Lost: One Identity. If Found, Please Call . . .

Today is the second anniversary of the day I met my boyfriend. At my age, the idea of a “boyfriend” is a little ridiculous, but nobody has come up with a term I like better, so . . .  Next weekend is the fifteenth anniversary of the day I met my ex-husband; this juxtaposition of events has caused  some rumination.  So, in the spirit of Mama Mac’s post this week, I’m doing a “don’t make the same mistakes I made” post.

Mountain Mama told me something that struck me as interesting this week. She is fascinated by my “other life”  — besides the one as a special needs mama, of course. You see, I’m a real live actor (the unions do not distinguish between male and female actors), a member of Actors’ Equity Association, the stage actors union, for the past 25 years. And my incredibly awesome boyfriend, despite his IT management day job, is a very talented and prolific painter. He also has a 21-year-old wheelchair-bound daughter with cerebral palsy. Mountain Mama marveled at how I’ve managed to keep the things that make me “me,” even while parenting kids with special needs.

 An example of the boyfriend’s work.

Copyright©2009 Nick Savides. All rights reserved. Reproduction of artwork or these pages is prohibited without prior written permission of Nick Savides.

 I loved the sentiment, but the truth is that I haven’t managed it.  Not entirely.

I recently did a play reading at Hunter College  for a friend who is doing a graduate program in play writing with award-winning playwright Tina Howe. It was the first time I had set foot on a stage since 2004. It felt like coming home. The theater was exactly the kind of quirky black box that thrills my heart. The character I was doing was tricky, hard to do properly without verging on caricature, and I relished the opportunity. When the reading was over, I was approached by a tall, distinguished couple in white linen, who exclaimed, “This was the nun!” (Yes, that’s right; I played a nun, Sr. Mary Jude.) The man told me that he loved my work and wished he could study with me. He said that my character – despite her reputation for “meanness” – was deeply forgiving and that could only have been so convincing because it was a part of me. The couple were Tina Howe and her husband, Norman Levy. He paid me what may have been the nicest compliment I’ve ever received as an actor.

I also happen to be a very talented computer programmer, but it’s been 14 years since I was paid to do that. I need a job now, and it’s positively galling to have to convince people that I am still the same person who got 800s on the math and logic sections of the GRE. I recently taught myself C# and made a working version of the 80s video game classic, Space Invaders.

So, yeah, the parts of me that make me “me” are still there, and in good working condition, but they are well and truly out of practice. I am slowly going about the business of picking up the pieces of me that got left behind when the going got tough.

Until a few years ago, I was married to a man I loved and considered the soulmate I would live with for the rest of my life. He was making a lot of money, but he was spending most of his time and energy at work, while I was trying to compensate with the kids at home. That might have worked if both of us really saw it as a partnership: that each was doing what the other couldn’t for the health of the family as a whole. Unfortunately, he resented the fact that I spent almost all my time at home, and I resented the fact that he spent almost all his time at work. Instead of discussing this openly and figuring out a solution that could work for both of us, he let his resentment grow to the point where he stopped talking to me about anything important. He stopped listening to me, too, because all I talked about were ways to help our son overcome apraxia, and our daughter conquer ADHD so their lives could be as full as possible. He went from thinking, “I can’t wait to see what she does next,” to not being the least bit interested in seeing what I did next. I went from “fascinating” to “boring” in a few short years.

Possibly the most galling aspect of it all was that we had already been through so much together. We had a baby who died when he was two days old from a freak strep A infection. Both of us blamed ourselves — as is almost universal when a child dies — but he couldn’t let go of the guilt. (I honestly think sometimes people hold onto the “woulda, coulda, shouldas” because it feels like doing something in a situation where there really is nothing to do.)  After about a year and a half, he got so depressed he was suicidal. He asked me for help then, and I told him to go see my old therapist. I was pretty sure he could help. Well, he did. In a few months, he was completely turned around.

