Posts tagged ‘special needs’

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

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

Easy like Sunday morning

When I read through the drafts of posts many years ago that were never published, it’s like reading letters to my future self. I am amazed at how much things have changed and how much they’ve stayed the same. I still question myself, I question my parenting – I question everything. But it’s all in a more forgiving, empathetic way than it used to be.

While I am feeling calmer, easier, and happier these days, I continue to see Therapist NC in order to practice for the storms that are sure to come. He gave me an assignment to write a list of my “Signs of Decompensation” so that I would have a contract of sorts with myself to notice when things get bad and then call myself on it. (Never mind that the word “decompensation” is so darn close to “decomposition” that it goes all sorts of odd places in my head, and I end up down a rabbit hole of weird.) Ultimately, I had a harder time than I thought I would writing that list, and I left all kinds of things off it.

Then I found this in my drafts from many years ago…I talk a good talk about how calm I am in the face of the storm that is our life. One of these days, someone is going to figure out I’m faking it all, posing as a serene parent of a less than serene child. As we try to figure out how to deal with challenge number four zillion and two, I wonder if it will ever be less complicated. Our “normal” seems to be what sometimes feels like emergency management 101. Often it seems as though we are living crisis to crisis, and it’s impossible to keep perspective on things…

Whelp. First of all, no, it won’t be less complicated, past self, but nice try there. And you gave up talking the good talk long ago and just kind of fell apart, if I’m being frank. Faking it? Absoflippinglutely. If no one else figured out that you were anything but serene, your body and mind sure did. Perspective? Don’t even go there. You’ve graduated from emergency management 101 to emergency management 201, but still, there you are.

And there it is. My list. All in one little paragraph from many years ago.

What’s the difference now? I simply hope, with my whole self, that I have learned the skills to weather the storm, however it comes, however it hits. And that enough people have seen my “list” so that even if I don’t recognize my own decompensation, someone else will.

February 25, 2019 at 7:31 pm 2 comments

Motherly Love

Until last spring when I accepted a job running a small environmental education non-profit, I was teaching anthropology at the local community college. I loved the job, and I can say that I was loved by my students. I went above and beyond to help students who needed it, allowed all voices to be heard, and met students where they were. My philosophy of teaching was not to tell the students what to think, but to teach in a way that made them think, wherever that led them.

I often wondered why I found relationships with students – which most definitely took on a motherly tone – so easy and rewarding compared to my relationship with C, which was difficult and frustrating. Clearly, I could distance myself from students in a way I couldn’t with C because he is my kid, and mother him I must, even in the darkest of days. I knew this in my head, but in my heart it hurt that I couldn’t enjoy C in the same way I could my students.

But maybe, I have since realized, that is not the point. Mothering, I suppose, is doing what needs to be done for your kiddo, whatever that may be. Much like my teaching philosophy, I think I just need to meet C wherever he is, give him what he needs from me, and not worry about what I think I need from him. Mothering C has never been typical in any way, and perhaps I should stop wanting that from him.

A group of students found their way into my life and filled that need for me. In that way, they have given me far more than I ever gave them. Last week, while a bunch of them were over for dinner, I was aglow in the noise and joy in the house. I found myself so ridiculously grateful that these kids were here, letting me feed them, sharing stories, laughing, playing games, and having a good time. Frankly, letting me mother them in a way I don’t really get to do with C. Giving me a glimpse into something different, and not with regret, but thankfulness that with these students, I can be the kind of mother C doesn’t let me be, doesn’t want me to be, and maybe doesn’t really need me to be.

December 17, 2018 at 4:10 pm 2 comments

Woke

I read the message of a dear childhood friend with surprise. She talked about the impact of the various health crises of her special needs child on her other children, and how she and her husband had not really tackled that impact well in the midst of everything going on. She is kind of a pillar of amazing-ness to me; she has handled their child’s medical issues with a strength and grace I strive to emulate.

I quickly responded in support that we are all doing our best in any given moment, and I believe that of her completely. I then gently tried to extend that sentiment to myself to see how it felt. I found myself believing it, maybe for the first time ever.

