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.

 

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

Don’t Be Me

I have always been an overachiever.

Take last week. I am not quite 50 but was diagnosed with shingles. In my eye. Because, go big or go home, right?

Shingles is directly related to stress, which has been a constant unwanted companion since 1996 when my Caleb was born missing part of a chromosome. I’m sure there was stress before then. I know everyone is under stress. Stress can’t be quantified or compared or broken into any kind of functional test. However, the stress of being the mom of a special-needs, medical-fragile child is in its own category.

Recently, when I applied to have my now 22 year old precious, wonderful, amazingly strong son put on a list for residential housing, I was astounded to find out the criteria.

My doctors had to write why I was physically incapable of caring for my son.

I have moved 23 times, all over this glorious country, but in this particular state, there is a shockingly absurd lack of housing for those with special needs. A few years ago, a friend’s son was going through a two-week period of no sleep due to bipolar mania. She sought help from a developmental pediatrician we both revered. Unfortunately, even though the doctor did her extreme very best, there were only six beds available in the state for mental illness on that particular day. They were gone before she could apply.

My friend did all she could. She took her son home and lived through five more days of no sleep for her, her husband and their adult child.

There is something horribly wrong with this outcome.

When I asked three of my doctors to write letters for the state to place my son on the critical waiting list for housing, I figured each would write about one condition. To my horror and shame, the three of them came up with 19 health conditions that were debilitating, stress-related and a few of which will eventually prove fatal.

My first instinct is always to protect Caleb. He is my baby. He is my responsibility. He is a young man trapped in a 6’2” body that weighs over 240 pounds. He will keep progressing but will never be an actualized, functioning, independent adult. My deepest fear, the one that wakes me in sweat, shaking at 2:00 AM is that I will die and he will be placed wherever a bed is available, without me being able to help it feel like home. I never go back to sleep after those wakings.

So I sent the letter. We got approval to be on the list. After two tries, we found a wonderful, peaceful, loving, perfect home. Caleb had to complete a two-part TB test, which I initiated immediately. I began to decorate his new room in my head. I was planning how to help him through the transition and figuring out the best way to present this life-changing event to him.

But.

The night I chose the house and began the procedure, I cried for six hours straight. I feel like a failure to my child. I feel like I am abandoning him. I feel like I am abdicating responsibility.

Then, deep in my conscience, a shadowy finger beckons me and reminds me that I am providing for Caleb, for when I won’t be here. She reminds me that he is a young man and should have a life of his own. She reminds me that it will be best for both of us for him to establish his own life, with frequent visits and constant reassurance that he is so loved.

The morning after the six-hour tear session, my eyes were swollen, but I chalked that up to all of that awful sobbing. I figured I injured my eye with the violence of those tears or perhaps caused a stye.

Six days later, I woke up to an incredibly angry right eye. If I were to try to post a picture, I would need that technology which shades the picture, with a picture box warning that the image would be graphic. It was horrifying, truly, to see my eye closed by red and purple swelling that was so heavy I couldn’t open it.

Again, I figured I had some sort of eye infection. I was fortunate to get an appointment with an ophthalmologist that day. He walked in, asked me if it hurt to brush my hair (how the heck could he know that???) and when I replied that, yes, it did, he put some drops in my eye, looked at them through some device and calmly said, “You have shingles in your eye. You might go blind in that eye. Here’s some medicine.”

He tried to leave the room but I am a bulldog after challenging Caleb’s doctors for 22 years.

“What should I look for? How can I prevent blindness?”

He replied, “Take the medicine and come back Tuesday.”

My mom was with me. I looked to her and she was crying. The nurse wouldn’t meet my eye.

“One more question,” I asked, causing the doctor to sigh and hold his hand on the door but not fully open it.

“What caused this?”

“Have you been under stress?” he asked.

I laughed and said, ‘a little.’”

“There you go,” he replied, finishing his grip on the door and walking out.

I was numb. Now it was 19 conditions. When is it enough?

A-ha, but there’s more.

The next day, Caleb’s caseworker called to tell me that the wonderful, perfect home that had opened up for him was now not available due to funding. My world fell down around my feet like deflated balloons.

I have worked with a Theta Healer for a few years. When Western medicine can’t help me, I go to her. She’s like a therapist on steroids, who uses prayer and incredibly probing questions to ferret out the cause of an illness or condition. She speaks to the theta waves in the brain to help your brain heal your body. I always leave her office feeling healthier and ready to fight whatever is ailing me.

