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Doing What Needs to Be Done

Updated: Jun 4

I can only imagine that when you have a child that has Down’s syndrome, Batten disease, or many of the other disorders that affect both mind and body, that you do what you have to do. Of course, it would be a very intensive labor of love to help them and keep them thriving. I imagine that people would think that you were awesome because of all of your efforts, and you are awesome, but you are also only doing what needs to be done.


Well, what do you do when your child/children have a disorder like childhood or teen-onset Myotonic Dystrophy (DM) where your children look normal except for some male pattern baldness and maybe a little difference in their gait (walk)? And most of what you read states that it is a muscle disease.


I can tell you from my experience that the mental/cognitive effects are as devastating as the physical effects (and the physical effects are extensive from swallowing, pneumonia, weak hand movement, unstable walking, to the heart quitting). The point that I am trying to make is that many people compliment me and tell me what a wonderful mother I am. The reason that I share my experiences isn’t to brag about myself, I am trying to make a point that those with DM are affected in both body, muscles, and their mind. Those of us who are caregivers for those with DM are only doing what needs to be done.


Because DM individuals look mostly normal, most of us don’t realize the effects on their mind, including us parents/caregivers. I may sound like a broken record about what I do but I am making the point that I do what I do because my family would not only cease to thrive, they would probably not be alive if I didn’t adapt my life in whatever ways are necessary to be there for them.


When my children had issues there was no name for what was going on. Starting out as a young mother when my children were little was a very confusing time. There were issues in childbirth that the doctors couldn’t explain. I had excessive amniotic fluid. The doctors couldn’t explain why. They thought that I might have gestational diabetes but all of the tests ruled that out. My babies had issues at birth, either having to be delivered by C-section or they had issues breathing. After their delivery and spending time in the NICU, they came home with me and the doctors that delivered them weren’t involved anymore in their care so the causes of their birth issues were never figured out. As far as I knew, it was just a fluke that my babies had problems at birth.


Each of my children had unique childhood issues as they grew but since I was living with them day-to-day I didn’t figure out that there might be a neurological problem. I did find mothering to be very confusing. It seemed that my children had more issues than most but I couldn’t see the whole picture and never figured out the patterns that would eventually lead to a diagnosis.


I believed that we were just a unique family that didn’t seem to fit into society. We were a part of a conservative religion (Mormon) and I took things personal thinking that I wasn’t doing a good enough job as a mother. For some reason my children were more tired and less motivated than other children.


It wasn’t until my oldest was 20 that he, my husband and the rest of our children were diagnosed with DM. All of their childhood we struggled never realizing that there was a reason and a name for these issues. Part of the DM journey is that diagnosis often takes extremely long. Sometimes 14+ years. Many people get misdiagnosed with other diseases. It really messes with your thinking when you sense that something is amiss but there aren’t any answers or any explanation.


In many ways, diagnosis is a relief because you learn that you weren’t crazy. You learn that there is an explanation for everything that you were sensing. Diagnosis is sad because you would never want your family to have a disease and you wish that you could remove the diagnosis but you also know that when you didn’t have a name for it you were still living with it. Having the diagnosis of DM can also help protect your family in the future. You now know that there is a potential for sudden death due to cardiac issues so you can be more proactive at getting your loved ones seen by a cardiologist and hopefully preventing serious heart problems. You can also be more proactive when anesthesia is needed so that those treating your loved ones can be more careful with the anesthesia that they need and also monitor them more carefully post-surgery. Calming medications and narcotics can be very dangerous for those with DM. Having the diagnosis puts all of this information at your fingertips helping to protect your loved ones from serious harm. This information is all available at myotonic.org.


Remind yourself regularly that you are looking out for your family and doing what needs to be done to keep them safe. Look out for yourself too through anything that helps your mental health including therapy, meditation, medication, etc.




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