Thursday, October 23, 2014

The ghost of the child you expected yours to be



The moments always take me by surprise. It happened the other week, when Sabrina and I went to see Alexander & The Horrible, Terrible, No Good Very Bad Day. The movie's pretty funny, and we laughed a lot. At the end, Alexander has a birthday party and his parents wish him a happy twelfth birthday. Suddenly, tears started rolling down my face. Because Max is going to be 12 in a couple of months, and it was one of those moments when I thought, I wonder what he'd be like at 12 if he hadn't had the stroke. As I wrote on Facebook, "It's that total disconnect between loving the kid you have—the Wonderful, Awesome, All Good, Very Great Kid—and wondering about the kid who never was."

Birthdays have a way of bringing out the sadness. Last year, before Max turned 11, I found an old video from his birth, wrestled with the residual grief over what happened to him and accepted that it will probably always be part of me. The trauma I went through when he was born that I occasionally relive is no reflection of my love for him.

Max, he is no trauma. Just the opposite: He brings me a whole lot of happiness. Which is exactly why it throws me when my mind considers a different version of Max. It seems incongruous to love a child so fiercely and still imagine what other child he could have been. Not once have I ever imagined having a different Sabrina.

Also disconcerting: I am so proud of the progress Max has made and what he has achieved. I have learned to not judge him against his peers' development because he is Max, a kid who does things on his own timeline. And yet, I end up comparing him to some apparition of a child he could have been.

One minute, you're fine. And the next, a couple of kids walking home from school cross the street in front of your car and suddenly your brain is spiraling into that place where the what-ifs and the would-have-beens lurk. I'll wonder what Max would be like if he was a kid who could walk home from school with a friend. Or if his speech was clear. Or what activities or sports he might be into if he didn't have cerebral palsy. I have never actually heard that ghost child speak in my head, but I have envisioned him dunking basketballs into the hoop outside a neighbor's house.

It seems like a lot of special needs parents are haunted by these thoughts, as evidenced by the Facebook comments. Maria spoke of watching a niece, the same age as her 9-year-old son with special needs, buy chapter books at a book fair. "I immediately thought of James," she said. "I had picked out a simple Lego leveled reader for him. Once again, I was in my car crying." For some moms, visions of the other children come to them at night: "I will dream Sebastian walks into my room or says 'I love you' with a speaking voice and words he doesn't have," said my friend Kara.

The ghost never lingers long. I feel a little drained once it's gone, but then I get it together. I know the drill. Like the upset that I get when I think back to the NICU, this also has to do with latent grief. A part of me still mourns the child I expected, even as I worship the child that I got. This isn't about Max—it's about me.

Perhaps the passage of time will exorcise that ghost for good...or not. Maybe it will always be one of those special needs parenting things. Maybe having aired this will help. Maybe one day Max will see me having a moment, slap me upside the head and type out on his iPad, "Get over it, Mom!"

What I do know is that coming home, giving your child a hug and feeling the warmth and solidity of his body next to yours is just what you need to return your head and heart to reality.

27 comments:

  1. Just lovely. As a person of faith, I deeply believe that one day EVERYTHING will be put right. And on that day, Max, and my Nick, and everyone will exhibit not only everything wonderful that we see now, but also all the realization of the "what might have beens." I, for one, am looking forward to exhibiting the emotional openness, joy, and deep compassion I see in Nick, that is lacking in me.

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    1. Thank you for that reply, Kevin J. I especially liked your last sentence. That spoke volumes to me ~ grandmother of a wonderful boy with special needs.

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  2. Tess turned 11 in June. It was her first birthday where I didn't want to just spend the whole day crying. I still have those moments you write about but they are not as often or as gut wrenching as they once were and I think it's because I finally realized I wouldn't want that "ghost-child" because EVERYTHING that makes Tess Tess, also involves her disabilities. To change even one thing, one disability, would change the whole of her and I wouldn't want that either because like you with Max, I adore her as she is. Not sure if that makes sense but I hope so! It can be a very emotionally confusing area in a parent who has a child with special needs but I think most, if not all of us, have been there. :)

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    1. It makes TOTAL sense. These moments, for me, also come less often as Max has gotten older.

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  3. As an autistic person, people often ask me why I want to keep my struggles. Struggle is an inevitable part of human life and I would rather face the ones I have now than a whole new set. It's also not all struggle. It's an experience and a lens to view the world through.

