Bound to Succeed

May 9, 2019

The first words, in any language, that I heard Rahul say were “Batman, Superman, Spiderman”. When he was 7 1/2 years old we met for the first time, although I had been preparing to adopt him for 9 months. We met at his orphanage, and he was brought into a reception area where I was waiting for him. We sat together for a few minutes looking at each other, then I pulled out my laptop and we looked at photos together. The first one I showed him was of my niece and nephew dressed up for Halloween as Batman and Supergirl. Rahul looked at them in wonder and quietly whispered, “Batman, Superman, Spiderman”.

By the time we got on the airplane to come home we had determined that Rahul could count to 100 in English, could say “Hi Mom, how are you?” (while giggling and holding a hand over his mouth) and knew the English words for most things in picture books. When he arrived in the US he hit the ground running learning English like crazy. He never got frustrated while trying to explain things, and luckily I knew enough Hindi to bridge a few gaps. A few days after he arrived, he began pointing to his feet and repeating a word in Hindi that I didn’t know: “chappel, chappel”. When he saw that I didn’t understand he said “Grandpop, chappel” and pointed again to his feet. When he saw that I still didn’t understand, he dragged me into our apartment and went digging through my closet until he found my flip-flops. Triumphantly he held them up and said, “chappel”! OH! You want flip-flops! Yes! Great idea! Let’s go! And we went to the store to buy flip-flops. He always had a way of explaining to me what he was trying to communicate. And when he didn’t know the English word for something he would ask. Then I would hear him repeat the word to himself over and over again in a whisper, just like he had said “Batman, Superman, Spiderman”. And he never had to ask for that word again.

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Superman

When he started school in NYC he was really starting school for the first time. His orphanage had sent the children who were about to be adopted to school, but Rahul told me that most of the time the kids would be loaded up in a van, taken to the school, and when they would get there the teacher wasn’t there, so they would load back into the van and go back to the orphanage. My adoption agency hired a tutor to work with Rahul for a few months before I brought him home.  I met her in India and she cried when she met me. She really loved Rahul and was going to miss him. She was the one who had taught him all the English he knew.

After a year of schooling, although his vocabulary was very good,  Rahul still couldn’t read or write English at all. His teachers were beginning to get worried. They had him tested, and pulled in every resource they could think of, but when I requested in the Spring that he repeat 3rd grade with the same teacher, they were thrilled with that idea. He was definitely not ready to move on the 4th grade. So he got to go through 3rd grade one more time with Ms. Neuhaus.

But after another year, he was still really struggling. He was barely at a kindergarten reading level. He would get frustrated every day and put his head down or sit under his desk and the teachers had tried everything they could think if to help him. So one morning they sat me down and talked to me about taking him out of their school. They felt like they had tried everything and he wasn’t learning. So maybe he would do better in a private school. Or home schooled. I got the message: take him anywhere but here. But I knew that this school was the place he should be, I just had to get some more people to believe in him there.

So the next day I talked to the vice-principal about putting him in a Special Education class. It’s called a 12:1:1 class because there are only 12 students in the class, plus one teacher and one full-time para-professional. She loved the idea and took me to the class so I could see the students. She said they were a lovely group of children and I signed him up that day.

We had been seeing therapists and psychologists for Rahul’s depression, PTSD and attachment disorders with very little improvement to his mental health. At the same time as I signed him up for the Special Ed class I finally found an amazing psychiatrist who began working with us. She strongly suggested having Rahul receive a neuropsych evaluation and told me it would cost about $5000. I had no idea how I would pay for that until I had lunch with a friend who is a psychologist. She set me up with a non-profit organization that owed her a favor. They did the most amazing, thorough testing for free. From their study of Rahul we learned that he did not have a learning disability, but he performed as though he did because he had missed out on some fundamental building blocks of reading. They had a lot of practical directives and wrote a report that followed Rahul though the next five years of school, guiding his teachers to know how to help him learn.

