PUZZLES & CAMO

SHELLY HUHTANEN

Caregiver Strength

We still have a way to go before we are through this pandemic. But if we make a point to remind ourselves that we are worth advocating for, not just for our children, we'll make it. We'll make it through with our sense of self intact.

I had a dream last night. I was sitting in the corner of my living room in a beanbag chair. I had just woken up. My teeth weren't brushed and my hair still had a dangling, disheveled ponytail where half of my hair was hanging outside of the rubber band. I looked around and my living room started to fill with people. I saw people that work with my husband. I saw people from my son's ABA team, and Hayden's friends. I noticed my windows were open and water started to spill into my house. The water turned into people. People started spilling into my living room and then my kitchen. I yelled, "Get out of my house!" as I ran up the stairs getting away from everyone as they started to climb my walls and stairwell. I finally reached my bedroom, shut the door, and locked it. Then I woke up. I couldn't get back to sleep. What a crazy dream! Why did I have it?

After lying in bed for a while, I realized that my dream was describing how I feel. I am approaching the one-year mark of when the pandemic significantly changed my life as a mom, a wife, and basically a person. Last night, I think I hit rock bottom. I thought I had hit rock bottom a few months ago, but nope. Now, I think I officially hit rock bottom. I mouthed the words, "I miss my life. I want my life back." I didn't realize how much I liked my life until it was taken away from me.

Over a year ago, I had time to myself. After I took Hayden to school and Broden to his ABA clinic, the day was mine. I could run errands, prep for the course I teach, write, go for a run, walk my dogs, go to the grocery store, mail packages, get my hair cut, get my teeth cleaned, or go to a doctor's appointment. My options were limitless. Boy, could I get things done. I was productive and proud of it. Once Broden moved to an inhome program, all of that changed. My freedom became a distant memory and my teaching aspirations were put on hold.

As a mom and caregiver, this is what I'm supposed to do, right? As a mom, I'm supposed to stay flexible, and if it means that I sacrifice my freedom, then that is an expectation that I need to meet. Or is it? I have learned that in order to not lose myself, there needs to be some give and take. That doesn't make me a bad mom. It makes me a mom that survives and sees the importance of holding on to the fact that acknowledging the need to keep my sense of self is sacred.

I'm learning that if others do not see this necessity, it doesn't make it less important to me. Expectations will never go away, but I need to do a better job at not letting them control me. My son, Hayden, normally gets out of school at 3:20 p.m. After talking with Broden's therapist about how he performs each day, there may be circumstances where it takes a little longer than usual. Yesterday was one of those days. At a stoplight, Hayden texted me at 3:21pm, "Mom! Where are you?" The light turned green so I pressed on to his school. I arrived at 3:30 p.m., "Mom, I texted you. You are always late to get me now. I hate waiting by myself because everyone is gone. After school, I just want to get home and unwind." I smiled at the thought of another unmet expectation. Before putting the car in drive, I turned to him and said, "You're not my only child. You're not the only one who has certain expectations of me. You're going to have to remember that I'm doing the best I can and that's going to have to be good enough."

I reminded him that I would always remember to pick him up from school, even if I'm nine minutes late. Caretakers have been truly challenged this year. As a caretaker, I feel like I'm seen as selfish for expressing the need for some relief. When I mouth the words, "I miss my life," a little voice inside of me says, "You're not supposed to say that. Your job is to sacrifice for your children." I don't believe that little voice in my head anymore. I think we can do our best to be there for our children and also learn to advocate for ourselves. As caretakers, we cannot lose our sense of self. If we do, then we send a message to ourselves that we do not have value. Also, by advocating for ourselves, we are teaching our children that it is not okay to lose yourself, and that there is value in creating boundaries. My health will surely benefit the ones I care for each day.

There have been quite a few articles lately on how hard this pandemic has affected moms and caretakers. A few months ago, an NPR article was entitled, "Being a Mom is hard, being a Mom in a pandemic is harder." I'm going to go one step further due to experience. Being a mom to a special needs child during a pandemic is the absolute hardest. We still have a way to go before we are through this pandemic. But if we make a point to remind ourselves that we are worth advocating for, not just for our children, we'll make it. We'll make it through with our sense of self intact.•

PUZZLES & CAMO

Shelly Huhtanen is an Army wife stationed at Fort Benning, GA who has a child with autism. She enjoys sharing her experiences of day-to-day life caring for her son with autism while serving as an Army spouse. She authored "Giving a Voice to the Silent Many" that encompasses many stories of raising a child with autism in the military. Shelly is passionate about autism advocacy for our military and works to bring awareness to our local legislators and command about providing better support for our military autism community, such as better health care and education.