Finding Ninee » Sharing our parenting and special needs stories with heart and humor.

Whether to fix the child or fix the world

If you had a choice, would you fix the child or fix the world? If I had a magic wand, the first thing that comes to mind is that I’d “fix” my son.

A dozen others. A billion others. An infinity others. In fact, I’ve said before that if I could have a superpower, that it’d be to have magical healing powers.

I’d like to fix all kids who struggle with words. With playing. With walking. With illness.

With anything that makes life harder and less magical for them. Fix what makes them feel bad and make the pain go away.

Huh. Fix what makes them feel bad. Developmental delays and autism aren’t like cancer or childhood illness or accidents or the too-many other badthings that children face every day that bring them physical pain. Which makes me wonder.

Having a magic wand and being able to heal children with cancer makes me wonder about fixing my son.

When it comes to kids like mine, perhaps I should begin by first asking myself why I want to fix him.

Who would I be fixing him for? Would I be fixing Tucker for Tucker?

Certainly it’d be wonderful if I were able to grant him an easier time in dealing with life’s challenges. With speech. With self regulation and anxiety.

With not having to face bullies who may berate him and make him feel less than.

If I were able to fix my son, would I be doing it for me?

For the fact that while pregnant, I certainly never expected delays and therapy and not watching him grow up the same way that his cousins, brothers, and friends are growing up.

TuckerSummer2013 sun in hair

Maybe. I’d like for Tucker to not have to struggle with language. I’d like for him to not be developmentally behind his peers.

And that’s okay. That, and fixing cancer and other childhood illness is what having a magic wand is all about.

Of course I want to make Tucker’s life better. Easier. I want to create a life more easily navigated by him.

One in which, if he became lost, he’d be able to tell a policeman who I am and where he lives. His name. I want to know he’ll be okay. Independent. Able to love and laugh and live and take care of himself once I am gone.

But I think I need to ask myself something important.

Would my son want to be fixed?

I don’t know. What makes him him? Would “fixing” him take away Tucker’s Tuckerness?

Maybe, while holding my magic wand, I should instead be asking myself how to fix the world.

If I could fix the world and have it be more slow, and compassionate, and accepting and celebratory…would I still want to fix my son? If I knew that no matter who he is, and who he will become, that he will be okay and embraced, would I want to fix him?

On one hand, I don’t want to change a single gene in my boy’s body. Except for when I want to for this world. I want to change him, to fix him, because of this world. This one.

Because this one, right here, isn’t ready to be okay with him if he decides that herding grocery carts is the greatest, most fulfilling joy of a career that he could ever have.

Tucker Water Pool Summer 2013Whether to fix the child or fix the world?

If he considers himself lucky to do that, and can support himself doing so, why would I change that?

Or him? So that he can “fit in” with the rest of us who don’t ever feel good enough at our big important jobs anyway?

I think I’d rather fix the world.

I think I’d rather fix the world to be more accommodating for my son and for all developmentally delayed children. ALL CHILDREN.

Because maybe they’re happy being exactly who they are.

And who am I – who are we – to say that there’s something wrong with them? Something broken? We’re not talking about curing cancer – that’s different. We’re talking about whether to “cure” developmental delays. And the fact is, I’m not sure there’s anything broken there.

Because this little boy? He’s pretty perfect exactly as he is.

Tucker May 2010 on Grass

What do you think? Would you fix the child or fix the world? And if you had a magic wand, what’s the first thing you’d do with it?

This has been a Finish the Sentence Friday post. I re-purposed this post from 2013 for this week’s sentence of “what moves me,” brought to you by my fabulous friend Hillary. Please check out her post tonight. She has an important message, and she’s completely awesome. 

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by Kristi Campbell

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  • Dana - I’d fix the world too. Yes, there are things that need to be fixed – disease, illness, hunger, war – but there are many things that can be fixed with a different perspective. That’s what Our Land is all about,right? And yes, Tucker is perfect exactly as he is.September 5, 2013 – 10:08 pmReplyCancel

  • Stephanie @ Mommy, for Real. - That was fantastic, my friend. I hope you are proud of this post- you asked some really challenging and deep questions. I loved it.September 5, 2013 – 10:08 pmReplyCancel

  • Considerer - He’s perfect. You said it best 🙂

    Long live Our Land.September 5, 2013 – 10:12 pmReplyCancel

  • Janine Huldie - Totally wish you could fix the world and your magic wand would do wonders in healing for sure. Sounds quite perfect and really wish this was possible now Kristi!!September 5, 2013 – 10:13 pmReplyCancel

  • Kerri - Oh my, you brought me to tears. In a good way. Because the minute I saw you had the same thought as me, fixing our awesome kiddos I had the same guilt. They are not broken or dying. It’s really not them that needs to be fixed but the world.

