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On the Days I Feel Like a Terrible Mother

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Sometimes I feel like a terrible mother.

My 12 and 15-year-old kids never eat breakfast at home, and I rarely cook dinner. I’m sure they don’t eat a perfectly well-balanced diet, and part of me does not give a damn. I’m not good at planning social opportunities with others their ages. In fact, there have been times when I’ve avoided taking them to social situations on purpose because I just did not want to deal with the trouble. I’m also not good at keeping track of their school assignments. Some nights I actually give my kids a “homework pass” because I just do not feel like making them do the work or I am too tired to help. I frequently take naps while my children play on their electronic devices, and there are entire days when I don’t get out of my pajamas and mostly lay in bed. On those days, I let the kids fend for themselves. They survive on food they can heat in the microwave. I’m even guilty of falling behind on the schedule for doctors’ appointments. Oh, and I haven’t taught either of my kids to ride a bicycle.

My kiddos may not have the best eating habits, but they’ve come a long way over the years in this area. When they were toddlers I took them to occupational therapy (OT) which included feeding therapy so they would be able to overcome the sensory processing issues, a result of their extreme premature birth and also a condition called chiari malformation. With time and patience, they learned to eat solid food and cope with aversions to certain food textures. They may not eat breakfast before leaving the house in the morning. But they never leave for the day without a hug, a kiss and an “I love you” from me.

Cooking dinner every night is difficult for me because I’m usually fatigued from working full time and managing the special education and medical needs of our family. The kids are not the only ones who struggle with a chronic medical condition. They inherited their chiari malformation from me, but we didn’t learn about it until after they were born. Talk about feeling like a terrible mother.

It’s difficult to manage it all some days, but I do make sure we have healthy meal options in the house. So what if the meals are not cooked by me, right?

True, I do not plan many social opportunities for my children, who both have a moderate to severe bilateral hearing loss and because of this, lagging social skills. But when they were younger and I saw them struggling socially, I did a lot of research to learn about what services and accommodations they needed to help them navigate better in social situations. I also shared my findings about the special education needs of deaf and hard-of-hearing children with our home school district.  It took some time and a lot of conversations, but eventually they agreed to send the kids to a school district where they could receive the services they needed.  Now they are becoming more comfortable with their hearing loss, learning ASL (American Sign Language), catching up on the social skills their hearing peers learned by simply eavesdropping, and they are making huge gains academically.

Yes, I’ve avoided taking my children to places where I knew they would be overwhelmed on a sensory level and also not be able to hear well. But I have sought out other opportunities for them to interact with children who have shared experiences in being deaf or hard-of-hearing and live with chronic illness.

Sure, I’m not the greatest when it comes to keeping track of school projects. But I’ve hired tutors to help the kids with homework and manage the necessary timelines for assignments.  I’ve learned it’s easier on all of us if a third person takes on this role. This way, I don’t have to be “the heavy” when it comes to the kids’ schoolwork. I have to push them in so many other ways, socially, medically and emotionally; and this is just one less battle I have to fight. It makes our evenings together more pleasant.

It’s also true that I sometimes will write a note to the kids’ teachers excusing them from homework assignments, but this is typically when they are dealing with one or more of the random symptoms they experience because of their chiari malformation and its related conditions. After all, it’s difficult to focus on homework when you’re in pain.

I understand what my babies are feeling because I experience these same symptoms on a regular basis. I take a lot of naps, but I only do so on “my bad days”  — days when my symptoms flare and I suffer from terrible migraine-type headaches, brain fog, body aches, pains, muscle twitches and fatigue. Thankfully, my kids’ symptoms seem to be less frequent and less severe than mine are, at least for now. On my bad days, the kids often do things to help me feel better and pick up the slack around the house.

They understand how I am feeling.

At times I have fallen behind on the schedule for necessary doctor’s appointments. Not because I do not understand the importance of their medical care, but because it is difficult to schedule everything we should be doing medically and educationally into a neat and tidy time frame. Now that the kids are older, it’s more difficult for them to miss their classes and keep up on their assignments; and I’ve learned we have to prioritize by only scheduling the more critical doctors’ appointments, like the otologist, cardiologist, neurosurgeon or the nephrologist, on school days. Less critical doctors’ appointments, such as the orthopedist, dentist or the orthodontist, can wait until a school break or summer vacation. I do my best to manage the medical appointments, but I also have to leave time for other important events, like IEP (Individual Education Plan) meetings, extracurricular activities and time to just hang out.

It’s true, neither of my kiddos can ride a bike. It’s just not been a priority for a number of reasons. Over the past 15 years the kids have undergone 24 surgeries between the two of them. It’s difficult to learn to ride a bike when you’re recovering from surgery. In addition, individuals with chiari malformation often have poor balance and gross motor skills. We tend to be on the clumsy side, which makes riding a bike kind of challenging.  Honestly, it’s become one less battle we all have to fight.

Yes, there are moments when I feel like a terrible mother, but when I find myself thinking so, I stop the negative self-talk track and I tell myself this:

“I am a good mother, and I love my kids more than anything in this world. I have done and will always do my very best to be sure they have the resources they need to reach their full potential in life. I may not be perfect, but I am certainly not terrible… and I will never give up.”

Despite all of the challenges and adversity, my kids are bright, curious, respectful, talented, funny and kind individuals who have compassion and empathy for others. They also have a dry and witty sense of humor beyond their years, which has helped them through some difficult days. They are old souls, and they both have an incredible sense of intuition which will serve them well in life.

Yes, I am a good mother. I may not be perfect, but I must be doing some things right.

The Mighty is asking the following: Are you a mother with a disability or disease? What would you tell a new mother in your position? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 9, 2016
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