Mrs. Fix-it

I am undoubtedly harder on myself than I am on anyone else. I am a fixer, and recognizing that I probably can’t fix the situation we’re in with C brings me a lot of discomfort. In my mind, there is some flaw I could have repaired along the way that would have ensured a different outcome than this.

“This,” is a simple word that involves a complex set of issues and solutions. My tolerance level for all things C, surprisingly to me, is very low. I thought I would have recharged while he was gone, but instead I grew used to not living on edge, not feeling like drama was around every corner, and not feeling tense at any given moment. So happy was I, enjoying my own life for the first time in too long to remember, that any threat to that enjoyment brings me down further and faster than I would like.

What Therapist NC told me today is that I need to accept it. All of it. Accept that C is a challenge and always will be. Accept that I’m frazzled and fried and maybe am not capable of having a good relationship with C. Accept that I can’t fix everything. Accept, accept, accept. But don’t go so far into acceptance that it crosses the line into giving up and giving in.

Just where is that line? I admit I don’t really know. I have been badgered by the reality of life with C for so long that while part of me understands I suffer from compassion fatigue, the other part still thinks I can fix (or could have fixed) all of it. On one hand, I moved mountains for this kid, I know I did. I did everything humanly possible to prepare him for this life of his. I did all the things, I know that. On the surface, I can look at it all and know. But what I wonder, deep down, is if in doing all the things, I somehow lost sight of just being C’s Mom, and if that somehow had some effect on where we are now.

And there it is, that self doubt at which I am exceptionally skilled. NC says parents of kids in residential treatment think their kid will either come home totally changed or that their kid is incapable of change. I don’t believe I fall into either camp, really, because I still maintain that I’m the one I expected to change. Whether I changed too much or not at all, I’m not sure, but I know I’m the one I’m most frustrated with. One way or another, I think I expected too much, and mostly of myself.

Today NC middle-named me. Yes, he *actually* middle named me. Right before he told me I am good enough, I have done enough. In perhaps the most therapy-ish moment I’ve ever had with him, he said these words to me. And then he repeated them. And then again. I suppose I needed to hear them. The trick now is to believe them, even way deep down.

April 15, 2019 at 11:29 pm 2 comments

50 for 50

I have never been big on birthdays. Until this one. Tomorrow I will be 50, which feels like a massive milestone. From surviving cancer, to surviving parenthood, I feel like celebrating this as the big deal that it is.

A party is not for me, so I decided to make a list of 50 things I want to do in my 50th year. There’s nothing really huge on there – no Icelandic vacation or hiking the Pacific Crest Trail despite both being things I’d like to do – as ultimately I wanted to make the list achievable in this year.

Surprisingly, I have found the list somewhat difficult to make – figuring out 50 small but important things has not been an easy task. I’ve only come up with 29 thus far, but I keep adding things here and there. Re-learning Rachmaninoff’s Prelude in C# Minor, something I could play when I was 17, is on there. Getting tattoo number four. Mastering a couple of yoga poses that have proved difficult after removing my tumor and lymph nodes also removed my ability to do a lot of things with my arm.

So far? I’ve crossed off four things on the list. Finishing the painting I talked about here a couple of weeks ago, making writing a habit again, playing piano again on a regular basis, and buying a pair of mermaid-scale printed boots have all been completed (I work with kids in the environmental education field…between those boots and the pink streak in my hair, I am *in* with the 5th graders).

Not on the list? Anything having to do with C. Nothing really having to do with Husband (except hopefully he’ll want to do some of those outdoor activities on the list with me). This list is all about me. Having put myself last on the list – or even taking myself off it altogether – for so long, I’m truly learning self-care for maybe the first time in my adult life. Taking up things I love once again – writing, yoga, piano – is an important part of reclaiming my own identity after kind of forgetting my own self for so long. It sounds like the ultimate of cliches, but I truly got lost in the job of making sure the person I brought into the world could survive in it.

Now the focus turns back on me. It is the key to my own survival, if I’m honest. So off I go to tackle number 17 on the list. Wish me well.

April 7, 2019 at 10:50 pm Leave a comment

Tears and Fears

Things have not been All Quiet on the Western Front, truth be told. The adjustment to having C home has been difficult to say the least, and his ability to slip back into old habits has proved exceptional. This I did not really expect.

Adding to the challenge has been my realization that the person I really hoped would change in the last seven months was me. I guess I thought C’s arrival home would bring with it a completely clean slate. Instead of feeling like I’m living with the dog that’s been biting me for years, I hoped the walls were gone and I wouldn’t have to protect myself.