Once Rahul settled into his 12:1:1 class, he started to ground himself in learning. He made strides, especially in math. And socially, it was really helpful for him to be around other students who struggled in similar ways to him. His teachers were excellent and his school continued to pull every resource available to support him, but he still could not read. In fifth grade, another 12:1:1 class, his teacher began to talk to me about his potential. He had become very strong in math, and he worked really hard, but he was still only at a 2nd grade reading level. He had been going to school for 3 1/2 years, but had barely progressed with reading. I knew from all the therapy work we had done that his mental and emotional issues were blocking him from learning in this area. And whenever his teachers would appeal to me to work with him at home on letters and sight words I flatly refused. I explained that although the Rahul they saw at school was very pulled together and focused, when he got home he would fall apart. Home was his safe space and I devoted most of my waking hours to helping him through the big emotions he needed to process. I explained to his teachers that I was already his Mom, his Dad and his Therapist. I could not also be his Teacher. He did not have space for me to be one more thing.

And that’s when Jessica came into our lives. She was a client of mine and when I would cut her hair she would tell me about these difficult things she had been through in her life. And she also talked to me about her work. She was Bank Street educated Learning Specialist at one of the top private schools in NYC. Because of all the things she had shared with me, I trusted her and told her a lot about Rahul’s traumas and mental health. She immediately had an idea about how to help him learn to read and we worked out a barter agreement: haircuts for tutoring. Within 2 months of working with her, Rahul jumped from a “first semester 2nd grade” reading level to a “second semester 5th grade” level! He jumped 3 1/2 years in 2 months! Jessica is obviously brilliant and she also is very compassionate, and has remained a great friend and a trusted guide for all things having to do with Rahul’s brain.

Once he could read, Rahul was off to the races. When he graduated from 5th grade his teachers were nervous about how he would do in middle school. They supported my idea to bring him out of the “self-contained” classroom and into a new model his middle school was trying that integrated “special ed” students with “general ed” ones. A group of 15 special ed students would have a dedicated support teacher that would travel to all their classes together and co-teach the class with the general ed teacher. I thought this would be a perfect setting for Rahul, but his teachers were a little worried that he would be overwhelmed at the pace. When I went to the orientation at his new middle school I remember thinking that if Rahul could hold a 79 GPA that would be an amazing achievement. I don’t know where that number came from, but it became my goal for him.

Right off the bat in 6th grade he blew me away. His grades were much higher that the 79 average I had imagined, all in the high 90s! His teachers believed in him and were invested in him. This school was no joke. It’s run by a brilliant, dynamic principal, who has assembled a team of administrators and teachers there that you would never expect from a public school in the Bronx. In NYC public schools when a student has any type of special needs they are assigned an Individualized Education Plan (IEP) that dictates all the supports the student needs and it has to be reevaluated every year, with the parents and the teachers meeting together. In elementary school, these meetings started out being quite extensive, but after a few years it would just be me and one teacher signing papers in a hallway. There wasn’t much to discuss. When it came time for my first IEP meeting in middle school I walked into the room and couldn’t believe what I saw.

Crammed into a small office were every single one of Rahul’s teachers, several administrators and support staff. The woman in charge of the meeting exclaimed that she had never had so many people show up for an IEP meeting before! Then one by one, the teachers explained that they didn’t have any idea that Rahul had not been able to read until just recently or that he had only moved to the US a few years prior. They also were surprised to learn of the academic difficultly he had. One by one they told me how he was outperforming their honor students and they recommended that he switch to an all-honors curriculum. Every. Single. Subject. They explained how he was more mature than their other students and quick to grasp concepts. How he put extra effort into building relationships with them and understood their jokes when all the other students were oblivious. I couldn’t believe what I was hearing! My mouth hung open and my eyes widened as they each shared their vision with me of the amazing student was was and would become. They all spent part of their day in this meeting while they should have been teaching, but they felt it was that important that Rahul move into not just general education, but an honors level curriculum.

So he did. The next year and every year afterward he has excelled in all the honors classes he could take. By eighth grade he was declassified, meaning he no longer needed an IEP. It’s so rare that a student is declassified that several of his teachers attended this paper-signing event and we made it a little celebration. He remained at the same school throughout high school and he has been at the top of his class throughout. He slogged his way through 4 years of French, which was the one subject that always eluded him. And it pulled his GPA down a little, but he felt it was important to get all the way through the course. By the end, there were only 4 students in his class and he won the most improved student award. In Eleventh grade he won the top math prize in his grade and the second prize in Science. He has ended up with something like a 94 GPA. And this year, his senior year, he and another student were voted by their classmates as the students most “Bound to Succeed”. Rahul is not the valedictorian, not by a long shot. And he’s not the class president. And most of his classmates don’t know his story at all. But they obviously see something special in him. I think it’s a combination of his grit and perseverance and intellect and focus. One of his teachers told me earlier this year that Rahul thinks on a higher plane than everyone else. Almost every teacher I’ve met over the years tells me they wish they had a whole classroom of Rahuls. They love teaching him. I see how God has put amazing people in his life to teach him and help him overcome the huge hurdles life had dealt him. Without Jessica, without my friend who set up his free neuropsych evaluation, without his very special schools that made every special allowance for him and gave him, literally, everything I asked for, without the vision that so many people have had in his life, he would probably be an average student. A 79 GPA would be the best he could do. But he would never have realized the very great potential that lived inside of him.