My son’s grave

Unfortunately, soon after that I had a devastating miscarriage – all over California. (I was visiting a friend whose baby had been stillborn. Yep, that sort of irony is a hallmark of my life.) It seemed that my last possible chance of having another child had blown up in my face. I went back to the therapist, too, and got help to deal with all the pent-up pain. That spring we went to Zion and Bryce Canyon National Parks and, for the first time in a long time, felt like just a “family on vacation” rather than a “grieving family on vacation.”  That fall we gave it one last shot, using our one insurance-covered IVF cycle the month before the coverage ran out. Our son, Bryce (that’s not his real name, but it was a top contender, along with Zion) was born nine months later.

Bryce had undiagnosed apraxia, and from the time he was 19 months old, there was a whirlwind of evaluations, therapy, and biomedical supplements. In the meantime, I also found things that might help our daughter who was having a hard time with ADHD. My husband found a 25-year-old actress who reminded him of me. One who had no pesky distractions like kids, let alone kids with special needs, to get in the way of her determination to succeed. Of course, the relationship didn’t last, but it did manage to destroy our marriage.

Since that time my ex and I have both done a lot of soul searching. He came to me and apologized for the way it all went down. He realized that, even though he couldn’t see it at the time, there were so many other ways we could have done things if we’d only managed to communicate better along the way. Both of us were making assumptions about what the other was thinking that were monumentally incorrect. And probably my biggest mistake was in not making sure I did some of the things that brought me unadulterated joy — the things that made me “me.” I had let my life get seriously out of balance out of fear of rocking the boat. And the result? The boat capsized, nearly drowning all aboard.

So now, as a single special-needs mom in a terrific relationship with a fabulous well-balanced special-needs dad, I am determined not to make the same mistakes. I must claim time and energy to feed my soul in ways that it cries out for. And I have to do what I can to nurture the wonderful things that make him “him” as well.

What about you? Have you lost parts of what make you “you?” What about your partner?  What can you do to reclaim them – or help your partner reclaim them — before it’s too late?

~ Professor

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16 Responses to Lost: One Identity. If Found, Please Call . . .

  1. Julie says:

    I LOVE this, but I have to admit, I am really conflicted. I think it is so important to keep yourself on a front burner. At the same time, this kind of discussion is EXTREMELY painful to me. I have two with special needs, one with Autism-Down Syndrome and the other anxiety, sensory, and possible OCD tendencies. I am almost completely non-stop ALL day, and when my littlest one goes to sleep, she only sleeps 8-8.5 hours a night. So every night I have to choose between getting a full night’s rest or winding down and relaxing for an hour or so. Then when I wake up, it’s immediately non-stop again (and that doesn’t count the Masgutova therapies and RDI that I’m “supposed” to be doing….I haven’t done it yet, so I stopped the consultations because I haven’t done my old homework, let alone new stuff) taking care of just basic needs, getting the kids fed, diapers changed, meds in. Our caregiver is now unable to come in anymore, so I have had no respite aside from the two days hubby took off work so I could attend the Down Syndrome portion of A1 and the Think Tank the next day. For months we have been searching for a sitter just so we can get out sometimes, but nothing’s panning out….they never return calls or end up reneging on their “yes, I’d love to do this.” So not to sound like a whiner, but the Native beadwork I used to do can’t get done. When I try to bellydance or sing in the kitchen while I’m prepping food, my littlest tantrums (the non-autistic one) about it. It’s hard. Hubby isn’t able to cope with much time alone with the girls as he is exhausted too. And family doesn’t help out. So this is the dilemma. I SEE how important it is to care for yourself and feed your soul, but it seems like for a lot of moms I know, they want it but don’t have the resources to do it. If I get a sitter, I can at least do some beadwork or have coffee with a friend. But right now, it’s survival mode.

