Thursday, August 19, 2010

Those times that make you wonder: Why didn't we get the happy ending?

A few months ago, an editor I know at Parents told me they were running a story about a mom whose kid had a stroke at birth, the same thing that happened to Max. She asked if I'd be OK if they mentioned this blog, and I think my response was something like "Hell yeah!"

It was hard reading the first part of the article, because it brought back painful memories of the trauma surrounding Max's birth—seizures, doctors telling the couple their baby had brain damage and was at risk for cerebral palsy, getting involved with Early Intervention, the mother fearful of what the future might hold for her child.

Then I got to this part: "By the time he was 2, Luc had 'graduated' from therapy, and his neurologist could no longer find physical evidence of impairment from his stroke. From picking up a Cheerio with his fingers to speaking a full sentence and reading simple words, he has met every developmental milestone on time. We believe that having Luc in therapy at such an early age made a big difference."

My heart sank, as awful as that may sound. It did. Not because I wasn't happy for this beautiful little boy—I was. Not because I didn't think it was an important article for raising awareness about pediatric stroke—I did. But still, that "Why not my child?" feeling swept through me. We got Max so, so, so much therapy back then. We still do. We've done everything we humanly can for him. And yet, he cannot pick up a Cheerio. He cannot speak in full sentences.

I know, logically, why not Max. He had more brain damage from the stroke, a bilateral one, than that little boy did. It's sort of like how lightening strikes—there's no control over where it goes or how much damage it does.

I know we are very lucky the stroke was not worse and that Max is doing as well as he is. "It didn't get to the basal ganglia," a neurologist at the hospital told us as he showed us the MRI film of Max's brain. The white parts were the damaged areas—the temporal, parietal and occipital lobes, part of the frontal lobe too. But the basal ganglia—the group of nuclei that lie deep within the brain and are critical to motor control and learning—were spared. In a nutshell: Max would have been far more disabled if the stroke had hit that area. It was the one good piece of news I had to cling to after Max was born. For months, it gave me tremendous satisfaction to tell doctors we met, "The basal ganglia were not affected."

I know there are parents reading this whose kids might not be doing as well as Max is, and they may be thinking I have nothing to complain about. I am acutely aware of that, even as I struggle with my own habit of comparing Max to kids who have exceeded his abilities.

I know that Max is still young and bright, and that he will continue to make great progress.

I know, I know, I know. But it doesn't stop those thoughts from cropping up.

When Max was born, our pediatrician knew of two other moms in our area whose babies had strokes. He connected us, and they came to a baby party we threw for Max. "He'll be OK," one of those moms told me. I desperately wanted to believe her. A few months ago, I bumped into that mom and her daughter in the Target parking lot. Her kid, now about 11, is just like any other kid. There is nothing really wrong with her, her mom told me. Again, that double-edged thought: Good for them, sad for us.

I feel absolutely, positively crappy when I have these thoughts—it seems awful to, well, envy another child's well-being. To covet that well-being. Are these not deadly sins? I don't feel any sense of gratitude when I see Max doing better than another kid who's had a stroke or who has cerebral palsy, I just feel sorry for that kid. But when Max isn't doing as well as another child-stroke victim, that gets to me.

I've tried so hard to quit comparing Max to typical kids. It's taken years, but I no longer do it. Still, I compare him to other kids with the same diagnosis, and it dredges up pain. And gut-wrenching guilt. I hope, as the years pass, I'll stop doing this too.

Do you ever compare your child to other kids with the same diagnosis?


  1. All the time.. searching for someone that might have a very similar set of skills so I can predict or know what lies ahead. I especially look for adults (with a similar diagnosis) that are "independent" to see how they manage.

  2. all.the.time.
    I compare my son to other hydro kids, other sq cp kids, other barely 2 yr. olds. I try not to & like you, I cling to what my son can do. Hopefully I can stop comparing.
    I get Parents magazine & after I read the article I felt like it jipped alot of parents who don't have the happy ending.

