October 9, 2006

Found Wisdom


Schuyler
Originally uploaded by Citizen Rob.

I ran across this while researching something for my book, and it resonated so strongly with me that I wanted to share it.

I don't always think people understand why Schuyler's situation makes me so sad sometimes. I'm not always sure I understand it myself.


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Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental, heart-felt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on one's ability to separate from the lost dream, and to generate new, more attainable, dreams.

As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving.

-- The Impact of Childhood Disability: The Parent's Struggle, by Ken Moses, Ph.D.

28 comments:

Kiki said...

My brother was born with Spina Bifida, which left him paralyzed from the waist down.

My father--I'm told by one of his closest friends--never grieved the loss of the son he'd wanted. He kept it all inside.

And he died of cancer four years later.

K

Anonymous said...

I think it's important to grieve for ANY loss. My friend's sister just had a cancerous brest tumor and nodes removed at age 36. She hasn't married or had children yet. The doctors tell her bearing children is probably no longer in her future. She and her family (including fiance) are grieving this loss and coming to terms with their new future.
Time to re-write the future and make new plans.
I know it's not quite the same situation, but none the less the grieving is important.
Please take time to realize your new future and all the new joys it can bring.

Stephanie said...

(I'm sorry this is so long, Rob; it just came pouring out.)

Over the course of my pregnancy, there were 5 ultrasounds. Nothing was ever 100% evident, but because of the lack of evidence in every instance, everyone felt confident in saying "girl." I had felt early on that it was to be a boy, but everyone in my family was so confident in girl, especially after this, that I was absorbed by it too.

So, after 5 or 6 months of talking to my daughter in my stomach, my first words to my son were, "Hi Abby." ...then he came the rest of the way into the world.

I mourned the child that I had thought I'd known. I didn't love my son one ounce less; he was a blessing, a gorgeous boy, a namesake of my father and my husband and myself, the boy I had known was there those 9 months ago. But he was not the child I knew, not the one I had seen in my mind's eye, not the one I had played with, sang to, and told stories in the middle of the night. That child was gone, never to return - and yet, I had nothing bury, nowhere to go and lie down on the ground and sob for my loss, nothing to say to the world that this was my child that was now lost to me.

I mourned her loss, sometimes agonizingly, for years. I went through the grieving process (though denial wasn't quite the same as normal) and eventually came to terms with it. But, almost 7 years later, I still have a package of some of her clothes that I couldn't bear to part with; it is in my son's closet on the top shelf.

When I realized that my son was not the "usual" child, the grieving started again. This time the denial was fierce and probably more protective because of already having had the loss of Abby. I couldn't lose both of the children I had known and be handed, instead, something so terrifying as autism. By the time I would stop denying it, the depression at the second loss would overwhelm me and try to pull me under - and everything else in my life with it.

Today, I have a beautiful child, and I am so blessed to know him, to love him, to have him sharing his life with me - and I celebrate every moment of it that I can. But if I didn't sometimes take the time, by myself and with my husband, to lay flowers at those sites in my mind, to honor the fact that we have loved and lost -- we'd go crazy with our grief and never be able to truly honor the life that is in front of us.

The bitter truth of parenting our children is the enormous guilt, and this area is no different than most. With the grief comes the guilt, and with the guilt comes the grief.

Though it is incredibly hard to stop yourself from feeling it when it happens, do not ever believe that it is selfish to weep for your child. The fact is that most disabled children will someday understand and will grieve for themselves, and we, their parents, will only be able to really be there for them if we have already been through our own grief.

Weep, and when you are finished, go back to believing. Each one needs the other.

Anonymous said...

Wow, that is great. I have grieved the loss of the baby I had dreamed that I would have. I had to grieve yet again when my son had his stroke. It truly is important to feel the feelings and not stuff them down inside where they will fester.

Nicole said...

This is a great entry. I feel like it helps understand you and other things you've written a lot more. I think no matter what your child is- as expected, shockingly different, etc- it is an enormous mental feat for a parent to keep in the front of their mind this idea that their child is not the same thing as themself as a child. We all possess an inherent narcissism, where we project ourselves on our children and when they look like us and have some of our mannerisms and character, its even more difficult to realize that this is, essentially, a stranger. We have to learn everything about who they are and what they can do and what their life will be. I don't know what its like to have a child with a handicap but this has helped me start to imagine how it would affect me.

Pegkitty said...

I'm going through some grieving myself recently, and one of the things that my therapist has helped me with is being able to talk about the person/thing/whatever that I'm mourning for. One of the best ways to work through grief, he says, is talking about the person and telling stories. Reading this entry, I realize that Rob, you have been doing that all along on-line here with us.