It has not been so.

I have had a harder time with C being home than anyone else in the house, C included. For so long, I sacrificed so much that I often feel I have nothing left to give. The well feels dry. And that results in more detachment than I think is good for a parent-child relationship. Couple that with the sense that I have to guard myself with C in order to survive emotionally, and I’m left with something that feels less than good. There’s no fun there, no joy, no playfulness.

But here’s the thing. After a horrible weekend of many tears and fantasies of escape on my part, I arrived at the difficult conclusion that maybe I just can’t co-exist with C. I went from a 10 on the happy scale to a 2 in the span of a week of him being home. It shocked me how quickly and dramatically that happened. Yes, it’s early days, but I feel like I perhaps don’t know how to be happy if C is in the house. And then the guilt piles on, because let’s face it, what mother feels this way? Apparently this one does, and that leaves me feeling like I’m circling the drain. It’s a vicious cycle.

After a weepy message that resulted in urging from Therapist NC, I dragged my sorry self into therapy yesterday and laid it all out. The pain, the guilt, the frustration. All the dark feelings that make me feel like a monster. It was perhaps the most honest, intense session I have had, and there have been some doozies in the time I’ve been working with him. I figured I had nothing left to lose.

I left there in zombie mode, and that lasted the rest of the day. I felt drained and empty, but surprisingly calm after days of turmoil. I went to bed and slept better than I’ve slept in a week. And what do you know? I woke up this morning feeling better. I wonder if just by talking it out, and almost getting “permission” from him to feel the way I feel, it took some of the power of those feelings away. It’s almost as if by admitting all the horrible things and not being immediately struck down by lightning, I realized that maybe I don’t quite feel the way I think I do.

And that gives me some hope. Some hope that perhaps just by giving voice to all of this I can perhaps move past it. I know my relationship with C will never be easy and straightforward, but maybe – just maybe – it can be better instead of worse or even non-existent. There is a glimmer of peace in my heart and head again, and I welcome it so.

April 4, 2019 at 1:39 am 2 comments

All in a Day

Last night, I sat on our bed in the dark, alone in the house. I listened to the silence and felt the lack of “vibration,” for lack of a better word, in our home. Recognizing that it would be the last time I would experience that for some time, I reveled in the sensory deprivation.

I spent the day yesterday finishing a painting I started five years ago. In a few weeks, I turn 50 years old, and to celebrate I made a list of 50 things I want to do in my 50th year. Finishing this paining was high up on the list. Unlike writing, which I tend to do when something is bothering me, I have to be happy to paint. I figured finishing this painting, which now hangs above our bed, would be a feather in my happy cap. It will forever remind me to find my happiness if I lose it again.

C is home now. He and Hubs arrived home early this afternoon. For whatever reason, I felt weepy all day. My pain levels have been high (probably just as much about the crazy positions I get into when painting as anything else as I paint on the floor), and I’m tired despite sleeping well last night. I think there’s been a whole lot more going on in the background of my head space than I realized. 

But we all made it through the day intact, and for now, that is enough.

March 25, 2019 at 12:49 am 3 comments

All By Myself

Yesterday evening felt like Hubs’ and my last night – not so much alone, but without having a care in the world about what is going on in our house. C will be home a week from today, and to say I am not feeling ready is an understatement.

Out to dinner we went. Apparently, it’s prom somewhere, and there was a huge table of dressed up kids having a great time. I watched them giggle and smile and talk and I was hit with a pang of sadness that brought tears to my eyes. C is nearly 18 years old, yet these moments still take me by surprise when they happen. You would think I’d be used to them by now, as the window of typical closed long before it could open.

I’m not sure what that sadness is about, exactly. I don’t picture C ever sitting in a restaurant with a group of kids before going to prom, but that is hardly a barometer of a life well lived. I think it is more about C having people. No siblings, no cousins, and I can remember every kid that has been his friend. They have been few and far between. He goes to school, goes to work, and comes home. He spends entire weekends seeing no one but us.

For me, isolation has been a sign of depression. For C, isolation probably causes his depression, perhaps without him even realizing it. He simply doesn’t know anything but isolation, really.

