The Fear of It~

Piglet?" said Pooh.

"Yes Pooh?" said Piglet.

"Do you ever have days when everything feels... Not Very Okay At All? And sometimes you don't even know why you feel Not Very Okay At All, you just know that you do."

Piglet nodded his head sagely. "Oh yes," said Piglet. "I definitely have those days."

"Really?" said Pooh in surprise. "I would never have thought that. You always seem so happy and like you have got everything in life all sorted out."

"Ah," said Piglet. "Well here's the thing. There are two things that you need to know, Pooh. The first thing is that even those pigs, and bears, and people, who seem to have got everything in life all sorted out... they probably haven't. Actually, everyone has days when they feel Not Very Okay At All. Some people are just better at hiding it than others.

"And the second thing you need to know... is that it's okay to feel Not Very Okay At All. It can be quite normal, in fact. And all you need to do, on those days when you feel Not Very Okay At All, is come and find me, and tell me. Don't ever feel like you have to hide the fact you're feeling Not Very Okay At All. Always come and tell me. Because I will always be there."

                                 

Do you ever wake up in the fear of things, in the worry that things will not change or really be much better? Well, I woke up that way this morning. This morning I woke up feeling worried that I may never figure out exactly how to help my son. I woke up worried and broken hearted at the thought that no matter what I do, my son’s anxiety and anger may never change, not really anyway. 

I cannot tell you how defeating that thought or realization is. I cannot adequately express the sadness and heartbreak and isolation I feel so often.  Most people don’t really know this as I’m very good at not revealing that side of my life especially in public or in class. I also feel that it’s my duty to put my stuff aside when I go in to teach or when I’m interacting with others so that my energy or trouble does not affect them. 

All I can tell you is that parenting a child with hidden disabilities like OCD, anxiety, autism, sensory issues and the like is a really hard thing and most people don’t really understand the difficulty and weight of such a thing. And often, it feels like those who have typical children, or who do not have children at all, really have no idea how exhausting and hard and lonely it is. And none of us entering the realm of parenting goes into parenting expecting or ready for such challenges. 

Today, and really the last couple of days, have been hard days because it seems Liam is extra volatile since we have weaned him off the anti-anxiety medication. The last few days have been the kind of days where I have had to force myself to get out of bed, take my morning walk with the dog, make breakfast, take a shower and get ready for whatever it is we might do. And you know what? I really just want to stay in bed with the covers over my head, with the blinds and my eyes closed. But I don’t get that luxury or that kind of a break. No parent really does. You have to get up and show up and try agin. Parents who care are warriors of the strongest kind. 

Last night I went to bed sad. As the tears came, I sat and wrote so that I could get some of the emotions out and down on paper instead of letting them sit on my heart and crowd my mind. I got upset after Liam got mad at me for asking him to brush his teeth. He pushed my hand away after I offered him his toothbrush, he refused to brush, and then he yelled at me to get out and closed his door on me. It totally bummed me out that we ended the night that way. 

It’s frustrating because it’s usually really small things that can send him over the edge. Earlier in the day yesterday, Liam melted down over the texture of the noodles he made. The meltdown was not just because the texture was so unpleasant to him but rather it had to do with his disappointment over the fact that he could not eat the noodles and he really, really wanted to eat the noodles.I can sympathize with his disappointment! 

Today, he got angry because I did not have his favorite non-dairy mayo for his veggie burger. He preceded to get upset, slam some doors and refused to eat. I stayed calm. I got creative, and I mixed cholula and the vegan mayo I had, and all was well again. 

Anyway, it’s little things that make my kid crumble and he takes his rage and anger and frustration out on me or Jason or Lila.  And it’s really hard to always remain calm. In fact, it seems impossible sometimes. I will say that I have gotten better at remaining calm for longer and longer stretches of time. And I’m certain one day I will be a master at this. Currently, however, I’m a student. 

So needless to say, I spent much of the morning crying because I have been in the fear of things, in the fear of it all. I fear my son will always struggle and will live his life this way. I fear that no Shaman, or diet change, or amount of love will make a damn bit of difference because the person who really has to change is Liam. He has to want to make his own life better, and he has to learn how to mange his anxiety and big emotions in a more productive way versus a destructive way. And he needs help with that. And we need help parenting him in a way that works. 

I just want to find the right tribe of people who can help him because as hard as it is for me to acknowledge and admit, I cannot save him. And yet I do not have all the skills necessary to help him.  I cannot tell you how hard that is for me to even write and share. It’s hard to write because it’s hard to share such things with others- less I look like a failure at parenting and life. What we really need are other people who can connect with Liam and help him and that he can learn from.

And the fact that I have to acknowledge that I cannot save my son from suffering or hurt or difficulty in life, even at his young age, has been a hard thing for me. Even though I know this, I keep finding myself trying to help, and trying to figure things out. Maybe this is my job as a mom, and maybe I am doing the right thing, but sometimes I just don’t know?! I’m sure there is some sort of balanced approach and way in there somewhere?

Maybe I’m just in the valley of the hurt right now. Maybe as I rest and stay here in the discomfort of it all, I will again be able to gather my energy and strength for the climb out. I don’t know. Then again, maybe this is it. And all I can do is keep getting up and trying and moving in the direction that feels right, right now. Maybe all I can do is continue to plant seeds for Liam to take in and tend to in the hopes that something will take root and grow eventually. Maybe all I can do is have faith we will find our way through this all. 