    I wonder how Kerry would answer your question, if she would wand away her CP?

    The thing that is awesome? You already waved your wand. You created Our Land and am changing the world one post at a time.

    Adore you my sweet friend.September 5, 2013 – 10:19 pmReplyCancel

  • Emily - Yup, I’m totally with you on fixing the world. I’ve had these discussions a lot about “fixing” my child. We reached the point with him a few years ago where we could keep trying to “fix” him (with more therapy) or just let him be who he is supposed to be. If that means he doesn’t want to make friends or if that means he is always going to be a bit of a goofball, or is always going to ask unfiltered questions, or not make great eye contact, so be it. Sometimes it’s just so hard to distinguish what is just his natural personality and what is the developmental disability? And in the end, does it really matter? I think you’re right that to live in this world as it is now, I suppose it does matter up to a point. But, I do hope that changes — soon. And well, if I had a magic wand, you know what I’d do right this instant and I appreciate you acknowledging that that is what the wand is for…completely agree. Wonderful post as always!!September 5, 2013 – 10:26 pmReplyCancel

  • Katia - You ask the readers for their thoughts at the end of this wonderful post. I’ve never had to ponder on that dilemma, but you are such a sensitive soul and such a gifted writer that I got so engaged and went through the exact same thought process, identifying with every word and emotion and leaving the post thinking I, too, would probably fix the world.September 5, 2013 – 11:09 pmReplyCancel

  • K - Such a beautifully written post, Kristi, and such a multi-layered question. I’ve thought about this for nearly my entire life. I love, love, love your idea about fixing the world, and I second Kerri — you are already working your magic…you are already making the world a more accepting place.

    With regards to whether I would fix my disability if I could: my mom always talks about there someday being a cure for CP, and I remember one time when I was eight years old, I told her that I wouldn’t take it if there was one. She was shocked and tried to convince me otherwise.

    And then a couple weeks ago I walked into the living room and found her crying and shaking. And oh my God that is not something that I ever, ever want to see again. She had seen a commercial where a premature baby stopped breathing and had to be resuscitated. I could tell that she was trying to keep it together for my sake, and it hurt.

    “That baby looked just like you,” she said. “They should have given warning…they should have given warning…” Sitting there and watching her shake like that…it’s haunting me and I can’t help but wonder if my desire to keep my CP is selfish. Up until two weeks ago, I would have totally said that I would keep my CP and work on changing the world…I’m still all for changing the world, but if taking away my CP meant that I never had to see my mom crying and shaking like that ever again, I think I would choose the cure. xoxoSeptember 6, 2013 – 12:15 amReplyCancel

  • Lanaya | Raising Reagan - You are amazing! The fact that you would use your magic powers and do for others is awesome.
    Your little boy is so special and I love your big heart.

    My magic wand consisted of transporting myself to anywhere in the world whenever I wanted. {Mostly beaches and included lots of liquor — so when you are done healing and Janine is done cleaning … y’all can come with, Mmmmk? 🙂

    ¤´¨)
    ¸.•*´
    (¸¤ Lanaya | xoxo
    Raising-Reagan.comSeptember 6, 2013 – 12:27 amReplyCancel

  • Louise - I love this. And agree. I think I’d wish to make the world a more understanding place of others and differences too.September 6, 2013 – 12:33 amReplyCancel

  • Jessica - This is just so thoughtful and beautiful, Kristi. It’s a tough question. I think changing the world would be a great thing. Get people to start accepting others as they are, even if it’s not “convenient” or comfortable for the rest of us. But I think it would also be nice to get rid of some of the frustrations and anxiety, etc, that wouldn’t necessarily be cured by changing the world. If we could wave a wand and make everyone happy and healthy, that would be just perfect.September 6, 2013 – 12:41 amReplyCancel