  3. I do it all the time! There are so many kids born at 29 weeks that are completely typical. There are kids born at 24 weeks who only have minor problems while my boy is very mentally handicapped and physically as well. It drives me nuts still after 13 years. It not only drives me nuts, it makes me angry and sad! Yet he is such an amazing guy that I can't help but push those feelings aside and keep's all I know to do!

  4. I do worse: I compare my own kids. I compare the kid who was able to lose the autism diagnosis to the one who never will, which is happy and sad and incredibly painful and self-castigating and really, really, really stupid and useless to do. So I stop myself. For a while. And then I start again.

  5. Thanks for sharing honestly... it was really helpful for me to read this post.

  6. I think being a mom definitely makes us compare children. I think it's in our DNA. ;)

    I even get kind of snippy with my friends, which I really don't mean. I'm sarcastic by nature and when my friends say "at least she's talking" I'll reply with "at least your kid is walking".

    One of my close friends explained it best. In your post you talked about thinking you have nothing to complain about. It's all PERSPECTIVE. My friend had a 24 weeker and when Jillian was born at 30 weeks, I felt like I had no right to compare what I was going through with Jillian with her. But, she explained that for me, having a 30 weeker was one of the hardest things in my life and it was ok to feel like that.

  7. Oh have I been there--in a different way. Kids who have the same problem in utero, but the doc catches it in time and the kids are delivered healthy and well. Make me want to smack someone.

    With the amount of brain damage that Charlie had, I thank God that he's capable of anything.

  8. Oh HELL YES!

    And how the hell do you explain having not one, but TWO kids who look very much alike with "diagnoses" and not have to go through the big long explanation about where the oldest came from? (Sarcasm ON) Gee, I mean, I only produced ONE that was "crippled," the other one was GIVEN to me by my husband's meth head sister who's in jail! No, really, it wasn't any drinking or drugging on MY part that put me in this situation...yeah, I was too old, but I wasn't trying to get pregnant with the baby...oh yeah, and there is no "baby daddy," around--their daddy, who I actually was really married to, unlike most kids today, is DEAD, see? (Sarcasm OFF).

    It's nobody's business. It's exhausting sometimes, if you bother to care about what other people think, though. And it's tiresome when people with their own issues try to "game" you to make themselves seem superior, doing their own comparing, and making it so OBVIOUS that they're happy as hell that they aren't as "worse off" as you are.

    Sure I compare. Sure I sigh. For the most part, though, I let it flow, you know, like Bruce Lee said "Beeee Waaaaa-taaaah, my friend!!!"

    The only time I get really pissed is when Patty Perfect with her adorable little child Petunia (made up names) who used to go to the same therapist, tries to tell me how phucking PERFECT her life is, while she DENIES the kid's disabilities in the first place, in a "Lord it over you, you minimum wage flunkie/notice my fugly full-price name-brand clothes" kind of way, pretending like we know each other from church or something, when I know damn right well the B-word was freaking out, wailing, whining and screaming like most of us were back in the day. Of course, I also know she is lying through her teeth about her perfect family, since I've seen her cheating sleaze of a husband at my diner with that tramp in the "hot pants" from the bar down the road at closing time! Yeah, her kid's condition is milder, but I remember when she didn't KNOW that.

    And Ellen, what you have to realize is, this is a PARENTS magazine. It AIN'T REAL LIFE. Hell, you're an editor, you know how this shit works. If the story isn't totally "inspirational" it ends up in the round file. The arc goes like this--gripping storyline, compelling good looking, not-too-fat/not-too-gray characters, dramatic circumstances, overcoming adversity, everything's resolved with complete and total happiness at the end of the tale, like a half hour sitcom. Oh, and the pictures that accompany the article? No one has a zit, no one has a curious stain on their perfectly pressed clothing (WTF "IS" that? Blood or chocolate?), no one has messy hair, no one is whining, drooling, crying, or hitting their brother, and everyone is photographed through the same lens that Barbara Walters used to use on her specials.

