Life with MS

My Story - Darbi Haynes-Lawrence

By Darbi Haynes-Lawrence

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It is well known that multiple sclerosis affects our partners, oftentimes requiring a new ‘caregiver hat’ to be added to their theoretical wardrobe. A committed relationship, whether a couple is married or not, typically carries an expectation of sticking together “in sickness and in health.” We anticipate that our roles may change as we journey through life together. One partner may need a little more assistance here, the other partner needs a little more assistance there. It is a give-and- take, a yin and yang, in relationships.

What we may not anticipate is for the roles for our children to change. Adding a ‘caregiver hat’ to a child is difficult. As a child and family studies researcher, I was aware that families coping with chronic illnesses like MS often need their children to physically ‘step-up’ and assist in families slightly more than those children of families not experiencing a chronic illness. And while I personally I believe it should be avoided as much as possible, with forethought and careful monitoring, children can help in ways that are developmentally- and age-appropriate.

There are times, however, when situations occur that are most unexpected. Just like us, our children can be affected by our disease not only physically (in the sense of having to take on additional chores or responsibilities), but emotionally as well. On a chilly November night a few years ago, my lovely child acted as an emotional caregiver, consoling me in response to a situation that still, many years later, weighs heavy on my heart.

We were at a local sports center. Our daughter had recently tried out and made a travel volleyball team, and we were attending our "welcome to the volleyball club” meeting. At this meeting, one of the coaches for the team unthinkingly made fun of my condition. As the coach was presenting information to our parent group, I was smiling and taking notes. She stopped and loudly called me out for "constantly shaking your head 'no' at what I say." Dear readers, I have a tremor, which makes my head shake in a slight “no” fashion. If I'm nervous, my tremor is much worse. I also walk with the use of a hot-pink cane, which I had with me at the time.
There we were in a meeting with a group of parents and kids, all of whom we would be spending the next six months with as we travel about and watch our daughters play volleyball, when this coach calls me out. I replied, “I have a medical condition.” She asked, “What?” I said, “I can’t help it. I have a tremor from a medical condition.” I literally thought my face was going to burn off because I was so embarrassed. I had to be the brightest shade of red. To say that was a mortifying experience is an extreme understatement.
My child, Sami, was sitting right beside me during this entire exchange. That woman can embarrass me all she wants, but when she pointed her finger at me, scowled, and belittled me, she might as well have belittled and shamed my daughter.

There we were, in a group that was so exciting for Sam because she tried out and made the volleyball team. Then, in our very first meeting – this happened. Might I add, this belittling came directly after the coach spoke about how we would all become one "great big family!"

What Sam did next absolutely surprised me. While I was overwhelmed with embarrassment and worry for Sam, she physically leaned against me (her version of a silent hug). When we left, my "growing more independent" little lady, in front of all these people, grabbed my hand and held it all the way to the door, whispering, "Mom, it’s going to be okay. It’s all going to be okay." Tears still well up in my eyes just reflecting on this memory.

I had never been more proud of my child! I had also never been so angry. It is my job to console my child. It is not my child's job to console me. I was furious at that coach – for her ignorance, for pointing out a difference in a brand new group of people, for putting that burden of consolation on my child's shoulders. Her behavior was out of line.

Once we made it into the van, I got myself together (I was only a mess on the inside) and flipped the script, putting Sami and myself back in our rightful roles and helping guide her through a tough situation. We just sat together in the van for a little bit. Sam spoke first, and said “I used to really like that lady. She was nice.” I told her everyone makes mistakes, and it’s always a good idea to lean to the side of kindness, and never make assumptions about people. I continued to say that I am sure she is a lovely person; she just made a bad choice with her words and actions. We decided we would give her another chance. That was extraordinarily hard to do at the time.  It was important that I modeled appropriate behavior for our child. In complete honesty, I truly expected this coach to approach us the next time we saw her, and offer an apology. Unfortunately, even after multiple interactions, that never occurred.  

My husband and I are firm believers in using a problem-focused method of coping with stress or stressful situations. I’ve written about this approach and believe it holds true to everyday life. In short, when facing a problem that causes stress, one can sit back and fuss. Or by using a problem-focused approach, a person can take direct action on the situation that caused the stress. In our example, we could have directly approached the coach, but in this instance Sami and I were far too emotionally distressed to have a positive exchange with the coach. Instead, after the meeting ended, we removed ourselves from the situation quietly, engaged in processing the situation, and made a plan on how to interact with the coach in future meetings. We did not let the situation define who we are. We also did not make the coach into a terrible person because of her actions towards us.

As much as I hate MS, I hate it more for what it continues to do to my Sami. Her shoulders are growing broader, but my burdens should not be on those shoulders. My role as her mother is to protect her from as much of the burden of this disease as possible. But when I cannot, my role is to model and teach her how to appropriately handle these burdens and frustrations. Whether I have an illness, or am a perfectly healthy parent, her life will not be void of stressful situations. Thus, instead of sitting back and fussing over situations that may come out of left field, so to speak, I'm using these opportunities to educate her on how to handle stress.
We all will experience stress, so why not ‘flip the script,’ and use the experiences we have as preparation for life for our children? Who knows, maybe we will teach them to grow with grace and class, and further contribute to them becoming amazingly loving and empathetic adults.