Month: September 2020

I am not a patient person. Once I’ve made a decision, I’m ready to implement. Immediately. Any delay is seen as an affront to my carefully stacked-for-maximum-efficiency daily routine. While it sometimes takes me for—-(wait for it)—–ever to make a decision, once that’s done, it’s Go Time. No looking back.

And then came Noah. From the day he was born, he gleefully blew apart my carefully-stacked-for-maximum-efficiency daily routine. And he and the Universe laughed, and laughed, and laughed with love as I would scramble, wasting energy and emotion on attempting to rebuild the tattered scraps of routine so that I could have my corner of the world controlled in a tidy little clutter-free box. Never happened. And eventually, I would give up, let go, and ride the wave of his joy and laughter, love and light with him. And it would be OK.

Man, he was so patient with me. Looking back I wish I had been the same, that he and the Universe hadn’t had to work so hard to teach me patience, to breathe and let go of the carefully ordered routine, to let go of the idea that routine means control means all is well with the world. To be patient, to wait and see, to understand that having patience did not mean having to let go of control. He was nothing but patient. Nothing threw him from his center of joy and laughter, love and light. Not a fever of 105 (yep. They went that high), not a day filled with back to back seizures with no relief, not a hospitalization where his treasured cool ranch Doritos were taken away to be replaced by a G-tube and no more eating by mouth. He simply waited to get through whatever was in front of him, as if he knew that whatever came on the other side of what was happening would be better. And it always was.

I, on the other hand, would get stressed, upset, worried; I would clutch the spreadsheet of the day to me, entering data as if there would be some sort of pattern to explain what was going on–seizure times, types, lengths cross referenced with fevers and medication times was my favorite. I’d hawk that data as if it had the answers to everything, wondering if my being 5 minutes late with the medication led to the latest firestorm of seizures which led to the infection that landed us at Mott Hospital for this admission. His neurology team would indulge me, and we’d go over it again and again and again. While he sat, king on the throne of his bed, silently getting his adoring nurses to do his bidding with a soft touch of the hand, a fist bump and a sweet, sweet smile.

He’d give me a Look. The one that said, “Mom. Settle down. It happened. No one made it happen, and now we are here, hanging out, being taken care of, and they will fix it. So come get on this bed with me and watch Despicable Me 2. Give up your spreadsheet and put it in someone else’s hands”. He, of course, meant the Universe, and I, of course, interpreted it as the doctors. And we’d wait, him with patience, me not so much, while he got through it and made it to the other side. He always did, and it was better. I can look back now and see that–the times we spent in the hospital were times I could put down the spreadsheet and the carefully ordered routine and get some rest. He was in expert hands, they took such loving care of him, and of me, and they made it better.

Looking back, I can see the Universe entwined throughout our lives. If I look closely enough, and if you are Universally inclined, we can see that these times when I had to give up the spreadsheet and put it into someone else’s hands were lessons. Lessons to teach that it is OK to stop, breathe, and be patient. Not everything is to be controlled on a multi-column spreadsheet. That, when the daily routine gets overwhelming and overlapping and I feel like I can’t get everything done, I should stop, breathe, and take one task at a time. And most importantly, when I am working through something that isn’t going my way, or isn’t what I perceive it should be, to just wait. If I keep moving forward with his joy and laughter, love and light, I will get to the other side. And it will be better.

I know Noah is in the other side, whatever that may be, and it is better. And that he is still working with the Universe, for sure. I know this because whenever I get that sick feeling in my stomach and tight feeling in my throat–the one that I get when my routine isn’t working, my schedule is so full I know I can’t get through everything, or something isn’t fitting into the picture I have of it, I get Universally Throat Punched. And Punched again, and again until I realize that I need to stop, breathe, and put it in the Universe’s hands. And it will get better.

Memories are funny things. Sometimes, most of the time, they live quietly in the back of my mind and in the bottom of my heart, almost like they are dormant. They feel like pictures-flat and two dimensional, with no depth or feeling. But sometimes, sometimes, they are so much more.

To understand the more, you need to know that rainy, chilly, post-work (and school) Thursday evenings in the Fall were our absolute favorite evening of the week. On Thursday nights there were no after-school therapies to rush to, no post-work meetings to rush from, no homework for him or me and nothing but Friday standing between us and the weekend. The fall weather was our favorite, not too hot, not too cold, and Episucky tended to be gentler to him. We’d pick up a pepperoni pizza on the way home, change into our comfy sweats and do nothing but eat pizza and watch a movie on the couch. (those of you who knew him can probably name what we watched, for it was one of the same five, over and over, and over…..)

Those nights felt magical; we forgot about the stress of therapy, of homework, of actual work, chores, bills, medical issues, fears, worries, and all the things that invaded the rest of the week. Having that Thursday night break made our weekend seem brighter and our weeks feel shorter. I cherished them, and I’m pretty sure he loved them too. That memory lived in the pile of picture memories until tonight. It was in the stack, sitting dormant, waiting for something to trigger it.

At the barn tonight, one of my people asked a question about dragonflies, and I got to share a little bit about what they mean to me and about who Noah was. And then, when I took my horse outside, and I was thinking about that, the weather conditions–chilly, rainy, Thursday evening with the scents of Fall in the air–triggered those picture memories to rise up and become a three-dimensional visceral explosion of feeling. It’s amazing when that happens; it fills my heart until it almost bursts out of my chest. I could actually feel him curled up next to me, with the dog at our feet, and hear our voices singing along to “We’re All In This Together”. Did it make me grieve? Yes. Did I cry just a little, standing in the rain watching my horse eat hay in the pasture so no one there would notice, and if they did I could say I got rain in my eye? Of course. (hello, it’s me. There’s no crying in front of people) But that little bit of sorrow is a fair price to pay for the full feeling in my heart. For the reliving of a cherished bit of time. For the lightness in my soul that reminds me to get brave, get up and get on with it. For the echo of the joy and laughter, love and light that he brought into this world that is now mine to share with others.

So, I say all that to say this. Please, ask. Ask me about him, share your memories of him, don’t forget to talk about him to others. You might be scared that you will get a little bit sad. You might be a little bit uncomfortable or worried that it will make me sad. Ask anyway. Share anyway. Talk about him anyway. And when you do, you might feel a little bit sad or uncomfortable, or worried, but the end result is exactly what he would want it to be. Worth it.