We have junk drawers and dirty dishes; play video games; balance two working parents, watched class performances, concerts, and plays; attended Cub Scout meetings and Brownies, kissed wounded knees; gotten overly tired at the zoo; had to carry a screaming toddler out of a restaurant; punished a sulking, snotty teen; cursed the school pick up line of cars; delighted at dandelion bouquets; read thousands of stories; drank hot chocolate after playing in the snow; left the laundry in the washer so long it had to be washed again before it was dried; took road trips; and laughed a million and more laughs. We've been parents for over 15 years now if you count pregnancy. We have done it the best we can. We are no different than most parents.
Yet, we are not the same as most parents either. We were given the option to terminate our second pregnancy due to genetic condition; watched that same child come too close to death on several occasions; flown across the country for second (and third) opinions when no options remained at home; handed our child over to surgeons who stopped her heart and we didn't know if it would start again; rejoiced in her recovery and broke into a million pieces when she declined again; made the decision to stop treatment; lived for 8 years with a child in hospice; broke into millions of pieces again and again and again, each time putting ourselves back together, but never quite the same.
Several years ago (five maybe six), the Mad Scientist and I had to start working from home several days a week because DQ could not stay in school all day. She was needing to come home frequently. About four years ago, we took our last vacation and had to leave early because DQ was too tired to stay the entire time without her hospital bed. Two years ago, DQ officially became homebound even though she basically had been for some time. A year ago, the pandemic hit and we were all homebound. Shortly after that, DQ became basically bedbound.
Life is hard for the entire world right now. It is so hard for us. We have zoom school and remote work, we wear masks, social distance, and have all fingers crossed that covid stays away, but that is a backdrop to our life.
Pain is ever present. We are constantly trying to find a way to alleviate DQ's pain. We were told by hospice last week that there are simply going to be times when she will have pain. That should never be the answer and I'm glad that wasn't told directly to DQ. She needs to believe we are doing everything we can to alleviate pain. It is our daily struggle. It only becomes the more apparent on days like today when she wakes up feeling good. I am able to step back and see where we've been. I still think of myself as the typical parent, but when I am able to unclinch for a minute, when she feels good, I realize that I am not typical. Nothing of our life is typical.
All I want for my children is to learn, find themselves, and enjoy life more than they dislike it while helping the world more than hurting it. How do we create a "normal" childhood, complete with silly internet videos, fun day trips, and family games, when pain, exhaustion, and nausea are an ever-present companion? That is the question of every moment, even when not spoken. We take normal childhood in slices, I guess. Perhaps a better descriptor would be nibbles of normalcy. I want to give more than a nibble though. That is not possible. And do I really want it? If we get back to "normal" will that mean DQ is gone? If so, nothing will ever be normal again. Fuck, this is hard.