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  4. This is a beautiful post, and it speaks to the hearts and experience of every mom of a child with special needs. One thing I noticed though is that you seem to be experiencing some guilt in even just writing the post. I noticed that you continually emphasized your love for Max the just way he is, almost as though you felt you needed to defend it. I want you to know that there is no need to do that or to feel the guilt in longing for ghost Max. We know you love Max beyond belief. We know what an amazing mama you are to him. No one who cares about you or Max or could relate to what you're feeling would ever question that. If someone's child had a brain injury from a bike accident at age 12, that mom would feel a right to her grief, her loss, and her longing for the person who would have been. You have the same right. As do we all. Social pressures to forget our losses and just be happy with the cards we've been dealt ALL the time are unreasonable and far too harsh for moms, families, and even our special kids. You are doing an amazing job, you are inspiring, and your writing is so good to read. Even if you missed the Max that would have been much more than you let on, you would still be just as amazing.

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    1. I am that mom whose child was 'typical' until a brain injury at age 12. I KNEW that other child, his newer self post stroke was a whole different kid. It is very hard to let go of what was. There is a lot of anger in his case because his injury was causes by a negligent doctor. So yeah I can totally relate. Most of the time though I'm so busy dealing with the 'fallout' from his brain injury that I don't linger on he used to be. Thanks for this.

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    2. Melissa, that is a whole other kind of letting go, and my heart goes out to you. After Max had his stroke at birth, we heard a lot about brain plasticity, as I'm sure you have, and the ability for regeneration. I hope your son is doing OK. Taylor, the only reason I mention my love for Max is not because I'm defensive about it but because it's part of processing these thoughts—i.e., how can you love the child you got, and still imagine the child you never had.

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  5. Thank you for this, on this day ... October 23rd was my son's due date. Instead he was born (12 years ago) on August 12th, severely septic. As I walked into my house tonight I was haunted by wondering what this evening would be like were today my son's birthday -- not the birthday celebration, but what our worries would be, what his worries would be, what he would have done at school today or would do tomorrow. What would his life be, and ours? I am so glad that I sat down at the computer to clear my head and check your blog before I did anything else! Thank you for putting this into words.

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    1. You are welcome. I hope your son is doing well.

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  6. Yes. It's true. And it breaks myheart, just as you say, for that moment, then I take a deep breath and push through... you nailed it. I think it's human to think that, and wonder. my children with the anxiety and fright they've developed... from their food allergies, they're different from the carefree ones that can sit and eat anywhere with friends. I'm not commenting here to hear advice back, I know that we are fine... but I hear you , you wonder... what if they could just go out and do anything, be free, without tethered by worry... (I love you, Ellen)

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    1. Yes, it's human and I think natural for many parents. And what if WE could go out and be free, without tethered by worry? There's that too.... Love you right back, Alexandra, you beautiful person, you.

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  7. Ellen,

    I look forward to my daily dose of you! This post however nearly brought me to tears which means it is maybe my all time favorite. (I don't cry easily and lust after those who do.) Thank you for talking about the grief we feel for our kids who are both lovely and limited. Your honesty is refreshing and makes me know I am not alone. Have a wonderful weekend.

    Kim

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    1. Ah, Kim, thanks. I cried writing this.

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  8. Ellen- I so very much appreciate this piece! Tonight, I'm taking my son for his first "respite" weekend since moving to a new city. He's sixteen years old, and resembles Max in many ways. Oh, how he completely holds my heart in his hands! I know tonight when I drop him off, there will be tears- tears of pride that he is independent enough to want to do this and to enjoy time with new friends; and tears of wondering- if he had been "the other child" would we be spending this long weekend looking at colleges instead? It always surprises me that I can experience all of these feelings at the same time...
    Lori

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    1. I hope he has a great respite weekend!!! That sounds great for both of you. Where does he go and what does he get to do?

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  9. As usual, a beautifully written, heartfelt post that I can sincerely relate to. As my son is almost 18 now, I do have fewer and fewer times reflecting on the what-ifs as the years go by. What helps me is thinking about how much better his life is than a person with his disability would have experienced life even a generation or two ago. Even though I know we still have a long way to go (understatement!) we have already come a long way - technology and inclusive education and more expanded mindsets have helped. Another thing that helps me is knowing that there have always been people with disabilities in our midst - and at any time any one of us can become disabled or suddenly become a caregiver for someone who has a disability. Also, a mind trick I play with myself - whenever I catch myself thinking "Aggghhh! Why me?" I try to switch to "Why not me?"... And indeed, why not me, or anyone else? To be completely honest, I actually feel happy and relieved that my son was born into my family - we can handle his extra support needs, and we celebrate the most awesome person he is and always has been. I just hate the thought of a kid like him being in a family who couldn't cope with it - and there are such families - usually by no fault of their own, they just aren't as well resourced (not just financially because we aren't exactly loaded!) and therefore can't advocate and support the way a kid like mine has needed to be advocated for and supported his entire life. We need to build a society where families who need that kind of help actually get it, not a facsimile of help, but actual help! Of course I prioritize my own child's life as I am determined he will continue to have a good life long after I am gone, but I also work towards and contribute to building a society that ensures that all kids like ours will have good lives. Ellen, that is what YOU are doing everyday with this blog. By sharing your life so generously you are showing the rest of the world that this can be done, with joy. So, thank you - you are helping to make sure that the next baby born with disabilities is fully loved and nurtured and supported and included as he or she deserves to be.