    Ellen, those magazines don't want "real life." That's what frigging blogs are for--the good ones, anyway. Truth is ugly, sometimes, truth is painful, other times, and truth doesn't always have a "happy" ending. Sometimes the ending is lousy, sometimes there is no ending--you get to the finish, and it's lather, rinse, repeat.

    So lather, rinse, repeat. And play this clip from Bruce when you get down, it helps--I always liked that boy's looks, and his advice is good, too:

    Be water, my friend!

  9. holy crap.. ALL THE Time.

    umm.. constantly. I can't bring myself to read blogs where the kids are doing better then mine. Is that awful? It feels awful. but I just can't. I'm like why did they get the miracle? Why didn't my little guy get the miracle.

    And yes I know.. he's doing great, better then expected. blah, blah, blah I say! grrr...

    Thank you once again. You're awesome at hitting the nail on the head. Thank you for blogging and thank you for just being so cool.

    oh and GreenGirl - I totally do that too! I'm always looking for a kid who's a few years older that was similar to how my kid is now. Any tips on how to find that person, much appreciated! jk. kind of.

  10. Glad to hear that I'm not the only one! Thanks for keeping it real! :)

  11. I don't compare Connor to other kids with the same diagnosis, because there aren't any.

    And see, I envy the parents who get the chance to compare their kids to others with the same diagnosis, because they have an idea from the start of what issues they might be facing, therapies they can use, etc! We have no idea what the heck is going to happen in the next few years.

    I guess the grass is always greener on the other side!

  12. I know you didn't get the happy ending you had imagined, however Max has got to be one of the most beautiful boys on the planet!!!
    Keep pushing through because I think that young man of yours has a lot of tricks hidden up his sleeve!

  13. Yes. I compare Ashlea to other prem babies - especially those born earlier than her who are doing better than her.

  14. Oh Yes, way more than I'd like to admit...

  15. All the time. I think all parents compare and wish and hope for their own kids to be "the same" .

    And I read the Parents magazine article too and wondered aboout how you would feel when you read it. I think your response was dead on--no need to feel guilty or bad.

  16. Who doesn't? I find it especially difficult when it causes me to second guess my choices and try to judge if I did everything I could. Like, should I have hired someone to hold him down for me while I forced in the vitamins he wouldn't take. Or chosen a different type of therapy or a different school. So it's less about the kid I got and more about who's the better parent.

    Without that, though- if you could somehow reassure me that we made correct choices- I guess I'm less into comparing. I got dealt the hand I got dealt. Because going down this route is the same as, "Why did I get a kid like this at all?" Which is not to say that I never think that, or feel the pain when I compare him to a neurotypical kid. But I do see the comparisons (to neurotypical and to kids with the same diagnosis) as the same thing.

  17. All the time! I am grateful for all that Jonah can do -- I know it could be worse. But I often wonder why couldn't it be better? Why couldn't he be one of the miracle stories where the brain recovered from or compensated for the PVL? Logically, I know the scientific reasons why ... but that doesn't stop the emotional side of me from comparing, wondering, and sometimes hurting.

  18. I go through cycles sometimes. I think, having spent 209 days in the NICU where I was present to *actually* witness the death of two babies (oopsie, nursing staff kind forgot I was in the room in the chaos of the moments), I **try** really hard to hold onto the perspective that gave me.

    Yes, our road with Nik has been incredibly long and painful sometimes, but I try to remember the gratitude for having him. he has completely changed my life; parenting Nik has made me a better person, no doubt.

    Jess, we're kind of in a similar situation with Nik's overlapping issues (very different from Connor's but complex, too). I would say not to look for the kids who have the same constellation of things but to look at each factorand find the commonalities...they are there if we're willing to see them. Of course, it took me until Nik was about 5 to be able to see that. *shrug*

    I find that the moments of comparison and grief are fewer and farther between any more; my energy is so focused on getting Nik's school situation, etc. ironed out that I don't have time for the emotions...they swamp me under BAD when they hit.

    I suppose it will always be this way for many of us. Hugs.

