Being a Special Needs Mother Means Being Okay With Being Alone
Other moms don’t want to hear about my children’s issues, and I struggle with their everyday complaints
The silence of my thoughts echoes through the walls at night when I’m trying to drift off to sleep. I think about all the things I should have done but did not do or simply forgot about. As the silence grows louder, I often find myself looking through other mothers’ lives on social media. I find their play dates, their Pinterest ideas, and their cute professional photos — but most of all I find their normalcy.
Oh, how I would kill for the normalcy of being an ordinary mother. I never asked to be a special needs mother; in fact, I pushed it away every chance I got. Being the mother of a child with a life-threatening airway defect and a child with autism is like living a double life: one part is full of friends, outings, joy, and laughter; the other is full of doctor’s appointments, tears, fears, and untold emotions.
I have heard the phrase “it could have been worse” more times than I could ever begin to count, from the moment my first son was whisked into the neonatal intensive care unit to the day my younger son was flown to a PICU in a medically induced coma while on life support. My children’s father has always physically been there for everything my children have been through. But when the hard stuff happens, it’s like he just tiptoes away into the darkness, leaving me with all the decisions that could end their lives.
I once opted to allow my son to get a G-tube, a tube inserted through the belly that brings nutrition directly to the stomach. He had a medical condition called laryngomalacia, a congenital softening of the tissues around the larynx above the vocal cords. His tiny body was expending too much energy just trying to breathe. I sat in the corner of his hospital room all night, going back and forth, wondering if I was making the right decision. I called everyone I knew. They all said, “Just do it. I mean, it could be worse.”
I have heard the phrase “it could have been worse” more times than I could ever begin to count.
One year later, as a result of that decision, it was so much worse. My beautiful son had a closed loop bowel obstruction. He had emergency surgery and was put into a medically induced coma again because he couldn’t even breathe on his own. My decision to get him the G-tube almost killed him. Again I sat in a room alone, in the silence of my own guilt. It was easier to be alone in my own fear, guilt, and grief than to let anyone in. I couldn’t handle another person telling me it could have been worse.
The sad truth is no one really wants to hear about your sick child. When both my children first got sick, I was met with an outpouring of support and prayers, but after a while everyone slowly eased their way out of our lives. It was just too much for them.
I don’t blame them, and I never will. They are right: it is hard. It is hard every single day with no break to be heard or had. I am part of many Facebook groups for special needs parents, but their support can only go so far. In those moments when you’re sitting in a PICU at 2 a.m. watching your child’s chest rise and fall to the sound of the ventilator, or you’re rocking your child because the feeling of water spirals him into the worst possible meltdown and the only way to stop it is to hold him as close as possible, there is no one but you, your child, and your own thoughts. No friend is going to get that, and no one is going to want to live it with you.
People don’t know what to say or how to react when they learn my tiny two-year-old almost died twice, or that my older child sat on the floor screaming “hot dog” so many times he became physically exhausted.
My life is full of therapy appointments, doctor appointments, hospital trips, and meltdowns. These have become my normal, so when I call a friend to chat about my day I’m often met with, “Oh my, I don’t know how you do it. Can I call you later, though?” But there is no call back.
Over the years I have learned to expect being alone in not only my own thoughts, but also my children’s and my own trials and tribulations. Being alone has become easy for me, and I’ve almost started to like it.
When I’m alone I don’t have to explain my child’s 50 diagnoses or apologize 100 times for my autistic child’s bad behavior.
In the silence of being alone I no longer have to pretend I am okay or I’m not falling apart at the seams and going absolutely insane from the chaos of having two medically fragile children.
I believed for so long that being a good mother meant having mom friends. When it became clear that was just not happening, my feelings of failure grew even more intense.
Every time I sparked a friendship with other mothers, I found myself getting angry when they complained about the simple things. I couldn’t handle their day-to-day grumbling about things I would love to do if an airway disorder hadn’t stolen that option. I was jealous of the perfect children they had but did not appreciate.
I know it’s not fair or right to judge someone else’s battles, but I want to scream at the top of my lungs that they don’t know how lucky they are to be able to go to sleep without wondering if their child will stop breathing in the middle of the night. I used to be the mom to message if a child had a cold — after all, I can spot respiratory distress faster than you can count to three. At some point I stopped responding to messages asking if they should take their child to the ER for a stuffy nose and 101 degree fever. I literally laughed. I would love for my son to have just a stuffy nose. Instead, the common cold put him on a ventilator. The common cold put him on high-flow oxygen inside a PICU.
I slowly walked out of all my mom friends’ lives. I walked away and I have never looked back. I find more peace being alone in my own feelings about their lack of appreciation for simply getting to feed their child without a syringe connected to a tube going into their child’s stomach.
It is easier to be alone than to be questioned. I have learned to be okay with being alone — not for other mothers, but for me. I’m okay in the silence of the loneliness. As long as I am alone in all the chaos of my two children, I can fall apart and not worry about being judged by anyone else.
To follow my journey in special needs motherhood like and follow my Instagram page here! www.instagram.com/advocatingforelijahsvoice
To follow my journey in special needs motherhood like and follow my facebook page here! www.facebook.com/advocatingforelijahsvoice