September 4, 2010

Forever Monsters

Schuyler has been in fifth grade for two weeks now. It's hard to get a direct sense of how it's going for her. By the very nature of her condition, communication with Schuyler always takes place on her terms. More than typical kids, she expresses exactly what she wants and not one word more, and even her expression of what she's feeling and thinking is wildly imperfect. Sometimes she lacks the words for exactly what she's feeling, and other times she lacks the patience to put them together on her device. And often, she's lacks all of the above. I think she gets tired of her monster, more now than ever before.

Nevertheless, some details are coming out. She occasionally says she doesn't like going to school, which is certainly not unusual for most kids but is very much so for Schuyler. She has, until this year, shown an unfaltering nerd's love for school. Now she goes, but dutifully. When asked about new friends that she might be making, she dodges the question by saying she'd rather talk to her old friends. And when asked about the big 5th grade adventure camp getaway that's coming up, she either says she doesn't want to go, or that she only wants to go if we go with her.

Most of all, we've observed how her neurotypical classmates treat her in person, how they avoid her attention and are far too cool for her heartbreakingly naive affections. I find myself sort of hating them. It's wrong, I know, to hate little kids. But there you go. One more shameful confession for the therapy file.

Schuyler is very conscious of how the ease with which she once made friends doesn't always come for her. She's aware of how she really is very different from her NT classmates in ways that perhaps she looked past before. It's happening now, we're watching it happen, and it turns out that despite the fact that I've said it before about other things, THIS is now the hardest part for me about Schuyler's monster. The world is becoming hard for her, and she knows it.

I had an event at work the other day, a back-to-school cookout at the university. I sat and ate my low-bid, state university food service burger (who am I kidding, though; it was delicious), and I watched all these young students, so full of promise, and their faculty, confident and at the tops of their careers. I sat there amidst it all, watching these people as they took hold of their futures and of the discipline that they'd chosen into which to pour their passions, and I felt separate from them.

I know Julie feels this way at work sometimes, too. We listen to the petty complaints or the small victories of people whose lives are so simple, and we know that when they go home to their non-working lives, there aren't necessarily monsters waiting for them. And they don't know what waits for us when we go home, either, our world of uncertainty and of loving this little girl so hard that it hurts, because that's what it does. It hurts, this love, it hurts when you love someone but feel powerless to help them. And the rest of the world, the people we work with and the people we deal with every day, they can't see that.

Watching everyone at this cookout reminded me that this life, this thing that I do and that I think about every minute of every day, this is who I am now. I can try to identify myself as a writer, and I still like to pretend that I'm a halfway decent trombonist, but in reality, that's mostly beside the point. I am Schuyler's father, and her advocate, her overbeliever and her protector. I get it right, and I get it wrong, but it's what I do now. It's my life's work and I get how privileged I am to have it, but since last fall's meeting with the school, we are facing up to the probability that when she's an adult, Schuyler will likely live under our care. This is a rest-of-my-life gig, and that's just the way it is.

There have been people in my life who haven't understood that, people I've had to walk away from in the end. Some have seen this as a life I've somehow chosen to live, and maybe they think I'm not even living it all that well anyway. It's hard to explain to someone who has no frame of reference that I can never walk away, and that when I make mistakes and when I get it wrong, those failures cut deep because I'm afraid that I will never be able to make things right. I'll run out of time, and that will be that. Schuyler will miss her window of opportunity because I didn't get it right, or because I took my eye off the ball and the game just fell apart.

When I look back on what I've written of late, I can see how I've been repeating myself a lot, ever since last spring. I can see how sad and self-indulgent my writing has become, to the point that I actually find it a little challenging to even go back and proofread my work without becoming irritated at the big fucking baby I've become. But the truth is that I am a bit lost.

When something goes wrong at work, or when I get a phone call because I'm late making a car payment or paying a bill, or I disappoint someone in ways small and even not so small, I react in the same ways that everyone else does, because that's the world I live in. My car finance company doesn't care, and maybe they shouldn't.

But when someone is clamoring for my attention or waving a bill in my face or wanting a piece of me that I can't give them or expressing how very very much I've disappointed them, they need to understand something that I can't change, as much as I'd like to.

No matter how dire their need is, it's not ever going to be the thing I am the most worried about on any given day. It's simply not. And the things I do worry about the very most are the ones that I can change the very least.

These are the monsters that never go away, the tenacious, forever monsters.

