Archive for October, 2018

Un-simple Minds

Since we arrived back on the correct (for us) side of the Mississippi five years ago, life has been interesting to say the least. C developed two frightening health conditions almost on top of each other. It’s hard to say which one scared me more.

First, pancreatic insufficiency, which means the body can’t absorb fat, and causes the “failure to thrive” diagnosis that follows C around. There’s five diseases that cause this in children: three are fatal in the first year, and the other two are life altering and cause death far too young. C tested negative for both, and his docs were perplexed. They started him on $3,000 per month digestive enzymes that insurance didn’t cover, of course. We were fortunate that the social worker at the local children’s hospital slipped us samples under the table for the better part of two years. Bless her. C gained weight, grew an astonishing amount, and seemed far healthier than he ever had.

Then he started vomiting. Constantly. He would have an episode that lasted for a week every three weeks on the nose, and he would heave 40 times a day – he would somehow often keep food down but just retch. It was bizarre. We were at the ER so many times the docs and nurses started to recognize us, and C was hospitalized several times in an effort to diagnose him. “Cyclic Vomiting Syndrome” was where they landed. Yes, it is a thing. No, you don’t want to know about it.

We never received great answers, and in the end, C’s GI doc decided it was all in his head and removed all treating medications for CVS. Unfortunately, this occurred at the end of a seven day hospital stay, and the vomiting continued for over a month after that. Needless to say, C’s psychiatrist quickly put him back on the meds, things calmed down, and we never saw that GI doc again – another in the long list of doctors along C’s path that we have dumped.

It was during this time that I realized life with C was never going to be simple. I’m not sure why it took me 15 years of his existence to come to this conclusion, however. Nothing had been easy thus far, but somehow I think in the far recesses of my mind I thought he would outgrow his autism and all that came along with it. Like we were just play acting with a myriad of diagnoses that would all eventually simply just fade away. It seems silly when I look back on those feelings as I am definitely on the other side of them now. Reality, acceptance, giving in, giving up – call it what you will, but I’m there. Kicking and screaming the whole way, but I have arrived. Better late than never.

October 28, 2018 at 2:27 pm 1 comment

A Pain in My…

This past week, I’ve been struck down – and I mean down – with a severe case of shingles. I’m not even telling you where, but imagine the worst possible place one could experience this most painful of diseases and then light it on fire. Yup.

I have had a lot of time to think. And cry. And overthink. And not think at all because it hurts too much. Yet I landed on one thing: things with C used to be more fun. I remembered, reading through the whole of What We Need, how entertaining he was. How charming. Cute. Funny. I also remember worrying that if we didn’t get his elementary school tantrums under control, teenage C would be scary.

I was right.

I do recognize C’s tantrums now are much like his tantrums then, except on a grander scale and with far more serious consequences. We have listened to mental health practitioners and juvenile justice officers tell us that he needs more help before he turns 18, because everything changes then. Police officers won’t sit and calmly try to talk him off the figurative ledge, they’ll just put him in the back of the car and take him away. And if we aren’t with him when something happens? They won’t know he has autism and mental health issues – they’ll just think he’s being aggressive and violent. My greatest fear, if I’m honest, is that he’ll end up in the “system.” Because at some point, he won’t be here, or we won’t be here, and someone won’t understand.

So C is somewhere – a state away, in fact – getting that help. Or at least we hope so. We won’t really know until he comes home, around the time he turns 18. He will have been gone seven months at that time. He is in a place with other kids with ASD, and he sounds like he is thriving when we speak with him. While I can’t speak for Hubs, sending C away was both the hardest and the easiest decision I have ever made.

What I am still waiting to see is if it was the best decision.


October 21, 2018 at 7:56 pm 6 comments

A Life Worth Living

I stopped writing here mostly because I felt like C’s story was not mine to tell, he was getting older, and he was online. It felt like a violation of his privacy, and I know I run that risk again now. Yet it is not – it should not be – just about him. So much of his story is intertwined with my own, and mine with his. They are impossible to separate, it seems.

However, that is exactly the problem. My problem. In my quest to help C along his path to become a productive and happy adult, I fell into that cliche of a trap that I never thought would happen to me. I lost myself. Or, rather, I lost my identity. I became nothing but wrapped up in all things C, and it dominated my life. I was isolated, lonely, and miserable. My physical health suffered, my mental health suffered, and my marriage suffered. Of those three things, only Hubs didn’t rock the boat by startling me into paying attention. He understood, bless him. My body and mind did not.

First came cancer. Breast cancer, to be exact. I became that statistic that scares most women to their very core. Cancer forced me to focus on myself, something I had not really done since C was born, if I’m honest. I am all the better for it, despite still living in fear of its return. I went from having one friend with cancer to being surrounded by people with cancer, and while that at times makes me very uncomfortable, it also helps challenge my fear of it.

Second came depression, or rather the acknowledgement of it. After nearly a year of C’s therapist repeatedly pulling me aside after family sessions asking if I would like to talk to someone alone, I took the bait and have not looked back. Whether NC is particularly talented or he just landed in my life at the most opportune moment, I will never know for sure, but I take it for the great gift it has been to me.

So now I walk my own path once again. No longer willing to sacrifice every single thing for C, I am still coming to grips with my own judgement about what kind of mother that makes me. At the end of the day, the conclusion at which I must arrive is that it makes me a mother who is alive, in every possible, wonderful, messy way.




October 14, 2018 at 4:12 pm Leave a comment

In the Weeds

It has been so long since I’ve done this I don’t even know if I know how to do it anymore. Many, many years have passed, and the more things have changed, the more they’ve stayed the same. This journey, while less about C and more about me now, revolves around C – still.

With massive health challenges, painful behavioral challenges, moves, new schools, a whole lot of therapy for everyone, and alternate living situations, we have all grown up, myself included. The sheer volume of events since last I visited here would fill a book. And after spending a 5-hour chunk of time last week reading every single last word of What We Need, I came away with one conclusion: I need to keep writing. I need it for me. I need to record our journey. I need to document this life we share. If that doesn’t answer that question I’m always asking – just what it is we need – I don’t know what does.

So once again, I welcome you here. If you go way, way back, you’ll see and read about C at 8, 9, 10 years old. He’s halfway through 17 now. He’s been hospitalized more times than I can count, both for physical and mental health reasons. The police have been called numerous times. Cancer has visited our house. Relatives have died. In short, life has happened. Life has gone on, albeit somewhat painfully. Still, there is light at the end of our tunnel, I know there is. I hope you will join me in my search for it.


October 10, 2018 at 12:08 am 7 comments

It’s all autism, all the time.

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