Last Saturday, my four-year-old daughter crept into my bed for some early morning snuggles. After a few minutes I asked her if she’d like me to make her french toast for breakfast. She readily said yes, and we agreed that when he woke up, her little brother would like some as well.
Then with a troubled look, she said, “I wish G could eat french toast with us too.”
My eyes filled with tears, and I quietly whispered, “Me too, baby.”
She went on. “Mommy, I love G, but I wish he could talk. And I wish he could walk. And I really wish he didn’t have a boo-boo on his brain.”
Me too, me too, me too.
This is my struggle of raising a child with disabilities. It’s a constant tension of loving him with my whole entire being, but also grieving for what isn’t, and what will never be.
It’s an acceptance of an imperfection in his genetic code, and a realization that that same imperfection changed me in ways that are more profound than even DNA.
It’s guilt. Loads of guilt. It’s sleepless nights, lying awake wondering the purpose of my son’s life. He makes the world brighter and better, but what about him? What’s in it for G?
It’s handing my firstborn over to anesthesiologists and surgeons, putting his literal life in the hands of strangers and letting them cut his flesh as I sit in an impersonal waiting room wondering if this time I made the wrong decision for his health.
It’s crying to God in anger because how could he allow my precious boy to be so impaired and suffer so much? But then it’s also praising Him for such a perfect child, whose greatest joys are being held, sung to, and loved by his family.
It’s growing relationships with real superheroes: the teachers, therapists, nurses, bus drivers, and church workers who love my boy and advocate on his behalf.
It’s bi-weekly trips through the pharmacy drive-thru and hours on hold with insurance companies. It’s binders full of lab results, MRI reports, and hospital discharge paperwork.
It’s trips to the ER that are as common and routine as a typical child visiting the pediatrician for an ear infection. It’s ignoring angry looks from parents in the waiting room when my child skips the line and is rushed to a room before theirs. The difference is my child doesn’t have the luxury of waiting for treatment. His life depends on that emergency room “VIP” status.
It’s pulling in the driveway and seeing stacks and stacks of boxes have been delivered. No, they aren’t from Amazon Prime. They’re formula, feeding tube supplies, diapers, oxygen cannulas, and suction supplies. And it’s trying to find a place to store all this stuff to avoid having my house look like a medical clinic.
It’s sharing our home with nurses who care for our son at night so we can attempt to sleep uninterrupted. It’s trusting them in the wee hours while we sleep, and also letting go of caring for his physical needs every minute of the day and night.
It’s explaining G’s disabilities to his little brother and sister, who are too young to fully understand. It’s working through their sometimes negative behaviors that manifest as a result of that misunderstanding. It’s feeling ill-equipped and unprepared to navigate their unique sibling relationship, but muddling through just the same and praying that G will teach them empathy and compassion as they go through life.
It’s grieving the death of my friends’ children, because yes, I have friends whose children have died or will die. It’s not knowing what to say, but at the same time understanding what they have lost and the pain they feel.
It’s day after day of doctors and therapy appointments, of changing diapers and administering medication, of special education ARDs and calls from the school nurse. It’s raising a child who can literally do nothing for himself, but whose very existence makes my life full and rich. G is disabled, and will never eat french toast on a lazy Saturday morning, but he is perfect. He made me a mom, and being his mom is the greatest gift of my life.