Do you want to hear something really awful? And it is sort of horrible, made more so by the discovery in a recent conversation that Julie feels exactly the same way. One of my worst fears is that one day, hopefully far in the future, but on the day that I die, I'm afraid that my last whispered words, my last conscious thought, will be simply, "But who will take care of Schuyler now?"

52 comments:

Anonymous said...

I'm so sorry. You describe exactly how we feel about our daughter and while we still have time (she is only 6) for her to start realizing how different she is from other kids, I feel like we are running out of time every day...Your post made me cry cause I'm so scared for my daughter's future. I guess I'm trying to say I know how you feel and how tough it is. Unfortunately, there's nothing I can say to make it better...

Niksmom said...

Other than the names and places, and the type of monsters, I can relate to all of this. Painfully so. Especially the last part.

Irene said...

Very moving post.I can identify in the fact I did not(do not) fit in or communicate to others well to the point of becoming frozen and not knowing how to express myself even to my husband who sometimes gets mad at me because I don't do normal right.I can't begin to to understand how difficult your day to day life can be. You and your wife must be two of the most compassionate people alive.Unconditional love and living life in the moment is the only way.Try not to worry about the future it usually takes care of itself.Your writing and blog are amazing and so is your daughter.

Emma said...

I feel the same way. It is so hard to relate to other people's "normal" lives. And I KNOW that my dying words will be "who will take care of Sam?"

Suzanne said...

You say you feel like you've been repeating yourself lately and your writing is sad---well, this was beautiful writing. It made me cry also. You touched on so many things that parents dealing with their own monsters understand, and few others do---the knowledge that this is forever---there is no end in sight, and that those who complain about petty problems in their lives just don't really get that. That until our last breathe, the only truly, truly important thing will be best helping our child make their way in a world that, despite all the politically correct talk out there, doesn't welcome differences. And the love---the overwhelming, heartbreaking love. You're aren't alone, if that helps at all.

Heather Albee-Scott said...

Very moving. We have a 10-year old daughter who will be the new kid this year and the worries I have are constant - we just had a talk about the popular kids at her other school and how it can feel to not be the one all the kids want to be around. Why can't our love for our children, our belief in their abilities be enough?

Anonymous said...

I can relate to a lot of your feelings. My 8 year old son has mild cerebral palsy. He is verbal, but very difficult to understand. He also has a Vantage Lite like your daughter. Fortuntely, we live in a very small rural area and Drew is very accepted by his classmates. In fact, they think the "talker" is very cool.
Even though he is so accepted by his peers, I worry if he will ever be able to read or even be able to live on his own. Parenting him is such a challenge. What if I get it wrong? What if I miss something? How can I do things different and better?
One thing I know for sure is that God chose me as Drew's mother. I may not always understand the why's, but I know that God will give me the strength and courage as Drew's advocate.
I pray that my son lives a long and happy life. I also pray that God will not take me before my job of parenting is done. I fear leaving him behind in this world.

Elizabeth said...

For what it's worth, the same for me as well. Someone wiser than I told me once that I need to remember, especially when I am feeling much as you've just brilliantly articulated, that my daughter is on her own journey. Her own life journey and however much I want to control and fix and do all those things, well, I can't.

Anonymous said...

I think I would continue to try to talk all these feelings out with your daughter. If she wants to tell you how she's feeling, she will--if not, that's ok, too.

All we really have in this world are our families. If you love Schuyler and she knows that you love her unconditionally, I guarantee you that she will be fine and do fine. It's our love that holds our children up when they need it most. If they have that, they have everything.

Karen

kristina said...

I go to bed every night thinking the same question about Charlie. We've tried to start doing what has to be done so we have some sort of answer, but the terrible part is, we won't be around to know if ours was the right answer.

Since that question occupies so much of our thoughts and daily existence, I have both less and less patience with chitchat in the faculty dining room---and, too, I somehow have more patience with whatever the latest worry is (the core curriculum.....). Because I know if I get that worked up about anything, it'll be about something that really is so truly life-important.

KimZ said...

I could have written that myself. I know exactly how you feel. Thank you for sharing that. Thank you for not being afraid to share real feelings. My son is autistic and without speech. Just entered the 2nd grade, new school, new everything to him. I feel they fear him because he talks with a device, he's different and heaven forbid they change their routine a bit for his sake. As a single parent, I absorb his pain and my pain singlehandedly. Please continue with your support and know that many of us feel a part of Schuyler because of your book and you have taught us to be the best advocate for our child(ren) no matter what!!!

