Persevere is a word that has been coming up for me a lot lately.
I know the word well, but knowing it doesn't make living it any easier.
The Merriam-Webster Online Dictionary defines persevere as continuing with an undertaking despite opposition, competing pressures, or discouragement. It identifies persevere as an intransitive verb, meaning the action is not done to someone or something else. It describes what we keep doing, even when it's difficult.
Recently, I saw a post from a parent in one of my special needs groups who was asking for encouragement. She was back in the hospital with her son, who has disabilities, and she said it felt like a prison. We are only nine months into the year, and they have already spent five of those months in the hospital.
She was tired, and she needed encouragement. Yet, the fact that she was there, continuing to show up for her son despite how difficult it had become, speaks to her perseverance.
That is persevering in action.
When I think back on the word across the lifespan, we have persevered all our lives. From childhood, making friends or schoolwork that didn't come easily. We are persevering. To the young high school or college graduate job searching. Or the mom or dad who lost their job and is learning to pivot to take care of their family. Those are persevering in action.
I turn the mirror inward and look at my own life journey. It took years for my grades to catch up with my ability. I had the ability all along, but my grades did not reflect it because I learned differently. I had to teach myself how I learned so that I could access learning in a way that worked for me.
This leads me to another word in the persistence and perseverance family: persist. The Merriam-Webster Online Dictionary defines persist as “to go on resolutely or stubbornly in spite of opposition, importunity, or warning.”
Where do we see persistence more clearly than in the lives of special needs parents who work against the odds that try to define our children and our experiences?
What about the parent who recognizes that something is different about their child’s development? Even when one doctor after another dismisses their concerns, that parent persists until what they have been sensing is finally uncovered and their child receives a diagnosis.
When I think about raising a child with disabilities, I think about the inaccessibility within society, the isolation that can come with it, the nights of repeated waking, the interrupted sleep, and the ongoing work of trying to balance everything. Yet, we persist.
As I sat with the word persevere, I recognized that persevering is not one decision made in a single moment. It is the ongoing work of finding a way, learning, reading the room, adjusting, seeking second opinions, and trying again. When something we try with our children does not work, we learn from it and try again.
But sometimes the problem is not that we are failing to persevere. It is that we do not know what we are persisting toward because we lack clear goals to guide us.
What do I mean by that?
If I were to ask you, “What goals do you have for your child?” what would you say?
My goal has always been for my son to walk, talk, and live independently. Given his present circumstances, I recognize that these things may never be possible for him. But does that mean I stop?
No.
I will persist in giving him every opportunity to develop his strengths and become the best version of himself. But I cannot do that if I see him only as he is in the here and now. I have to learn to see him across the lifespan and plan with his future in mind, because some of what we want for tomorrow requires us to start planning today.
I mentioned the lifespan of disability earlier, and we don't talk about it enough.
Looking at disability across the lifespan means seeing the whole person beyond their present age or stage. It means recognizing that a child with disabilities will grow into an adolescent, a young adult, a middle-aged adult, and possibly an older adult, with changing needs, strengths, relationships, and opportunities along the way.
This wider view helps us consider what may be needed later and what we can begin putting in place today.
Recently I spoke with a father who said, "My daughter is 58 years old. I never would have imagined having a 58-year-old daughter with developmental disabilities."
His words were profound. Because until that moment, I never imagined that my son would one day be an older adult. This changes how I'm preparing for his tomorrow.
We strengthen our ability to persevere by seeking information from people who have lived this journey.
We strengthen it by asking better questions when we take our children to see specialists.
We strengthen it by researching and understanding the remedies and solutions being proposed for our children so that we can make informed decisions.
Most importantly, we strengthen our perseverance by being in community.
If community is one of the tools that helps us persevere, then we must be intentional about the community and support surrounding us. Take a moment to consider these questions:
Do I have people who can help me see beyond the immediate situation?
Sometimes we are so close to what is happening that it is difficult to see the larger picture or recognize the next step.
Do I have access to knowledge that helps me make informed decisions?
Support should do more than tell you what to do. It should help you understand your options and determine what makes sense for your child and family.
Do I have a community where I can both receive and contribute?
A strong community gives us room to learn from others, share what we have learned, ask questions, and know that we are not navigating everything alone.
One thing perseverance has taught me is discernment. We must learn to evaluate the information, events, and opportunities we encounter and decide whether what is being offered has value.
We cannot continue doing things the same way and expect different results. But we also should not abandon community simply because one experience did not meet our needs. We need community, and community needs what each of us carries. I often remind parents that our experience can become wisdom for somebody else.
So, my invitation to you is simple: Keep asking questions. Keep learning. Keep imagining what may be possible for your child. Keep persevering. And remember we are stronger together. .
