For over twelve and a half years, Dave and I have lived in fear. Real, tangible fear that our children might become irreversibly sick, immobilized, and even die before us. When Ben was 3 days old, a nurse told us he might not see his first birthday, let alone his 10th. Almost exactly 7 years ago, doctors told us our unborn daughter had brain damage and hydrocephalus. We hadn’t even met her and I can say I have never (and doubt I will ever) been more afraid than I was on that examining table. During their ten, combined and extensive surgeries, seizures and procedures that would follow in the years to come, the fear factor is great. Would they wake up? Would there be permanent damage from anesthesia? Would the surgery fix what it was supposed to? Will she be paralyzed forever? How long would the recovery take? Could we handle it? How would we manage their “new normal.”
This fear was so isolating. So lonely. We have always been very open about our story because it feels better to share the burden than to manage it alone. About six months ago I was feeling so overwhelmed by our life. Ben’s surgery in 2019 turned our normal upside down. I had been handling our special life for so long that I felt like no one could really understand how it had multiplied (again) and what new challenges we were going through. How could I discuss things like screen-time and travel teams with my friends when, medically, we were handling so much? I reached a breaking point and wrote an email to my nearest and dearests to describe how I was feeling and what Ben, and we as his parents without medical training, were going through. Sharing the burden was so freeing. Not a thing changed with what we had to do each day and night but knowing that my people had a better clue as to how we were surviving was so helpful.
Not long after Ben was born, we started looking for support from other parents who could relate to our situation. Finding other families who were affected by Menkes Disease wasn’t easy, especially in 2007 without social media and a diagnosis rate of 1 in 200,000. Thankfully we found a few who I call some of my closest friends now, which I think is pretty remarkable. Once Kelsey came along, I searched for families that had experience with her many diagnoses. Finding someone like that, alone, still hasn’t happened. I’ve given up hope on finding a family who has TWO children with challenges closely related to ours. Humans and mothers crave connections and empathy. We want our children to shine but we also want them to be just like the other kids.
Since the start of the pandemic we are living through, one thing has been obvious to me. We are sharing the burden. With the whole world. Not a single person has been immune to Coronavirus or it’s impact. There is a shared misery of the stay at home orders. Schools being canceled. Trips being canceled. Life being canceled. Knowing that I can text my friends and say “I HATE THIS” and they will promptly reply with a “I KNOW! I DO TOO!” is comforting and also unfamiliar. Usually I’ll blog or text or chat over a dinner out (remember when we could do that!?!) about our family struggles and the response is “I’m sorry. I don’t know how you do it. You are so strong.” But during the pandemic, the feelings are mutual. Shared.
Daily experience with fear has definitely given me different perspectacles when it comes processing Covid-19. During this parenting season of our life, we have decided NOT to live in fear. We HAD to face challenges like surgeries so our only choice was to listen to the experts and trust our gut. Even when our gut was ready to puke because we were so scared, we had to put one foot in front of the other and sign up for heartbreak and hardships. We made our best judgements to help our children and to live a full life. We also took the trips, played the sports, and danced the dance when it looked different from everyone else. We wanted to. We had to–despite our fear.
After two months in quarantine, I can see how fear and judgement is creeping in when it comes to considering resuming our old life. Some friends are planning on never flying again. Some plan on flying with their spouse but not their kids. Some haven’t left the house. Others have isolated with certain friends and family and others haven’t seen a soul. Some wipe down their grocery bags. Some walk in the park with a friend in a mask and others play with neighbors everyday. Some will travel to Florida and others are scared of Ocean City.
I think the best we can do is our best. We can listen to the experts and make the best decision for ourselves and our family. And even though we all have the shared experience of this pandemic, we should remember that we are all different and we all want the best for our friends, family and communities.
Happy Mother’s Day to all of you and yours. May this weekend be healing and replenishing to your spirit. And let’s be sure to show up with love and a collective compassion to everyone who is just doing their best to survive.