Hetha said...

Oh Rob. You've never made me cry, even though I always relate to so much of what you write. But that last sentence is exactly what I think and feel all the time about our own situation. I find I am completely unable to soften my language with people anymore and when recently asked about my hopes and dreams for my own child, I heard myself answer that in all truthfulness, I sort of hope that he dies before I do. If he outlives me, my worst nightmare comes true, that he live in this world without me.

Sending you and Julie big hugs and warm thoughts.

caviling said...

If hating small children is wrong I don't want to be right.

I wish I had something more profound (even useful!) to say but that's it. Kids can be as thoroughly rotten as adults.

Kerri. said...

This post touched my heart. I just wanted to let you know that.

Anonymous said...

When you say
"We listen to the petty complaints or the small victories of people whose lives are so simple..."

I'm reminded of an Anne Lamott quote about the dangers of comparing your insides to other people's outsides.

You have a mighty mighty monster at your table. You're surely entitled to every bit of frustration, exhaustion, and self-pity by anyone with half a heart.

But holding other people at a distance because their lives seem simple and petty to you, keeps a whole bunch of angry walls in place that aren't doing anyone a bit of good.

Would it minimize the depth of your daughter's struggles (or take away from her victories) to know that the smiling undergrad you just saw is months away from a paralyzing motorcycle accident? Or that the hotshot faculty member heads home to have the shit beaten out of her by her husband...again?

The world is wide and monsters are everywhere. Feel angry and tired for as long as you need, but comparing your imperfect inside life with the illusion of other people's outsides is only a merry-go-round of pain. I say this because I've been there, and with great respect and affection.

Sherry said...

As a parent I can relate to many of the fears and frustrations you shared here. My daughter’s monster is of a different nature but is no less a worry to me than Schuyler’s monster is to you. They are our babies and our heart breaks for the struggles they have endured / are enduring / will endure. But I think Anonymous’ message before me is absolutely bang on. It is easy for us to feel alone in our struggles and feel no one else has it as bad or could ever possibly understand. However, everyone battles monsters of some kind. And since I spent a good deal of today in an exhausted state of self-pity, I for one am truly grateful for the reminder that Anonymous so eloquently stated.

Sange said...

Me and dh and have come to terms this year that our 9 yo son will probably never be able to live on his own. At this time, we just hope that he will be able to hold down a satisfying job and lead a happy life.

After dealing with all this it sometimes is hard to deal world. Life goes on out there, but on some days, who cares. It can get hard to talk to friends who's only worries seem to be that their kids are not getting enough 'A's or have bad sports coaches.

Maire said...

Oh how I hated the girl tween years...my daughter did not function well in the typical school environment. I too, hated those children who had that radar for singling out children who were different. Even though this was my youngest, and you'd think I was by that time savvy, it still hurt me to step back and not smother my baby with the lioness protection I so wanted to give her.
Your post was very moving. Thank you for being able to express and write what so many parents feel.

renee (tesserae) said...

i don't want to minimize this, so i won't. i understand. thank you for being willing to write about it.

Jenny said...

It does hurt when you can't help someone you love.

My older son has autism. He is only seven, but when I bring him to the playground, I already see kids and adults giving him the side-eye. He is a wonderful little boy but not everyone can see that and sometimes that just hurts. For now Max doesn't seem to notice, but someday he might.

I also worry what my three year old will think when he realizes how other kids see his big brother.

There are times I just want to run off to some hidden place where I can protect both of them from the rest of the word, but of course that's just impossible.

And it wouldn't be good for them anyway.

Holly said...

Even if what you are writing is similar it is still different. Different words, different feelings on a different day. It's beautiful writing.

Recently my brother in law asked us to care for their NT children if something should happen to them. Of course we said yes, but it opened up anger in my heart. Why do they just get to pick SO easily?

My husband and I talk about "who" we should leave our daughter with all the time. We still don't have the right answer. No one can do what we have done so far and she is only 3. We've even considered having more children on the slight chance that they would have the guts to stick around and take care of Caleigh after were gone. That's Selfish on our part. Totally.

stacy said...

I lived in Texas in the Dallas area for three and a half years, and for me it was one of the least relaxed atmospheres I've ever been in. People really strive to keep up appearances there—more than anywhere else I've seen in the country, and I've lived in Fort Wayne, Chicago, Los Angeles and Dallas. I sometimes wonder if that contributes to how alone you feel.