So now as he heads off to college and the next phase of his life, I don’t see any other future for him than that his is bound to succeed.

 

Here are some other posts I’ve written about Rahul’s amazing journey through learning:

The Last First Day of School

Clone Me

 

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To my Son, Who Loves Me

April 17, 2019

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Today it’s been 11 years (note the date)

I know you love me, even when you say you don’t. I know you love me, even when you don’t say it. How could you not love me?? I love you more than anyone in the world and have given you my whole heart. I know you love me because I see evidence of your love for me every day. I don’t need constant expression of how and why and how much you love me because I can see it clearly.

We had only been a family for a few months, but had already been through a lot together. One night you were playing a game and asked me if you could play for another half hour before you went to bed. I told you, “Sure, no problem!” and you stopped playing and stared at me. I guess you had expected me to say no. Because you leaned over and patted me on the head and said, very sincerely, “You’re a good mom.”  Those words (and that head pat) meant more to me than 1,000 I love you‘s.

Every time you have vacuumed the couch or cleaned the bathroom or washed the dog or did the laundry I have felt your love. Every time a neighbor comes up to me and tells me how kind you were to carry their groceries or open the door for them I feel your love. When you serve you are speaking my love language; there is nothing that expresses love to me as powerfully as that.

Or when you started brushing my hair. I have tried to create rituals around bedtime because you always had such a hard time sleeping. We would read or talk or I would rub your hands and feet or scratch your head. Then one day I handed you a brush and asked you to brush my hair while we had our nighttime talk. And you didn’t miss a beat. You got to work and took it very seriously. “Does it feel better when I brush all the way to the ends? Or when I use a lighter touch?” You wanted to get it right because you knew how relaxing it is to have a bedtime ritual. And because you love me.

Lately, God has taken me on the craziest ride through love and heartbreak. I’ve mostly kept you out of it–I know it makes you scared to imagine someone else loving me that way. So when I’ve been elated I’ve tried to keep it cool around you. And when I’ve been hurt I’ve done my best to stay happy and faithful and not bring my pain into our home. But I know you saw it. And felt it. And when, after having been absolutely decimated by heartbreak, I decided to put myself back out there and open my heart to love again, I first asked your permission. I really didn’t want to do it if you couldn’t handle it because I knew it had been hard on you. But you looked me in the eye and said, “Mom, I just want you to be happy.” That was one of the most loving things I have ever been told. Someday, maybe I will find that type of happiness and we can share its benefits together.

And last night when my car broke down and I had to wait in the cold for an hour to get it towed to my mechanic which then meant I had to walk a mile home in heels, up a hill, with allergy snot running down my face and menstrual cramps searing through my body…you literally tucked me into bed, placing my favorite blanket over me to calm my shivering. And when you kissed me on the forehead I could feel your man-whiskers scratching my skin as I heard you say, “I love you, Mom.”

I have always heard you.

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Clone Me

April 9, 2019

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Not Purple

A beloved minister and friend used to describe this thing that happens in parenting. He called it The Sweet Spot. There are these moments, usually unexpected, when your child just really needs you. When they are totally open to you helping them and loving them and teaching them. They often happen when you’re busy or in a rush or have somewhere else to be, but he warned parents to recognize these times and whenever they happened, to drop everything to be there and experience these rare moments with your child.

My Sweet Spots with Rahul have often been when we are driving somewhere or walking together. He’ll just drop an amazing question on me or share something so vulnerable or big-hearted. Rahul is a very self-reliant kid, but sometimes we’ll have a Sweet Spot when he has experienced something upsetting and he needs comfort. When he got into a fight in school in 5th Grade he came home and talked about it with me, then just snuggled right into my arms and cried. Some kids do that all the time, but I can count on one hand the number of times he has done that in our 11 years together. All any parent wants to do when their child is hurting or when they’re celebrating is be there for them. To be present and be whatever their child needs in that moment.