I hope that having people to share your loss (of Schuyler's expected future) has helped you somewhat. I know it has helped many people our here in your cybervillage (do you have name for the village, btw, besides the slobbering minions - like Robi-Robland, or something? Where we all live in Robi-Rob floating houses? Just a little mental image to perk up your day. Time to end the parenthetical now).

I thank you for sharing Schuyler with us, joy and pain both.

Anonymous said...

Schuyler is so heartbreakingly beautiful in that photo, Rob. I recently wrote in my blog a letter to the daughter I will never have. As parents, we may mourn for different things, but we still mourn. Unfortunately, knowing that other parents are doing it too doesn't really help as it's still one's own loss you have to deal with regularly.

Mete said...

Yes, exactly. Kind of like a trip to Holland you weren't planning.

Kidding. KIDDING.

Seriously, it's a grief many people can't understand. It's like two deaths; you grieve for the child you lost as well as the child you actually have.

Stephanie made a good point that with this kind of loss, there is no gravesite. No closure. Just daily survival. Every struggle, every setback can bring the grief up anew.

Even good friends don't always seem to understand that. I may have accepted and adjusted to reality, and I may love my child completely just as he is, but that doesn't mean I'm "over it". I may hide it, but I may be very, very sad for a long time to come.

Anonymous said...

wow, very eloquent and thought provoking.

Rebecca said...

I read you blog a lot, but have never posted...Your words just captured me. In January, we recieved the news that our now 3 yr old daughter has Rett Syndrome. no one understands our grief more than another parent of a child with special needs. Thankyou for your words!

Renee in GA said...

Rob, as someone not likely to have children, and actively grieving the loss of what might have been, I am so thankful to have this blog to read. I can't go to or shop for baby showers anymore, but I read every day about Schuyler (and you and Julie too) and just having this small part of a sweet little girl's life helps something inside of me relax, just a little bit. I'm so sorry for your grief. I'm so happy for the opportunity you give me to celebrate her life, too.

Anonymous said...

I'm sorry, Stephanie, your entry reads as selfish. If I read correctly, you're saying you grieved (perhaps still grieve?) for 7+ years *because you had a boy instead of a girl*?? What a disservice you've done to your son. You didn't *lose* a daughter. You created a scenario that didn't fit your pretty picture, and the reality didn't live up to that. The wasted time, the selfishness. Very sad.

Gwensarah said...

I understand the words and agree about the wisdom but here's the thing: When I read your entries about a day you and her spend together what I see is that she really is the kid you dreamt of having. She's a punkass, David Byrne loving, co-conspirator in the blah blah hands at Parent/Teacher meetings.. you both have the same quirks. In every way that counts she's probably just as you imagined.

Rob said...

Oh, I think that's unfair. She's being honest about how she felt, and contrasting it with the very real grieving that she did when she discovered that her son was autistic.

Any parent who claims that they never create scenarios for their kids, sometimes the ones not yet born, is not being honest, even if it's with themselves. If you are told you are going to have a girl and then find out that the daughter you've been imagining and waiting to meet is never going to arrrive, you grieve for theloss of that person, imaginary or otherwise. That's a reality, whether or not it's selfish. Selfish has nothing to do with it.

Otherwise, why grieve for a miscarried child? Your emotional connection is entirely potential at that point. Why does that hurt and keep hurting? Do you grieve for every stranger that dies on the news at night? A baby you never met and never had is a stranger.

But ask any woman who has miscarried a child, even early in the pregnancy. It does hurt, bad. One reason we grieve is because we have created a future and an occupant for that future, even if it is only in our mind. Selfish or not, it's human nature.

Rob said...

In every way that counts she's probably just as you imagined.

I see what you're saying, and I appreciate it, but it's actually not true for me. Letting go of that potential Schuyler of my mind is one of the hardest things I've had to do, even if it's selfish. The Schuyler who talks to me and wants to knwo about the world and wants to tell me about every dog and bug she sees, that Schuyler I had to say goodbye to long ago.

Think about how little kids get excited and ask a million questions. That's a kid I always wanted to have. And it may seem like a small thing, but the BBBoW isn't even remotely good enough to take that place, and won't be for years if ever.

And yeah, it seems selfish, I suppose. But it's part of the process. I suspect it's hard for special needs parents because we are made to feel like we should be thannkful for what we have, and grieving for the child that wasn't doesn't change that gratitude, not one bit, nor does it cheat the child who is your reality.

It's all about being honest about our feelings, even the ones we aren't necessarily proud of, rather than putting an optimistic face on things all the time.

Anonymous said...

I have no trouble at all understanding why you are so sad at times. The loss of what you envisioned, of what could have been and the struggles Schuyler will face as she gets older - you would not be human if it didn't sadden you. In my case, I not only grieve for my granddaughter who was born with Prader-Willi, but also for my son and his wife and the hard life of caring for their sweet daughter now and the worry about what will become of her when they are no longer able to care for her. Some days the sadness is so overwhelming and the anger bubbles up. What kind of god or higher power, if there is one, would allow this to happen to an innocent child!