I know this isn't much help, but through reading your blog I've come to care about you and Julie and Schuyler. I'd love to help, but how? I hope that I'm helping through reading your blog; you should know you have people listening if you need to vent. Maybe that's not much help in your situation and maybe that doesn't make anything easier, but I hope it makes you feel less alone.

ANewKindOfPerfect said...

Everything you just wrote, is in my heart. I feel like the worst parent in the world when I admit this - I have often thought that it will be much better if my daughter dies before me. Then I won't have to worry about who will take care of her when I die.

And now I'm going to go cry ....

TherExtras said...

Blogging can make for good cheap couch time, eh?

I don't allow myself to comment anonymously, but many Anonymous comments are pretty good including the latest one.

I recently read a post titled something like "19 first days of school" full of anxiety by the mother and anticipation of each school year beginning with the same dread - exacerbated by entry into high school - as if her child would not grow or mature ANY and would enter later grades with the same 1st-grade-behaviors, forever.

I know, some of your suffering is that she will/may always be different, the dread of forever dependency.

Consider going out and finding adults with communication disorders and seeing what it takes for them to live away from parents even if they need unique support systems.

Schyler's monster looks more like a communication disorder, now. Your monster is in a different category. Looks like your monsters will be forever unless you can tame them a bit and maybe see them as pets. Barbara

mumkeepingsane said...

My 8 yr old son, Patrick, is autistic with a history of seizures. He has started to understand how different he is and his sadness breaks my heart. I have been guilty of feeling hate for little kids and it's heartwrenching in its own way. Yeah, when a child runs a prolongued campaign against my son leading him to decide he wants to "disappear so nobody can ever see me again", I'll admit to hate.

The need to die before my husband has been all consuming in the past. Yes, I realize how selfish that sounds. But it once provided me with some measure of twisted comfort. These days I'm unable to even contemplate Patrick's world without us in it.

I'm in danger of rambling so I'll stop here. I just read your book today and after all the tears, laughter, and goosebumps, I'm an emotional wreck. Sending positive thoughts to the three of you.

Anonymous said...

I cannot relate to this on a truly personal level only because I am too young yet to have a child of my own. However, I greatly admire your perseverence, and your daughter's bravery in dealing with the monster. I have read your book, and it touched me very deeply, I cried, laughed and felt your fear. The only advice I can give is continue to be strong (even if sometimes you don't feel so strong) and fight the monster.

As long as I'm here, I might as well add this. My name is Schuyler as well, and I am a girl. One of the few that I know with such a fantastic name. :)

- Schuyler

Ceci said...

I'm lost too. Thanks for opening up about how you feel. In some weird way, it makes me feel like less of a freak. Ever since our daughter's monster (epilepsy) reared its ugly head, I've pretty much hated anyone with a "normal" life and "normal" kids. How dare they even think of complaining about their stupid problems, when our problems are so much worse?? It's not a good way to live, but it's me. Anyway, your words are so true in this piece. THANK YOU!

StaceyEsq said...

So heartbreaking. There are no words to express the fear of broken childrens' futures and who will be their caretakers.

Liora said...

Yeah, I have often felt that way about my son, Eli (he is autistic). No one really understands. I feel lucky knowing that after I pass, Eli's three siblings will share the responsibility of his care. At times I feel that it is such a large task to pass onto them, but we are family. We take care of each, we love each other. So, I thank G-d everyday that Eli has his siblings, they are his most fierce protectors, after his mom and dad. I don't know who else could care for him.

Ariel said...

Such a beautiful, heartbreaking post ...

Corinn said...

A friend of mine, who just turned 30, will definitely never be able to fully take care of herself; she has PDD-NOS, and refers to herself as a medium-functioning autistic. Her journal is unfortunately locked, but she wrote once about taking a tour of a group home. Admittedly, she doesn't need much help--her parents mostly provide meals and remind her to shower when she forgets--but she wasn't scared by the group home at all. It was a nice place with good people (staff and residents alike), where she could see herself living happily when her parents' home is no longer an option.

I know you can't help but worry, but even if Schuyler can't live independently, I think she'll be a happy, working adult when she grows up. Adolescence SUCKS, but with such loving, supportive parents, she'll get through it.

H said...

I have friends with a daughter who will live with her parents her entire life (she is 23) but, unless something unexpected happens to her parents, she will not outlive them. I appreciate your insight as it helps me understand a tiny bit of what they experience. Thank you for sharing and my heart goes out to you and your family.

Annie B. said...

