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.

Everything You’ve Ever Wanted is on the Other Side of Fear

Right off the bat, let’s quickly attribute that quote to George Addair. I’ve found plenty of proof that he said that, but I can’t find anything else about the man. His quote, however, changed my life.

Fifty-two days ago, I placed my sweet, vulnerable, darling Caleb into a residential home. Fear of that act has siphoned my life force for the past decade. But more on that later.

Fear has been a constant companion in my life. As a little girl, I feared the dark and Hamburgler-like robbers who might sneak in during the night.

We would go on to have our apartment broken into and the one car in our family stolen, so those fears grew long, invasive roots like a willow tree. Many storms would come and invade otherwise normal days, sending those roots further into the soil of my psyche.

As an adult, my fears became more esoteric. Fear of failing, fear of success, fear of saying or doing the wrong thing, fear of reacting too strongly. Feminism was rampant by 1985, but it had not yet perched in my soul.

Mostly I feared confrontation. I would simply stop talking to a friend rather than have a conversation. If I received a bad grade for a project, I would write a letter to the teacher. During one history presentation, I videotaped it rather than perform my speech in front of the class—I was afraid of that teacher, who, two years later, would go to prison for attacking a student.

Confrontation, in my mind had two speeds: 1 or 100 MPH. One MPH was complete avoidance, which leads to self-hatred and an awful pit in my stomach. 100 MPH is screaming at the subject, like that out-of-control father in Twisted Sister’s We’re Not Gonna Take It video.

My life would be a series of conflict-avoidance scenarios. I won’t list them here but the most egregious was that I was raped, after two sips of a drink at a fraternity party, in 1987, when I was 17 years old. I am deadly serious when I tell you I didn’t report him for fear of his reputation being sullied. I also knew viscerally that at that point in time, I would be blamed.

Another trespass on my soul was having my college honors thesis denied by a female professor because she claimed it was written with a traditional woman’s point of view. My interpretation of feminism means we support all women in their beliefs, but my university did not share this view and I was denied that honor at graduation.

Three years later, pregnant with my second child, I didn’t feel any fear, certainly nothing like I had felt when I had my daughter Sophie 17 months before. Throughout Caleb’s pregnancy I felt peace and content.

When he was born at midnight and taken by noon from Princeton, NJ to Philadelphia, PA, I still felt no fear. When a cardiologist called the hospital later that night and told me that Caleb seemed to have a condition called DiGeorge Syndrome (now called 22Q Deletion Syndrome), I felt no fear for me, only for that tiny baby who was now so far away from me, awaiting open-heart surgery. I was soaking in worry, but not fear.

Six weeks later, after a grueling recovery for both of us, my little family was transferred from New Jersey to Buffalo, New York. I received a bill from the Children’s Hospital of Philadelphia in the amount of $144,000 for Caleb’s surgery and hospital stay.

I knew I had to call immediately, but I couldn’t let my babies out of my sight for any length of time so I sat at the kitchen table, preparing my confrontation. Raising my voice would frighten Caleb and his 18 month-old sister so I took a few deep breaths. My hands shook a bit as I dialed the hospital.

The woman on the other line verified the bill.

“But we have insurance,” I said calmly.

“Yes,” she said disdainfully, “but you didn’t pre-register your son so it won’t go through insurance.”

“So after missing my baby for four days and leaving against medical advice, you’re telling me that before rushing to see my baby, I was supposed to stop by and register him?”

“That’s exactly what I’m telling you,” she huffed. “It’s procedure. Now, can you pay all at once or—“

“Is this the number you wanted?”

Silence.

“You see, ma’am, the first thing I did when I arrived at your hospital was pre-register my son. We’re done here, right?”

That bill ended up being paid in full. After I hung up, a peace settled about my chest. I had just had my first confrontation without yelling. I was a little drunk with power. If only I had known how many peace-stealing confrontations were headed my way.

Two months later, I called another hospital because I hadn’t received a confirmation call from the MRI department for the next day’s appointment.

“We have no Caleb on the schedule today or on any day. You must have done something wrong.”

My heart raced, my throat completely dried out and tears threatened to shoot straight out of my eyes.

“But… but, there is a hole in the crack of his bottom and they told me it could be a tethered spinal cord, which would need immediate medical attention. You have to see him.”

“I could try to schedule him now, but our next appointment is 8 months out.”

I went numb. I looked at that little boy who had already had open-heart surgery, four missed spinal taps and a balloon catheterization. Failure was out of the question.

I believe God spoke for me now, because there is no way, in that moment that I could have responded with: “Ma’am, I don’t know if you have children, but if you do, I pray they are healthy. If they have special needs like my son, I pray that people will be kinder to you than you are being to me right now.”

“I’m so sorry,” she said, and I believed her. “Let me see what I can do.”

For the test, she had to coordinate the test, anesthesiologists and a cardiologist, but she made it happen two days later. Caleb would eventually be diagnosed with midline failure to close, but his spine, for that time, was healthy.

