Mr. Everything
Parenting is challenging in the most suitable circumstances. Cracker crumbs between couch cushions, yogurt soaked into its fabric. Toys scattered across the floor, like little death traps to trip over. One child is climbing the counter and the other is terrorizing the cat. I try maintaining order half paralyzed with a slurry gargling voice. I’m fortunate enough to be able to walk, however my left arm is unusable. My right arm is so weak I can barely feed myself, let alone change a diaper. My head falls back at the slightest touch. My children are accustomed to my voice and limitations. They are smart enough to know I can’t stop them from climbing me and taking my breakfast or covering me in marker art.
When my husband turns his back to make dinner or do dishes, all hell breaks loose. The toddler climbs me, wanting mommy cuddles, thus dislodging my feeding tube in the process. While I’m trapped in place, my oldest is crying over a scraped knee. That's why we don't do gymnastics in the living room, or at least that's what I say. Struggling to stay calm in the midst of juggling the kids and my own needs, my husband comes to the rescue. To kiss boo-boos, fix my feeding tube and remind the toddler to be gentle with me.
He’s my favorite nurse and advocate. He bandages up my oozing feeding tube, and holds my head when I throw up. Since my wobbly head falls over, vomiting has become a choking hazard. A scary truth about our new reality. He washed me up after a choking fit that left me in a puddle. Have you peed yourself in front of an attractive guy? I have. He ran to my rescue instead of away. The kids have become accustomed to my choking fits. Sometimes from food and sometimes from my throat spasming for no reason at all. The toddler mocks my wheezing, not realizing the sound is me struggling to clear my throat for air. The oldest yells for dad and asks if I'm ok. We've normalized ALS so much in the house, these moments aren't scary, just mom choking again.
There are not just two children to manage, but two and me. In the constant commotion of our household it can be… a lot. The one who keeps it all together is dad. As I’ve progressed deeper into this disease, Josh, my husband has taken over the roles I treasured, but can no longer do. Like picking the kids up and dropping them off. Making dinner, and cleaning up. He manages bath time and bedtime. Every day he takes care of us and goes to work. All things I’ve lost out on due to the loss of my mobility in my arms.
I feel guilty for the burden he carries, taking on the roles of dad, mom, nurse, and patient advocate. It’s hard to juggle everything and everyone. Rarely does he complain. He treats me like his partner and not like a burden. He’s been our strength and support. The calm in our storm. Holding us when we cry, and making us smile again.
A good father and a good partner. He doesn't let ALS change his love for us. ALS doesn't just affect the person diagnosed, but the whole family. It's hard watching someone you love be terminally ill, and to explain it to children. A disease that causes others to run away, he stands by my side. He accepts the challenge, and helps maintain a fearless, loving household. Together, we guide our children through the ups and downs.