17 years. he's been alive and in my life for 17 years, this boy who wasn't expected to survive. when i read the foster care referral, i skipped right over the part where it said, "possible death", but i have been negotiating with Death for what seems like every minute of these 17 years.
i can recall the first time i saw his sweet being like it was yesterday. so tiny and perfect, lying in his bassinet in the NICU. he didn't look sick, he looked angelic. at that point he was just supposed to be my foster child, but my soul knew better. i was meeting my destiny-- my most important teacher, my inspiration, my reason to crawl out of bed each morning (and often in the middle of the night, even after 17 years).
jack has survived so much: 6-hour long seizures, pneumonias, 14 surgeries, and sexual assault by a school employee that stole his sense of empowerment and safety and so much more. he survived a broken femur last year when i tried to adjust him in his chair and snapped his leg beneath my hands instead. he's endured so much, and still manages to greet each day with a smile... well, often he greets the day with the typical teenaged grumble and complaint, but he manages to find something to smile about by the time he leaves on the bus. those mornings when he catches my eye and gives me his sideways grin as he gets on the school bus can buoy me through the entire day.
jack is my guru. he’s not an angel; he’s a strong-willed, stubborn teen who can drive me crazy, and laugh in my face while he does it. it’s a given that if i choose to lock horns with him, i will lose. there are times i lose my sense of humor, but jack’s always there to remind me that the gentle way is the most powerful one. i can see his laughter as disrespect, or i can see it as an invitation to stop, breathe, and remember that what’s important is connection. presence. listening with the heart. and every time i do that, what flows between us is so— freeing. so crystalline in its goodness and comfort. my boy’s smile is a gift that nothing can match, when i choose to let it in.
but yeah, Death. i can never quite shake the memories of the times in the ER, begging jack to hold on while 6 different people scramble to push meds, insert a breathing tube, draw blood in a coordinated dance to keep him alive. that feeling of being awakened in the middle of the night to come to his room in the ICU because the doctor promised she’d send for me if things got scary; rushing down the hall to see doctors and interns and nurses huddled around him as his pediatrician struggles to re-insert a breathing tube in his constricted airway. calling out to him, telling him i’m there as i hear the panic in his gasps for air. 17 years in, and my body is still on high alert; listening through sleep for the sounds of jack in distress. they come more seldom now; there are nights that i sleep soundly until 5:15am and then bite back panic that maybe i missed something, forcing my breath to be calm and slow as i make my way to his room with his morning meds and food, telling myself that he’s fine, but checking to make sure he’s really breathing when i get there.
it's not all torture; in general, jack is a very healthy guy. it's just that when stuff hits him, it hits him hard. we take for granted the ability to move, and movement is necessary to stimulate the immune system, or the digestive system. our whole physical "system" is built on a foundation of movement-- and jack's body doesn't move the way most do. this complicates things in ways that can be a sneaky surprise sometimes. you see, i know all too well that healthy one day can mean gone the next. jack has lost more that one friend with similar challenges to him. getting the call or reading the news devastates me every time. i know that many folk with cerebral palsy live into late adulthood quite happily, but not all of them do. i can’t help but wonder how many days i will have with my beautiful boy, can’t help remembering that each birthday may be the last one.
this is heavy knowing, for sure. but it’s also this knowing that forces me to appreciate every single moment— even the rough ones. every moment fighting the good fight, showing up for my teacher, working to provide him with the opportunity to express himself or to feel joy, each of these moments feeds my soul while i attempt to provide for his. who knows who i might have been if jack hadn’t entered my life? i was never a bad person, but i wouldn’t have known the depth of my ability to love, and i doubt i’d have appreciated the simplicity of love and joy that is all around us. this 17-years-and-counting marathon of love and struggle have made my life rich beyond compare, and i am grateful for each breath that moves through my boy. every moment is a gift, and i am humbled to receive it.
Thursday, January 15, 2015
Monday, April 29, 2013
Morning Devotional
I got a rare treat this morning. Jack had a 10am doctor's appointment scheduled, and we had to be up and out of the house by 7:30 to take care of a friend's dog. No point in taking him to school before the appointment, and we were already dressed, so I wanted to find something fun to do with our free time.
We were near the Oakland Hills, so I asked him if he wanted to go to Redwood Regional Park. My boy does love the trees; even in his sleepy state he was up for a walk in the woods.
We got there nice and early. Only one car was in the lot when we pulled in; and elderly fellow and his dog were hanging out at a picnic table under a tree. I let Jack dictate our route. He has so few opportunities to be in charge of his life-- someone is always telling him where to be, how fast or slow to go. Today, as much as possible, I gave him the lead.