Slash File Save said...

All parents dream of what their child will be, and not all of them can cope with finding that their child is not their dream. Perfect or slightly flawed, or just plain different from what they imagined? It's not easy for any parent Rob. That's not meant to disparage what you're feeling, it's meant to say, more people than you know feel that way. & not all of their children are as wonderful as Schuyler.

Cherish what they are, not what they aren't. You seem to do that and it's wonderful.

Stephanie said...

Well, you did say, "if" - and you were right, you didn't read it correctly. It's text; it happens. I do hope, though, that we can all try to remember that this is a medium and that a few letters of someone's life probably do not make a complete story for judge, jury, and sentencing. Opinions are opinions, but there is hardly enough information in my (albeit long) comment to conclude any "disservice" or "wasted time."


I want to clarify my discussion of grief, as a parent of an autistic child, because I think it got lost in everything else.

My concern over feeling selfish in allowing myself to feel my grief was about the grief I have over my son's autism.

I have a beautiful child, a wonderful child, a child that I do not take for granted. I am my son's greatest champion and friend and have been for his entire life. I have done battle with every doctor, every school, every family member. I have searched and hoped and prayed and begged and then gotten up the next morning with a smile on my face, ready to face whatever demon would present itself that day - in order to teach him, protect him, love him, and help him grow.

These are things that every parent SHOULD do, and I am not diminishing any parent, but parents with "normal" children have no idea what the rest of us face down every day.

We don't just stare into the eyes of the disease / disorder / syndrome / whatever; we stare into the face of the future - and it doesn't blink. It is when we stare into that face and are positively terrified of the unknowns that are unique to our children that we end up having guilt over our fear and our grief for the situation.

It isn't about the fact that life is not the "sunshine and roses" that we might have imagined - find me a parent who doesn't recognize that fact. Frankly, I'd build a lego bridge to the moon and back if all I had to feel sad about was that our family life wasn't the sunshine and roses that we imagined - and I know Rob would be right there pulling legos from the same pile. What we deal with makes the 'sunshine and roses' theory just flat-out laughable.

Parents of able-bodied, neurotypical kids think of their children's futures and, of course, worry about the things that they know will occur in the "natural progression" - dating, driving, paying for college. That's not the future we stare in the face every morning. Every day's future for my family is about getting through THAT day, sometimes that hour or even that minute. I don't have time the luxury of thinking about dating or driving or college. I'm too busy thinking of how I am going to make enough money for this month's tuition payment (for a school we were blessed to find but our immense gratitude doesn't pay the bill), which is the same amount as the house payment. I'm too busy trying to stay alert and emotionally prepared to handle anything, because today could be the day:

~that there is an emotional meltdown so bad that my child hurts another child or himself? that he won't be able go back to school because of it? that I will have to quit my job to care for him and lose an income we desperately need for his needs?

~that something triggers the seizures, the Tourette's, the regression, the catatonia, the violent behavior, the schizophrenia?

~that he/she is taunted by another child and told the full truth (or worse) about their disease / disorder?

~that my child realizes or begins to believe that we the parents are genetically responsible for what is ailing them?

...the tiniest sample of the demons that come for us in the middle of the night.

It is important for us to know that it is not selfish to have those thoughts, to stop once in a while and allow yourself to feel the heartbreak of knowing that your child's life is never going to be simple or sane or "normal" - to grieve for what has been lost - for the child, for the parent, for the family. If you don't let that out, it will eat you alive.

For me, I don't have time to be eaten by the monsters, so I allow myself to grieve when I need to - because my son needs me to be ready.

MDF said...

Before I share a story, I want to first and foremost tell you, Rob, that you have a beautiful daughter. Photos are worth a thousand words, and your words and your photos of her provide us with a picture of an amazing soul. Though most of us will never understand, and I won't presume to, please know that I think so highly of you and Schuyler, and I wish and pray for your family, and for all of your new dreams to come true.

I am not a parent, but I am the only child of a mother who endured 4 heartbreaking miscarraiges--and even at the young ages that I was when they occurred, I endured them as well. I still do. I don't know that I ever grieved for their loss; instead it was easier for me to pretend in my mind that those siblings were really with me. Not in spirit, but in the way that one pretends that her imaginary friends are really there. My siblings had birthdays, names, favorite foods and favorite colors. They had likes and dislikes. We fought and we played together. On a trip to the mall, they were there with me at the toy store. On a long car ride, they were next to me, doing mad libs together. In the far, far, corners of my mind is where my siblings existed. That is where I celebrated their birthdays and pictured what their rooms would look like.

