The Power of Others

When I wrote my last blog entry, the quarantine had just begun. For me, it was frightening, but it felt like the kind of frightening you feel when there is a storm coming that will close schools down but not do much enduring damage.

            How quickly that fear wrapped its roots around the world and began to tether us to the earth, like a vine of Kudzu that can consume an entire forest in very short order. We all stepped back, locked our doors and hid away from the world.

            Though quarantine seems to work in most cases to prevent the spread of COVID-19, I have been looking for studies of its other impacts. How many more prescriptions are being written for anxiety, depression and sleep issues? How many people are seeking much-needed mental health support? How many suicides and suicide attempts can be attributed to this ghastly virus?

            If families are able to quarantine together, it can be good or bad. A good family can support each other, play games, share in educational duties and find comfort in company. An abusive or unhealthy family will find their behaviors exacerbated, creating a more dangerous environment than they previously experienced. And for those who live alone, whether by choice or circumstance, loneliness can be deadly. Tensions draw tighter even in the best of circumstances and can cause collapse in the worst.

            Jane Clay of the American Psychological Association states it more eloquently than I in a special report dated June 1, 2020: “…physical distancing is endangering mental health even as it protects physical health.”

            A few weeks ago, feeling a little down and more than a little trapped, I decided to plant a flower garden in honor of someone very dear to me who recently passed away. I bought flats and flats of flowers to plant around my home, so that every window was brightened with happy little flowers, their faces turned with joy toward the sun.

            As usually happens, after one day, one particular Vinca flower was withered and bending over. I’m not a good gardener—I tend to follow the lines of concrete on my patio and I’m happy with that. But this little flower was going to leave a gaping hole between the flowers on either side of it.

            I didn’t want to put my mask back on and trek back to the nursery, so I went to my trash can and drew out a flower I had discarded because it didn’t look healthy. Figuring I had nothing to lose, I carefully pulled it out, dug a little spot next to my sick flower, and nestled them together. Normal spacing for Vinca is six inches, but I was feeling reckless that day.

            This morning, I was watering and feeding my flowers. They always bring a smile to my face. They are a reminder of the beauty that God gives us, and to me they offer a reprieve from how very fast our world has fallen into so many different kinds of devastation and loss.

            When I got to my two sick flowers, I smiled and started looking for my neighbors, hoping to show them this tiny little miracle, but no one was out. I’m smiling as I write this. Those two flowers have grown together. They look like one being, and they look happy. They are in the photo that accompanies this post. I’m still not a gardener, but today I feel like I saved two flowers and I am smiling non-stop.

            As I cleaned up and came back inside, my mind took rainbow tracks to think of the implications of these flowers. The brightest track was one we all know: like the flowers that needed each other, we are social beings. Two sick flowers were able to heal together, while COVID-19 patients are kept in isolation. I fully understand the medical issues, but what direction would our death rates go if patients were allowed to safely see loved ones? What miraculous effect would this have on our front line workers who have seen more death and held more hands of the dying than any one individual should ever be tasked with?

            My boyfriend is the greatest extrovert I’ve ever known. In all of my tests, I’m labeled an extroverted introvert. All of us, no matter what label attempts to define us, fall somewhere along the line and every single one of us need each other. For my boyfriend, he needs to be around friends or family almost all the time. I’m good with being with him and seeing friends and family a few times a week. For others, it could be once a week or less. But we all have the same need. This isolation is hurting everyone, no matter their label.

            Here is where my precious Caleb makes his well-anticipated appearance. Now living in a group home, which has the same classification of a nursing home, I was told in March that if I came to see him, I would have to bring him home with me and he couldn’t return to his home until the virus was over. I miss that young man so much that I debated for half a second, then realized that if I brought him home, it would be awful. For him.

            All of Caleb’s favorite things from our home are now set up in his room at his new home. There is literally nothing here for him. Beyond that, he has three roommates he adores, staff that are now family to both of us and so much opportunity for interaction with others that it would be selfish for me to bring him home to sit on my couch.

            I call Caleb all the time. Every single conversation is happy. He tells me what he’s eating, what funny thing his roommate said, what movie he’s watching. His day program was cancelled during the quarantine and I worried that he would be bored or stressed. But with so much love around him, he seemed blissfully, wonderfully unaware that the world around him had drastically changed. The wonderful staff members have kept consistency and routine running like the best steam train, and that is the most important thing to Caleb and his roommates. They also keep the home so clean and germ-free, following health protocols that would make the CDC proud.