We checked out some paths that we hadn't seen before. Tried one direction that came to a sort of dead end. I kept my mouth shut (hard for me to do sometimes) and let Jack figure out what to do next. I watched him look around and pick a new direction. Awesome. I try to remember to do that; let Jack know that he has the ability to figure this stuff out for himself, and that I trust his judgment. Kids need to know we believe in them. Hard for them to get that message sometimes when we jump in too soon
to help. It's a delicate mix of being near enough to help when needed, but not so close as to stifle their self-confidence.
Often Jack loves to race ahead of me. The wide paths at Redwood are perfect for this. There aren't many people for him to encounter, so I feel safe to let him take off and experience some autonomy and speed. He did some of this today, but mostly, Jack drove incredibly slowly. I watched him looking at everything-- the shadows in the trees, the cloud of flies buzzing in their geometric pattern and moving apart as he drove through, the hummingbirds and sparrows that flitted across his path. Again, I remained pretty quiet, just observing my son's interaction with the woods.
I started to tell you that it was quiet today, but it wasn't really. There were very few human noises, but there was a rich accompaniment to our foray. So many bird calls, a woodpecker tapping out a beat on a nearby tree, wild turkeys gobbling in the distance, and the creature running through the brush that might have been a yeti, but was most likely a deer. We rolled along soaking it all in, and I found myself thinking about the fact that Jack doesn't talk. He does vocalize, but that's not his main method of interacting with the world. This can put some folk off, and I'd be lying if I said I didn't sometimes wish he could tell me in words what he's thinking or feeling, but Jack does communicate, and he's taught me so much about listening in a whole new way.
I've had to learn to listen with all of myself. To slow down my racing, demanding mind and to breathe into my moments with him. Jack communicates with his entire being, whereas I'm often lazy and rely upon words. I like words. A lot. The past 15 years have taken me out of my comfort zone and into one that requires me to be fully present in order to connect with this boy who brings me such indescribable joy. Funny that I'm trying to find the words to convey this; it's about the pattern of his breath, the look in his eyes, the way he holds his body. It's about the understanding that passes between us when I slow down long enough to really listen with more than my ears.
Here's the thing: today, I was able to take in the gift. I got us to the woods, and Jack did the rest. He set the pace; one slow enough to be able to notice the beauty and sounds around us. On this day, I was able to slow my internal drive enough to be with him at his pace. I breathed the delicious piney air, I watched him interact with the beauty, saw the smile that beamed across his face, and my heart sang. I've said it before, and it's true: Jack is proof that one doesn't earn blessings. I could never have been good enough to earn all the riches that my son brings to my life. I'm grateful for the moments that I'm able to be present, to remember to feel all of this goodness and beauty. I'm grateful to have been given such an amazing teacher, and that I get to call him my son.
We were near the Oakland Hills, so I asked him if he wanted to go to Redwood Regional Park. My boy does love the trees; even in his sleepy state he was up for a walk in the woods.
We got there nice and early. Only one car was in the lot when we pulled in; and elderly fellow and his dog were hanging out at a picnic table under a tree. I let Jack dictate our route. He has so few opportunities to be in charge of his life-- someone is always telling him where to be, how fast or slow to go. Today, as much as possible, I gave him the lead.
We checked out some paths that we hadn't seen before. Tried one direction that came to a sort of dead end. I kept my mouth shut (hard for me to do sometimes) and let Jack figure out what to do next. I watched him look around and pick a new direction. Awesome. I try to remember to do that; let Jack know that he has the ability to figure this stuff out for himself, and that I trust his judgment. Kids need to know we believe in them. Hard for them to get that message sometimes when we jump in too soon
Often Jack loves to race ahead of me. The wide paths at Redwood are perfect for this. There aren't many people for him to encounter, so I feel safe to let him take off and experience some autonomy and speed. He did some of this today, but mostly, Jack drove incredibly slowly. I watched him looking at everything-- the shadows in the trees, the cloud of flies buzzing in their geometric pattern and moving apart as he drove through, the hummingbirds and sparrows that flitted across his path. Again, I remained pretty quiet, just observing my son's interaction with the woods.
I started to tell you that it was quiet today, but it wasn't really. There were very few human noises, but there was a rich accompaniment to our foray. So many bird calls, a woodpecker tapping out a beat on a nearby tree, wild turkeys gobbling in the distance, and the creature running through the brush that might have been a yeti, but was most likely a deer. We rolled along soaking it all in, and I found myself thinking about the fact that Jack doesn't talk. He does vocalize, but that's not his main method of interacting with the world. This can put some folk off, and I'd be lying if I said I didn't sometimes wish he could tell me in words what he's thinking or feeling, but Jack does communicate, and he's taught me so much about listening in a whole new way.
