This weekend has been so hard. This beautiful, wonderful child has made our lives so complex during this crazy time. I’m not sure if she is reacting to the stress of change or has been fighting a bug, but her seizures have been OUT OF CONTROL. She has nearly fallen off her chair at the table three times this weekend, with Eric or I barely catching her in time. She has dropped more times than I can count while walking, and I can’t tell if she is seizing because of the fall or if the seizure caused the fall. She has been combative as we are trying to help her with anything, pitching a fit when we don’t let her walk on her own or stay at the table. She had so many seizures tonight that we wouldn’t let her stay at the dinner table. I fed her chicken nuggets on the couch (we NEVER let her eat on my new couch), trying to help guide her hand that could barely grasp the food, but she was so stubborn about any help that she got catsup all over herself and me. Finally Eric carried her up to bed, which he shouldn’t have done since she is getting so heavy, but we couldn’t let her climb the stairs in her condition. This is turning into a nightmare. And all weekend I was thinking about how I was supposed to be in Hawaii right now, visiting my daughter and meeting my new grand baby.
I hope that things in our community will change quickly, getting back to normal (I know they won’t quickly.) I hope that the kids can get back to school and Elise can receive the therapies she needs to improve her cognitive and physical condition (I know they won’t this year.) I hope that I can get back to work and see the patients and staff that I love (fingers crossed on that one.) I hope that I can mentally find the strength to get through another week of the same battles and same nothings (fingers crossed on that one too.)
Text below was a wonderful article written by Sean Patrick Hughes, posted in a Medium publication called Human Parts. (I tried to post the direct link to the article but must not have done it correctly.)
I was on a ship headed out of the Gulf after three months of grueling summertime naval interdiction operations when 9/11 happened. We were extended indefinitely. For months, I spent six out of every 18 hours driving a ship. The other 12 were spent managing an engineering division and trying to find a few hours to sleep. We had no idea how long we would be there. It ended up lasting three months longer than it was supposed to.
I went 103 days without stepping foot on land.
On my next deployment, my team was sent to a remote part of Africa where U.S. forces were operating. We were supposed to be there for three weeks. We ended up staying for seven months. No internet. No running water. Just a cot, some MRE, a tent, and an ongoing war. We ran out of everything at one point or another, including water. My kidneys shut down. I was medevaced out. It was three hours by air to the closest modern hospital.
Some people have the sort of military experience that ends up as a screenplay for a combat movie. Mine was more like a post-apocalyptic survival story: Gilligan’s Island meets Cast Away meets Mad Max. I’m no war hero, but I can say with a straight face that I can face the suck with anyone. We’re old friends. I know the mental framework that’s required to get through things, and the dangerous mental patterns you have to avoid to stave off breakdown. By now, it’s my superpower.
It’s been 72 hours since my company sent everyone home to work and the district closed the schools in my county. It’s starting to sink in now.
This is going to suck.
I love my family. There’s no “but” here. I love spending time engaging with them. I don’t hide from the burdens of domestic life. I spend just about every waking moment of my weekends with my family. When I work from home, I sit right in the middle of the kitchen and feel the mess around me. It took practice to learn how to focus. I don’t do it perfectly, but that’s how I roll.
But this world we’ve all just entered into is different. The response to Covid-19 is a new sort of problem. At the center of it for us, and others like us, is a huge resource hole.
My 13-year-old son is autistic. And he’s a treasure. But it’s becoming painfully clear just how much we rely on a virtual army of people to help us care for him. On a weekly basis, no fewer than a dozen professionals and others share that privilege.
They are wonderful people: teachers, therapists, coaches, respite workers, and other volunteers who see engaging with him as joyful, meaningful work. And for the last decade, we’ve formed our lives around being able to depend on them.
On Friday, our network of support evaporated in an instant. The places that keep him in touch with the world outside his challenged sensory inputs are all closed. No zoo. No museum. No SeaWorld. No Disneyland.
He doesn’t understand what is going on. We try to explain. Some things he can understand, others don’t make sense. In his defense, many others without the excuse of disability aren’t getting it either. But for him, this change represents something inexplicable and unexpected — two things kids with autism handle particularly poorly. He asked us 20 times yesterday (no exaggeration) to go to the zoo.