  19. All.The.Time. I know a handful of other ASD moms, and they all seem to have the "right" medication cocktail to allow their kids some normalcy. We have had 3 psychiatrists, 2 psychologists, and a developmental pediatrician all treat him, but no one can identify his mood disorder. He cannot even be in a mainstream school anymore. He has been in a short-term "therapy school" for 1 1/3 school years, and is about to start another school year there.

    I know it sounds odd, but I think Max is around and not "healed" for a reason. He obviously has amazing parents...maybe you are supposed to help another parent who has a child with CP or a brain injury.

  20. I found your blog from that Parents magazine. Your son is so handsome. I am sure that what you are feeling is normal and is ok, don't feel guilty. I am praying and thinking of your family.

  21. everytime i see ANY typical, healthy child it makes me feel a twinge of envy - but than i quickly realize how much i have gained from having my T-man and how much joy he brings me. He will never be able to live on his own, but each day his diagnosis is easier to deal with. It's something that I take each day at a time. I wish we had the happy ending, but we make our own happy endings I suppose - just differently.

  22. Having a child with a no diagnosis/rare disease is tough for me. There isn't really anyone to compare him to. Unlike Jess (because I am far less enlightened), I don't even mean to, but I compare him with other kids with similar symptoms: brain damage, CVI, seizures, liver damage, autism, etc. I am desperate for an idea of what is in store for my son: how long he will live and how far he can progress. Unfortunately, most of the time he is worse, which doesn't give me any clue, but sometimes he is better, which gives me hope that he'll be around a while longer than the doctors estimate.

  23. I could never say it that way, but I would like to reinforce the messages Felicia included in her comment. Contrived media messages contribute to the stress of comparison by parents. Barbara

  24. These comments are so reassuring; there really is safety in numbers.

    I think I was remiss in not mentioning that in the article, the mother did point out that her child is at risk for issues down the road, as can be the case with childhood stroke.

    Felicia and Barbara, overall, I think it is genuinely great that Parents published this article. I don't have any issues with that—quite the opposite, and Barbara, I don't feel this was a "contrived" media message, given that the entire article was told from this mom's point of view. I think they did parents a very big service by spreading the word about pediatric stroke; as the article points out, it can go missed in a child. I was just responding to the fact that Max isn't doing as well as this kid is.... Parents did, in fact, years ago reprint a piece I once wrote for my friend Denise's anthology of essays by parents of kids with special needs called The Elephant in the Playroom. The piece was about Max's challenges and learning to not compare Max to typical kids.

  25. Thank you for being so eloquent. I too go through the envy. I tell myself that on top of ASD, my boy also has dyspraxia. But I can't help the green monster from rearing its head when I see other kids with just one issue or the other and how much better they're doing than my kid.

  26. I loved Denise's book and reviewed in on my blog - in 2008, I think. Blogs are such an honest and available medium.

    There is more truth here on your blog than in the glossy pages (including e-pages) of any 'magazine'. We disagree on whether the article is contrived or formulaic (as Felicia said).

    "My heart sank" - evidence that the article DID add to your comparison-stress. You don't seem to recognize how mainstream publications affect parents of children with SN even in yourself. Albeit, your blog provides a helpful forum to many, more than just you and your family. For that you have my appreciation. Barbara

  27. Thanks, Barbara. My heart would have felt the same if I had read this on a blog. This was a mother expressing her honest feelings, I respect that. Heck, if Max had completely beat the odds, I'd be crowing about that, too. This mother deserves to be proud. I am not denying her that. My reaction was my reaction, not every parent of a kid with special needs would have felt the same. The most important thing to me, again, is that Parents is raising awareness about pediatric stroke.

  28. constantly, and then some. even reading your page just now and seeing the name luc, because my luc is so far from being fine and light years behind other 12 year olds that I don't even want to be near groups of typical kids his age. I take the happy where I can find it, but knowing he'll never catch up at this point is terribly hard, after EI has done so much for other kids.

