Early on in my battles against childhood diseases, I came across the poem by Emily Perl Kingsley entitled “ Welcome To Holland.”
It’s a classic poem that does an excellent job of describing the heartbreak as well as the gifts that come with raising a child with autism. Some parents love the poem – especially parents who, like me, have kids not with autism but with an illness that is treatable/curable. I loved it because the heartache rang so true but the despair of shattered dreams did not. “I’m not doomed to accepting my son’s illness,” I always told myself, “but this poem explains my sorrow.” Then I’d console myself with the conviction that I was a warrior mom who was going to slay the bacteria that was keeping my son sick and then restore his perfect childhood. I did enjoy the part of the poem that spoke about cherishing the gifts of today and enjoying the unexpected lessons that an illness can bring. But I read that part about acceptance with a shield of denial – my son’s issues were only temporary. I didn’t really have to learn to love Holland. We were still headed to Italy. Holland was just an unplanned layover.
And so I spent the first two years of illness reminding myself to enjoy Holland’s gifts, but still intensely focused on getting the hell out of there ASAP. As my six year old’s brain became fried and scrambled by PANDAS (and unbeknownst to me, Lyme disease), I thrust homework in front of him and insisted he re-write the illegible scrawl he swore was his best handwriting, re-spell words that were missing entire sounds he couldn’t hear, re-draw letters he’d transposed and reversed. Maybe he had a disease that made things hard, but I would still hold him to a high standard – the standards they had in Italy. The disease couldn’t be an excuse. People in wheel chairs still needed to figure out how to get on in life and so did my son. When he got well, his peers would know how to spell these words, add these numbers – therefore, we had to find some way to keep up. And so, with my fat-headed strong will and deep, dark fear fuelling us, my son raged and I threatened for hours on end as he struggled with math that was incomprehensible to him and with below-grade level books that could not be de-coded or understood. Pencils flew across the room in anger, tears ran down cheeks red with frustration, and my husband took our other child up to her bath amid the screams at the homework table of “You can SO do it. We just have to keep TRYING” straining to be heard over the wails of “I AM trying. I don’t KNOW!”
It wasn’t that I didn’t believe he was trying. I knew that he was. I knew that he was giving me 110% – the very best he was capable of. We fought and cried not because he could do better, but because he couldn’t – and we both knew it. We both raged because we both felt defeated. Cheated of the ease with which his peers seemed to breeze through school. That no matter how many doctors, how many pills and needles and promises, he wasn’t staying well. The disease(s) were winning and no matter how sweet the poem, being stuck in Holland just really sucked. And so the anger that boiled against the illness and my own impotence ended up being hurled at the body that housed that illness, the body that couldn’t do the things that both my son and I wanted it to desperately do.
In my more honest moments, my heart didn’t just break for him. It broke for me too. We were both being robbed of his childhood. And so we muddled through, using ERP therapy to fight back the OCD…when he was strong enough. I did my best to ignore the motor and vocal tics and prayed his friends and their parents wouldn’t mention them. I begged his teachers to believe in the boy trapped inside, the one who didn’t want to have ADHD, the one who was truly bright but hadn’t been able to show up during assessment tests –or most other days of the school year.
Eventually, medical treatments helped us get the best of the physical symptoms. Tics, OCD behaviors, rages – all subsided once we found the right keys for his locks. But the brain fog remained. Could it be that the brain just needed time to heal? Or was some infection still in our way? Other kids had PANDAS and Lyme and didn’t seem to have the same kind of enduring cognition problems.
This failure to respond wasn’t in the script. The medical literature talked about feeling confused. The only literature that talked about the struggles my son was having was in the aisle of books on learning disabilities. Is he really not that bright after all? Do you mean to tell me this is as good as it gets? Crap.
It was in this moment that Holland became a different place. It was someplace I was going to have to accept as a possible home. I called my best friend and cried. She had always tried to help me find a balance between my intense desire to “will my son well” and a place where I could accept that my son’s learning disabilities might be part of who he is. It felt like a very hard life lesson. I loved my son intensely. But what was that love going to look like if I took away the desire to “fix” him? Would I be quitting on him? How could I accept who he was if that meant selling him short? I just could not wrap my brain around how I could accept “as-is” and fight for what “could be” at the same time. It felt like trying to grasp the sound of one hand clapping.
And yet, that is exactly what my son needed me to do. He had always given me his best. He had gone along with every painful and difficult thing I had ever asked of him. He had fought this battle with me with all his heart and had grown into an amazing, insightful and courageous young man in the process. I always thought I had given him my best, too. But not really. What I had done up to that point was given him the things that were easy for me to give. I gave my time, my ruthless “warrior mom” fight to get him well; I gave our financial resources and my intellectual abilities. But I had not given him the thing that was so very hard for me to give. It was time for me to stop sending the subliminal message that he wasn’t enough, that he had to dig deeper and become smarter, more determined, more of something he was not in that exact moment. I had to figure out how to accept – truly accept – him where he was at that moment and love him and praise him and celebrate with him, without secretly hoping for something more. He deserved that from me and after all he had been through, I had better figure out how to be there for him in the way he needed, not in the way I needed.
I’d like to say I had this epiphany moment where it suddenly got easier for me to find this elusive balance. I didn’t. But slowly, imperfectly, over time, I did begin to find more balance. Shortly after my son was finally diagnosed with Lyme – something he’d had for probably 3 years by then – my own mother became terminally ill. In the hospital, having one of our last conversations, I told her I was still going to need her to hold my hand, even after I was no longer able to hold hers. I told her I really needed her guidance as I did battle with yet another disease in my son’s life. Extracting a promise that she would always look out for me the way only she could, I let her – and my intense need to “fix” my son – go. I didn’t stop taking him to doctors and I didn’t give up my quest to help him get as healthy as possible. But I stopped trying to do it all alone. My mother – a deeply religious woman – used to always tell me “Let go and Let God.” Not being a religious person, this favorite phrase of hers didn’t do squat for me. But at her funeral, I did let go and now I “let Mom.” When it’s time to fret that we’ve hit a road block, when it’s time to feel angry that physical and mental illness can rob a child of joy, I make a more conscious effort to let go. To enjoy the child I have in my arms, as-is, in that moment. I often fail. But when I succeed, the joy is unlike any I’ve ever felt. And I can feel my own mom smiling – giving me the acceptance and approval we all so desperately crave.