Two weeks ago we learned that Rahul’s dream college would be releasing their admissions decisions on Thursday evening at 7pm. Applying to this school was an act of faith on Rahul’s part and in the process of wishing he would be accepted there he learned to hope for it. He hadn’t hoped for something in a long time, and although he knew it was a reach, he proudly shared with anyone who asked him that this school was his first choice.

I absolutely wanted to be there with Rahul when he received this news, because I knew no matter which way it went it would be a huge moment in his life. We had been through the whole college admissions process together and I was hoping too. I had been regularly going to the campus of this school to walk around it and pray about God making it clear where Rahul would thrive at college. And as that Thursday night loomed closer I knew I needed to be with Rahul when he logged into that portal to see the news. I knew it would be a Sweet Spot and I scheduled my whole work day around being home before 7pm.

I have a mobile hairdressing business and that day my work took me all over the city. I was already running behind schedule by the middle of the day, when my appointment was with a client who wanted purple hair. The process of making one’s hair purple is a long, but fairly simple process. First you need to make the hair blonde by bleaching it. Then you apply the purple (or other rainbow unicorn color) to the blonde hair. This client had dark brown hair, so I had scheduled a couple of hours with her to allow time for her dark hair to lighten enough. But when I applied the bleach to her hair something really strange started happening. Part of her hair turned Jolly Green Giant Green. It turns out she had some old hair color in her hair and there are a whole bunch of reasons why it happened and there are one or two solutions I know of to remove this type of color from the hair, but the point is, this was totally unexpected and I had none of those MacGuyver quick fixes with me. So there I was staring at her Four Leaf Clover Green hair while time was ticking away and Rahul’s Sweet Spot was getting closer. I longed for a Renée clone. I didn’t want to leave my client sitting here with Spinach Green hair, but I couldn’t see a way to get home by 7pm. So I texted Rahul and asked him to wait for me to get home before logging on. I had actually set up the login passcode myself, and I laughed as I told him I wasn’t sharing it with him so I could guarantee that I’d be with him for this big moment! Eventually my client and I found a solution (we put blue on top of the Peacock Green, creating a dark teal color that is quite lovely) but by the time I left I was hours behind schedule. I still had one more client to see that night and although I tried to get her to reschedule, she really needed me. And even though everything in me wanted to ditch her and race home to my kid and his big news, I couldn’t abandon her. I couldn’t not do my job. And as time was ticking by I felt like I was in a nightmare where you’re running but not going anywhere. There was no parking in her neighborhood because there was a film shoot going on. (I parked in front of a fire hydrant and prayed my car wouldn’t get towed.) Then, the moment I stepped into her apartment she ran out of it because the heat wasn’t working and she had to go tell the super. So I stood there waiting for her while 7pm came and went. She finally sat down for me to apply her hair color when a neighbor called her asking her to let a city inspector into his apartment next door. (He didn’t have heat either…) When the city inspector arrived I was literally painting haircolor on her hair while she was talking to him. She left to attend to him while her hair color processed and I sat in her apartment as her smoke alarm went off because of the potatoes she was cooking. At this point I would have given anything to have a clone. To be two places at once. To not be a single parent, having to earn all the money to provide for my family, but also be the sole nurturer and caregiver. While the alarm rang over my head I sat down and put my hands over my ears and just stared up at God incredulously. I. Need. A. Clone. Right. Now.

It was 8pm when I walked in the door. “Are you ready????!!!!” I asked Rahul excitedly. “Oh. I already logged on,” he said, as non-chalantly as possible. I couldn’t tell if he was serious or not. “I changed the login password and I already looked at it.” All the blood drained from my face as I realized he was serious. I had missed the moment. I hadn’t been here. He didn’t want to wait for me. I never hated the color green as much as I did in that moment. Cloning humans is not possible yet and therefore people like me–single parents, overworked business owners, busy New Yorkers–can’t be two places at once. So we miss things. We miss dance recitals or we have to turn down big clients or we are staring at Oscar The Grouch Green hair while our son learns he was not accepted to the college of his dreams. When he was so overcome with disappointment and had to experience it alone while you are parking your car in front of a fire hydrant and praying that the drug dealers on the corner will scare away the traffic cops for an hour so you don’t get a $125 ticket. When his heart broke while you were a few miles away stopping your ears and praying for a clone.