Fear had made confrontation something ugly and angry in my mind. It had made confrontation something in which neither would be happy, with no growth or understanding. In learning to face fear, I was learning to change the face of confrontation and it would change my life and my children’s lives completely.

The rape and the damaged girl it left behind in tatters would lead to an abusive 19-year marriage, from which I eventually fled, calling upon all of my fear of confrontation. Sure, I was scarred and hobbling, but I had my teenage babies with me. I left like many abused wives, under the watch of a skilled therapist. We slipped out quietly while he was out of town, taking only our clothes and the computer which held all of my writing.

I conquered the fear of being a single mom—I learned that I had lived that role for almost two decades and that fear was baseless.

There would be other fear and fights along the way: fights for inclusion, therapies, proper class placement, medical tests and treatments. When Caleb turned 21, I had to fight to find doctors and dentists who were willing to take him on, since the pediatric world could no longer see him.

But there was this one fear. You know the kind. The kind, that, as a child, made a sweater in the corner of your room at night look like a monster. As an adult, it’s the kind that slips into a dream and rotates that dream into a nightmare that will wake you, dripping in sweat, afraid of the most gruesome corner of your mind.

This fear was “What will happen to my son, the light and love of my life, if I die? Who on earth could care for him?”

If I dig a little further, that fear descends to knowing that, with this child, I am not leaving him to live a better life than I had. We all want our children to know better than we did. Caleb will have a full life, but a much different one than I dreamed for him.

Caleb’s sister, Sophie, is knee-deep into a PhD program in genetics. She is learning computer coding. She knows more in the first second of her waking than I will know in a month. Sophie will live every parent’s dream—she will live a full, satisfying, rewarding life.

My fear of leaving Caleb exploded on October 2. A traumatic act did occur, but to me, thank the Lord, not Caleb. I went into that confrontation with the courage of an All Star sliding into home plate.

The new placement took a few conversations. I advocated for an immediate change of placement, which used that carefully honed skill of quiet confrontation.

I only realized after everything had happened that my entire life had prepared me for that one phone call.

Caleb, though his calm, sweet, strong disposition taught me to fight for him. He taught me to look fear in the face and walk toward it. Like Dory and Nemo sang, “You can’t go over it, you have to go through it.”

Through careful negotiation, I was able to help him secure housing in the Cadillac of homes in our area, with amazing staff, roommates his own age, and a private bed and bathroom. He still attends the day program he adores. Friends and I believe he is the happiest and most independent we’ve ever seen him.

Fear blocked me from ever seeing that Caleb’s life could be this wonderful. The wise Mr. Addair was right.

I know I have many more fears to confront, but I will use this experience as my exemplar.

So what’s on the other side of your fear?

 

Photo Credit: Dr. Joseph Ivan on Twitter

Everyday Loss

In my little world, the last few months have brought an inordinate amount of death. A dear, dear friend named Jamie passed away after fighting cancer for nine long years and every time I think of her, I am haunted by her laugh and the smile that always lived in her sparkling, mischievous brown eyes. I think of her husband and two adult children who now have to carry on without the light that emanated from their wondrous wife and mom.

My friend Lisa, who lives with me in the trenches of special needs moms, lost her brother Dan after a long fight with cancer, even though he was in remission. Dan was so well-loved that at the celebration of his life after a private funeral, the venue was filled to capacity. The group chose to remember Dan by swapping funny stories and remembering the vibrant, kind and joyful man he was.

In our big world, you can’t turn on the news without hearing of innocents being slayed all around the world. It’s an angry time and an angry place with too much loss. I enjoy watching retrospective documentaries and I wonder what future documentarians will have to say about this volatile time.

At a birthday party the other night, I was talking with an acquaintance named Julia who quickly became a new friend. A few weeks ago, she had posted pictures on Facebook of a beautiful young woman, alongside some very sad words. So I asked Julia about her. She told me that that smiling girl was her darling daughter Amanda, who had been killed in a tragic car accident when she was 19 years old, on July 25, 1999. I’ve seen this woman socially several times and she always has a smile on her face that belies the horrific tragedy of what she went through 20 years ago. You would never know by looking of the weight of the burden she carries.

Before we spoke, I may have subconsciously set Julia into the nasty, embarrassing corner of my mind where I sweep people who look to me like they have lead perfect, happy lives with perpetually clean houses and new cars and no money worries and wonderful, fulfilling marriages and careers. That corner needs to be tented and fumigated as if it were housing the worst insects on the planet, because it is. There is no perfect anything. Everyone has a story and if we delude ourselves into thinking that they don’t, jealousy and anger will shrivel our hearts to raisins.

I’ve written before of the loss associated with raising a child with special needs. There is the loss of friendships you thought could withstand the new normal of medical visits, relentless hand sanitization and rules about who can touch what. There is the loss of family members you thought could withstand the rubber hammock of changing emotions and ABA- mandated lessons to follow. There is the loss of typical classrooms and sports or music or whatever hobby might have floated around the edges of your mind as part of the future for your child.