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  10. I appreciate this post. I know a lot of parents who feel the same way. I see them as they come to register students into our school. I have seen it with my own family members as they cannot face the disability at times. YOU are the miracle as a mother who is determined to create the best life for her son. I would say that taking time to process all of those feelings, whether grief or pure enjoyment, is so important as a mother of a child with special needs. I have found places such as Gigi's Playhouse to be a gathering center for shared experiences, emotions, and support. Your online community has already seemed to give solace, as I can see from the above comments. Take time to enjoy those gatherings, seek out such places, and be with people who know exactly what it is like. Good job, mom.

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  11. I've always wondered if I would see that ghost less if I had at least one typical child, but if this post and the words of parents is any indication, the answer is no. I would love to have at least one child who didn't require hours and hours of therapy, but instead I have two that do. I don't think about it often, but I do think about it.

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  12. THANK YOU SO MUCH FOR WRITING THIS! it lets me know im normal im not some crazy horrible person who envisioned baseball games, football, train sets and all of these other things you do with a little boy. I envisioned me his sister and him taking turns reading sentnces from our favorite stories snuggled in so tight in bed. Parks and play dates arts and crafts and him writing his name.. His father once told me he didnt think our son could be a dad and a counselor told me hed never be mainstreamed all of it. What I got I still love fiercely and hes enlightened me in so very many ways. They said he may not talk and the thought of never hearing mommy I love you haunted me. I dont have baseball games (yet) but I do have words and small sentences. I have a beautiful happy healthy ball of energy that can scale my walls rupture my ear drum w one screech and has prooven time and time again that hes stronger and braver then ill ever be. He lights the rm w his smile infects you w his laugh and hugs like hes never letting you go! Everyday is a battle quite literally but every day w him makes me a better person. I hold out hope for those baseball and football games still and a him writing his name and getting married. When I watch him w his little brother I think hed makes a very loving dad. So what if hes never mainstreamed could save us some bullying. And so what if I still panic when were at the park despite him being awesome thats my problem. And so what if when he sing the song from frozen the words dont sound quite right theyre there! I hear them. I adore my sunshine boy and though my heart may long for things and occasionally break. At the end of the day god blessed me w one of his most special packages and THAT I dont regret what so ever

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  13. That post was just perfect. It's as if you pulled the internal dialogue right out of my brain. So much love from a mom of a special needs 9-month old.

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  14. Ah, this speaks to me on so many levels. I am a former preschool special ed teacher who now has a preschool age son with an autism diagnosis. It is such a weird place to be in. I recently ran into some former students and was so thrilled to see them and how well they are doing. Afterward, though, I felt kind of icky inside. I began to think about how I can be so supportive and accepting of other children's special needs/differences, but have a hard time accepting them in my own child. I think it is just part of that grief we feel as parents.

    When I was in grad school I remember reading a book (Galinsky, maybe?) about the stages of parenthood. We had a related discussion about how when you have a child with special needs, at every new stage you grieve a little for the child you don't have, because you had all of these ideas about what your child would be like prior to them entering the world. I think about this often now. It is perfectly normal but uneasy feeling, as you so eloquently expressed. Thank you for this post. It made me feel like I am not the only one going through this!

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  15. Depending on the level of cognition and self awareness Max ends up with, he will have the same thoughts about himself. At least, I know I do.
    I was put on strong medication when I was 13 (Zyprexa- an atypical antipsychotic), and was on it for over 10 years. The impact of that, along with the dozen hospitalizations in fewer years also factored in. I did not have a normal adolescence, and was on the meds through high school & college. I still sometimes get trapped in the "what ifs". I know its not the same as what Max or other children who were born with their challenges go through or will go through, but things that are beyond our control, that have a major impact on who we turn out to be, make us wonder what if.
    I guess my point is that we mourn that which we lost, that which we wanted and never had. It doesn't stop us from being happy with what we do have. Chance, fate, circumstance.

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Thanks for sharing!



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