Celebrating Nathan’s birthday is hard for me. His birthday is not all about having the perfect theme, party favors, balloons, and a birthday cake. It’s about remembering a day that changed the trajectory of my life forever.
The night he was born it quickly became apparent that something was wrong. His cry was weak and he was not doing normal baby things. He was continually choking on amniotic fluid and he couldn’t keep his temperature up. When he stopped breathing, our introductions were interrupted by the specialists who whisked him away to the NICU and began running a series of tests. Tests which they felt would tell us what was wrong with him. Two weeks later a geneticist gave him a diagnosis that I thought would completely define him. I’m slowly learning it does not.
The day of his birth was supposed to be a celebration. Instead it marked the beginning of a painful and terrifying time in my life. I struggled through a fog of grief and depression over my son’s diagnosis during the first year of his life. On one hand, doctors told us he may not survive his first year. On the other, they said he may never walk, talk, and would be living with us as an adult unless we decided to transition him into a group home. It was devastating. Certainly not the dream we had for him at birth.
Three years later and he’s still with us. There are many things he is doing that we did not expect like crawling, pulling to stand, walking in a walker, and climbing up onto the couch with a step. There are other things we are still waiting for him to do such as: eating without a feeding tube, babbling, clapping, and walking independently. I could go on and on, but I earnestly try not to focus on those things.
Because he is exceeding my expectations in every way. Not in the physical things he is doing, but in who he is as a person. He is a very special boy entangled in a disability. A boy who is so sweet when he stares deeply into my eyes or when he cuddles up on my lap and listens to me talk. A boy who clicks his tongue at me or grunts like a grizzly bear to get my attention. A boy who is feisty when he wants to do something on his own but isn’t completely able to explore this world the same as most toddlers.
Nathan’s disability is giving me a new perspective on this life. My way of living is driven by my schedule and by anticipating the next need. His way of living is to be fully in each moment. He has the ability to slow me down to real-time like no one else. To be fully present with him. To interact with him regardless of whether I get something in return (though that is still hard). To pay attention to what he is communicating through his movements and sounds. To be with him now, rather than strategizing and preparing for what is to come.
The first year, his birthday felt like an accomplishment. He overcame some significant medical obstacles and made it one year when some doctors were telling us he wouldn’t.
The second year, his birthday felt like any other day on the calendar. We had started to get our stride with all of Nathan’s therapies and medical procedures, and were learning our “new normal.”
This third year has been hard. We’ve been dealing with significant medical complications between Nathan’s kidney issues and episodes of unconsciousness. It’s been stressful and frustrating as I can see how these things are holding him back from developing. However, we’ve learned not just about caring for his delicate body systems, but about Nathan. We can communicate with him with some sign language and even four words. We know his rhythm and the schedule that works well for him. We know what things motivate him and which personalities can influence his therapy outcomes. We even know what makes him laugh and what makes him sad. We know his memory has locked away things that I have long forgotten. He observes people intently and understands what we are doing and saying about many more things than I imagined at this point.
So this third year his birthday feels like a celebration. A true celebration of who he is and his role in our family.
It is still painful to think about the memories of his birth and I get sad when I notice the milestones he’s missing. This year there won’t be a big feast with lots of yummy food and a themed cake, because he still can’t eat by mouth, but this celebration is a true celebration. A true celebration says, “We’re glad God made you. We’re glad you’re here.” I am realizing more every day that it’s not what he does, but simply who he is that is worth celebrating.
This is what truly defines a person.
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.” – Psalm 139: 13-14
Thank you to everyone who came out to run the sMiles4Sammy 5K and celebrate Nathan’s birthday. Not even everyone is pictured here. It was so fun and filled me with much gratitude for all of you.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!