It’s such a confusing thing raising kids with sensory issues and anxiety issues that seem to have come out of nowhere. It’s so hard and confusing because we also have these really beautiful, normal days and moments that make me scratch my head and think that we are normal and all the other days are just days, and there is nothing to be worried about. What am I so worried about?! 

The good days give me something to be grateful for but also leave me feeling like I must be crazy to think anything is wrong. And then a hard day hits hard and I feel confused and disoriented again. The fear and sadness creep in and the hope in my heart drops a little.

I spend so much time trying to learn as much as I can from other families and parents out there who are going through a similar parenting journey. And you would not believe how many families out there have kids that are struggling with sensory issues, autism, anxiety, depression, aspergers, and in all combinations of the above because it’s usually not just one thing, it’s a combination of things. It’s mind blowing really. 

And then I’m left with the question: Why are so many kids struggling with such hard things at such a young age? Is it chemicals in the food, heavy metal toxicity, trauma at birth, the energetic state of the world, too much screen time, stress, vaccines, pollution in the environment??? It seems to me to be little bit of everything. There is a lot to consider and change, and way to much to be aware of. And it’s exhausting.

And oddly enough, this morning I was thinking back to my early 20’s when I weighed in at 85 pounds. I remembered what a mess of worry and stress I was. I wasn’t trying to purposely starve myself. It’s just that I was so rattled with stress and anxiety (though I did not know what anxiety was at the time) that I literally could not eat. My stomach was in so much pain because I was so incredibly stressed.

During this time in my life, I was in love with a sweet fellow (whom I will call B) who ended up getting addicted to heroine. We lived together in a little apartment with my dear dog Mingus. At the time, I was working at a place called Bread and Circus, which was really just Whole Foods with a unique name. Anyway, I worked in the floral department with this tough Brazilian woman named Darcelina. 

Everyday, I would will and force myself to get to work and the day seemed to go on forever because all I could think about was how I needed to get home before something happened to my boyfriend. I worried everyday that I would arrive home at our apartment and find my boyfriend dead of an overdose. 

One morning during this very difficult period in my life, I found out I was pregnant. It was too much. I struggled with what to do. My two dear friends at the time had just had their babies and I was present for both of their births. And I loved my boyfriend very much. So love was not the problem for me, but it was for him. But then again, there were even bigger problems to deal with, so none of it was good. 

When I shared my confusion with my partner about what to do and told him that terminating the pregnancy was not such an easy choice, he made it very clear I would be alone in my choice. He even said that if I decided to go forward with having that baby that he would have nothing to do with either of us ever again. That statement and his anger at me for even considering keeping that baby made it very clear that he did not love me the same way I loved him. And this was by far the hardest, most painful wake up call.  And even though it was hard, it really was the wake up call I needed. 

For the next few days or week, I struggled with what to do. It didn’t make it any easier when I had to reveal to my co-workers what was really going on in my life as I was obviously a serious mess. 

When Darcelina found out I was considering an abortion, she was so mad at me. It was my other co-worker who shared with me that just before Darcelina had come to America, both her son and husband had died in a car accident. It was then that I understood why she could not understand why I was considering an abortion, but she also did not know the whole story.

So as hard as it was for me to do so, I decided to terminate the pregnancy because I did not think it was fair to bring a child into such a mess. And I did not feel I could parent alone. After the loss of that child and the heartbreak I suffered, I came to the realization that I could not save my partner from his addiction. I could only save myself. And I knew that’s what I had to do. 

It wasn’t long after that I moved away to Okinawa, Japan. And it was by far the best choice I’d made in a long time. My time in Okinawa, surrounded by the wild sea was the most healing thing for me. And that place has my love to this day.

So the reason I am sharing all this is because that was another time in my life where I thought that maybe through sheer will and effort and a whole lot of love, I could help someone I loved up and out of the dark, even if I was in the depths with them. 

B told me I helped save his life, but I don’t really believe it was me. I believe it was B who saved his own life. And maybe the love and presence I offered helped, but he made the choice to receive help and change his own life. And I chose to do the same because let’s face it, I was just as broken too. 

Anyway, I don’t know what this all means, but I sense a correlation here. I recognize my desire to find a better way, and maybe that’s a great thing and it helps, but it’s not everything. It’s not everything because the truth is that at some point we will all suffer and find ourselves in places we did not want to be, and each and everyone of us will have to find our own way through and out. And maybe that’s what will have to happen for my son. Maybe there is nothing I can do to take away his anxiety or show him how much I love him or show him how loved he is. Maybe he has to understand that for himself by loving himself and making the choice to do what serves and supports his own growth rather than stunts it? I hope one day he will realize he is capable and in charge of himself and his life?

And maybe all Jason and I can do is continue to do the best we can day by day. On the good days,  the days when we get it right, we celebrate. On the days when we get it wrong, we show ourselves and each other compassion, give each other some grace, and we try again. 

In the meantime, I will continue to make space for us all to breathe and make mistakes and love in the messy way that we seem to do. And I will do what I can to bolster my own faith and remember that Liam’s journey is Liam’s journey. And all I can do is hope that he knows that he is not alone, that we are here,  and in the words of Cheryl Strayed, “he’s okay with us for now”.