Three years ago I was struggling with Epstein-Barr, a virus that caused me to sleep 14-16 hours a day. There is no cure. I’ve read first-hand accounts of some people who never get over it.  I had a few sessions with her and was able to resume my normal life.

So I called her with this situation and saw her a few days ago. I explained all that was going on. She listened, and then quietly looked up.

“So you think that in order to not have to care for Caleb, you must be sick. And you keep getting sicker and sicker to prove that point.”

BAM.

There’s that old, cloying adage that parents don’t get sick days. Looking back over the past 22 years, I can now see that sometimes I would run myself down trying to be the perfect parent at all times. I would then get so sick or need surgery or completely fall apart instead of just taking some time for myself. I felt time for just me was selfish, just as I fear that letting my son live in a residential home is selfish on my part.

How many of you feel that way? You don’t have to be the parent of a child with special needs to feel this. You don’t have to be a parent. You could be caring for your parent, or a spouse or a sick pet. You could be someone with a job you don’t feel you can step away from. It can be anything that demands your full attention and siphons away any time to care for yourself.

Allow me to be the unwitting example of what can happen if you neglect yourself. When I do find the right place for my sweet son, I will go into mourning but after that, I want to watch myself carefully and see how many of these health conditions improve or disappear. I’ll be my own scientific study.

But it’s not too late for you. I know we can’t all stop whatever we are doing but we can take little steps to care for ourselves. One option is to learn how to breathe. I am at fault for constant fight-or-flight breathing, which causes toxic amounts of carbon monoxide to build up in your lungs. It’s all about the exhale. There are videos on YouTube and apps that help you learn to breathe.

There are also apps that offer three-minute meditations. My favorite is Headspace but there are plenty to choose from. I used to steal three minutes to hide in the bathroom from my screaming toddlers–and scream as loudly as I could into a towel so I wouldn’t frighten the little ears pressed so tightly against the doors. I wish I’d had an app then to help me make that time productive.

Found time is a treasure but we can all step outside for a breath of fresh air. Twenty minute naps flood me with energy to meet the day. Holding a cross or a crystal or whatever brings you peace can help too. I know these are tiny steps but I believe that taken together they can have a profound effect on your health over the years you may be battling stress.

The distilled message here is find something that brings you joy and peace. From there, you will gain the strength to do what you need to do. You will also strengthen your precious soul, mind and body and hopefully end up healthy before you rack up conditions that will weaken everything you need to be everything you are.

Photo credit: shutterstock.com

Unmeasurable Progress, Part II

On January 18, 2015, I wrote the first part of this blog entry. I talked about the tools professionals use to measure Caleb’s progress and chart his intelligence. I also talked about how Caleb has his own tool box and that his is the only one I really care about.

A few weeks ago, I was having coffee, watching the Today show while Caleb waited by the front door for the bus. Queen Latifah was being interviewed and was asked to name her favorite karaoke song. She belted out a few verses of Bon Jovi’s You Give Love a Bad Name. Cut to two seconds later and Caleb had found the song on my phone and was playing it. I keep saying how intelligent he is–despite what our conventional intelligence testing keeps trying to tell us.

Caleb has a diagnosis of hyperlexia, which means that he memorizes the shapes of words, rather than learning them phonetically. I was initially alarmed at this diagnosis, but the therapist we were working with quickly assured me that 90% of what typical adults read is sight reading—the same theory as hyperlexia. Most words we read often we don’t even bother to sound out. We just understand them and move on.

What Caleb has learned to do is memorize song titles from the XM console in my car. He then comes home and plugs those letters into YouTube and listens to his favorite music. He does the same thing with DVD titles, finding clips of his favorite parts of movies on YouTube.

If you meet Caleb, he will immediately ask you three questions: 1) When is your birthday? 2) What kind (brand) of car do you have? And 3) what color is it? When he was very young, he memorized all of the logos of cars and could recite them perfectly. He did this for years before I caught on. And more often than not, he will later remember the birthdays of people he has asked.

Years ago our geneticist told me that autopsies of those with 22Q Deletion Syndrome show that their brains have white matter where there should be grey matter and vice versa. What this translates to is that Caleb has cul-de-sacs in his mind where we have freeways. Some information can never get through.

But… he has found this workaround, this marvelous workaround to help him function in the world. He knows every month by name and loves to change the calendar. He often wakes up at midnight and changes all of the calendars in the house. He understands how to work my iPhone and his iPad with startling speed. He completes 500 piece puzzles in minutes and he does word searches like no one I’ve ever known.