Now as an adult, I still go there sometimes. I imagine the Christmases, the Thanksgivings with all of us around the table. My youngest brother and sister are in college, just like they would have been. My other younger sister just graduated, and my older brother....I have him being in med school. This is not some break from reality; these are dreams I had that I still cannot let go of. Maybe because just for a split second, it feels so good to glimpse at what might have been, what should have been. To imagine a happier reality than what was given to us. Maybe that is why I keep them alive in my mind.

Gwensarah said...

Your reply hit me harder than the original entry. I think because it struck me how more than anything else about Rymer, the conversations we have and the slightly strange but wonderous things that he says are what I always dreamt of when I imagined the child I'd have back when I was pregnant. If he suddenly lost his voice and thus my window into his world it would feel like a death almost.
The more I thought about it, the more I could understand how saying goodbye to the dream is hard. That's not selfishness either, I think all people sometimes grieve what might have been... Rymer's always wanted a sibling and now at 8 is getting that it's not likely so in his own way he grieves the dream he's always had. We all do it.

trisha said...

I never dreamt of a child in any particular way. Not at all.

Dawn Masshole said...

I've posted here before BUT unsure IF i disclosed I have 2 kids : 1 MR 16yr old w/complete back reconstruction & various emotional challenges - and 1 young boy w/ adhd AND juvenile diabetes - LIFE CAN SUCK !!!! But, thats life - you hang the fuck on - you live it the best you can > seeing every little beautiful thing possible .. Because EVERYDAY can be different good & bad... and I've NEVER found a blog or website I liked more than this BECAUSE it IS HONEST and thru that I get a real feeling of comfort and love for people - its really "nice" ;)

Dawn Masshole said...

ps. as for the link - my ONLY question is whats next on this emotional agenda ?? LOL! its really not hard to figure out what your going throuhg ITS HARD JUST GOING THROUGH IT.. But, Hey,, we ALL make it usually come out a WAY better PERSON than you ever thought you could be... which reminds me: I HATE people who say "how do you do it? I couldnt..." I always say the same thing..IS THERE A CHOICE??? Given no choice but love for your child I'm sure youd be able to do it too.. LiveLoveLaugh O-F-T-E-N !!!!

Plankton said...

I've been letting this one rattle around in my brain for a bit. It resonates but I think there is even more of a loss. It is the loss of one's view of one's self. Having a child with a disabiity, even a child with a minor disability such as my older daughter has, means that a parent faces his or her own limitations early and often. Many of us have a view of parents that "parents are supposed to make it better." That view, and one's view of one's self as a good parent, takes a beating with all the things that cannot be "made better" or at least not a lot better.

Yes, with my younger, neurotypical daughter, I have faced this same thing, especially as she is now a teen, but it has a different intensity and I have a better roadmap for it with her problems.

In addition, "letting go" is a part of parenting. Having a child with a disability complicates this process a lot, especially where only limited "letting go" is practical and eventually there will be a search for someone else to take over the role. That portion requires facing one's own mortality earlier and more often.

angie said...

I know that I have also felt the grief. At times I don't know how to express the feelings that I have inside. I love my daughter, and I will protect her with every ounce of strength that I have. Sometimes I just want to understand why life has dealt her the card that she has? I find myself mourning for her, for us, and for the world. Thanks for posting this Rob!

Elizabeth said...

Wow... I hadn't realized I had more fodder for therapy until I read the replies to this post... My parents tried to have more kids but were unsuccessful. I never knew. I always thought I was an only child and more then enough for them. I always longed for an older brother, but any sibling would've been nice to share the focus. Then when I was pregnant with my first, my mother told me what happened, thinking that I should know in case anything happened and my doctor should know about family medical history in that area. The news blew me away and now I have an inkling more of why... Mourning for the siblings I might have had... My life would have been SO different with siblings of any sort, beyond even my ability to comprehend. What a lot of food for thought...

MDF said...

Hi Elizabeth....I am the one who originally posted about my mom not being able to carry more children and how that affected me. I always felt alone regarding my situation, and it brings me comfort to know that I'm not alone (although my heart goes out to you and your family). There isn't a day that goes by that I don't wonder how having siblings would have altered the course of my life. Sometimes, I wish that I didn't know that truth, because then I would be unaware that my life isn't totally complete. Maybe I would be blissfully ignorant of the fact that there existed an empty spot in my life; and instead feel that being an only child was how things were supposed to be, instead of a fragment of my parents' shattered dream of a bigger family.....I'll never know.

I want to say that my hopes, prayers, and well wishes are with you and your husband for a happy, healthy child (and more to come in the future:). Hopefully we won't have to endure the pain that our mothers share....

Lizardbreath said...

In a book that I got to help deal with my "sprited" child, it said the same thing. Interesting.