Goodbye to the Carousel: A Letter to Kate

Dear Fellow Special Needs Mama,

I heard you say something interesting in one of your recent videos. You mentioned that most of the negative feedback you receive is from fellow special needs moms, and you seemed to acknowledge the irony of this fact. However, after further reflection, I realize that it is not ironic at all. I think I can offer you some insight into some of your follower’s less than kind comments. It is not despite their similar circumstances that they judge you; it is because of them.

Like you, I have two boys, and my eldest son, who is three, is autistic. While the diagnosis was recent, the challenges are not new; they are all that I have known as a mother. I am writing you because I have confession to make. I judged you, just a tiny ounce and for just one second, but still, I did. I love your videos. I relate, and find you to be genuine and of service to this cause. So for the life of me, I didn’t understand why, why did I feel a tinge of resentment when listening to you speak honestly about the challenges we both face day in and day out? For just a moment, while listening to you talk about how hard this life can be, I thought, “If I can hold it together, and never fall apart, and never complain, why can’t she? She is clearly a great mom. Why can’t she suck it up like I have.” I knew I was being hard on you, but nonetheless, these thoughts crossed my mind. I am sorry.

I have stayed strong through the diagnosis, breaking the news to family and friends, through all the appointments, assessments, evaluations, and therapies. I have carried the vast majority of this heavy weight since the first moment I noticed my son was different, and yet I have not broken down. But today I cried on a carousel. Now that is irony. Of all places to have an emotional break, a realization, a carousel at the happiest place on earth seems cruelly appropriate. But you know what, it was perfect. It was perfect because only a situation soaked in this much irony could penetrate my denial. Until today, I authentically believed that I was being brave by constantly holding it together for my son.

But today, after a long day of waiting in long lines, only to try to see if my 3-year-old son would willingly attempt to board any of the most non-threatening and child friendly rides, I faced disappointment after disappointment. I did the walk of shame back down the aisle each time he succumbed to his senses. He had looked on the rides with such wonder and excitement. He had waited patiently in the long lines. He wanted to go on all of them. But he couldn’t. My sweet, sweet, smart boy could not enjoy himself today because of this disability. It literally disabled him from experiencing the joy and innocence that he is so profoundly entitled to.

As the Ferris wheel squeaked and the seat belts tightened and the hot air balloons defied gravity, I saw my boy’s mind and body betray his heart. Yet I sucked it up, like I always do. We would make the best of it. We would continue on. He didn’t have to do anything he didn’t want to do, and we would wait patiently for the friends that we were with. By late afternoon we were all exhausted and about ready to hit the road when we passed the carousel on our way to the exit. “One more try,” I thought. “What is simpler than the carousel?,” I thought. “No loud noises, no squeaking parts, no bright lights, flying or floating involved, just joy and innocence,” or so I hoped against hope. But as I lifted Henry to the harmless horse I felt his tiny body stiffen and I knew.

I looked around and I saw babies and toddlers and teenagers with magic in their eyes as my boy clung to me for dear life. I looked into to the sympathetic gaze of my lifelong best friend and my eyes welled up with a thousand tears I had never cried. This was real. This is real. This will always be real and I can’t hide from it. It will destroy me and who will be there for Henry. This is killing me, slowly and with every painful measured breath, I am loosing this battle. I can’t fix him or save him or love him out of this. I can’t make him something he is not. I have zero control or sense of predictability over the next five minutes or five years.

I am powerless to this disability. It is hard as hell, every single day. But admitting this hurts too. It’s hard too. Because then it’s real. Then I have to face it and I don’t know if I can. I’m afraid. I’m not ready to say goodbye to the hope, to the carousel rides. I’m not ready. So instead of crying, I have judged. Instead of falling apart, I am working full-time to maintain the illusion that I’m ok, that it’s going to be okay, that I am strong. But this is not strength.

Today, as I wept amongst thousands of onlookers, circling them as they stared on with curiosity, was one of my strongest mom moments to date. I was not a victim to my circumstances; I embraced them fully, publicly, vulnerably. The tears rolled down my cheeks with abandon. The judgments and stares were no different from a million other moments, but I was. They didn’t matter. I was being honest with myself, with God, and with the whole wide world as they looked on. Maybe a hundred mothers judged me, but if one, just one, saw me, and knew she was not alone, then I have done for her the same great service that you have done for me.

There are those among us so terrified of falling and breaking that we cannot truly live. We are clinging to our metaphorical glossy ponies for dear life as we resist our spinning realities; we are dizzied and doing everything in our power to keep our footing. While we mustn’t say goodbye to the carousel rides, we must accept the ticket we’ve been given. It’s not what we imagined, and if we spend the whole damn ride falling and getting back up again, at least we’re here. It’s why we’re here. We all, eventually, must fall, before we can rise, catch our balance, only to fall again. It is only when we fall that we invite a hand to reach out and help us back up again. It is not failure or weakness, it is strength. To live is to allow oneself to break; to be broken and yet continue on.

Ernest Hemingway wrote:

“The world breaks every one and afterward many are strong at the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially.”

Thank you for falling off your horse in front of all of us. Thank you for allowing me to be an ignorant bystander to your circling world. Thank you for showing me the surrender in the fall and the strength in the broken places. Please know that those who do not reach out their hand to help you up are not truly judging you; they simply cannot loosen their grips from the coping mechanisms they cling to; they cannot avert their gaze from whatever focal point is keeping them afoot. They aren’t ready, but when they are, when they finally let go, and land on their butt in front of everyone, they will remember you. They will know that they are not alone. They will thank you, as I do now.