Sometimes Caregiver Life is Hard

Sometimes I feel like I’m two different people. I’m the upbeat, energized mom who gets stuff done for her child with disabilities. The mom who wakes up at 3:00 a.m., heart pounding in a panic. I’m the mom who cries in the shower in sheer frustration and exhaustion. The doer, getting things done, pulling the team together and coming up with a plan. At the same time, I’m frequently overwhelmed and discouraged.

I couldn’t love my son more. His smile is pure joy. The fact that he is living and thriving is a miracle. His laughter is contagious. Anyone who knows him falls in love with him.

But this life is hard. The responsibility of it all weighs me down. I keep track of so much medical information, make legal arrangements and organize documents. I try to find meaningful activities and feel guilty if I miss an opportunity. 

I worry about messing up his government benefits and making hard choices when there are no good options. And of course, the big one: planning for his care after I’m gone. These are all really hard things. Anyone would feel smacked down by it all sometimes.

And yet, I do take good care of my son. I mostly stay on top of all the details and usually do a good job managing everything. I’m not faking it when I’m organized and energized and reaching out to help other parents. 

To keep my sanity, I must find a way to hold these conflicting emotions and experiences all at the same time because they are all real and true. 

I try to honor and acknowledge the positives and negatives and remember to be kind to myself. Self-compassion is one way to be kind to yourself. When I say aloud, “This is hard!” I’m practicing self-compassion. It helps.

Another huge help is knowing other mothers in similar situations. The more their child is like mine, the more we lean on one another. Some of these women I have known for years. We have lived through similar highs and lows with our kids. I rely on them for practical support because getting reliable answers to the never-ending questions does help relieve stress. 

But I also crave the deep understanding that they can give. They get it. They’ve been there. I know they speak honestly when they say, “You’re right. This is hard.”

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