Grief Is The Price We Pay For Love

A mother reflects on the grief of raising an opioid-exposed child.

Today is National Grief Awareness Day. And it’s fitting. I’m sitting in my home in Minneapolis, where we experienced the worst mass shooting in state history just three days ago. Children were sitting in church pews, praying with their friends, celebrating a new school year, and were shot dead. Our city has been drowning in grief and it has changed us forever. All we want is to know that our kids are safe and happy and thriving. Isn’t that what parenthood - and motherhood - is really all about? 

This feeling of desperately wanting my child to have a simple life without adversity is one I am uniquely familiar with, as it’s something I experience every day. Before I became a mom, I pictured motherhood going something like this: Wrapping my baby up close to my heart in a carrier and going on quiet walks with him; visiting friends at coffee shops while my son slept peacefully in his car seat next to me; filling our toddlerhood days with art projects and nature walks and giggles; and happy (and messy!) mealtimes where he gobbled up the homemade pancakes I lovingly made just for him. 

Motherhood has looked quite different for me. My son was born exposed to opioids, along with several other substances. He spent 12 days withdrawing in the NICU then came home with intermittent withdrawal symptoms that lingered for the next six months. He was an inconsolable baby. He hated the car and would scream and cry until he turned purple if I tried to take him anywhere. We barely left the house except for doctor appointments. He didn’t walk until he was almost two years old and was recently diagnosed with mild cerebral palsy and dyspraxia. Since the age of one, primarily due to his speech and developmental delays - he would slam his head into the hardwood floor or cabinet doors out of frustration. We had to buy a padded helmet to put on him when it was really bad and we couldn’t protect him or ourselves from the blows. Since birth, he struggled miserably with feeding. He almost never took in more than 18oz of formula per day and he experienced two bottle feeding aversions that we had to work through. He struggled to put on weight and was diagnosed failure to thrive as an infant. As a toddler, he doesn’t eat whole foods - only packaged snacks like specific crackers and bars. He will rarely eat any of the things I lovingly bake for him.

We do spend some of our time doing the things I imagined - art projects and playing outside and being silly and laughing together. But much of our time during the week is taken up by therapy appointments. We see a speech therapist, an occupational therapist, a physical therapist, an ophthalmologist, a neurologist, a developmental pediatrician, a geneticist, a dietitian, and had Early Intervention visits from our school district every week up until recently when he aged out of the program. 

But it’s really not about what I imagined motherhood being and it not looking exactly like that. That’s not where my grief really comes from.

I am filled with grief when I watch my son struggle to do things that seem to come very easily to other people’s kids. I am filled with grief when he bravely approaches another child to play and that child can’t understand him, so they walk away. I am filled with grief when my son has a meltdown because his stomach is empty but he won’t eat. I am filled with grief when my son spends more time in therapy rooms than he does with other children. I am filled with grief when kids that are my son’s age whiz past him on the playground and climb the equipment with nimbleness and ease that he has never experienced. He cannot follow them and play at their pace. I am filled with grief when my son frequently falls and hurts himself, when all he wants to do is run and play confidently. I am filled with grief when my son has to endure yet another medical procedure or painful test that most children his age don’t need. I am filled with grief when I receive a report from yet another special needs evaluation that points out all of his deficits and none of his strengths.

I am filled with grief when I am so exhausted from absorbing big feelings and tantrums, bruised from being hit or kicked or head-butted, jumping through hoops just trying to get him to agree to eat something, driving from appointment to appointment, remembering all of the therapy homework and trying to implement it at home, scheduling and rescheduling more appointments, fighting with insurance trying to get them to cover his prescribed nutrition shakes, applying for more insurance to help pay for his therapies, researching new ways to help him grow and thrive, and getting up with him throughout the night. I constantly grieve that my son has to struggle. He did nothing to deserve this. When I am angry, frustrated, hurt, exasperated, exhausted, and absolutely at the end of my rope, with very little left over to give to myself -  I am learning that what I am really feeling underneath it all is grief. 

The juxtaposing wall art in my son’s bedroom.

So this morning on National Grief Awareness Day, I let myself sink into that pool of grief in my heart for just a little while. I carefully hung six padded panels above my son’s bed where he often slams his head into the wall when he is angry or refusing to nap. I am grieving that these panels need to be hung because I can’t stop him from hurting himself. I am grieving that he wants to hurt himself at all. I’m grieving the juxtaposition of these obnoxious panels next to the sweet, soft, tones of the custom art hanging above them - an illustration that I created and framed just for him a few days before he was born; a centerpiece to the gentle puppy-themed nursery I designed with every bit of love and anticipation in my heart. His experience of infancy and toddlerhood and my experience of early motherhood have been anything but gentle. But I believe that grief and joy can co-exist. 

This motherhood journey has been wrought with grief. But it’s also been soaked with love and joy like I never knew before he came into my life. Valarie Kaur’s famous quote, “Grief is the price we pay for love,” are the truest words I have ever heard. I carry this grief with me, but I carry it with honor. I grieve because I just want a life of safety, peace, and minimal struggles for my child. Motherhood may look a lot different than I imagined, but being his mother is the greatest honor of my life. I grieve because I love him so much.