Beauty in the Broken-ness

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The older he gets, I often find myself focusing on the things my son Benjamin struggles with.  Because naturally, the older he gets, the harder things become for him.

It is a knee jerk reaction to hone in on the difficulties he’s experiencing because as his mother I want to “fix it” for him; I don’t want him to continue to struggle with things most children his age have no problem with.

But the fact of the matter is, he will always be blind, and he may or may not continue to experience significant developmental delays throughout the rest of his life.

Allowing my feelings of sadness and loss over his inability to communicate verbally and to relate more easily with the people around him isn’t going to stimulate further brain growth or neural connections for him.

I’m allowed to feel sad, but choosing to be sad all of the time does no one any good.

Yes, we have our share of difficulties, but we also have our share of joys.  And one of the ways to help combat those feelings of sadness for me is to take some time to reflect upon all of Benjamin’s strengths and admirable qualities.

My child is amazing because he doesn’t take life for granted.

He has fought to be here since entering the world at a lowly birth weight of 15.9 ounces and measuring 8 inches long.

He has one of the most unique, infectious belly laughs you will ever hear, and I think the reason for this is because when he chooses joy, it is pure joy.

He chooses joy alongside the suffering and the struggle.

He slows down to appreciate the sunlight warming his back shining in through our living room window and giggles when he feels the breeze blowing on his back outside.

I think often times many of us choose to singularly focus on our sorrows, and we forget that we can still choose to see goodness and be joyful in the midst of our trials in life.

Benjamin has always seemed to recognize this, and he is the person who truly taught me how to do this as an adult.

My child is amazing because he understands the value of the present moment.

Yes, he has scars from his past.  Yes, what he endured as a baby will have lifelong impacts for him going forward.  But he doesn’t unreasonably hang on to those hurts – he chooses to adapt and strives to live his best life.

He isn’t overly concerned over what the future holds for him.  He simply IS.

He naturally searches for solutions to best harness his strengths.  Because he is blind, he devotes much more of his attention to auditory stimuli – with music being one of them.

He may rarely ever speak one word, but not a day will go by without hearing him hum a song perfectly on key.

He has begun to understand he can trip and crash into objects and people more easily than others, so he “listens” for foot traffic from his little brother in our kitchen before safely running a lap around our island counter at full force speed.

Despite being blind, running at full speed is one of the things that brings him the most joy.

My child is amazing because he doesn’t try to be someone he’s not.

He doesn’t “do” or enjoy many of the typical activities you’d associate with a 4-year-old child.  But in all honesty, probably the only ones ever bothered by this was me, the parent!

He is happy being who he is.  He loves music, his toy car he can wheel around in, and Legos.

Of course we will continue to challenge him, but I’m realizing that as Benjamin grows, there are certain things he may not ever truly enjoy doing.  And that is OK.

It just means we get to find other ways for us to bond and spend time together.

Many times, just being with him is enough for him.  He just wants to be near the people he loves and who love him.  He is secure in who he is and of the love his family and friends have for him.

He recognizes that he is “enough”.

My child is amazing because despite the past hurts he’s endured, he chooses first and foremost to embrace the good in himself and in others.

He reminds me that there is beauty in the broken-ness, if you so only choose to recognize it.

Written by, Philomena Marie

My son Benjamin was born at 25 weeks gestation in January 2015 when I developed severe preeclampsia. He is legally blind from a condition caused by his prematurity and continues to experience significant developmental delays. Over the years Benjamin has shown us that he writes his own story – and we are here to listen. You can follow our journey at The Book of Benjamin.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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