  • Kristi Campbell - Dana,
    Yes, that’s what Our Land is all about and yet cancer or other childhood illnesses can suck it because they totally need to just go away. It’s about fixing the world, right? Thanks for getting that.
    —
    Stephanie,
    Thank you.
    Thank you huge. —-
    —-
    Lizzi,
    Long live Our Land.
    —-
    Janine,
    Yes, Me too. I wish it was perfect.
    —September 6, 2013 – 1:34 amReplyCancel

  • Misty @ Meet the Cottons - it’s probably selfish, but i’d use my wand to make patty a regular kid without any need for afterschool therapy and special education. maybe then we could spend our afternoons at gymnastics or dance class. i wouldn’t want to lose my sweet, loving kiddo, though. so if i couldn’t keep that part of her, i wouldn’t change a thing. i wouldn’t even try to change the world.September 6, 2013 – 5:32 amReplyCancel

  • Southern Angel - As a mom to 2 boys with different issues, one is bipolar OCD with generalized anxiety and the youngest is a high functioning autistic, I get this. However, I would help my bipolar son with rages, especially now that he is a parent. Patience, and understanding there is NO such thing as a perfect parent or child. We are both struggling through trying to keep the other afloat. This was absolutely beautiful..September 6, 2013 – 6:02 amReplyCancel

  • karen - OMG…wiping away my tears…wow…what a post babe. I wonder if kids accept who they are better than we as parents andadults can?

    I think changing the world and their perception of what is perfect, beautiful, acceptable, and kindness is a good choice. I think you and Tucker are so blessed to have each other,September 6, 2013 – 6:06 amReplyCancel

  • Michelle Liew - I agree, it’s the world that needs fixing…..the world and all it’s pre-conceived attitudes and notions!September 6, 2013 – 7:08 amReplyCancel

  • TK - Yes, he is perfect and yes, we need to fix the world. We definitely need more compassion, more understanding and more love – especially towards our children. #FTSFSeptember 6, 2013 – 7:26 amReplyCancel

  • Dani Ryan - This is such a beautiful post.

    I’m with you – I’d fix the world. Because that boy? He’s pretty darn special (and cute!).

    xoSeptember 6, 2013 – 8:40 amReplyCancel

  • Linda Roy - I would fix the world. The world completely needs fixing. We need more kindness, compassion and understanding.September 6, 2013 – 9:44 amReplyCancel

  • Tamara - As far as I’m concerned, the only thing missing from his life is that I’m not following him around with a camera! Someday.
    The problem with magic wand thinking is that I’m such a good daydreamer that I can start getting little tingles and rapid heartbeats from dreaming of impossible things. I’d like to believe they’re not all impossible.
    If I had a magic wand, I’d make all of your blog posts go viral. Like yesterday.September 6, 2013 – 9:45 amReplyCancel

  • Kathy Radigan - Beautiful post!! I have often thought of this myself. I have to admit that today is a rough day so it’s harder for me to answer. Thank you for your words!September 6, 2013 – 9:56 amReplyCancel

  • Kristi Campbell - Kerri,
    Kerry actually commented and she’d fix herself but only for her mom. Sigh. Which means NO – she should stay the same, right? And I adore you,too…
    —
    Emily
    “And in the end, does it really matter?” Yes. what you said. Because who can say what is personality and what is a delay? And Friend, I’m totally with you on what YOU want to fix. Yes. Let’s please fix that. And soon.
    —
    Katia,
    Thanks, you. I think the world is the choice, too….
    —
    K –
    Ok. Wow. First,I suspect that your mom was shaking and crying more over the idea that she could have lost you than over your CP. If the only reason to fix yourself is for her, please don’t, when you get that magic wand. Without CP, would you be blogging? Sharing your amazing heart? Be so wonderful and compassionate? Maybe. But why risk it? I say that you’re perfect exactly as you are, my friend. Totally and fully.
    —September 6, 2013 – 10:10 amReplyCancel