  29. Ellen, you're the best! I read that article and cheered when I saw the little box with your blog in it. "I know her!" I thought and then realized, that um, I don't really know you (not in real life anyway)...but whatever - details. ;)

    And, well, I had a lot of the same feelings you just expressed when I read it. When Elijah was born, I'd convinced myself that we'd work really hard for a few years and he'd catch up with his peers. It didn't happen. He's three and not caught up (and it was pretty unrealistic for me to hope for that).

    Honestly, that article totally bummed me out. I was happy for that family, but at the same time really sad for our family...sad that it couldn't have been us, that the very thing I had hoped for hadn't happened to us.

    And I don't feel any sense of pride when Elijah is doing better than other kids with the same diagnoses either. Instead, I'm struck with guilt that they might be looking at us and thinking, "why couldn't it be my kid who's walking? Why them and not me?" (Much like how I felt when I read that article).

    These emotions we feel are so complicated and real and necessary. We're not alone in feeling them and we're not alone in trying to work through them. Our struggles may not all be the same, but they are struggles nonetheless.

  30. I agree, Ellen. I read the article, and I think it is a sensitive portrayal of one woman's experience dealing with pediatric stroke and not meant to be a generalized article making light of the medical condition.

    In my opinion the more publications out there that raise awareness of children with special needs, the better-- if nothing else they get people talking!

    I tend to get more concerned, to tell you the truth, about the way people with disabilities are portrayed in television roles, but I've been happy to see in recent years that there are more and more great role models for our kids appearing on film as well.

    I think the great thing about magazine articles is that they reach so many people, and everyone is allowed to have their own reaction to what they read. Sure, they tend to simplify complicated issues sometimes, but they've only got so much space to write and in some ways that's part of their appeal. I bet there are a bunch more people walking around who know kids can have strokes that weren't aware of it before picking up that issue of Parenting!

    That makes your life and mine easier.

  31. Not only do I compare my son w/ ASD to others, but I will also compare how our family is coping w/ how other families cope. There have been some good things come from the family comparison -- I learn new tricks. I think the one hard part is that my son (almost 8) still isn't talking, at all.

    The one big thing that I have learned not to do is to read those mom-written books written by moms who devote every waking and sleeping moment to their child w/ ASD and 'ta-da, thier child is "cured". It's not me, not my son, and I refuse to put myself through the guilt trip.

  32. In the interest of promoting awareness of Marissa's disease, I entered over at best baby blogs- I won't link it here, but if you're so inclined, you can find it.

    I've been told by a few people clicking that I didn't belong in that index- that I'd be much happier on some sort of imaginary special needs index. Not hatefully meant, but I think that the person reading just wanted happy, healthy, and hale baby pictures.

    That said, now they're aware of infantile spasms. Mission accomplished.

    So, yes. Comparisons are inevitable.

  33. I read the article and saw your mention! I have to be honest, I wondered at the time I read it how you felt. The boy had such a great recovery which is obviously awesome, but I wondered how it felt to you to read it.

    My daughter is undiagnosed overall, but labeled with CP and microcephaly. Most kids with micro are more functioning than her. I think we ALL compare our kids. And it SUCKS.

  34. OMG, yes! I don't like to admit that, but I DO! I, too, have stopped comparing Emma to well kids, but I cannot keep from observing other kids with CP and being concerned as to why they can do more than Emma. Frankly, most of them can, as Emma is pretty involved on the motor front and speech front. I try to be grateful for what we do have, but I keep questioning what I did not do that maybe I should have or what have I missed etc. I logically know that Emma's brain was so very hurt--more hurt than most--but still. Yeah, I get it!! I am one of the ones that look at Max and think, "I really wish Emma could walk like that..." I never give up though. That doesn't keep my mind from all that pondering though.

  35. Sorry-- that should have been "Parents" and not "Parenting" magazine. Maybe I should read my own comment before I post it!

  36. All the time. And I still compare to typical kids, so you are ahead of me there. I hate that the article said "with early intervention"...well, we've had early intervention since my daughter was 1 week old and she still will always have issues, because her hearing and vision and balance and all the things that are "wrong" will never be right, no matter what.