I've had to learn to listen with all of myself. To slow down my racing, demanding mind and to breathe into my moments with him. Jack communicates with his entire being, whereas I'm often lazy and rely upon words. I like words. A lot. The past 15 years have taken me out of my comfort zone and into one that requires me to be fully present in order to connect with this boy who brings me such indescribable joy. Funny that I'm trying to find the words to convey this; it's about the pattern of his breath, the look in his eyes, the way he holds his body. It's about the understanding that passes between us when I slow down long enough to really listen with more than my ears.
Here's the thing: today, I was able to take in the gift. I got us to the woods, and Jack did the rest. He set the pace; one slow enough to be able to notice the beauty and sounds around us. On this day, I was able to slow my internal drive enough to be with him at his pace. I breathed the delicious piney air, I watched him interact with the beauty, saw the smile that beamed across his face, and my heart sang. I've said it before, and it's true: Jack is proof that one doesn't earn blessings. I could never have been good enough to earn all the riches that my son brings to my life. I'm grateful for the moments that I'm able to be present, to remember to feel all of this goodness and beauty. I'm grateful to have been given such an amazing teacher, and that I get to call him my son.
Tuesday, April 23, 2013
Preparation
My grandmother knew. As I look back, I realize that she was preparing me for this path. She was an amazing woman; even in her most human and sometimes flawed state, she was all about love and seeing with the heart. That is what she worked so hard to teach me, to be willing to see others and love them just as they were.
Nana had a friend, back in the ‘50s, who gave birth to a son with Down Syndrome. Conventional “wisdom” at the time urged parents to place such babies in institutions because they weren’t expected to be able to learn or contribute to society. So important that everyone contribute, you know. My grandmother insisted that her friend keep Ronnie at home, and without any formal educational training, took it upon herself to teach him to speak, to read, to count. Ronnie was much older than me, but he would come over to play.
I knew that he was different, and I’m sure that I had questions, but what I remember was that my grandmother loved him. Saw his beauty. Expected me to see it, too, so I did. He was presented to me as a friend, someone worthy of my respect and care. Never pity, just love. Years later, I happened to work at the same fast-food restaurant as Ronnie, and he was so excited to see me again, and even more excited that my grandmother could hear through me that he was doing so well, holding down a job and paying his bills. He loved her because she believed in him. I was in my 20s by then, and I was glad to be able to be an ally to Ronnie in the workplace, modeling respect for him to my coworkers who were biased about folk with disabilities. I could be a leader, because my Nana had prepared me for this.
She was always pointing out kids with disabilities to me, making sure I saw them; didn’t look away but instead saw their beauty through her eyes. Yes, she probably made the mistake that many do of making disabled folk mythically perfect, but it came from a place of genuine love. Even in my most self-absorbed phases, her message of respect got through. She made sure that it did, through example and perhaps a bit of repetition that seemed like preaching at the time. My grandmother preached love.
I got a job working in special education, and Nana couldn’t have been prouder. She thought I was working with angels, and I was--even though some of them kicked and bit and could curse better than I! I’ve got some great stories from that experience, but I’ll save those for another time. The work was challenging, but when I look back all I can remember is our victories. The times my heart overflowed with love and gratitude and laughter. The small moments that forever changed my ideas of what success means; where the true value of a human being lies. When I started letting go of expectations of Normal, and learned to breathe into Different.
My grandmother developed leukemia when I was in my 20s. This was a devastating blow, but again, she provided me with a gift. The doctor gave her 3 months to live, and she took him at his word. Three months after her diagnosis, she began to hemorrhage. This is the way that folks with leukemia die--their blood vessels break down and can no longer contain their blood. Thing is, she didn’t die right away. I rushed to her side, praying as I went that she would wait for me to get there. She lived a couple of weeks more, and I was able to share the responsibility of caring for her with my mother. I was able to give back to this woman who had nursed me through surgeries and pneumonias and chicken pox, who had held me and told me I would be okay. I held her in my arms and swabbed her with cool washcloths when her fever would jump up. I cooked her meals that she was unable to find an appetite for. I learned to administer her pain medicine, and to coax her to swallow when she wasn’t sure she wanted that stuff. I learned patience when someone I loved was being unreasonable. She was still teaching me in her last days on the planet.