Ours has been a divided journey. We have Hannah (21) who will not be able to live independently. She will always need a supported environment. And then we have Sarah (18). . .who is on the other end. . .an honor student, a gifted artist and dancer. . .starting her freshman year of college, planning on majoring in animation. What a balancing act that has been! So everyday we are faced with both worlds and how to help each navigate their own lives and yet also live interdependently as sisters and part of a family unit.

Sarah had to grow up quickly. She, Jeff and I know that even though she is 3 years younger than Hannah, Sarah is the "older" sister. And Sarah has known for quite a while that she will inherit responsibility for her sister when we are both gone. I can't even wrap my brain around how that will work. . .i know she can't either.

But I also know that you can't dwell on that all the time 'cause it will make you crazy. Jeff and I have put into place what we can legally. Guardianship, special needs codicils in our wills, etc. But beyond that we try as much as we can to live in the present. . .'cause there is enough to deal with here.

I think the hardest thing in this community of people is that we can't really CHANGE anything for each other. We can only say, "I truly do know what you are going through." There is a measure of comfort in that. . .but there is no RELIEF in that. . .for us OR for our kids.

You are in one of the hardest parts of the journey right now. When the reality of what it IS, what it is NOT and what it CAN'T be is becoming more clear and concrete.

I have a dear friend whose 19 year old son has Asperger's. He was diagnosed at 4. Part of their routine, for years, has been a weekly visit to a psychiatrist. She was telling me about a time when she was talking to the psychiatrist and was going through a list of behaviors and circumstances that made her frustrated with her son and with life. The psychiatrist looked at Diana and simply said, "None of that is going to change. . .so if you are going to make it through this, what IS going to change?"

There was just something about that simple statement that hit me between the eyes because it was reality, plain and simple. . .and for us, the time for "what if's" was done and we had to take a good hard look at how we were going to do this and help Hannah be successful in her own right. Every day is a challenge. EVERYDAY there is something that reminds us of the difficult and different journey we are on. But even with all of that I am still a "glass is half full" kind of person. . .and i am trying real hard to let that side of me win more often.

Thanks for putting what we are all thinking and feeling into much better words than we can. . .and for letting us add a few of our own anyway.

Hugs to you all!

Penny said...

Yes, yes and yes Robert. It is often my thought on waking and on going to sleep - who will care for my M.... I don't have the answers and I too don't have much care for or time for, the people who fuss over whether their little Jimmy or Sally had such a hard time when they got cut from the baseball team. It all seems so meaningless to me, when i sit with the questions of life around me every day.

What I can say is that Schuyler is lucky to have you, that you have the resources to go on and do what needs to be done so that question has an answer in 3-4-5 years from now. I know you do. You have it within you, much the same as we all do. It becomes a question of what prompts us to DO instead of wallow in the thinking. So, now is the time to switch to the DO part. I know, easy to say and hard to do.

Schuyler doesn't see you as a failure. She sees you as a Dad. That's the person that matters in all this. You will not fail her. You have not since the day she was born.

Molly said...

If you were in New York I would bring Schuyler to my sn summer camp with me. She would fit in perfectly in the girls group. So many of my kids make REAL friends. It's amazing to see. She needs kids who either don't care that she's different, or don't notice. She deserves that. and I think she will find them. Or they will find her.

Carol Askew said...

I could have written most of this (if I was a better writer), about our life, and my daughter who is nonverbal and almost 10. Our only difference is that she is in a self-contained classroom most of the day and she loves the other kids in there and feels comfortable. I see the gap growing between her and her typical girl peers though. Megan yearns to be one of them, yet at best she is tolerated for a few minutes. Girls that age become so concerned about appearances, and I'm afraid it won't get better for years. And my concern for when I'm gone? That's the biggest fear of my life - what will happen to my daughter - so much that I can't even think about it. You're not alone.

Kate said...

On the topic of Schuyler's future, you might find this article (from the Globe and Mail, in Canada) interesting. It's written by the father of a boy with disabilities. http://www.theglobeandmail.com/news/national/article709017.ece

Anonymous said...

It SUCKS! It sucks to mourn a loss whenever everyone else gets to celebrate a milestone. And you do get tired of "feeling like a baby" about it, but that just means you try more and more to suffer alone instead of asking for help. Sucks. I'm so so sorry.-- Stellasmom

Rebekah said...

You have put into words what I know so well.