It’s not a long list of tedious things you shouldn’t have to deal with. It’s an opportunity to serve your child.
Normally, this is the time when I say, hey folks, check in on your special needs parents. Stop by. See if they need a break. But I can’t say that in the middle of a global pandemic. We’re out of options. There’s no way out.
We’re stuck in the suck.
While the journey of a thousand miles starts with just one step, the journey of a long, hardcore, truly tough experience starts with a step of a different sort. That of acknowledging your reality. Owning it. Making it a part of you. Wearing it, as Tyrion Lannister says, like a cloak that protects you against the fragile and meaningless luxuries of another time.
Once you get there, you’re free to move on to three valuable thoughts that can get you through just about anything.
1. Every moment is just a moment. Every day is just a day. You can only live them one at a time. If you look at all the troubles you are about to encounter in any long and difficult endeavor and stack them up on top of you at once, you will collapse. The burden is too heavy.
See every moment for what it is. One moment. It begins. It ends. Don’t overvalue its joy or its hardship. Don’t project any reality as representative of some permanent future. As soon as you do, you’ve let water seep into the crack. When the real hard winter comes, it will freeze and split your world wide open. That’s when you quit. Except you can’t quit what you can’t quit. And all there is from there is suffering.
2. Be grateful. It doesn’t matter what you are going through. Gratitude applies. If you can’t think of anything, then spend some time with the miracle that is existence.
Grab the dirt beneath your feet. Breathe the air around you. Catch the light that shines off of everything you see. Realize the infinite space and time it all had to travel to be here for you to experience. Realize the millions of ways the matter that is you could have been organized for you not to exist.
Entropy is the natural order of the universe. Celebrate the forces that stave it off to create the cosmically unlikely event that is existence. If you spend some time with that thought, you’re ready to celebrate the unlikely miracle that is your existence. And you can’t help but feel gratitude.
3. See yourself in the service of caring for your child. It’s not a long list of tedious things you shouldn’t have to deal with. It’s an opportunity to serve your child.
We weren’t sitting in the bush in Africa getting our asses handed to us by physics and nature. We were serving the American people. And if you don’t think that serving your special needs child is as honorable as military service, you’ve read one too many Navy SEAL books. Those guys would tell you the same. Trust me, I know them all.
Through the lens of service, the tedious becomes honorable.
I’ve cleaned more crappers and written more admin reports than I’ve gone on combat patrols by a factor of 100. That was service, too. Through the lens of service, the tedious becomes honorable. Let that all sink in for a second. Then let’s bring it back to now.
We’re early on in this crisis. None of us know how long we’ll be here. Special needs parents are looking up at a mountain that’s higher than everyone else. For those of you with just good old fashioned standard-issue kids, all of this applies too, because lord knows eight weeks of lockdown with them isn’t easy either.
Keep these thoughts in the front of your mind. Pray them if that’s your thing. I do — it works. When your world gets small and tough and you’ve come to the conclusion there’s no way out of what’s coming, remind yourself:
Lissencephaly Awareness Day
On August 27th I wrote a heart-felt letter to our mayor asking her to consider adding the city of Everett to the list of those who will honor Lissencephaly Awareness Day on September 8th. To my surprise and delight, she responded back the very next day with the signed proclamation! The lissencephaly community has been trying to make this day a reality all over the US, and the organization We Are Rare (weareRARE.org) has been helping them out.
It may not seem like much to others, but having a daughter with a rare neurological condition has opened my eyes to the incredible value of simply being recognized. Community awareness is such a vital part of helping those who are living on the fringe feel part of the community as a whole. The simple step of recognizing Lissencephaly Awareness Day is the perfect way to open the door to community involvement and support for special-needs children like Elise. To meet Elise is to know the meaning of love and light. I want more of our neighbors to get to experience the amazing impact these children can have on our community!
Thank you to Mayor Cassie Franklin!!
This blog is all about this spunky, sweet, independent, loving girl and what life is like living with lissencephaly. Welcome!!