In my 30s, I started working with kids who had emotional and behavioral challenges in a residential treatment facility. This eventually led to my becoming a treatment foster parent, specializing in loving kids with big issues. I believe that my grandmother’s example of unconditional love paved the way for me to see my kids through her eyes. To see their behaviors as opportunities to reach out, to find humor in the crazy moments, and to find reasons to celebrate victories that could be easily overlooked in the midst of chaos and conflict. She had shown me patience and gentleness when no one else did, and I could hear her in my head reminding me of this when I needed to be brought back to center. She would have loved my boys, just as I do. I wish she’d lived to see that her lessons got through.
I especially wish she’d lived to meet Jack. Jack had no behavioral issues when he came to me, because he was only 5 weeks old. His entry into the world had been traumatic, born premature and robbed of oxygen in the process. I didn’t realize it at the time, but the folks placing him with me were really just looking for a comfortable place for him to die. When I got off the phone with my agency and jumped into the shower to get ready to meet him, I burst into tears. No real idea why, I just knew that the arrival of this yet-unmet child was Important. On the day I brought him home, he weighed just 6 pounds, and I slept on the couch that night with him on my chest for fear of him slipping away if I put him down. The other folks at my foster agency were worried about me, afraid I’d grow too attached and be devastated if he died. Thing is, Jack needed someone fearless to hold him to their heart. He wouldn’t have survived if I held back. I didn’t think twice about it; I’d been raised for this very thing, trained by the best, most loving person I’ve ever known.
Jack’s 15 now, and has cerebral palsy. Nothing is easy for him, but he has already overcome more than most folk I know with his incredibly strong and resilient spirit. He inspires me daily to be the person worthy of helping him navigate his life. I can’t count the times I’ve wished Nana were here to know him. She would have spoiled the heck out of this kid, and she would have gone to the ends of the earth to get him anything he needed. I wish he could have known her; gotten to have the experience of being wrapped up in the safety of her warm embrace, heard her brag about him to anyone who would listen. I do my best, but I often fall short. I disappoint myself, I get frustrated and impatient. I catch myself being harsh, and I’m glad she can’t see me. Thing is, I know she’d gentle me through my bad moments, and that’s what helps me change direction. I imagine her voice, her kind smile, her gentleness, and I’m back on track, remembering what I’m here for and how fortunate I am to be having this experience.
See, if it weren’t for my grandmother, I wouldn’t have been given this precious opportunity. I wouldn’t know what it feels like to love someone in this way. I may have had a child or two, but I don’t think I’d have been able to rise above the rest of my circumstances to have this experience. I wouldn’t have been able to see beauty in difference, to let go of expectations and trust that my child’s path is exactly right even though he’ll never do the things most children do in the “normal” way. I might have felt sorry for him, passing him on the street, rather than having the blessing of telling him how grateful I am to be his dad each night as I put him to bed. I’d have missed his smiles, his forgiveness when I mess up, his wicked sense of humor, and the humbling strength and perseverance he shows each day when he braves a world that wasn’t built for him. He is my teacher now, and I am so very honored to be here with him.
So how do I thank someone who’s no longer here? How I wish I could go back and thank her for the sermons, what seemed like nagging at the time. She was doing her important work, preparing me for this opportunity to love. I’m not much on God and heaven talk, but I have to trust that somewhere she knows what she’s done, and how grateful I am for her every day.
Nana had a friend, back in the ‘50s, who gave birth to a son with Down Syndrome. Conventional “wisdom” at the time urged parents to place such babies in institutions because they weren’t expected to be able to learn or contribute to society. So important that everyone contribute, you know. My grandmother insisted that her friend keep Ronnie at home, and without any formal educational training, took it upon herself to teach him to speak, to read, to count. Ronnie was much older than me, but he would come over to play.
I knew that he was different, and I’m sure that I had questions, but what I remember was that my grandmother loved him. Saw his beauty. Expected me to see it, too, so I did. He was presented to me as a friend, someone worthy of my respect and care. Never pity, just love. Years later, I happened to work at the same fast-food restaurant as Ronnie, and he was so excited to see me again, and even more excited that my grandmother could hear through me that he was doing so well, holding down a job and paying his bills. He loved her because she believed in him. I was in my 20s by then, and I was glad to be able to be an ally to Ronnie in the workplace, modeling respect for him to my coworkers who were biased about folk with disabilities. I could be a leader, because my Nana had prepared me for this.
She was always pointing out kids with disabilities to me, making sure I saw them; didn’t look away but instead saw their beauty through her eyes. Yes, she probably made the mistake that many do of making disabled folk mythically perfect, but it came from a place of genuine love. Even in my most self-absorbed phases, her message of respect got through. She made sure that it did, through example and perhaps a bit of repetition that seemed like preaching at the time. My grandmother preached love.