Ricky will grow up and he will go through puberty. But he will never be independent from me. He has low average IQ and learning "issues" and a fatal illness, apart from his bipolar disorder.

This is who I am now... His mom. The people I help at the library move along and go on with their relatively simple lives. I spend my breaks and evenings chatting with therapists and school administrators and nurses. I go home to therapies and countless meds. I battle with insurance companies.

That's my lot and it sucks a lot. So I can understand totally why your posts are sad lately. It's the main reason I haven't written on Ricky's blog in a while, I guess. (But don't you stop writing! :P)

Zoe's Dad said...

Your last paragraph is a thought that most of us parents who have a child with a disability think about. No matter how much we prepare our child and society, we fear we have not done enough.

I am glad your blog was shown to me. I am a facilitator for a group of dads who have a child with a disability, and I will be sharing this with them when we have our next meeting.

Keep up the good work - you are doing a great job of being a dad!

Rob Rummel-Hudson said...

Thank you, that means a lot to me.

ScientistMom said...

You often write exactly how I feel about things. Somehow it helps to have someone else write it down because I feel less alone.

I wonder, does it help you to know so many of us feel the same way? That we go home to our own monsters? Does it help you feel less alone?

Rob Rummel-Hudson said...

It does help, tremendously. I get more from you people than you do from me, trust me.

Amy Bergholz said...

"From my heart I follow the ghost voice. It is leading me and leading me and leading me." --Barry Hannah, "Ray"

Susan said...

You sound like an INCREDIBLE father! Keep up the good work you are doing...know that you are making a difference in this special little girl's life! :)

susanna eve said...

I am another reader who understands. We don't have a precise or adequate diagnosis for our daughter but she is almost 14 now and that "adult" future is a lot closer for her. It doesn't look as if she will ever be able to live completely independently either. Our 4th son is on the verge of taking wing and that leaves the 3 of us together forever. I have been homeschooling for 19 years so homeschooling our daughter was already happening before we knew the extent to which she was not NT. I have felt that hate you mentioned too for other kids and yes for the parents who didn't want to make the extra effort to include my daughter and I.
I used to worry about who would take care of her if we got hit by a bus for example. Now I hope that her siblings who are in their early 20s will take care of her.
The best any of us can do with our kids, NT or not is to do what we can one day at a time.

adequatemom said...

I love you, Rob. I wish you comfort in knowing you are not alone in this time of darkness - people all around the world hold you and your family in their hearts.

Thank you for continuing to share your words with us here.

Courtney said...

Thanks Rob :) PMG is a monster we understand. I often wonder when it will get easier... but I wonder if it ever does... Is the rest of my life going to be up and then down all because of the pmg?! I hate it!

fern said...

It is not often that, when I read a blog, that I can relate to so much of a post. My son has depressive bipolar disorder and I live with the fear that when I get it wrong, he could take his own life. It is unbelievably painful to watch your child in such pain.
I never thought I would live a life when, at the end of each day, if my child is alive, I have succeeded. I never thought I would worry about who will take care of my adult child when I am gone. He is 21 now, and we have been on this journey for a long time. When things are good, they are very good. But I always know that it will not last.
Thank you for sharing.

Janera said...

A part of me wishes to say, "I wish I didn't understand what you're writing about here." But then, the fact that I have lived it with my daughter makes that wishing seem a bit traitorous (what's the word I'm looking for here?)/

Yes, I hate the meanness of small children and adolescents, and I'm afraid I didn't navigate those years at all gracefully. But we all survived, came out of that middle school hell to arrive in a better place.

Funny thing? It was no kinder to my "typical" children than it was to my "special" one.

In short, adolescence sucks bilge water. But it passes. I promise.

Sara said...

When my daughter was a few months old and I was struggling to accept her syndrome, my father said something profound to me. He said "your life is not her life, you are not her, she has her own path to take." I thought, what is he TALKING about, of course her life is my life, she is helpless - and I feel her life more deeply than I ever did my own. But now every once in a while that thought comforts me. And I know I will probably always hurt more than she does for her. She will take the potential cruelty of other children minute by minute, as children do, while I will have spent years anticipating it and dreading it, so when it happens it will knock me flat. She will be stronger than me - an odd thought. But partly she will be stronger because she has my love, my attention, my very careful care.

Julie said...

Thank you so much for sharing all this. If the 51 other comments haven't convinced you that it is worthwhile, let me add my voice.


Write whatever the hell you damn well feel like writing, Rob ;) You need to say it and someone probably needs to hear it. Every time.