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.

 

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

…And Caleb Has Left the Building

Just over two weeks ago, my almost 23 year-old son Caleb went to live in a residential home about 40 minutes away. We are both still wandering in Neverland, a little dazed, still unsure of the landscape, still questioning what the future holds in her hidden hands.

I write this for anyone who has endured this or will endure this challenge, because it is unlike any other.

When I took Sophie to her college dorm in 2013, my mom, Sophie and I lugged all of her belongings up three flights of stairs in 95 degree heat. We had planned so well that the room was pretty much together in an hour. I then hugged Sophie, hard, told her how proud I was of her and how much I loved her and we left.

Sophie later told me that at the time she felt a bit taken aback, as she watched other parents stay all day, then take their kids out for dinner while she trekked to the cafeteria for her first meal, feeling a little shaky and alone.

I cried for about a month, missing the funny, sweet, helpful soul that Sophie is. The house felt empty, as though it too missed the breath of her. I now am enamored of the wife, PhD student and young woman she is. College shaped her and she blossomed through the experience.

Six years later, she now tells me that my leaving her was one of the greatest gifts I ever gave her because she realized right away that everything was on her. Overnight, she became one of the most self-reliant people I’ve ever known.

The day before we were to move Caleb to his new home, I Face Timed Sophie and her husband Al, whom Caleb adores. We told him that he was a big boy, and just like his sister and brother-in-law before him, he was now old enough to go to college. This was the best analogy we could conjure. His reaction was a gut-punch.

Caleb speaks in somewhat broken English. He communicates his wants and needs in as few words as possible. On this day, he said, word-for-word, while crying and lunging into my lap: “I don’t want to go to college. I love you, Mom. I want to take care of you.”

Stress has taken an awful toll on my body. My 18 health conditions are what secured Caleb’s placement. Maybe he knows of these. Maybe he thought he could care for me. But he doesn’t know that some of these conditions could be fatal and he needs to establish his own life in case I’m not here.

I maintain my relative sanity by not anticipating the future. I could never have envisioned this reaction and it left me crying and shaking, which I would do a lot in the next few weeks.

I use special needs picture-exchange software (Boardmaker) to explain changes or trips to Caleb. I made him one for this, showing that he would live in his new house, I would stay in mine, my boyfriend would stay in his, his dad and his wife would stay at theirs and that Sophie and Al would stay at theirs. I didn’t want him to feel he was being kicked out or replaced. This picture board calmed him a bit.

Over the next 45 minutes, Sophie and Al told Caleb how much fun he would have, that he would have new friends and that he could still go to the day program he adores. They told him he would have a new room and that we would all still see him.

Typical of Caleb’s incredibly strong and sweet soul, he finally said, “I like college. Sophie, Al, Mom come tomorrow?” We all said yes and he seemed happy.

We wanted his room to be fully finished the first time he saw it. My sweet father had already sent a painter to transform the room into a color called Blissful Blue, a favorite of Caleb’s. I had already mounted light and heat-blocking navy blue curtains with silver stars. I had a ceiling fan installed to keep the room cool. I had purchased all new Toy Story 4 bedding and made a super soft headboard for him to lean against.

After he left for his day program, I picked up the U-Haul and Sophie and Al drove three hours to come help me. Over the next four hours, ninja Sophie and Al packed up as much as they could of Caleb’s favorite things. I can’t remember what I did but these two worked with a synchronicity that astounded me. I am always awed by the strength of their marriage, in every situation.

They followed my U-Haul to Caleb’s new house but I had to leave immediately to go back and meet his bus. In the short time it took me to drive home and return Caleb to his new house, Sophie and Al had completely emptied the U-Haul and set up Caleb’s room. The book shelves were stacked, the tall DVD shelf was completely organized, and the TV and DVD hooked up and ready to go. When I arrived, we put up Toy Story 4 decals everywhere, including an incredibly large one that looks like a window with the characters coming through, a gift from sweet family members.

When Caleb saw the room for the first time, he said, “Wow!” He touched all of his familiar books, toys, the baby dolls he loves. He looked in the closet and saw his clothes hanging neatly. He touched the new bedding and marveled at the window decal above his bed.

As soon as it was all done, I reflected on how I had left Sophie at college. I remembered the slicing in my heart as I said goodbye to that child and I steeled myself for another slicing as I turned to Caleb. I knew this one would hurt even more.

I knew I had to leave. I knew dragging it out would only hurt us both. But as I looked at his still-baby hands and the chubby cheeks on his still-childlike face, our life together ran through my vision, pictures on old-fashioned film reels.