Last year, Caleb was asked to join the Greenville Greeters, a group of people of all ages with disabilities who attend his day program with him. This group goes to corporations, where they wave and shout with great enthusiasm to welcome people as they arrive for work. I could never have conceived of such a joyful use of Caleb and his friends’ social talents. The Greeters website states: “This interaction fosters communication, breaks down barriers and can be informative and transformative to those who participate.”

Caleb has learned to adapt and thrive in our world, which many people, including myself, often find incredibly difficult to do.

I’m writing this for those other parents out there, the ones of young children who have recently been diagnosed with 22Q or any other disability. I’m writing for any parents-to-be who have been told there is something wrong with their baby. I want them to know that there is learning in our babies’ brains, even if it can’t be stripped down to an IQ score or reading level. There is no way to know what strengths your child will be born with, what personality traits they will have that can lead them to find their own workarounds. There will be challenges, some that will knock you to your knees, but there are also miracles waiting to unfold before you like swan wings.

Just this week at the Tony Awards, Ali Stroker became the first actress who uses a wheelchair to win the award for Best Supporting Actress in a Musical. She is the first actress with a disability to win a Tony Award ever. Paralyzed in a car accident at age 2, Stroker didn’t let her physical disability dissuade her from pursuing a career in musical theater. In my life, I’ve let lesser dreams die due to my own laziness, so I am humbled and enchanted by Stroker, who said in her acceptance speech, “This award is for every kid watching tonight who has a disability, who has a limitation or a challenge, who has been waiting to see themselves represented in this arena,” she said. “You are.”

Stroker has said, “When I began to sing, I just felt so free. There was like no limitation.” For her, and for so many of us, along every ability level of humanity, music is a conduit that frees our souls and fills our minds. How lovely that Stroker is being recognized for her remarkable talent.

Last week on America’s Got Talent, Kodi Lee, a 22 year-old young man who is blind and has autism, awed the judges and audiences everywhere with a spot-on performance of A Song For You by Leon Russell. He not only sang in perfect pitch, he also played along on piano. Lee’s voice and performance would have been remarkable on their own, but knowing how much he has had to overcome in his life, he took my breath away. The audience and judges stilled, so I know it affected them as well. Gabrielle Union even awarded him the coveted golden buzzer.

We will have gained so much when we leave out of Ali Stroker and Kodi Lee’s descriptions that they have a disability of any kind. We will all be richer when we realize that we are all part of this wonderful, tragic, magical, heartbreaking ball of humanity that loves and cries and laughs and fears. Distilled by whatever labels others wish to impose, we are all brothers and sisters.

When I was pregnant with Caleb, his older sister Sophie was still a baby. During pregnancy and her infanthood, I played lots of Vivaldi, Yanni (groan all you want but I still love that music), Kenny Loggins’ Return to Pooh Corner and various pop songs on the radio. I had read that music in the womb makes for a smarter baby. So I played music constantly.

Sophie went on to play the viola wonderfully. She met her husband Al, also a violist, in her high school orchestra. She was fortunate enough to play at Carnegie Hall on a high school field trip. She plays guitar and sings like Joan Baez. Whenever she would practice, Caleb would sit outside her room, his back to the wall next to the door, and just listen. For hours. He absolutely loved her concerts.

Sophie later told me that Caleb especially loves music played in the key of G. I’m not a musician but after she told me that, I could hear similarities in the music he loves. I have no doubt that if Caleb’s brain was not affected in just one spot, he could have been a great musician like his sister.

When Caleb heard Queen Latifah singing and found that song so quickly, I was flushed with the realization that music has plowed through one of those cul-de-sacs in Caleb’s brain, crumbling it into a dusty pile of old bricks. Music allows him to muse about his emotions and communicate in ways his mind can’t on its own. Like Ali Stroker stated, music makes him feel free.

There are so many ways we connect as humans. Language is the largest, and therefore the simplest way that we try to measure intelligence and progress. Music, in its composition, boils down to math, with the construction of tempo and notes. Math is a language that we always use to measure intelligence. Therefore, my Caleb, and those like him who understand music deeply in their minds, might be the most intelligent of all of us.

I don’t think we could ever begin to try to manage to understand or measure that kind of progress.

 

To learn more about the Greenville Greeters, click here: Greenville Greeters

To watch Ali Stroker’s Tony Awards acceptance speech, click here: Ali Stroker’s acceptance speech

To watch Kodi Lee’s AGT performance, click here: Kodi Lee AGT

Photo credit: Better Homes and Gardens