I think I’ve spent 17 years judging – and often judging harshly – myself and how I have handled things with C. I am a fixer at heart, a researcher by trade, and I’m always convinced there is an answer just around the corner. I keep searching for it, because I know if I find it everything will be better.

But I give. I quit. I’m done. No more of that. Whether it took distance from C to realize it, or if I am just waking up, I don’t know. It brings me to tears to think about it – holy cow, I have been hard on myself. From day one, if I’m honest. Not good enough, not doing enough, not doing the right thing, not giving enough, not loving enough. Yet the reality is I have done everything, given everything, and loved so hard it sort of broke me.

I am always doing my best. And I can always do better. Therapist NC wrote this statement on a whiteboard at our very first meeting with him. How I hated that sentiment – and many others – during those early days of therapy. I couldn’t live with dichotomies like that one. I thought it excused things. Gave reasons for C to be an ass and then say he was doing his best in the very next breath (which he did more than once). But perhaps what it really did was bring to light my own deeply-held belief that I was never, ever at my best. Doing better was something I should be doing more of, even though I felt like I was constantly working at it. I had the second part of that therapy statement down, perhaps too much so.

It’s exhausting living with the belief you are never good enough. I am now trying to give myself a little bit of a pass on the “I can always do better” part. Even though I’m not doing exactly as instructed by Therapist Saying #1, I think it’s an okay way for me to work it. Putting down that heavy weight has been a great relief. And in this week of Thanksgiving, I find myself grateful to have finally reached this point of believing I am doing – and have done – my best.

November 18, 2018 at 3:36 pm 2 comments

Unpacking

I wandered into my appointment with my therapist this week without a whole lot on my mind, really, except ongoing pain around which life seems to revolve right now. What came out of my mouth, however, were several revelations I’m not sure I even recognized for what they were until I spoke them aloud. Whether a high pain level lowers my internal filter or makes me care less what anyone thinks, I’m not sure, but it does seem to be an effective conduit for getting things out of my head and into the universe. And somewhat surprisingly, lightning bolts didn’t strike me down immediately for saying these things. Go figure.

The worst of the worst? I’m fairly ambivalent about seeing C when we visit him over Thanksgiving. I haven’t seen him since he left here in August. And he left after a rather violent episode that left us both hurting. Hubs was out of town, C went for pills I inadvertently left out, and the rest is history that will haunt me for years to come. Truth be told, I don’t know that I have actually forgiven him for that incident which, if I’m honest, is probably more at the root of my ambivalence than anything else.

When we talk with C on the phone, he sounds great. Things come out of his mouth that astound me. He seems healthy, well adjusted, and happy. But I don’t really trust any of it fully. It all feels artificial. We won’t know how he’s truly doing until he comes home, and even a visit won’t tell us much. Only when we are all back in our daily routine will we be able to tell if any of these newfound skills will actually stick, and I admit to not having a whole lot of faith in this process. Not really because of C, his treatment center, or Hubs and me. It’s more about the best predictor of the future being the past. Habits, dynamics, behaviors…they are all difficult to change.

So I wait. I continue to work on my sense of inner calm and peace no matter what is going on around me, because I know that’s really all I can do. Staying in the moment and all of that. I am a lot better at that particular skill than I was a year ago. Still, when someone is throwing things, body slamming closed doors, going for knives and pills, and screaming hateful things, it is fairly difficult to be very Zen. I am trying to let those incidents fade from my memory and recognize that a seven month break is pretty significant. A lot of change can happen in this time C is away.

Yet that voice in my head and heart continues. “What if?” I just keep trying to counter the negative answers with, “What if it’s great?” I am reminded of my own Nana, who had unrelenting faith in all of her children and grandchildren. Cousin X could have murdered someone and she would chalk it up to a phase that would pass. So I’m left wondering. What if C grows up, gains insight, recognizes his own role in life, and chooses to jump down on the right side of the fence? Now wouldn’t *that* be something?

November 11, 2018 at 4:17 pm 2 comments

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

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