Caleb is the child for whom I almost died in childbirth. He was born at midnight and they wouldn’t bring him to me because he was blue, but they wouldn’t tell me that. I wouldn’t sleep until I had held him, nursed him. Our pediatrician came in, right after the nurse handed me my beautiful baby at 11 AM. He told me something was wrong with his heart, but they didn’t know what. Right behind him came EMTs, rolling a mobile crib to take him 2 ½ hours away.

That night came a call from a cardiologist at Children’s Hospital of Philadelphia, informing me that not only did Caleb have two heart defects that needed immediate surgery, but he believed, and was later proven right, that Caleb had DiGeorge Syndrome, now called 22Q Deletion Syndrome. I held the phone away from me, like this must be a sick joke, but he kept talking, telling me all the things that could go wrong for Caleb.

Caleb is the 4 day-old baby for whom I prayed through open-heart surgery. I stayed in a chair next to his crib for three weeks, doing immeasurable harm to myself and never healing properly from his C-section. I never regretted it.

Caleb is the child who would have 55 doctor visits a year, with specialists I didn’t even know existed. For the first two years of his life, he was really sick for two weeks of every month. He would get 105 degree fevers and then have seizures wherein he turned blue as his body tried to bring down the temperature. He needed another heart surgery at four months because he grew scar tissue from the open-heart.

Caleb, due to balance and coordination issues that would never fully develop, broke his wrist on one playground and his femur on another. When he falls, he doesn’t have the instinct to break a fall with his hands. He fell directly on his face several times, leaving angry red scratches from cement or mulch. He once fell on a wet floor at a restaurant, knocking the braces right off of his teeth.

He’s afraid of fireworks and dogs. He hates when the power goes out. He hates when anyone cries, I think because he recognizes pain and doesn’t want anyone to suffer. When he’s about to cry, he pinches the bridge of his nose, as if trying to stop it.

So saying goodbye to this child was infinitely more difficult than leaving Sophie at college, where she had a world of wonderful things to explore. Saying goodbye to Caleb meant leaving him in the care of strangers, in the company of three other male residents with special needs.

I kissed this giant boy and hugged him, getting to the U-Haul before he could see me cry. I tried not to picture him studying his room. I tried not to picture his confusion. I tried not to picture what he was thinking, because I never really know anyway.

A week after the move, I picked him up for some doctor appointments. He seemed happy, but he smelled different. His hair wasn’t combed the way I do. He had a mustache that I jokingly call half-way to Tom Selleck. Quick aside, I went right to Wal-Mart, bought an electric razor and shaved him in the parking lot. I’m so used to people staring at Caleb that this didn’t bother either of us one bit.

I posted a picture from that day on Facebook and a dear friend from high school messaged me with words from her own 80 year-old mother, who is taking care of her disabled son: “My mom said to remind you that no one will ever take care of Caleb as well as you do, but that doesn’t mean they aren’t taking care of him.”

I take enormous peace from this statement. But it’s still something I will have to work hard to accept.

Last night I met some friends at our favorite bar. I recently learned that I knew one of the darling bartenders as a child. Her brother was a good friend of Caleb’s in preschool. Though I see her frequently, I hadn’t seen him since about 2000. Last night, he came to visit his sister. He’s a grown man, with a beard and a backwards baseball hat, enjoying a drink at a bar. As soon as I recognized who he was, I had to leave.

Seeing that young man there reminded me of all that Caleb is not and never will be. Seeing him made me realize the chasm between him and Caleb, who as young boys weren’t all that different. Seeing him made my heart sink for the millionth time in Caleb’s life, a reminder that something went horribly wrong when I carried that sweet baby in my body. I had to leave because my poor friends have seen me cry way too many times in the past two weeks.

I went home to my empty house and didn’t feel home. I am now a mother with no children at home and I don’t quite know who that makes me.

Caleb goes up and down with his emotions—sometimes he wants to move back home in 2024 (the length of college, as my intelligent friends figured out) but he has now moved it up to 2020. Sometimes he likes it at his new home, sometimes he doesn’t, but he hasn’t said anything alarming. I’ve spoken with the staff about his hygiene. I will still keep taking him to doctor appointments and next month we will have a party for his birthday.

The most painful part is that Caleb and I are still in Neverland, just not together. I feel like he is on one side of the island and I’m on the other. Every instinct in me tells me to go to him, to bring him home and lavish him with the love and care I’ve always given him. But I feel a metaphorical hand on my chest telling me to wait, to give Caleb a chance to blossom like Sophie did.

I pray constantly that he may know I did this out of love, when I’m sure it doesn’t feel like that for him now.

So I sit on the shore, staring at the mountain range between us, listening for the slightest sound that he needs me. I hope my Peter Pan is finding his footing and learning to thrive and that he will only occasionally listen for me.

Then I will know it’s time for me to leave Neverland.

Photo credit: otherland-larp.fandom.com