            Caleb has given me more validation that the time was perfect for him to move out of my house and into his new environment. I think of all of the families with a special needs child or adult living with them and how tortuous it must be to find things to do. Even kids with autism, despite what you may have heard, need some interaction. Caleb will watch a movie with his buddies and then retreat to his room to regroup. But any special needs person living with family members will likely feel the strain of not seeing others, and the family members will likely be breaking down from trying to support this very special loved one.

            I’m not endorsing anyone to go out nor have people over to visit until we are cleared by health officials. But maybe, like the flowers, if we can find a way to FaceTime or Zoom or call, it might bridge the gap of loneliness. Connect with old friends. Call family you maybe haven’t spoken to in a while. Write letters to teachers and doctors and nurses who gave you everything they have.

            Caleb has now been allowed to see me two times and he is so happy, but I know not all states are as opened up as ours, and I know ours could close back up in an instant. I’m hopeful we can move past this time in our history, but I also know that where we have been has changed us all. And it might get worse.

            Be kind to yourself. Give yourself a little treat, be it a nap or a candy bar or planting a flower. Find a way to connect with someone. And remember that we are so much stronger when we have at least one person to lean on and grow with. Go find them.

If you find yourself needing help with suicidal thoughts or actions, please contact The American Suicide Lifeline: https://suicidepreventionlifeline.org/

If you need to talk to someone, please consider: https://www.betterhelp.com/

If you want prayer, please consider: https://www.hisradio.com/prayer/prayer-needs/

Whatever you do, please don’t ever, ever think that this world would be better off without you. We need you.

22Q, Quarantine and COVID-19

First, let me begin this blog with the most wonderful news. Caleb has settled into his new home like he’s lived there forever. He has three male roommates his age who adore him. They watch movies, play basketball in the front yard and share meals. The staff of this home is loving, protective, knowledgeable and they treat all of the residents like family. This is why I’ve been so quiet. Every time I see him or talk to him on the phone he is happy and excited. Any writer will tell you those stories are very boring to read.

Then COVID-19 hit and though the first week of quarantine has definitely been challenging, it hasn’t hit me like it has others. I’ve devoted a lot of thought to this and realized that it’s because this is not the first time I personally have lived through various types of quarantines, which so many 22Q parents will recognize, to the point where they may feel they are looking in a mirror.

I will share some helpful tips in a minute, but the most important thing I will share is that you will get through this. I’ve been here, in this pit of despair and because I’ve climbed out of it for now, I can extend a hand and help you.

This quarantine will be difficult and some days will drain every single ounce of your patience, energy and humor. Some days will be so dark, but always remember, no matter how dark it is, the sun is up there, beaming behind clouds, ready and waiting to light your life right back up.

In 1995 when I was four months’ pregnant with my daughter Sophie, I began having contractions. Terrified, my mom immediately took me to my doctor, who measured the contractions and put me on complete bed rest. For five months. I was allowed one shower a day and to make my lunch and a simple dinner and that was it. Leaving home was out of the question.

My mother, who drops everything when her kids need her, began driving an hour and a half once a week to bring me lunch and to clean my two-bedroom apartment. She told me she knew this was so hard, but that every day I should make my bed, shower, put on makeup, fix my hair and put on one of my super cute maternity outfits, then go to the couch. This was some of the best advice I have ever received. It kept me from falling into depression.

Sophie made it to her due date, as did her brother Caleb 17 months later. As you know, Caleb was not healthy. After his open-heart surgery at four days old, I stayed in a green plastic wanna-be recliner for three weeks, holding him the entire time. My heart broke for this sweet baby whose entrance into the world was met with unfathomable pain. During that time, I showered twice a week and ate one meal a day, dashing to McDonald’s for a Big Mac Meal at lunch when he was napping. I have no idea how my body made the milk to feed him, but it did.

When I could finally bring Caleb home, the difference in me after those births was shocking. After Sophie, my hair was shiny and long, I had curvy baby weight that I cared nothing about and my skin shone with health. After Caleb, I was so thin that my hip bones stuck out. I had lost all muscle tone and looked like someone with a major illness. My hair was thin and lackluster and my skin dull from not having been washed properly in a long time. I was 27 but looked so old and frail.

If I thought my days of quarantine were over, reality was waiting at home to smack me in the face. Not 24 hours after we got home, Caleb contracted a 105 degree fever. I called the hospital where we had been, and they said not to let anyone in the house. They reminded me that Caleb is missing his thymus, one third of a healthy immune system, and that he would be most vulnerable to viruses–which we are all now learning are notoriously difficult to treat.  They told me to watch him closely and to treat the fever, which I did.

