…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

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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