And with the pastor’s words I begin a tribute to a very short span of time during the relatively short life of a little boy who impacted me—and I didn’t realize how much until (three weeks ago today)…when I was changed.
I went expecting a funeral or a memorial service for one of my home instruction students. For privacy issues, and because he loved the character Hip Hop Harry, I’ll refer to him as DJ Hip Hop.
This child was born with a congenital heart defect. This resulted in open-heart surgery at during infancy and again at age two; a heart-lung transplant at just over three and a repeat performance of the latter after he rejected the lungs. (In between—every six weeks or so—there were regularly scheduled cardiac catheterizations, angioplasties, etc to prevent further narrowing of his heart/lung vessels. DJ Hip Hop spent a lot of time on his back.)
I was blessed enough to meet the little toughie before that first heart/lung transplant. My mind was blown watching this adorable 3+ little dude of African descent (with an accent that mirrored his lovely mother’s, his lips, fingertips and toes reflecting the blue undertones that showed his oxygen saturation wasn’t what it should have been) running all over a small apartment while attached to yards and yards of tubing to his oxygen tank. He NEVER tripped.
He was referred to me again a year later, to resume sessions at home after all was medically stable. No more tubing or O-2 tank. Rather than send him to school though, mom was advised to keep him home during ‘flu’ season. And she did.
DJ Hip Hop was tough. I mean, strong-willed beyond his age. Maybe all the months hospitalized—constant cardiac caths; the time in during and after his transplants—pushed him into this need to be in control of his tiny apartment world. (Mom kept him in most of the time. She needed to keep him infection-free in the event donor organs became available. Post-surgery, she was advised to keep him infection-free so that childhood illnesses, primarily those that are respiratory in nature, would be kept to a minimum.)
He gave me grief. The first day I showed after his surgery he wasn’t happy with me at all. As per Mom, he wasn’t all that thrilled with the teacher either, but she showed four or five days a week and established a different rapport. (His teacher told me about Hip Hop Harry, this big old Barney-type yellow bear who poses as a DJ and has the kids rapping and dancing along with him. DJ Hip Hop went by DJ (insert first name here) B. From what I learned even on a respirator this little guy scratched and spun imaginary CDs/music. )
Back to the grief he gave me. On several occasions, we started out okay. The second something didn’t go his way, though, DJ Hip Hop flipped the switch and went into ‘no way’ mode. Mom would always be in the background, waiting for the appropriate moment to intervene. When DJ Hip Hop really pushed the limits, she’d tell him in a soft, firm voice and that lovely accent, “You’re going to have a time out.” He’d push up against her and point his finger to her chest. Eyes narrowed, his voice would turn quite foreboding: “No. You’re going to have a time out.” (All I’ll interject is this: Mom was an awful lot nicer than I would have ever been in that situation. But having seen him at the hospital, connected to his ventilator, swollen and in cardiac failure, I can truly understand the leniency she typically showed.)
My final session with him is my most memorable. We started out okay but he decided no way in the world was he going to crawl around on the floor or work while lying down on his belly. (It’s a technique therapists use to build upper body and hand strength.) He started giving me opposition, but for some reason, I decided to go a different route rather than pull my authority as the grown-up. (Not that it worked in previous sessions anyway.) In a rare moment of connect-with-the-kid brilliance, I started singing the theme song to the old Spiderman cartoon and crouching the way Spidy would. This caught DJ Hip Hop’s interest. He got this huge how-can-you-know-that-song look and smile. (DJ Hip Hop’s grin was stunning—what a gorgeous boy). He began imitating me, going so far as to jump off the couch to land in a crouch; close enough for getting weight into those hands and arms, right? That day, he didn’t want me to leave. (He’d told me several sessions before he wanted me to go, in as many words.)
I looked forward to the next session, but it wasn’t to be. Right around Thanksgiving, Mom cancelled our session, stating he was tired and had fallen asleep, atypical behavior for DJ Hip Hop. Later that week, I got a voicemail stating he was hospitalized and probably would be for ‘a while.’
Christmas and New Year came and went. Occasionally I’d ask his teacher if she’d had any word from Mom, but there was nothing. For whatever reason, her cell wouldn’t work at the hospital. Early January, we still had no word. I got worried and called the hospital (next state over, about a ninety minutes away). The nurse put Mom on the phone. The teacher, DJ Hip Hop’s case manager and myself were in the car the next day and off for a visit the minute school ended.
As always, Mom was her gracious, sweet and soft-spoken self. We held her, cried and talked about all that was going on. DJ Hip Hop’s transplanted heart was failing. His kidneys were failing, his systems were shutting down and he was no longer responding to medicines. I really didn’t believe he’d survive that weekend. Somehow though, on an epinephrine drip that shouldn’t have bought him more than 2-3 days time, this little guy hung on close to a month. He couldn’t talk, but he was still very much aware. Wanted his mom and only occasionally indicated the discomfort that came from having his skin stretched due to the massive swelling of his entire body. (From what Mom said, he’d been easily three times more swollen than when we saw him.) He cried because he wanted to go to the ‘nutrition room’ for an ice-pop. Wasn’t enough for him to have it brought to him. And did he chomp that thing and hold onto it tight in between bites. I’m sure it wound up soup at some point.)
Anyway, DJ Hip Hop survived the crash cart, the one time Mom allowed him to be resuscitated. Long enough to meet his father, who hadn’t been able to finagle a visa until a social worker managed to twist some arm somewhere in the system.
And then the call came from DJ Hip Hop’s case manager. His ‘Grammysaurus’ called to tell us he’d slipped away the day before. I was grateful he was done suffering. But I kept thinking of that smile, his toughie ways and that final connection—and of Mom. (I’ll post about her separately.) I did all my crying at his life celebration but wasn’t the least surprised at how much this child had touched others. I was changed by my limited contact.
Tomorrow I’ll share the beautiful tribute/obituary we read at his celebration. My words can’t capture what this did.
To those who are so inclined, please pray for this family today–and for the families of all “heart babies” (as these children are known among those who live it) and for as long as you remember to do so. As per mom’s request at the service, please take the time to learn about congenital heart defects. I’ll take it one step further: consider finding an organization or hospital that specializes in this (and other childhood illnesses and/or conditions) and making a donation of time or money. You’ll never be sorry.
My thanks to all of you for indulging me today and tomorrow.