I looked at the letter he received and was filled with sadness. Hope deferred makes the heart sick. The night before I had told Rahul that no matter what news we heard he needed to know that he is a very special student. His mind is incredible and his resilience is unbelievable. And if a school doesn’t value those things over all else, it’s not the right school for him. So after 20 minutes of feeling sad, I was totally fine. I knew that God had a better situation for him, where he would truly thrive, and I haven’t felt badly about it since. And a few hours later, we had our Sweet Spot. Rahul knocked on my door and wanted to talk. We sat together while he told me how disappointed he was, but how proud he was of himself for hoping for something. I jumped on his bed when I realized that this decision meant he would be living at home with me for a few more years (the dream college is the only one he applied to where he would need to live on campus). We talked for hours and prayed and I accepted that maybe all the events of the day had played out exactly as they needed to. I couldn’t be in two places at once, but in the end I was right where he needed me to be.

 

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Oceans

March 28, 2019

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Sur la plage

Lately I feel swept away. Like I can’t find my footing and the current is pulling me all over the ocean. Like my throat keeps filling with water and I can’t quite breathe. I know God has hold of me and He won’t let me drown, that He’s spreading Himself out beneath me like a net, like a floor, like a foundation. I feel Him urging me deeper into Him. Urging me to dig down with my hands until my knuckles bleed, to stretch my toes all the way down into Him until I find true footing. Until I grip the bottom and the waves can threaten and shake me, but they won’t sweep me away.

I didn’t grow up with an open heart. I was a fearful child who became a hardened young women with a tight wall around my heart. It wasn’t until I was about to adopt my son that my heart truly opened. God had been working on me for years, chipping away at the death grip I had around my emotions, my vulnerabilities. As I prepared to become a mother all the walls just broke away and I was reborn with a soft heart. Raising Rahul was harrowing, and God kept me strong and tough skinned. But the new, soft heart He created within me was a wonder to me. I couldn’t believe all that I was feeling. I couldn’t believe how much I loved this child. I felt like I was truly living life for the first time.

And I loved mothering so much that I began to open my arms and my heart to other people around me. I cultivated a beautiful group of friends and have learned over and over again how to open my heart to the people God has put in my life. As a hairdresser I have the opportunity to connect with people on a deeply personal level, and I truly love my clients. I love learning about them and listening to their stories, their experiences. I love that they trust me and listen to my stories, too.

But one of the consequences of living life with an open heart is that it gets broken over and over again. I never want to go back to living with closed-off emotions, but sometimes the heartbreak is overwhelming. And lately it feels like wave after wave of pain. Oceans of pain. As I hold on to people I love while they are drowning in depression I feel myself being pulled under, too. As I hear them pour out their hearts in grief and remorse, I feel those waves knocking me around. As I give my heart to people who don’t want it, I feel myself sinking deep below the surface. Oceans of unrequited love, behind and afore, overwhelm and horrify me. Waves of humiliation break over me as I give my heart where it’s not wanted. I’m stretching myself as wide as I can, reaching out my arms, but they can’t steady me.

So I am trying to dig down. I’m searching for footing. Stretching vertically, not just horizontally. I’m pressing my toes down to the mud and reaching my eyes up to the heavens. A favorite song rings through my soul. I will call upon Your Name, and keep my eyes above the waves when oceans rise…Take me deeper than my feet could ever wander, and my faith will be made stronger in the presence of my Savior. Going deeper is finding surrender. Digging deeper is something I can DO. It is not passive. Deeper is safer. Deeper is grounded. Deeper is less me, more God. Going deeper allows me to stretch my arms out as far as I want to without toppling over. And God is there in the deep, calling out to me. “Deep calls to deep, in the roar of your waterfalls; all your waves and breakers have swept over me.” Psalm 42:7

You call me out upon the waters, the great unknown, where feet may fail. And there I find you in the mystery.

In oceans deep my faith will stand.