Still, I sometimes don’t think C knows who he is unless he has someone to bounce off of. He is so intensely social and desirous of contact, and most of the time, that contact is us. It’s no wonder this past seven months has been such a respite for Hubs and me, and I probably shouldn’t be surprised that my androverted self is anxious at the thought of C’s return. Because really, that’s the core of it: C needs more than we can give him. He needs a life outside of home, and we need a life separated from being his entire circle.

C has been around kids 24/7 for the last seven months. While they all have autism and I can’t expect he’s necessarily picked up any great social skills, I hope that he has experienced the joy of interacting with one’s peers. I hope that he will somehow have recognized the power of companionship and will do whatever it takes to get out there and make some friends, whatever that looks like for him.

 

March 17, 2019 at 11:51 pm 3 comments

If You’re Happy and You Know It

I love to write. I have often thought if I could somehow make a living writing, I would. Teaching linguistics deepened that interest as I found new ways to rejoice in the language humans use. I had an entire lecture centered around the “F” word. I took my classes to cemeteries to study the use of language on gravestones (thanks, Dr. B., for sparking that interest). We debated whether behavior follows language or language follows behavior. All of this brought me great satisfaction.

Words are my happy place.

When I came back to “What We Need” several months ago at the urging of Therapist NC, it was pretty easy to write. Even though at some point in the past I felt as though I’d said everything here I needed to say, NC reminded me that this blog could now be about me more than about C. The words flowed. Then things slowed down a bit and I found myself struggling somewhat. The words did not come as easily as they used to.

Writing is my way of working through things. As my happy returned, I had less of a need to process, I suppose. I find it hard to write when I’m happy, even though words bring me such joy. When I’m happy, I’m out living my life, not processing it. Still, it’s practice, like everything else I’m doing to help stay on this road when C comes home. To remain calm amidst any chaos that may occur. To keep peace in my heart and head no matter what is happening in my home. To somehow walk that fine tightrope line of balance between what I need and what C needs.

It does seem like a tug of war to some extent. I’m reminded of that poem about special needs mothers by Erma Bombeck (excerpt below). It always resonated with me because I’ve never thought of myself as particularly patient and I have equally thought myself selfish. Somehow reading it justified those qualities or lack thereof, and I felt less guilty about not being the perfect mother.

Words have power. So I will continue to write, happy or sad, as I make my way through what is to come.

The Special Mother, by Erma Bombeck

“Give her a disabled child”. The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God. “Could I give a disabled child to a mother who does not know laughter? That would be cruel!”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you.”

God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.”

The angel gasps – “Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally she won’t survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider any step ordinary. When her child says “Momma” for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see… ignorance, cruelty and prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side.”

“And what about her Patron saint?” asks the angel, his pen poised in midair.

God smiles… “A mirror will suffice.”

 

March 10, 2019 at 11:01 pm Leave a comment

Backseat Driver

C gets released in just two short weeks. It’s hard to believe seven months have gone by – on one hand it seems like the blink of an eye, but when I look at everything that we have accomplished in that time it seems to spread out a bit more.

I seem to have attained a more Zen-like level of calm, but as tasks related to C’s return pile up, I see chinks in that armor. I quickly remembered how much work just goes into managing all things C. Today I spent a couple of hours finding an attorney for our application of guardianship, making an appointment with his psychiatrist, setting up an appointment for his evaluation for para-transit, signing up for city bus training, researching how to switch him from Institutional to regular Medicaid, and communicating with his school about re-enrollment.

I’m left wondering how people with less skills and pushiness navigate the system while simultaneously being frustrated at the challenges of navigating said system. It all adds up to one thing: stress. C has been someone else’s responsibility for seven months, during which time I have enjoyed the fact that no one needs me for their survival in this world.

Then I wonder if I’m over-estimating my own importance in C’s life. The fact is, this kiddo has done something I can scarcely imagine; he has navigated residential treatment with nothing short of great success. He has gone from being an only child to having three roommates. He has joined the basketball team. He has gotten straight As in school. He has been selected as Resident Adviser for his wing. He has survived and thrived in an environment that causes most people to shudder when thinking about it.

Perhaps when C comes home he will be more grown up, more responsible, and more ready to take control of his own life. Perhaps that will enable me to step back and watch a bit more, allowing me to continue to cultivate the joy I have found in my freedom to live my own life. Somehow we’ll have to reintegrate into each other’s lives, but I hope that we can do that while maintaining the boundaries I need in order to survive in his world.

Maybe, just maybe, we are both ready to take more of a backseat in each other’s lives.

March 7, 2019 at 12:04 am Leave a comment

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