One cannot bear the weight of the world everyday without feeling a bit weak. The storms erode the soil around your roots. You feel the damage, but you still hold the world. You do so until the damage is too great, and finally you fall. There you lay, waiting for someone – anyone – to pick you up, build up the soil beneath you, and get you firmly planted again.
The screams have lasted ever since school. He was shaking, crying, and clearly needing something…but what my sweet baby, what is it you need?
The changes…it’s the ever-coming changes. They hit my boy from all sides. They leave him reeling. It’s that school has started and they are still trying to figure out how to reach my boy. It’s the demands on him. It’s all of it. It’s created a speed bump – a hurdle, if you will – that feels to me like a mountain.
And I don’t usually feel like that. That day, however, I did. I felt vulnerable and like I would break. I felt like I had to hold it together for my boy, but when he was out of my sight, the walls came shattering down. There was no protection; just me having to face the thing I hate to face the most – myself and my emotions.
We went to therapy and the cries continued intermittently, though the therapeutic listening made him ever so quiet. He pulled it together, but was silent. Once we got home, his screams continued. Putting his diaper on was incredibly difficult. Every touch was too much for him. There were kicks, screams, and a sense that my boy was out of control. He didn’t want to be held. He didn’t want me. He wanted me to put him down – to leave him alone. So I did. With a kiss, I placed him in his crib and closed the door behind me.
I could still hear the sobs and the screams. Hearing your child so tortured, so unable to find relief, cuts you to your core.
I realized that everyone I encountered probably felt my air of gloom. This day, I felt like I could feel how much the world bothered my boy. How his body couldn’t make sense of it all…and my mother’s heart began to break.
I see it in his eyes. I feel it in his little frame as it tenses and shakes while I squeeze him with that deep pressure hug that he loves so much, swaying him side-to-side. I’m trying to do something…anything…to help, but it’s all been too much.
It’s been much too much. It’s been the combination of starting special needs preschool and all that goes along with it – including circle time, peers, noise, and all of the things that bother him so. The demands on his body – on his sensory system – have been too much, and today was more than a meltdown. It was his little body losing control.
The tears flowed freely. Both of Jack’s therapists that day got a healthy dose of this mama’s inability to control it. For someone who always tries (note that I didn’t say succeeds) to remain collected, the fact that I cried in front of not one, but two therapists was, in the end, mortifying and made me feel like I had lost control. I couldn’t be strong any longer; the storm had finally weakened my roots and I began to give way. Both women tried to comfort me with their words, but there are some days that you simply feel the enormity of it all and your baby’s pain cuts too deeply.
All other problems were pushed from my mind; all that remained was my boy and the feeling that I was powerless to help him over this hurdle. It was one of those days in which you want to look to the heavens and scream to anyone who will listen, “Why my child? Why any child? Why does he need to suffer so?”
Oh, how I wish there were easy solutions. How I wish that I could take him into a dark, quiet sensory room and live there with him, locking the door behind us, on a swing, with nothing but peanut butter and English muffins to eat! How I wish that time could stand still. If life were only a swing, the one thing that seems to help my baby like nothing else!
I can’t retreat with him. Life doesn’t work that way. We all have to function in this world of ours. Oh, how I wish so many things, but his life will be better for me not allowing him to enter that dark room and close himself off to us all. That’s why we work so hard, that’s why we assembled the team we have, that’s why we spend hours – hours – a week in therapy, that’s why I send him to school – because the world cannot be shut out.
It just can’t. Jack needs the world, whether he realizes and wants it or not. The world also needs Jack. He is here for a reason. I have to believe that. He is here to teach us – to teach me. He’s here so that we all can experience the world through a different set of eyes, one that sees his world far different than we do.
And I’m here to open my eyes and ears to it all. I’m here to absorb as much as I can from the angels in Jack’s life that help him and from the angels in my life who help me. I’m here to keep fighting. I’m here to be his support – his guide – and to ease the journey when I can.
And occasionally, that means confronting my own worst enemy – my own tears.
I know that this – this speed bump – isn’t permanent. We have seen progress – goodness knows we have seen progress! We will have times that are harder than others. We will slip in our journey. In those times, it will feel like we can’t get back up, but we will. Maybe not unassisted, but we’ll do it. We’ll tweak his sensory diet. We’ll give him more input. I will build myself back up and keep fighting, but only after the tears are done flowing.
This speed bump – this mountain – is temporary. I can do this. I must do this.