 

(Here’s the song. Oceans by Hillsong UNITED)

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Usually when I meet a new client they will share a few things about themselves. Maybe they’ll tell me about their favorite haircut, their profession, their children…When I met Mary Ellen the first time she opened her eyes very wide, put her hand on her hip and said, very matter-of-factly, “I’m really into haiku, bookbinding and falconry!” My response was like, “Well! …OK! …Thanks for letting me know!” I could see right away that she was a passionate, creative, curious person, and I immediately wanted to know more about all of those hobbies. And her. What I didn’t envision was just how much this strange woman would weave her way into my life.

She was nearly 80 years old when I met her. And the best way I can describe her is tempestuous. She was a whirlwind and had boundless energy and passion. She would turn on you with no notice, then be singing your praises the next. Sometimes she would greet me at the door (I’m a mobile hairdresser) with a mouthful of vitriol about the doorman or her doctor or her neighbor; and sometimes she would fall into my arms in tears because she was frustrated and tired. She expected a lot from the people in her life, but she was also very grateful for her friends and loved ones.

I’m a person who is very comfortable saying “no” to people. I have a very intense life and I need to create boundaries around certain parts of myself, especially my work. I have hundreds of clients and I travel to several of them each day, usually at least 6 days per week. I don’t have time to dawdle between appointments, so as much as my clients sometimes want to visit with me or feed me or tell me their stories, I’m usually not able to fit that into my day. I love my clients and I really do enjoy spending time with them, but when their hair is finished, mama needs to be on her way! But somehow Mary Ellen pulled me into her life and I found myself scheduling time after her hair appointments to visit with her. Her stories are some of the most amazing I have ever heard. She lived a fascinating life and we found a lot of similarities between us. We both have had to hustle a lot to raise our kids and we both have given 100% to everything we put our hands to in life.

One day I got a call from her telling me she had broken her hip and was in a rehabilitation hospital and asking me (telling me) to come see her. Of course I came right away and somehow I soon found myself overseeing her bathroom renovation (she needed a walk-in shower). So much for my boundaries! Soon after her hip started mending she discovered she had cancer. And she knew that was going to be the thing that took her down, as it had to almost everyone else in her family. She was resolved to make the most of her remaining days and I found myself helping her hire a companion to take her to her second home up in Canada one more time. And once she got back from that trip she declined fairly rapidly. I was no longer doing her hair anymore, but I would go see her every few days, just to hang out and talk and help her with whatever I could around the house.

One day I arrived to see her, not knowing if I would be permitted in. She was at the very end and I assumed only family would be with her. But I was invited in and told she had just gone to bed and was pretty sedated on pain killers at the moment. When I went into her bedroom, there she was sitting on the edge of her bed. She turned and saw me with glassy eyes and a slow smile crept over her face. “You came!” she said. Tears rolled down my cheeks as I helped her lie down and cover up for her nap. I lay my hand on her shoulder as she drifted off to sleep and felt an enormous wave of gratitude wash over me. What a gift to have known this woman. And what a gift to have a brief, lucid moment with her at the end. She passed on a few days later.

That was over a year ago, and tonight I got to share about her and lead a prayer at her memorial service. Her family generously invited people from all the areas of her life to celebrate her and share about her. Mary Ellen had a lot of special items, decorative or useful in her home, and her sons brought many of them to the service for guests to choose from so each of us could have something to remember her by. She had given me a special gift from her collection before she passed, so I didn’t have in mind to take anything. But then I saw something that reminded me of the first thing she ever said to me about her unique hobbies. And I took a book she had bound. I plan to fill it with prayers and drawings and the contents of my own tempestuous, passionate heart.

 

To read and experience Mary Ellen’s amazing stories, check out her unique memoir:

https://www.flywaystories.com/stories

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Imagine Dragons

February 25, 2019

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Rahul and I, imagining.

When my son was 7 1/2 years old he was unable to imagine anything. He didn’t understand what people meant when they asked him what he wanted to be when he grew up. He didn’t play games with imaginary friends or made-up worlds. His world was extremely literal. He had known more loss that any human should have to know and had already lived 1,000 years of sorrow by the time I met him.

I remember the first time I heard him imagine something. We were driving in my Jeep, listening to music and he requested that I repeat a Sarah McLachlan Christmas song over and over. The music, he said, made him imagine. He had conjured up a scenario where he was riding a dragon through space, free and powerful. I loved hearing his fantasy and played the song over and over to let his little mind open up.

