Two years ago, shortly after Little Bear was born, I became active in an online group for evidence-based birth information. I started chatting with a girl that was living in the country my best friend was born in and who had given birth to her first son in another country in the same region. Since she was living in Latin America and I was married to a man from Latin America, we had common interests and became occasional chat buddies.
When she became pregnant with her second child, our conversations moved towards sewing. She and I had both recently begun classes and we both used cloth diapers with our children. She was tight on money, so I sent her a box of cloth wipes that I no longer had a need for. She showed me her progress on diapers she was making for her second little boy, proud of the improvement she was making on each one.
In August of last year, our lives and our friendship took a dramatic turn as I dealt with the diagnosis of Little Bear’s autism and she dealt with her son being born with severe illness that was not immediately defined. At first they thought Down’s Syndrome, then they thought it was a heart defect. The newborn was airlifted to a larger hospital and mom was left with no answers and a thousand questions. I was similarly flailing for answers with Little Bear’s diagnosis. She was one of my anchors and I’d like to think I was one of hers. It was like we were both swimming in a sea of uncertainty and we were grabbing towards each other’s hands, hoping neither of us drowned.
Then, in November, we both received answers. Little Bear might not be autistic. He might actually have delayed myelination and outgrow many of his symptoms. We would repeat tests in a year to see. It was like a lifesaver of hope had been thrown to us and we saw so much improvement from his therapies, that we suddenly felt like we were coasting by.
My friend also received the answers she waiting for, but it was no life preserver. No, she was thrown a pair of cement shoes: ARPKD. Her son had a genetic defect that had no cure. He would not live to adulthood. Possibly not even past early childhood, given the symptoms that were already evident at birth. Her world crumbled around her. Her boys’ father was no longer in the picture. Her baby was going to die. She felt that she was leaving her older son with nothing more than an absent father and a dead brother. My heart broke in two for her.
She took her older son to be tested last week. I waited anxiously for the results. I was certain he was fine. He was already four and asymptomatic. There was a 75% chance that he was carrying healthy kidneys and healthy genes. She texted me on Friday night with the results. Her older son was also affected. Both of her children would die before they were 21.
My heart broke into a thousand pieces for this friend. I’ve never even heard her voice, but I sat in my car and cried buckets for a woman I’ve only chatted with. I cried for a mother who would lose her entire world in one decade. I cried because I want to continue to hold her hand through this, but I feel that she may end up resenting me and my “problems” with Little Bear. My Little Bear who will one day be a Big Bear and have a completely normal life expectancy. We were two mothers navigating the waves of emotion that accompany the unknown medical diagnoses of our children and one of us was left with a non-neurotypical child and the other was left with two terminally ill children.
The guilt. I feel so much guilt. I have no reason to feel this guilt, but yet I feel it because I don’t think it’s fair at all for a mother like her to have to suffer through this. I feel it because I’m still upset about Little Bear, but Little Bear is growing bigger and stronger while her boys will eventually grow weaker and lose their kidneys. It’s not a fair friendship. I won the freaking lottery of problems compared to her. The goddamn lottery.
I put her in touch with another internet friend who has a son with a mitochondrial disorder. Her son’s life expectancy is similar to the poor mother who will lose her two boys. She has also already lost a child due to a surrogate who didn’t have a c-section early enough when there was a labor complication. She has become the new hand to hold for my online friend. She knows the drill. She also guides me on how to talk to this friend so that she doesn’t feel like I’m babying her or ignoring her.
Autism is a difficult disorder to deal with. Trying to peak into my son’s world and mind can drive me to tears at times. However, there are more and more moments when I feel like he’s left the window open – maybe even the side door – and I can see inside and really know him for a few moments before it closes again. I feel like there’s hope that one day he might invite me in for a conversation and we will know each other. This will continue until I depart this earth before him, as it should always be.
My friend has two children who are neurotypical in every sense of the word. They are happy, active, “normal” children with not a worry in the world. Happy, active, neurotypical children who will have to come to terms with their own mortality before they even begin to live.
I feel so guilty that I lucked out and got an autistic son.