    I've begun to think in terms that I DO have my happy ending. I have my daughter. She is here. She is alive. She is thriving. And that makes me happier than I can ever write or express.

    Hugs, Ellen. We've all been there.

  37. This is me, everyday, too many times to count. Looks like I am in some great company. = ) In our case, some major women's mag had an article about a child with the same (possible) diagnosis as my son, and of course the child in the article had a happy outcome. Our good friends brought it over to show us, but even then I was concerned that our child was not that child. Hate to say that I was correct (and then some).

    The hardest part isn't what my son will never be able to do vs other similar children, but how much his disabilities affect what outings/experiences our other children can have. That's when I want to whine, and sometimes do whine. And then I feel like a jerk for whining.

    I don't expect we'll ever have a diagnosis, so my goal is to figure out how to do things that we see all our friends doing (such as camping, but with wheelchairs and medical devices and items that need refrigeration!...) and then if we pull if off, share the info. I wonder if the major mags would want to print that. = )

  38. My kids are neuro-typical, so I'm thinking the question doesn't exactly apply to me. But I read your blog and I read the article and I also felt awful. Not for that family, but for you and all the other moms and dads who may read the article and suddenly get to that particular paragraph and get smacked in the face with someone else's happy ending when their own future is filled with worry.

    But if you don't sometimes wish your life were different, you're probably a robot. Real people have real feelings. (((hugs)))

  39. I thought about this post and had to reply again. I don't just compare my daughter to other kids with similar disorders, I compare her to almost any other disabled child! My friend has a 24 weeker who is now almost 5. She walks and eats by mouth now, even though she's blind and doesn't talk. It is AWESOME that she walks and eats, but what the hell - she weighed 1 lb 4 oz at birth! How can she do things that my daughter can't do? My daughter was 5 lbs at birth. It's stupid, I know. Or how about reading about near drown kids who miraculously recover (and I'm not being sarcastic - I am BLOWN AWAY by these amazing stories) with no lingering affects? It hurts my mommy heart even though it makes me feel guilty to admit it.

  40. Sweetie, the point I didn't make, I guess, is that PARENTS magazine wouldn't have chosen a family for their story if there wasn't a happy ending already up in there. You think they're gonna pick fat mama with the bad dye job and the abusive drunk of a husband who have The Uncute Kid Who will Never Get Better? The only way that would happen is if the mama lost weight, the husband went to rehab, and Jeeeesus came down and zapped the little kid into health and cuteness--It's a MIRACLE!!! If there's no "arc" of improvement, there's no story, as far as they are concerned. Also, if the kid ain't cute, he's not in the mag, either. There's a place for contrived, formulaic crapola (waiting rooms, airports, bus stations) but the blogs are better, and most of them (not all--there are a few "Look at my perfect life" ones out there) are more honest, too.

    Give me the "messy" ending, or no ending at all. After all, life doesn't have a happy ending, unless you're a total a-hole--in that case, everyone's happy when you're dead! That's not the kind of happy ending I want, I will go for plod, plod, plod and lather, rinse, repeat over "He could not pick up a cheerio, but now YOU CAN NOT TELL!!!!" Please! Like that's the goal--sweep it all under the rug! You're only successful if you CAN NOT TELL! Everyone else falls short, no matter how much improvement happens!

    But hey, if that kind of stuff brings more people to where it's kept real (like here), then it is all good, now, isn't it?

    Like I say, Be Water, My Friend.

  41. Ellen I thought of Max immediately when I read that article in Parents Mag. I wish they would publish stories that don't always have a happy ending and how "we" as families deal with life!

    I know you are a vetern at dealing with emotions like this as Max is so much older than Vinny. I still and figure I will always struggle with this! I am so happy for other kids with his same syndrome that are more advanced then him, but secretly I feel those pains in my heart start to creep up!

    Every day when Vinny smiles at me, I am reminded that I am lucky to have him healthy and happy and to just try and enjoy him for how he is!