Dragons became a common theme in his imaginary worlds. After his bff Justin and he saw How to Train Your Dragon, I remember Justin and Rahul conjuring up an imaginary playmate in Toothless, the dragon in the movie. I remember feeling so grateful for Justin one afternoon when the two of them were battling the monsters of Riverdale with Toothless at their side, something I don’t think Rahul could ever have conjured up on his own.

One evening, Rahul created a “luxury experience” for me in his loft bed. He mounted a small video screen on his ceiling with duct tape, brought all his stuffed animals up to his bed and invited me to squeeze up there to watch whatever movie I wanted and while he fed me and snuggled with me. I chose Monsoon Wedding and we watched a few minutes of it before he grew bored and switched gears. He turned it off and then he turned off most of the lights. As we lay in the dark, he told me we were going to imagine together. He created a scenario where we each had dragons and we got to assign them super powers and we listened to music as we imagined them fly us into outer space. Tears rolled down the sides of my face as I lay there with him imagining our dragons and understanding that he was healing. He was expanding and evolving. The freedom he loved to imagine with his dragon was the freedom he was beginning to feel in his life.

My little boy is 18 now. He knows exactly what he wants to be when he grows up and is well on his way to achieving it. This weekend the third and final installment of the How to Train Your Dragon movies came out and we were there in the same theater where we had seen the first and second ones on the first night it came out. Even though he is practically a grown man, he still loves his dragons. His favorite video games are ones where he can ride imaginary creatures and fly. And he has learned to fly for real! He is on his way to getting his pilot’s license and regularly gets to fly a real dragon (in the form of a Cessna) through the sky.

When we were on our way to the movie the other night I reminded him how dragons had taught him to imagine. And I remembered another special time we shared when he was younger. We travelled to South Dakota to dig for dinosaur bones, and after we found them we camped in the Badlands. One night the winds were blowing our tent sideways and rain was starting to fall and we had to abandon our usual post outside the entrance to our tent playing monopoly and hunker down inside the tent for the night. I was struggling to come up with something for us to do in there together when Rahul’s eyes lit up and he pulled out his Kindle. He had downloaded How to Train Your Dragon and we snuggled up in our sleeping bags for the rest of the night watching one of his favorite movies. Everything about that night felt so perfect to me. The winds were howling all around us, and all we had was a flimsy tent to protect us from the elements. But we were so content together, hundreds of miles from home, huddled around a small screen, imagining dragons.

 

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Healing

December 14, 2018

When I woke up one morning 7 years ago, I knew something was wrong. My neck ached, but in a different way than I had ever felt before. By the time I stepped out of the shower, my pain was gone, but the next morning it returned. Each day it stayed a little longer and strangely, it moved around my body. One day my neck would ache, the next day it was my left knee. Then the next day the bottom of my foot, followed my my right shoulder blade. I have a very high pain tolerance, so it didn’t slow me down at all, but it was beginning to worry me. After a few weeks the pain was widespread and never dulled. I would wake up in the middle of the night because both my arms were inflamed with pain. I would feel vomit rise to my throat as I worked, the pain washing over me in waves that made me nauseous and breathless. I thought about my life: I’m a single mom who only sleeps a few hours a night as it is. Losing any of that sleep could break me. And I’m a hairdresser. Without the use of my hands I can’t make a living. I worried that the extreme stress of raising my special needs son on my own had created a crisis in my body that I wouldn’t be able to outrun.

I went to see my doctor, an amazing woman who really listens to me. She tested me for all the suspected culprits of this type of pain, but found nothing. She continued to think about my case and would check in with me every few days, letting me know she hadn’t given up on me and was committed to figuring out what was wrong. One day after driving for a few hours I looked down at my ankles and they were swollen to twice their size. I stopped by my doctor’s office and drew her a picture of what my ankles looked like and the next day she called me with her diagnosis. After looking at my picture she had me tested for sarcoidosis and the test was positive. It’s an auto-immune disease that can be deadly, but can also go away in a short time. I went to 3 or 4 rheumatologists in the next year to seek treatment, with varied results. One told me I was perfectly healthy. “Good news!” she said. “I’ve tested you for several things and there’s nothing wrong with you!” Another sent me away with a prescription for steroids, which did wonders for my pain and enabled me to keep working and sleep through the night. And one walked with me through the illness, teaching me how to step down slowly off the steroids, advising me that one auto-immune disease can easily morph into another. (He was sure I was developing Lupus).

