I had an easy-going and uneventful pregnancy. It was my first, and the nine months were uncomplicated by nausea or much discomfort. With each passing month—and each ultrasound, urine tests or prenatal screening—we were reassured that our boy was growing and thriving and healthy. The labor too was quick and without interventions—the doctors would later describe it as “unremarkable.”
He was here; our son was beautiful.
His seizures were noticed on his second day of life, but he was probably seizing from the time he took his first breath—and likely in utero.
He lived in an Isolette in our small, community hospital’s NICU. Our hopes for our son and his future (as well as our own) started to diminish as each medication failed to control his seizures and each of the myriad tests came back negative. When it became clear that his unknown condition was beyond the scope of the birth hospital, we transferred him to the best children’s hospital in the country.
Our world as we knew it was over and we entered into some bizarre reality. A reality of watching your child seize a hundred times a day; of moving away from your spouse to live in a Ronald McDonald House in an unfamiliar city; of having the hospital’s chaplain regularly visit you at your newborn’s bedside; of having been blindsided by a sick child when all of your fantasies for your future were with a healthy one you could watch grow and develop and outlive you. A reality of constantly questioning if this all happened because your fears of being a bad mother were true or because you didn’t want your child enough or because you are being punished for something. This is shock. This is trauma.
I became a shell of my former self. I was no longer a person. I existed with the help of family and friends who made me eat and drink, and reminded me to take the medication that allowed me to regain modest levels of functionality.
Everywhere and everything feels foreign when you are broken. The most-familiar places feel alien; the carpet under your feet in your own home feels like you’re walking on the soil of some other planet. Colors look different; they feel different. You find yourself lightheaded only to realize you forgot to breathe. You feel like an imposter in your own body and in your own mind. You lose touch with your sense of self; you fade away.
As our son was growing a part of me was dying. This is grief. How do you mourn someone still living? How do you grieve a life that hasn’t had the opportunity to live?
It wasn’t until the day before our son was discharged—two-and-a-half months after he was born—that we received his diagnosis. He has a de novo mutation on the SCN2a gene that causes his intractable seizures, abnormal brain function, and a brain malformation. It never could have been predicted. We don’t carry the gene mutation and it’s not something prenatal screening tests for. It’s the thing every expectant parent fears. He is the rare, the unknown, the under-researched, the misunderstood. His condition will be lifelong and he is expected to be profoundly disabled. With a guarded prognosis and conflicting emotions, we were able to take our baby home.
The feelings of shock, trauma, loss and grief when receiving this kind of news about your child are real. They are forever a part of you and will change you. If you have found yourself here because you have been through something similar, know you are not alone even though you likely feel that way.
In the terrifying days after our son was born, someone told me, “Hope changes.” When it seems lost, the hope you’re able to grasp hold of—for your child, your family, and yourself—simplifies. When a part of you ceases to be, there is a unique opportunity to be reborn. You can live your life with a newer, simpler philosophy and goals for your child’s life and for your own: unconditional love; comfort and being comforted; finding shelter with family and friends. You can embrace the smallest pleasures with the greatest appreciation: knowing the healing power of good food lovingly prepared when eating was so recently a vulgar thought; the privilege of having a career you love but previously felt burdened by; being a support to someone else after you so desperately needed help from others; rebuilding nearly lost relationships with family and friends who emerged out of obscurity to help carry you in your time of need. You can be less guarded and freer with your I love yous. It is impossible to cure your child; that is the debilitating truth, but some of these things are possible. This is the mantra I tell myself every day.
Know you are entitled to every feeling. Sadness. Anger. Strength. Loss. Hope. Grief. Joy. Hate. Love. Feel them all. There is no timeline and there may never be acceptance. Know it takes courage to trust others with your emotions —and you are strong. I previously thought sharing my pain with others was too much of a burden. Now I think of it as crowd-surfing: the extra hands and hearts help lift the weight of your pain, distributing it evenly over many instead of it swallowing too few. Allow yourself to seek help—through friends, family and professionals—when you need it. Find your tribe.
Use your fear to motivate you to find happiness each day. Attempt to mend the breaks in your heart with small joys. There will be good days among the bad. There will be milestones. There will be victories. There will be hope, although altered.
We hoped to bring our son home from the hospital and watch him sleep in his nursery; we made it home.
As you simplify, you may realize that your goals as a parent at their very core are unchanged. You want to provide comfort to your child. You want to respect your child and have others respect him. You want to be an advocate for your child when he cannot advocate for himself. You want to give your child every opportunity to live his best life possible. You want your child to know true and deep love. You can still be the parent you want to be. These things are possible.
From Young Mouse.