I talked about going home a few weeks ago.
Then I did it.
I mean, kind of.
I went to Charlotte and that’s where I found Holly.
Or rather, I found her again.
Holly has an Everybody’s Boy too, but I’m going to let her tell you all about that.
I’ve known Debby since we were enrolled in Little Acorn preschool together. I remember our moms being friends, and I remember Debby and I being classmates – off and on – throughout school, up until I moved to Utah, right after our freshman year. Besides that, I have few memories of getting to know Debby on a personal level during those years.
It wasn’t until a couple of years ago that I began reconnecting with the Crystal River classmates and friends I’d left behind almost two decades before. I treaded lightly at first, mostly because when I moved away, I didn’t say goodbye – to anyone. Why? Because I was sure everyone hated me. Why? Because I was a moody, hormonal teenager and I was committed to the whole “me against the world” mindset. It was so romantic.
When I discovered that my Crystal River friends not only remembered me, but they liked me, I was slightly taken aback. I mean, I thought I was cooler than that. The worst part is that they actually remembered me being a nice person. Booooring.
Anyhow, as I reconnected with my past life, one person at a time, I was awestruck at how amazing these people are. They’re smart, funny, interesting, and wonderful parents – and that’s only the beginning of it. More and more, I found that the people who had known me so long ago actually seemed to “get” me more than some people who now talk to me on a regular basis. As strange as it sounds, some of these Facebook connections are now some of my closest friends, even though we haven’t seen each other for years.
About a month ago, Debby messaged me on Facebook. She had plans to travel to Charlotte for business, and asked if I’d like to make a date of it. We had reconnected on Facebook, and I regularly read Everybody’s Boy, but I hadn’t seen Debby since my freshman year.
Well, that’s not entirely true. A few months ago, while going through some old keepsake boxes, I unearthed some videos my Crystal River friends made and sent to me after my move to Utah. After going through the difficult task of hunting down a VCR (yes, it is nearly impossible to find a VCR these days), I was able to watch those videos. Debby made a cameo appearance in one. She was pulling some books out of her locker – absolutely adorable in a mock turtleneck and high-waisted, acid wash jeans – and she simply looked into the camera, recited her address, and asked me to write to her. I remember being struck by the kindness in her eyes, and by her innocent smile and unassuming nature. She lit up the screen. She was a genuine soul – I could feel it – and it was within her twenty seconds of screen time that I realized I loved Debby. I was so touched by the video that I sent her a private message the next day – cheesy as all get out – explaining what it was like to see her on that video.
Needless to say, when Debby asked if I wanted to see her, I jumped at the opportunity. Within a few weeks, I was watching her car pull into my parking lot. We were noticeably nervous for maybe the first two minutes. After that, it was like hanging out with a sister.
That night, over wine and fried pickles, we covered a lot of ground. We sat in my bed with my boys, watched my VHS tapes, and had a lot of laughs. After putting the kids to bed, we sat out on my back porch and had some cries.
It was magical, the time I spent with Debby. It’s rare that I meet someone with such generous spirit, who is capable of such honest and insightful personal revelation. She doesn’t judge (didn’t even flinch at my six year old’s apparent love of the word “shit”), and she’s funny as hell. In spite of the very different paths Debby and I took to get to where we are today, we somehow managed to reach many of the same conclusions about life’s biggest questions. Most of all, we both made it through some of life’s toughest trials – and even on top. By the time Debby left that night, I knew I’d reconnected with a kindred spirit, and that I was blessed to have found such a true friend.
In the days that followed our reunion, we started a penpal-ship, and on a personal level, something amazing happened. Whereas before I’d been pent-up with the worst case of writer’s block (that had literally lasted for over six months), I was allofthesudden inspired to write. And it seemed Debby was inspired, too. We spontaneously began sending each other pieces we were working on, and coming up with ways in which we could work together. I’m still reeling from this rejuvenation, giddy with thoughts of what it could blossom into.
On a whim, I sent Debby a story I wrote several years ago while dealing with the aftermath of my oldest son’s diagnosis with Duchennes Muscular Dystrophy. It’s a very personal story that I’ve shared with very few people – mostly because I haven’t been ready to open up about the more intimate side of adjusting to the realization of being a special needs mother. Somehow, my connection with Debby opened me up, and I felt ready to share. When she asked me, so humbly, if she could use the story for her blog, I had no apprehension about saying, “yes.”
So, here it is.
But first, I want to make something very clear: This is not a sob story. This is a story of acceptance – and of strength, and courage – in the face of life’s harshest truths. And that’s something I think we can all relate to, special needs child or not.
I sometimes watch you play through the slit of a cracked-open door. It amazes me how you can entertain yourself, for hours, with your creativity, your imagination. Your white-blond hair (and your father and I are so dark!) seems to glow, as if your body, in rebellion against the restraints of the physical world, has produced for you a halo as proof of your divine station. I am in awe of you, so much so that at times I cannot bring myself to ask to join you. It’s as though my eyes are privy to a sight so magical, so ethereal . . . like a kiss between hummingbirds, or a faerie dance . . . that for me to interrupt your playtime would be sacrilege.