After several years I had still not been able to ween myself from the steroids and I was gaining a lot of weight. My face had the tell-tale moon shape that prednisone gives you and my body was lumpy and swollen. I still had pain–enough that exercise was excruciating–but could manage to sleep and work. I felt like I was always bracing myself. I was afraid to turn my head too fast or run or put too much weight on my ankles or wrists. I felt fragile and puffy and tentative.

Two years ago I lost my health insurance for good and at the same time I began to notice the tell-tale butterfly rash on my face that indicates Lupus. I started getting sores around my hairline and on my wrists and when I Googled them, I saw they were also symptoms of Lupus. I knew I had to do something about my health and I decided to reach out to a client of mine who is an acupuncturist. I have known him and his family for many years and I trusted his expertise. We decided to barter acupuncture treatment for haircuts and I resolved that even though I knew very little about Chinese medicine, I would do whatever he advised me and I would trust him.

I faithfully followed his dietary suggestions and saw him every few weeks for 3 months and I noticed that I was beginning to really feel better. I felt like energy was moving through my body again, I wasn’t always bracing for injury. My daily pain level had been cut in half. We decided I would try again to slowly step down off my steroids, and in another 3 months I was feeling even better. My acupuncture treatments were really painful and I had no idea what he was talking about when he described the energy channels and yin and yang and all the other Chinese medicine stuff he tried so carefully to explain to me. I really didn’t care. It seemed to be working, so I was like, I’ll do whatever you tell me to do! And if you need to twist that hot needle around in my leg until I scream in pain, carry on!  As long as I keep feeling better, do whatever you need to do!

Then last December, a year ago, he suggested that I try intermittent fasting. I had no idea that it would do me any good, but he advised me to drink only water or plain tea all day, except for 3 hours in the afternoon, when I could eat and drink whatever I wanted. For 3 days. I hated it, but I did it. And for the first two days I felt horrible. Then halfway through the third day I began to feel better than I had in years! It was amazing. It really felt like my body was healing itself, becoming whole again. Energy was flowing through me and I felt very alive. I began to make it a regular practice to fast intermittently several days a week, and I was quickly able to completely stop taking prednisone. I dropped dozens of pounds and began to practice yoga again. I would stare at myself in the mirror in yoga class and couldn’t believe that I could bend and stretch and stand on one foot–all my weight on one ankle–with no pain. My body got stronger and leaner. By the summer I added running to my routine, something I hadn’t been able to do in years.

When people noticed my weight loss, they would ask me my secret. Was I dieting? Oh, I was fasting? Maybe they should try that, too! Acupuncture? Did that help you lose weight? I had no idea. I really could care less about my weight. How could I explain the gratitude and the relief I felt at not being in pain all the time? At not constantly worrying that I would only get worse and worse, compounding illnesses until my body wore away? I have no idea how to help anyone lose weight. I have no idea how to explain why acupuncture and fasting have worked for me. I don’t know how to help anyone heal. I don’t understand why it worked for me. But I do know one thing: I have never been so grateful for this amazing, energy-filled, yoga-praciticing, regenerating, shrinking body of mine! I don’t know why I healed, but I know that I did. And I am beyond grateful for what I consider a second chance at life. I feel blessed and I feel lucky.

If you ask me to explain sarcoidosis or fasting or acupuncture I can’t. If you ask me why I healed when so many others only fade away, I definitely can’t. I know it’s not because I am more faithful or more good or more blessed that I have found healing and renewal. It’s not because I found the best acupuncturist in the world or because fasting is a cure-all. I can’t explain what has happened to me, I can only tell you how I feel. When I work a 14-hour day and have no pain in my hands or cramping in my feet or swelling in my ankles if feels amazing! When I practice yoga and watch my body bend and stretch and strengthen I can barely contain my surprise and awe! As I run around my neighborhood in the middle of the night or through the woods in the middle of the day I literally hold my hands up in the air in praise to God because I can’t believe how alive I feel. I appreciate my health every day. I do everything I can think of to maintain it and celebrate it. As I pray for my friends who have lost their loved ones to terrible disease and for my friends who’s bodies are wasting away from illness, I also thank God for the gift of health.

I didn’t earn it and don’t deserve it, but I will appreciate it every single pain-free, healthy day.

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