  42. Of course. There was a story not too long ago about a boy who had a near-drowning accident and made a COMPLETE recovery. I couldn't even deal. We did not get a "happy" ending in the eyes of the media, because you'd never find our family in the news like that - most people wouldn't consider us a "happy" ending. I wish it had been us, but it isn't.

  43. I have to stop myself comparing my older autism spectrum son to my younger 'neurotypical' son all the time. They are so different, and it does make you wonder why.

    I try not to compare. I really try. Because, for me at least, it seems kinda like picking at a scab. It's not pretty and it's not at all healing.

  44. I have a game I play when I'm in a bad's called find all blogs about kids with PVL, look back to when they are my son's current age and compare where they were then to what they are doing now. I like to do it in the middle of teh night to hide it from my husband. I'm also sort of embarrassed to admit how good I am at it. Locating the birthdate or the month that they have their IEP meetings, then look back in those months in prior years.

    But, when I read this comment, it made me think more so about our official meeting with the head of our NICU to give us the overall picture on our son after his event, telling us about his extensive brain damage, and actually, he was a real positive guy but sort of in a harsh way...telling me to stop mourning and all about plasticity, etc. etc. I remember when he was finished with his speech, I said... OK, neuroplasticity, I want to go that route, that sounds do we do that? Silence.

  45. All the time! I used to feel guilty about my perfectly normal 28 weeker (who's now almost 8) who went thru so much during the first year of her life, but now is amazingly normal (and in fact quite tall for her age!) Now with my little Jack, I compare him all the time to other kids and wonder "when will he sit?" or How come that kid can do this but jack can't? However, with PVL (his medical diagnoses at birth which caused the CP) I know it's common to have WAY more health issues than he I know I'm also very lucky.

  46. I'm still learning not to compare him to other regular developing children let alone other children with similar things going on. I'm still searching on how to make peace with this.

  47. I just wanted to thank you. Reading your blog today, while I was catching up on everyone, was a tipping point I needed to take a step I needed to take.

    Thanks for being so open and means a lot to many people. Especially me.

  48. Oh @ anonymous a couple of comments up. I play that blog game as well! Glad I'm not the only one ;)

  49. are you kidding me...we all compare, but i think the most important thing, though we compare progress is to never compare GRIEF! we all grieve the losses that our precious babies have experienced because of their issues, their strokes, their retardation, their syndromes, their autism, their cerebral palsy, and on and on...whether they have a learning disability or are wheelchair bound for life...they are OUR baby and for them to suffer ANY pain, any setback...we, as their mother, we grieve it, for them and for us! but it would be dishonest to say that we do not see the success stories and long for that to be our baby, our daughter, or our, bring down the hammer on the guilty side for those "sins" for me, because i would much rather be found wanting there, than to be found guilty of not wanting everything for my girl! you are a delightfully human mother, loving in every way and i applaud your vulnerability in writing this post! (i met you at the billmelater booth at blogher with sara parker - fyi!) thanks!

  50. I wanted to add somethign to my earlier comment:

    I think it's human nature to compare and to grieve the loss of what we perceive as our "perfect" or "normal" child. I don't think it's fair to blame the media for that. I know there have been many cases in my own experience where health care practitioners have, with the best of intentions, shared stories of hope, or "successes" with me. I think those who don't walk in our shoes are so uncomfortable with the idea of how they THINK we handle it (as in "OMG, I don't know HOW you do it! I could NEVER...") that they cannot fathom anything less than a happy ending being okay. I think the media is merely a reflection of what the majority of society wants to hear. Do I think it's a good thing? No. But I can't entirely blame the media.

  51. I know. We were supposed to see changes to, by this age: not regression. WHich is what we have.

    It's one thing to have the early childhood diagnosis, then you deal with that, but when you've spent over 10 years "hoping" and this happens?


  52. Yes often. I don't know other kids with such severe problems as Smiley - I know they exist, but they seem to be hidden away. And now my aspie boy seems to be getting 'worse' all the time, and you just wonder where is it all going to end?

  53. Hope this comment doesn't get lost in the mountain above it but we compare too and we grieve for the little 4 year old who should be chattering and running and whining and peeing on the toilet seat.

