son, it was for the better educational options which CA afforded our girls.
By the end of year one of CA, we had, again, settled into our new “normal.” We began to understand that life with MS meant that we, as a family, would have to constantly adapt. It also meant that the girls would have to take on new responsibilities and we would need to learn how to work better as a team. Overall, I was doing well. I had made it through the years since my diagnosis without a significant relapse; although, pain and fatigue were daily battles. I had to learn to take breaks, to not overdo things and to know my limitations. These were things that were not easily learned. Better yet, they were easily learned, just not easily adhered to.
Over the years, we have had our triumphs and our failures. Our oldest daughter is now a teenager, our other daughter is on the cusp of her teenage years, and our son started kindergarten. We are learning new things, daily, about MS, about each other, about compromise and team-work. I still have to ask our children to do their chores, sometimes more than once, I help with homework, chauffeur to sporting events and practices, maintain the house, grocery shop, maintain a tight budget, coupon, pinch pennies, cook dinner and everything else that all families must do. The key to our success is that I don’t do it alone. Whether it is my husband, my children, or friends, we tackle things as a team and ask for help when needed.
I hope that by sharing my everyday life, the good & the bad, I am able to inspire others to redefine the titles that our society has built. To become more comfortable and secure with what their limitations are and to find a solution that works for them and their family. We all are unique and our problems, and solutions, are equally as unique. While we may experience similar things, there is no single solution that works for everyone. We must find the t work best for our individual situation.
Being a “supermom,” in my opinion, is more about doing the things that are best for your family, in a way that suits your family, rather than doing it all by yourself. It is about accomplishing the necessary daily tasks while setting a good example and teaching your children valuable life lessons. I know that, although I cannot “do it all” by myself, my children will learn about overcoming adversity, about not allowing you situation to define you, and will hopefully develop a “never give up” attitude. Does that mean that I still don’t have days that I get depressed and feel like a “bad mom?” No. I still have those days. I still have to remind myself that while I will never fit Hollywood’s portrayal of “supermom,” my children know that every moment of every day I give 100% to my family and that, to me, is a “supermom.” It is not easy, but it is worth it.
This is my journey. I hope it inspires others to live outside of society’s definitions. I would love to hear from others as well. If you would like to share your thoughts or have questions,please feel free to comment.
I will also have my husband and daughters post from time to time. MS, like all chronic diseases, effects a family, not just an individual. Although many of us don’t realize it at first, those who love us also need support, advice, a shoulder to lean on, or just a listening ear. I hope by having my family share their ideas and feelings, it may reassure others (caregivers, spouses, children) that they are not alone and that there are others that feel the same way.