  2. Shiri says:

    Thanks for sharing with us and being so open about your life! I am just starting to confront this realization myself. AO was the first time I had ever left my children for more than 5 hours, and for me leaving for 4 days was a huge step. I am not yet at the point where I can completely go back to what made me “me” and made me happy, but I’m starting to glimpse bits of it. It has been scary and it has been amazing at the same time. For so long I felt selfish, or that I was wasting precious recovery time, if I focused on my needs. Now I know that the more I make myself happy, the more energy and clarity I have for recovering my kid. And being a happier, calmer mommy has brought me so much closer to my son, and him more receptive to open up to me 🙂

    • Professor says:


      It sounds like you’re on the right track! You might want to look into the writings of Barry Neil Kaufman for more clarification on why YOUR happiness is so important. I have a feeling it might be just what you need to hear right now. Good luck!

  3. Maggie Mae says:

    Prof, I learned so much about you in this post…things I never knew. It’s too painful right now to look directly at who I’ve lost along the way-only being 2 years in this journey and still in the ‘raising little kids’ stage of my life. But while there, I am still trying to maintain the hobbies and interests. Even if I can only squeeze them in between tending to the kids. God bless my husband-he gives me encouragement to pursue the things I love. If he didn’t-we could easily suffer the same fate as you and your husband. Your ‘boyfriends’ artwork is beautiful by the way… Thank you for sharing yourself with us. Maggie…

    • Professor says:

      I remember that phase well, Maggie. And I remember telling myself, “It’s only temporary.” But the painful thing is that anything that becomes habit becomes hard to break out of. So whatever little things you can do to feed your spirit along the way will become VERY important.

  4. Ana Maria Abba says:

    Thank you for sharing your story. I am happy that you found someone new in your life and you have a second chance to do it right 🙂

    Taking this one to heart.

  5. Wendy Hayden says:

    Blessed Irony, I met my husband on Valentine’s Day, 2 years to the day that my ex-husband left me for a belly dancer. He left 2 months after our second planned child was born. I am glad your ex apologized for how he treated you, mine never did. But my new husband is the love of my life and loves my special needs son passionately and supports me in every step I take to get him better.

  6. Kerri says:

    I love a happy ending…congratulations to you all. Best wishes for the future. It is good for us to be happy and enjoy life. And sometimes it is hard to do or hard to find a way to do.
    TMR ROCK!!!

    • Professor says:

      Thanks, Kerri, but I think there’s a danger in thinking of it as the “ending.” It’s so very easy to revert to old habits. It will take a certain amount of vigilance and courage to make sure it doesn’t happen again.

  7. Guilded Thinker says:

    Professor, you nailed it. Again. I realized this very thing at AO last month. I came home with a determination to take ME back. My husband and I have both allowed our hobbies and passions to be sidelined. In some ways, it needed to happen. Some things need to be left by the wayside. But we both realized that we have to be individuals, we have to have interests outside of the kids if we are going to maintain our sanity and grow. The kids will benefit, too.
    I grew up in a household where my mom’s entire world revolved around us kids, to the exclusion of all else. She had no friends because she believed that married women should not have friends outside of their husband and maybe close family. She believed this. My dad would have loved to have maintained some sort of social life, but she refused. She had no hobbies. So, when we kids started growing up, as kids do, she was lost.
    I don’t want to be that person. I love my mom, but I feel she was mistaken. My husband has friends. I have friends, most of which live in my computer, but still friends. We have even managed to find a couple or two that we both like to hang out with. Now we are making an effort to set aside our Mommy and Papa roles occasionally to be a slightly more mature version of who we were when we married.
    Thank you for writing this. I think it’s a trap all parents, but especially parents of special needs kids fall into. Yes, our kids are our top priority. But we HAVE to make our relationship a top priority. For us. And for the kids.

    • SavageTMR says:

      My mom was the same way too, no friends or outside interests, and she too is now lost. It’s so hard to squeeze in that time of just being “you” but we have to do it.

    • Professor says:

      I agree, Guilded, it IS a trap that all parents may face someday. I was pretty shocked to find myself where I was. I didn’t want to have a “traditional” marriage, and there I was playing a very traditional role.

  8. Sugah says:

    I love you, Prof. Thank you so so so much for being transparent for the benefit of others. I will ponder your questions as I make my way through life in the coming days…..

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