    But we also look at Ashley as a blessing. A gorgeous loving boy who befriends everyone he meets with just a look. Once you accept his development is oh so slow, every milestone is a victory.

    I'm not teaching my Granny to suck eggs here. It's the half a glass full thing. Sometimes we all get lost in the comparison game and need to refocus on the sweet chunk of humanity who is enhancing our lives.

    Thanks for the blog. XX

  54. yup. it's hard. when I see worse kids, I practically break out in tears, thinking about what could have been. Not immediatley. I smile at them because they are just doing what we do, taking one step at a time.
    the majority of kids we see or that I read about that have special needs seem to be able to do much more then LJ. but then I read a few posts here and there about certain surgeries or illnesses and I remember to count my blessings, because LJ has been a pretty healthy kid.

  55. Yep... and nice to know I'm in good company!

  56. Do you find yourself looking at your child and visualizing him NT, how he'd behave, how he'd sound, what questions would he ask, would he be really funny or good at sports, perhaps a great artist? I do this too often, especially now around birthday-time.
    My boys were hospitalized for a couple of years, so many preemies came and went and I felt the bite each time. Another trigger for me is seeing NT twins. The other day, in one single outing I'd seen at least 10 sets of typically- developing twins. Waltzing past us with their matching clothes, staring at my dudes.
    No doubt I feel envious. Then I feel bad for those feelings, then sad, sorry for the boys, sorry for myself, sorry for my own parents who feel sorry for all of us... and then I go over and kiss my boys on their soft, chubby cheeks and feel better all over again.

    We just do, and they just are. I think the most painful thing, and one of the reasons I seek bonding with alike parents, is the future. I'm already a slightly older mom. I already feel worn-down. I still have a long time to go to have these feelings and intrusive thoughts. And then I'm too old, and then what?

    Oh big hugs, Ellen. Hugs for Max too, for being so awesome and especially handsome. And hugs for all the moms/dads in our boat. Oh hell, hugs for everyone!

  57. Kuddo's for you for getting a mention in Parents. I read the article and had many mixed feelings about what was written. It is amazing that their child has been able to overcome many of the issues that the stroke had caused. I just wonder if it would give parents reading it false hope and a sense that 'therapy' will fix their child and that if there was not progress it was from a lack of their doing.
    I believe very strongly in early intervention and how crucial it is but it will not 'cure' all our children. I wish they had added another story as well of a child/family who continue to be affected by their child's early brain damage. We could give them a couple names of some cute kids we know.

  58. the comparing is hard, because it's totally human nature and there's no way not to do it. But the guilt!

    I do applaud Parents for running the story, but I also think magazines look for stories with a neat happy ending.

  59. I have a child, a boy, with Autism. You betcha, I compare. Usually its, I hope he never develops elopement...I can't handle that, I can handle pacing. Thank God...
    Everyone compares, its called keeping up with Jones. It happens.
    I often wonder what he would be like as NT (neuro-typical). I used to more so than I do now. I say that because I have noticed how much my husband has ASD traits. He has learned to cope and blend and bend into life quite sucessfully. I have have those same hopes for my son, to be like his dad. Besides, ASD can be pretty cool, when you let it, and when others get it.

  60. All the time. It's so hard and I feel bad for doing it but, like you, I dont' wish anyone harm with my thoughts. As Green Girl and other moms said I do look for adults with similar diagnosis and hope more will speak out. Moms and kids alike need to know the varied levels of success that are possible.


    Especially my Mom ... I do it too. I get annoyed when other parents say, oh they did this and that, why don't you try it?
    We tried it...our child is different. It didn't work.

    And our heart breaks that it didn't ...

  62. Do you ever compare your child to other kids with the same diagnosis? No because I dont want to sound like a ungrateful whiner. Spastic monoplegia is so mild. Amelia is doing well despite her disability.
    When I'm down, I compare her to other folks with other kinds of spastic CP. I've found it reminds me to look beyond it and realise she's doing well.


Thanks for sharing!

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