I got a job working in special education, and Nana couldn’t have been prouder. She thought I was working with angels, and I was--even though some of them kicked and bit and could curse better than I! I’ve got some great stories from that experience, but I’ll save those for another time. The work was challenging, but when I look back all I can remember is our victories. The times my heart overflowed with love and gratitude and laughter. The small moments that forever changed my ideas of what success means; where the true value of a human being lies. When I started letting go of expectations of Normal, and learned to breathe into Different.
My grandmother developed leukemia when I was in my 20s. This was a devastating blow, but again, she provided me with a gift. The doctor gave her 3 months to live, and she took him at his word. Three months after her diagnosis, she began to hemorrhage. This is the way that folks with leukemia die--their blood vessels break down and can no longer contain their blood. Thing is, she didn’t die right away. I rushed to her side, praying as I went that she would wait for me to get there. She lived a couple of weeks more, and I was able to share the responsibility of caring for her with my mother. I was able to give back to this woman who had nursed me through surgeries and pneumonias and chicken pox, who had held me and told me I would be okay. I held her in my arms and swabbed her with cool washcloths when her fever would jump up. I cooked her meals that she was unable to find an appetite for. I learned to administer her pain medicine, and to coax her to swallow when she wasn’t sure she wanted that stuff. I learned patience when someone I loved was being unreasonable. She was still teaching me in her last days on the planet.
In my 30s, I started working with kids who had emotional and behavioral challenges in a residential treatment facility. This eventually led to my becoming a treatment foster parent, specializing in loving kids with big issues. I believe that my grandmother’s example of unconditional love paved the way for me to see my kids through her eyes. To see their behaviors as opportunities to reach out, to find humor in the crazy moments, and to find reasons to celebrate victories that could be easily overlooked in the midst of chaos and conflict. She had shown me patience and gentleness when no one else did, and I could hear her in my head reminding me of this when I needed to be brought back to center. She would have loved my boys, just as I do. I wish she’d lived to see that her lessons got through.
I especially wish she’d lived to meet Jack. Jack had no behavioral issues when he came to me, because he was only 5 weeks old. His entry into the world had been traumatic, born premature and robbed of oxygen in the process. I didn’t realize it at the time, but the folks placing him with me were really just looking for a comfortable place for him to die. When I got off the phone with my agency and jumped into the shower to get ready to meet him, I burst into tears. No real idea why, I just knew that the arrival of this yet-unmet child was Important. On the day I brought him home, he weighed just 6 pounds, and I slept on the couch that night with him on my chest for fear of him slipping away if I put him down. The other folks at my foster agency were worried about me, afraid I’d grow too attached and be devastated if he died. Thing is, Jack needed someone fearless to hold him to their heart. He wouldn’t have survived if I held back. I didn’t think twice about it; I’d been raised for this very thing, trained by the best, most loving person I’ve ever known.
Jack’s 15 now, and has cerebral palsy. Nothing is easy for him, but he has already overcome more than most folk I know with his incredibly strong and resilient spirit. He inspires me daily to be the person worthy of helping him navigate his life. I can’t count the times I’ve wished Nana were here to know him. She would have spoiled the heck out of this kid, and she would have gone to the ends of the earth to get him anything he needed. I wish he could have known her; gotten to have the experience of being wrapped up in the safety of her warm embrace, heard her brag about him to anyone who would listen. I do my best, but I often fall short. I disappoint myself, I get frustrated and impatient. I catch myself being harsh, and I’m glad she can’t see me. Thing is, I know she’d gentle me through my bad moments, and that’s what helps me change direction. I imagine her voice, her kind smile, her gentleness, and I’m back on track, remembering what I’m here for and how fortunate I am to be having this experience.
See, if it weren’t for my grandmother, I wouldn’t have been given this precious opportunity. I wouldn’t know what it feels like to love someone in this way. I may have had a child or two, but I don’t think I’d have been able to rise above the rest of my circumstances to have this experience. I wouldn’t have been able to see beauty in difference, to let go of expectations and trust that my child’s path is exactly right even though he’ll never do the things most children do in the “normal” way. I might have felt sorry for him, passing him on the street, rather than having the blessing of telling him how grateful I am to be his dad each night as I put him to bed. I’d have missed his smiles, his forgiveness when I mess up, his wicked sense of humor, and the humbling strength and perseverance he shows each day when he braves a world that wasn’t built for him. He is my teacher now, and I am so very honored to be here with him.
So how do I thank someone who’s no longer here? How I wish I could go back and thank her for the sermons, what seemed like nagging at the time. She was doing her important work, preparing me for this opportunity to love. I’m not much on God and heaven talk, but I have to trust that somewhere she knows what she’s done, and how grateful I am for her every day.
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