Understanding My Son's Pain

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[Editor’s Note: This post is the last featured entry in the Journey to Motherhood with Ricki Lake story contest. -- Jenna]

I felt a pang of dread when he started coughing. I knew a cold could go south quick, that it would only be a matter of time before it made its way down to his lungs. Within 24 hours sure enough his cough had changed.

I was business-like with the pediatrician. “He has lung issues due to Marfan syndrome and he destats at night, so he’s going to need a pulse ox to see how his oxygen is doing.”

Pulse ox of 82. Call to the pulmonologist. Directed to the ER.

This is par for the course, I told myself. I’d brought along toys for my 14-month-old and we waited the results of the chest x-ray. Possibly pneumonia. J would need an IV and be transported to the pediatric hospital in the city.


The nurse fished for a vein. One poke. Two pokes. Three pokes. Four. I held him down as he screamed and his eyes searched for mine in a panic. “I know, Baby, I know.” I tried to soothe him. “It hurts, but it’ll be over soon.”

And I did know. How many times had I squinted back tears while IV after IV didn’t work? How many times had I been in the ER?

I knew because I have Marfan syndrome too. I knew that any children I had would have a 50% chance of inheriting the disorder. My husband and I went back and forth on having children, weighed the pros and cons. Would it be selfish? I wondered that sometimes. But I also believe that motherhood, however you come by it, is one of the most selfLESS things a woman can do, so maybe wanting to be pregnant wasn’t so bad.

Intellectually I was prepared to have a child with Marfan. But in that moment, as I cradled my angry, frightened baby, motherhood took on a different meaning to me. I became a mother in a new way. Guilt for having a role in placing him in this position. Gratitude for knowledge of the path, to be able to prepare him. Some sadness for the same, and pain for realizing that while I can prepare, I can not protect.

I know, Baby, I know. I know it hurts. I know that IVs aren’t going to get any easier. I know that this is only the first of many hospital visits you’ll have. I know this diagnosis will change you, I pray for the better. And now I know, really understand, that I can not take away your pain. I can not make this road easy for you. And that kills me.


Photo Credit: valeriebb.


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