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Patient Stories

Lincoln is Going to be Lincoln: How I Learned To Stop Worrying About My Son With Special Needs

Lincoln Newborn

Parents worry. Parents worry about their child’s growth, development, friends, school, future. It’s a universal truth, baked into our biology.

For most parents, these worries are about “how” their child is going to grow up, and “when” various milestones are going to happen. From walking and talking to riding a bike and attending birthday parties, to graduating high school and working a job. For most parents, it’s a given that these events will happen, and the anticipation of their arrival is part of the joy of parenting. 

When a child is diagnosed with special needs, however, a parent’s worry can snowball into anxiety. Suddenly, all the assumptions about their child—assumptions as basic as good health and independence—fly right out the window. The future, so recently brightened by a sweet little baby, becomes dark and uncertain.

That’s how it was for me. 

Lincoln now

My son Lincoln, now 3 years old, is a healthy and happy little boy with developmental disabilities, resulting from a rare anomaly on his eighth chromosome. Most kids with Lincoln’s condition grow up to live healthy and fulfilling lives, with considerable assistance and support. 

Lincoln is the light of our lives. He has thick, blonde, curly hair. His laugh rings like a bell. He doesn’t walk by himself yet. So he scoots around the house in a walker, which allows for plenty of exploration and mischief. He’s delayed in speech, but he has a remarkable ear for music, and he enjoys singing Christmas carols, show tunes, and nursery rhymes.

I’ve learned how to manage my worries about Lincoln, but it took a long time. In the first several months of Lincoln’s life, I struggled mightily with questions about Lincoln’s health and development.  Will I be able to teach him to downhill ski, as my parents did for me? Will he even walk? If not, how will he play with his friends at school?

Wait, can he even go to school?

Lincoln in therapy

I stressed over trying to understand his medical diagnoses. How does a baby with “low tone” grow stronger and achieve mobility? Even after I learned about the benefits of regular therapy and practice, I still worried about my own ability to rise to the challenge.

How do I teach him to hold his head up, or roll over, or sit up? What if I don’t do enough therapy exercises with him? Will I be to blame if he doesn’t achieve certain milestones?

These are big questions. But as I discovered, they all have the same answer:

“Lincoln is going to be Lincoln.” 

It’s a phrase my dad came up with. He often said it to me when I fretted over Lincoln’s future. The phrase is something of a mantra, and it has an instant calming effect when I repeat it to myself. 

“Lincoln is going to be Lincoln.” 

What it means is that Lincoln is going to fulfill his own potential, at his own pace. My family and I can help him, of course. We can support him with love, attention, nourishing food, and a good night’s sleep. 

We can work with his specialists at Gillette and do play-based therapy to help him grow stronger and more coordinated. We can instill in him the values of curiosity, self-confidence, and work ethic. But we can’t change his genetic make-up—his unique “instruction manual” that resulted from the mutations on his eighth chromosome. We can’t “make” Lincoln walk if his body and brain just don’t get there.

Is Lincoln going to walk?

I don’t know.

“Lincoln is going to be Lincoln,” is what I know for sure.

This phrase allows me to leave off worrying about the future and focus on the present moment. This was an important lesson that took me time to learn. Now, I take things one day at a time. I cherish Lincoln for who he is right now, not what he might be able to do in the distant future. 

In truth, the future is unknown to all of us. But I do know with absolute certainty that Lincoln is going to be Lincoln, tomorrow as well as 50 years from now. 

My beautiful, sweet, inquisitive son, Lincoln.

Allison and Lincoln