Robots have always been your favorite playmates. Each one you own has a name, and many different functions. Your robots can do anything in the physical sense, and are always personified with the most virtuous of human qualities: kindness, generosity, conviction . . . for you liken yourself to these robots. If only your parts were made of steel and hydraulics . . . if only your body was invincible, like a robot’s.
I understand now why you’ve always wanted, so badly, to be a robot. And I see how hard you try – so determined, so full of ideas, and with your tongue firmly pressed against your lower lip in hard concentration. There is a shop in your bedroom, which no one can see but you, where you go to remove the wheels from your cars and attach them to the bottoms of your shoes. Sometimes, when a fortunate rumble through your junk drawer amasses springs, you attach those, too. You once asked me for help affixing rockets to your heels, but I couldn’t in my right mind approve that idea. After all, you were only five! But, really, I wish more than anything I could attach rockets to your feet, or wheels or springs . . . anything to let you know the feeling of being able to run or jump . . . anything for my little boy, ever desiring liftoff but stuck on the ground.
I remember taking you as a toddler to the pediatrician. I could only hint at my concerns. To bring them completely out into the open would make it all too real, and you were so young then . . . there was still time. Time could prove my fears to be irrational – just the normal worries of a first-time mother. But time only shined a brighter – ever brighter, nearly blinding – spotlight on the things I had hoped would go away: the awkward gait, the inability to run or jump, an increasing clumsiness, frequent falls . . .
Each trip to the pediatrician became more painful. When she commented on your “silly” fascination with robots I wanted to slap her. That moment instilled in me the harsh reality of a world of people who do not understand, who cannot understand, you. And I became even more your protector – your advocate.
And so, one day I asked to join in your play. I became a robot, too, and we had adventures together, and talked – robot to robot. Last time we played, you were the usual blue transformer, with wheels for the hands and feet, wings, and rockets attached to the shoulders. I chose C3PO, from Star Wars. You had never seen Star Wars, so when you pointed out that he needed to walk faster, that his legs seemed to be stiff and hindering his ability to move, I explained to you that C3PO was not built to race or to fly. I told you that C3PO was my favorite robot, for his power did not lie in his physical abilities, but rather in his brilliant mind and in his expansive “heart” . . . and that heart, to me, was infinitely more important than brawn. What I did not say was that C3PO is a lot like you.
Later, another doctor in a long line of hospitals and white coats – a different doctor . . . who watched my expression so solemnly, solemnly . . . as before his lips even parted, he communicated with his eyes what I had been so afraid to hear. He saw the solitary tear escape down my cheek, then reminded me that it was not healthy for my child to see such grief. What a fool he was! He had no idea, no clue, that I was exercising every ounce of restraint I had at that moment . . . that inside I was screaming. Little did he know that his words had ripped through me like heavy artillery, so that my physical self had shattered and collapsed inwardly, so that he was only seeing the makeup I wore.
That day, in the doctor’s office, my heart stopped. It was pummeled and obliterated into microscopic pieces . . . unrecognizable and beyond repair. To this day, it only ticks with the mechanics of human intervention. I have learned to live in an imaginary world, where anything and everything is possible. For, I discovered that the only way a person with a broken heart has of holding on to hope is to inhabit this alternate universe, where miracles happen daily and human will is enough to make the impossible a reality. In this dimension of endless potential, I can create for you, my son, mechanical limbs, which will forever propel you through life – which will jump and run and leap to dreamlike heights. I can build a mechanical diaphragm that will forever pull the earth’s sustenance into your lungs, and a mechanical heart that will never atrophy, that will never slow or weaken . . . I will become a doctor, so that I can find the cure for your disease. I have grown wings with which to carry you over the burdens of the material world. And understand this, my love: you gave me those wings . . . it is you who holds them in place.
See, in the world I now inhabit, there are ways for you to stay with me forever.
Although you are older now, your robots still occupy your bed . . . and your nightstand, shelves, and chest-of-drawers. They are still your frequent playmates. Each robot has been lovingly improved-upon and personalized, some with wheels tied on or taped to their feet, some with rubber-bands and ropes attached to their hands (this upgrade has multiple advantages, you have taught me) . . . each one upgraded, except for C3PO. Instead, you have taken to “feeding” him orange juice. And you, yourself, can’t seem to get enough of it. You ask me if orange juice will make you “better.” I can only guess at the implications of this question in your head, and find myself gagging on emotion, to the extent that I can only squeak out a reply: “Sometimes, if you have a cold.” Your next question: “Will orange juice make my muscles stronger?” And, as I’ve never lied to you, I can only answer, “You are the strongest boy I’ve ever known.”
Still, you are ever-faithful to orange-juice and its special powers, and I will never stop pouring your orange juice. Our robots will always reside in a universe where they can freely jump from one height to the next, where they can hold their breath under water forever, where they can sprout wings and soar . . . I will always believe in a world without boundaries, for them . . . for us.
The day will come when I will have to accept that the weight of your infinite soul and boundless heart was just too great for the world, or for your body, to support. Your restraints will be removed and you will be freed of life’s burdens. I know this will happen. I live with it everyday. As for me . . . I will be left behind, stuck on the ground and ever desiring liftoff . . . tinkering with my mechanical heart.