I don’t know if I could be more proud of a boy who failed his swallow study miserably.
This is what I wrote on social media the morning after the study, how I was struggling with the outcome. I spent the afternoon wallowing in my disappointment over Nathan’s lack of progress with his ability to eat.
The Backstory of Nathan’s Inability to Eat by Mouth
Ever since birth Nathan has not been able to eat by mouth without aspirating. Aspirating simply means that food or drink goes into the airway instead of down the esophagus. You’ve probably experienced this as “it went down the wrong way” while eating. That is aspiration. It feels like you are choking though nothing is technically blocking your airway. The reason this is so dangerous is that people who regularly aspirate are prone to pneumonia. Often you can’t even hear someone aspirate, which is the case with Nathan.
Nathan mostly has what’s called silent aspiration.
When he was a baby, this was devastating to me because I associated nurture with nutrition. I still do. Having a nursing baby is sweet and foundational to a mother’s ability to bond with her child. I fought hard for Nathan to be able to eat when he was in the NICU. We had lactation consultants, feeding therapists, OTs and fellow moms rooting us on. After five long weeks with no progress, a neonatologist finally convinced me it was time for a G-tube. You can read more about that story here. It was a whole hard thing.
Since then I’ve, mostly, made peace with the G-tube primarily because it takes away the nutritional stress from us. We are six years out and I thought Nathan was making some good gains with eating by mouth. We have been working so hard. We’ve tried some cutting edge therapies, such as vital stim, to try to initiate a strong swallow for Nathan.
Nathan has enjoyed the process of feeding therapy.
He LOVES to eat. I’ve never found a food that he won’t try and most of them he eagerly returns to for more bites. Nathan, seemingly, has been doing really well with Cream of Wheat. Every morning for breakfast, he’ll pound down at least half a packet, sometimes more. He loves it and it settles his stomach and his behavior in a way that you know he is satiated. For lunch and dinner, he usually eats pureed sweet potatoes, butternut squash, guacamole, hummus, or the like. It’s actually a semi-normal part of his life.
What We Learned from Nathan’s Most Recent Swallow Study
Last week, Nathan had a modified barium swallow study. His fourth. Periodically the doctors and therapists want to see him eat under fluoroscopy to determine how he’s doing with his aspiration. Two years ago at his study, he did really well and that’s when we started feeding him the purees I described above.
Last week, he aspirated on purees that have been considered safe for him to eat in the past.
I felt like all of the wind went out of my sails as I heard the speech therapists and radiology tech audibly moaned above me as I fed my eager-to-eat child. Yet he did so well with the study. It can be intimidating to be rolled into a hospital, prodded, and expected to perform in a sterile environment. And everything he ate had chalky barium mixed in so that they can see what happens in his throat on the X-ray.
After the study, the speech therapist reluctantly told us that she is recommending that Nathan not eat by mouth.
So the rest of the day I was sad. Super sad. For him and how much he loves food. For me and how much work I put into helping him. And for his therapists and all of the work, they put into helping him. And I complained about it to God using Psalm 10 as my guide. It was a hard day, but good.
“You, Lord, hear the desire of the afflicted; you encourage them, and you listen to their cry.” Psalm 10:17
The Larger Life Lesson of the Swallow Study
I think I have a tendency to over-identify with my child. In other words, his success is my success. And his failure is my failure. I think a lot of moms feel this way–that somehow our children are a reflection of our worth as moms. This is all fine and good if you have a child who is a top performer, flexible, and doesn’t face many challenges. Or, is it? You certainly feel the painful force when you have a child who struggles. But regardless of where you put yourself on the mom spectrum, the truth is that our children do not determine who we are and our value in life.
I’m learning, I can’t base my identity on who Nathan is and how well he’s doing. Sure I felt this a bit at first but after my afternoon of laying on the couch, meditating on Psalm 10, drinking cocoa and cuddling with Nathan, it became clear to me. Not only is it not true for me but not for Nathan either.
Just as my identity is not formed by my success or failure, neither is my child’s. I think that’s why I felt so incredibly proud of him after the study and why I couldn’t stop telling him so. My love and acceptance of my son are not based on what he can or cannot do. Neither is it based on the fact that he used to be able to do something and now he can’t.
And the really good news is that it’s the same with us as parents of children with special needs. God loves us whether we can perform to a set of standards or not. For all that He requires of us, He made a way for through the cross. He loves us because He made us and we belong to Him. And I love Nathan because God made him and he’s mine.
Swallow Study Follow-up Update
Yesterday at Aerodigestive clinic, I got back into my advocacy mode and pitched reasons why Nathan needs to be able to eat, even if he is aspirating a little bit. And the doctors agreed that he can continue to eat for pleasure along as we agreed on the risks associated with him eating. It felt like a victory. But the bigger victory happened in my heart. That I love my child no matter what he can or can’t do. May I love myself and everyone else in my life the same way.
“It’s your existence I love you for…Existence seems to me now the most remarkable thing that could ever be imagined.” – Marilynne Robinson, Gilead
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!