Then came the hard part. Sweet neighbors and friends kept stopping by to bring gifts. I had to talk to them through the door, telling them thank you but can you please leave the gift outside? Family wanted to visit but I had to tell them no. I eventually put newspaper over the sidelights by the front door, a sort of warning to not come close.

I treated our home the way many places are being treated right now. I used Clorox wipes to clean every doorknob, cabinet, toilet and faucet handle several times a day. I washed my hands, Sophie’s hands and Caleb’s hands multiple times a day. Pacifiers were sterilized daily. I was still nursing Caleb so thank God I didn’t have to sterilize bottles. We stayed at home, always. I went to the grocery store at night when my ex-husband was home, so Caleb wouldn’t be exposed to germs there.

Even with all of those precautions, Caleb was seriously ill, with a 105 degree fever for two weeks of every month. For two years. Not only were we isolated from society and not allowed to leave the house, there was the constant undertow of worry that Caleb could die. Sophie couldn’t have friends over or go to their homes. We briefly joined a playgroup but there were two moms who brought sick babies because “I just had to get out of the house.” That led to a full month of fevers for Caleb.

After that two-year quarantine, Caleb entered a preschool for kids with developmental delays like him. He loved it, but people often sent their sick children, so he missed at least a week of school every month. This went on until he was in high school.

When Caleb was 10 years old, he broke his femur at recess, trying to be Buzz Lightyear. I wasn’t there, but I am haunted by the image of this cheerful little boy yelling, “To infinity and beyond,” jumping, and landing with a horrible snap. This break required two surgeries and six months of home recovery. At first he was in so much pain he didn’t mind being home, then around month four he started becoming frustrated and angry. I was right there with him. The cast and then the various braces made it incredibly difficult for me to take him anywhere by myself, so, again, we stayed home.

Caleb can’t regulate his body temperature and a neurologist told me that if he overheats he could die. So 23 summers we spent inside, unless we could be in a pool. Add in the various hurricanes, snow storms and random school cancellations (we have moved a lot) and I almost think Caleb and I spent half of the 23 years he lived with me at home. These were incredibly taxing times and my heart actually hurts thinking of all the children stuck at home right now, typical or not. Caleb’s autism would kick into high gear and he would scream, tell me he hated snow or weather or whatever kept him from his friends. It was exhausting and stressful to the point that at 50 years old, I have 18 significant health conditions. I’m just worn down.

Parenting is certainly not for the weak. Being a parent in this crisis with no known end date is almost intolerable.

For us, this quarantine is different. Caleb is happy. Like I mentioned above, he is with friends and rotating staff. He has everything he could possibly ever want in his new room. I know some of this is maturity but the resounding truth is that he is exactly where he needs to be, and I’m right where I need to be, always ready to go get him if he needs extra care or contracts this virus.

So, the reason I shared all of this is to help some of you navigate this confusing, frightening world. There is so much out of our control, we need to find things that we can control, to give ourselves much-needed mental strength. The stronger we are, the more peaceful we are, the better the chance that our children will feed off of that energy, rather than fear.

I have dealt with depression several times in my life. Depression can be contagious, affecting those in your home even if you think it doesn’t. It can make a stressful situation so much worse. If you need medication or treatment of any kind, please seek it out. If, like my case, it’s a life situation, not a chemical imbalance, try some of these suggestions.

Always make your bed when you wake up in the morning. It starts your day off right and every time you see it, you will see an accomplishment. Shower daily, or as often as you normally do. On dreary days, like this one I’m in, turn on lights. Light candles. String Christmas lights. Bringing light to darkness is always a path to joy.

This one sounds challenging, but it’s a game changer. Keep the house clean. Keep up on the laundry. Do the dishes right after each meal and empty the dishwasher as soon as it’s ready. I can hear the groans, but chaos begets chaos and the goal here is peace.

Exercise if you can—those endorphins will frame your days. If you can’t, play with your kids. The Floor is Lava is always a hit. So is making a fort in the dining room. Have a picnic wherever you can. Bake a birthday cake, even if no one’s birthday is anywhere near. A doctor told me that card games or any games where pieces are exchanged is not a good idea because it would be literally passing germs, but Pictionary or charades allow for social distancing.

If all else fails, take three deep breaths. Take a Mom or Dad time-out. Step outside your front door and breathe the fresh air for just a minute. Try to find just three things to be grateful for and write them down, then look them over later.

The picture for this post is my favorite little lamp. I never used to light it because I didn’t want it to burn out. It’s on every day now. In the words of the immortal Erma Bombeck, “use the good China.”

And always, always, always look for the light.