There is the loss of the feeling of pride of your newborn or toddler in public. The first time your child with autism completely loses it in a grocery store, or a football game, or anywhere where scrutiny hides like a demon in shadows. The love you feel for that young soul supersedes the stares, the whispers, the gossip. But it hurts. Oh, how it hurts. So you hold your head high, willing the tears to be quietly whisked away as if by windshield wipers. You hold the hand of that precious baby, sending all your love into the grip, while they twist and turn and contort to get away from you.

You can’t win. You won’t ever win. But that won’t stop you from trying.

You will try at school. You will try at your other children’s schools. You will try at block parties. And the mall. And the gas station. You will try at the community pool.

And you will always fail. Because it’s not about you.

It took years, eons to finally accept that Caleb was not meant for my world, nor me for his. That’s the cruelest reality about having a child with special needs. Neither of you fits. You love them fiercely, with a love that transcends time and space and the rude, glaring, invasive, probing stares of those who do not understand. But, alas, you two will never inhabit the same universe.

Perhaps the most painful is when that child, teenager and then adult, is in pain, and you try to offer comfort.

“Leave me alone,” or “I’m busy” is the refrain you will hear most often. Sometimes it will be a scream. Sometimes that scream will be accompanied by a flat hand to his own face.

So you step back, your weary heart wounded yet again. You try to will the tears to be sucked back into well-worn ducts, but somehow that doesn’t happen.

After these exchanges, I often find myself in the fetal position on my couch, wrapped in the denim blanket that once graced Caleb’s first big-boy bed. It has faded to the softest blue and it has several holes in it from so much use. It is my greatest comfort in the world.

Incomprehensively, I had to fight for this blanket in my divorce. I gave up something seemingly more valuable to keep that blanket. My ex-husband knew how much I need it, how when I wrap myself in it, I can go back in time, for a millisecond, and join the toddler who reached for me, who was comforted by my hugs. That little white-blonde-haired boy could trade tears for giggles in those days, when we pretended we were in a tent or when I tickled his belly. I had such high hopes for that chubby-cheeked little boy.

Now I wrap myself in that blanket when unbidden tears just start rolling out of my eyes as I wait to hear if a residential placement is available. I know we both need it but the thought of going through with it makes me feel like I’m trying to walk but I’ve accidentally nailed my shirt to the wall behind me. Even though Caleb is an adult now, when I look into his sea-glass green eyes I see that baby. I see all we have been through together. And I know with a gut-twisting thud how very difficult this will be.

I wish that Caleb could be graduating college right now. That he had a girlfriend and friends who would show up suddenly for dinner. I wish that Amanda had had these past 20 years to spend with her mom and become all that she ever wished to be. I wish that Jamie was with her family, making them laugh and loving them with the love she lavished so freely. I wish Dan was here to joke with Lisa and hold his wife’s hand.

Physical loss causes the deepest intake of breath. Julia told me that she didn’t think she would be able to breathe after Amanda passed away. She told me she is surprised that 20 years later, she is still breathing. Anyone who has ever lost someone will recognize her next statement: “Love never dies.”

No matter the loss, the love always remains. Sometimes it burns like a cigarette on a favorite pillow. Sometimes it aches, like the ache I feel when I want to hug Caleb and he says, “Hands to self.” Sometimes loss just lingers like a shadow that follows wherever you go.

Loss is loss is loss.

My loss with Caleb is called autism. Autism is like an alien who sucks out all of the connective tissues of relationships and leaves dried-out limestone where there should be living, pulsing blood and love and sweetness passing between two people. I will always, always love my son. And I will always, always curse the autism that takes him away from me.

My family helps me with Caleb and they all tell me exactly what I tell them all the time: “Being alone in the house with Caleb is lonelier than just being alone.” He’s there and not there at the same time. You naturally expect an interaction of which he is not capable. He cooperates with bathing, asks for meals and declares when he’s going to bed. Sometimes he will sit and color quietly next to me while my mom and I play a game, but mostly he stays on the top floor of our house, which is explicitly his.

So what will the loss be like when he eventually moves out? He was out last night with his father but I kept listening for his giant-like footsteps and kept putting my foot on the first stair to go check on him. How will the house feel? Will it be hollow like the physical loss of a loved one passing? Will it just be too quiet?

I can’t sit with these feelings for too long or I will risk losing a day to tears on the couch. Sometimes a day is okay, but sometimes the depression pulls and anchors me and it’s very hard to claw my way out.

Loss wears many faces. It comes for everyone in one form or another. The only way to diminish its soul-scarring effects is to talk with each other. Keep Jamie and Amanda and Dan alive by sharing stories and letting memories warm our hearts like gentle spring sunshine. For Caleb, I find other moms in my situation and we turn tears to laughter, which heals instead of drains.

Loss is a part of our existence, but the enemy of loss is love. Love makes loss retreat, so let’s love as hard as we can, as fully as we can, whenever we can.

 

Photo credit: Stocksy United

This blog is lovingly dedicated to Jamie Price Harkins, Amanda Williams and Dan True.