  • Kristi Campbell - Lanaya,
    Yes! Your place sounds perfect! Janine was cleaning? Hehe – haven’t read yet. We’re out of town and (wait for it) have NO WIFI. I HAVE NO WIFI! I have to borrow MIL’s computer. Ouch.
    —
    Louise,
    Yes. Perfect.
    —
    Jessica,
    Yes, it certainly would be nice to get rid of anxiety. And I’m not just speaking about our children any longer. Thanks, you.
    —
    Misty,
    I don’t think that’s selfish at all. I think wishing Patty had gymnasitcs instead of therapy is perfectly fair. But yeah, how much of that is her personality, too? Sigh. Hugs.
    —
    Southern Angel,
    Wow, yeah, having rages as a parent is hard. I think I’d fix that as well. Such a hard question. I mean what is perfect really? None of us are truly perfect people or parents, even though we may be “typical.”
    —September 6, 2013 – 10:18 amReplyCancel

  • Surprise Mama - This beautiful post made me cry. It is so wonderful. All of a sudden the life that we are given (no matter how imperfect) sometimes seems like the perfect life after all.September 6, 2013 – 10:56 amReplyCancel

  • Jamie@SouthMainMuse - This was so beautiful. We as parents and people need to appreciate the uniqueness of others. Of course the world will always intrude but the older I get, the more determined I am not to let the world affect my peace and joy. And appreciation of every person in all their glory.September 6, 2013 – 11:03 amReplyCancel

  • Kate - I’d struggle with this too- but if you fixed the world maybe that would fix all the children with it? Moral dilemmas!September 6, 2013 – 2:37 pmReplyCancel

  • Lisa @ Golden Spoons - Kristi, this is just beautiful! I think fixing the world is a wonderful aspiration and I wish it were possible. Life would be so much better for everyone!September 6, 2013 – 4:38 pmReplyCancel

  • Lori Lavender Luz - So very thought-provoking. You hit on some big points. One is delineating between fixing for you and fixing for Tucker, and the difficulty in being able to tell the difference. Two is this: “Would fixing him take away Tucker’s Tuckerness?” — which makes me wonder just what is a person’s essence and what is not. And three, I love where you ended up, with this: “I think I’d rather fix the world.”

    Well done, Kristi. Making me think on a Friday afternoon.September 6, 2013 – 4:39 pmReplyCancel

  • Deb @ Urban Moo Cow - I just left this super long comment on Kerri’s blog.

    I think you are being too hard on yourself. Of COURSE you don’t want your child to struggle more than he has to, more than other people. Even if the world were perfect, even if you could fix everything and make the world perfect for him, he would still struggle with *internal* things. No one wants to see her baby struggle. Not now, not ever.

    But yes, if you could fix the world and make it better, please do. 🙂

    And I just have to say again, although I know I always say this — he is truly, stunningly beautiful.

    And now I’m crying again. 😛September 6, 2013 – 9:21 pmReplyCancel

  • MJM - There is nothing wrong with Tucker…it’s the world that sucks donkey. So much hate in this world, it’s really sad and very unfortunate. Great piece as always my friend.September 6, 2013 – 10:52 pmReplyCancel

  • Sarah Almond - That was a lovely sentence to finish, and you did it so well. 🙂 Your love for Tucker is amazing (and you are amazing!) He is perfect…September 6, 2013 – 10:57 pmReplyCancel

  • Betty Taylor - I so agree that it is the world that needs fixing.September 6, 2013 – 11:29 pmReplyCancel

  • Shay - Dammit, Kristi, you’re supposed to be just another skanksta like me, but you keep getting me with these hugely profound posts. How many times have I used “profound” to describe your work? But it’s so true. I found myself nodding so many times throughout this post–and you made me think, too. Thank you!September 6, 2013 – 11:57 pmReplyCancel

  • Galit - Is it really an either/or? Can we help children overcome those aspects of their disability which are actually disabling, and at the same time work to fix the world which treats difference as less than, and not just in math? Whether gender or race or religion — or disability — the world needs a LOT of work on this. That doesn’t change the fact that speech difficulties and cognitive struggles — like heart defects and vision/hearing issues — do limit people’s options in navigating the world. Right now they are adorable little kids, and it is easy to say that they are perfect as they are — which is true! But many older people with intellectual disabilities struggle mightily, and can be very unhappy indeed if they are dependent on others for their daily care. They, like typical adults, wish to be independent and productive members of society. That is why we give them therapies and specialized nutrition and so on, in order to maximize their potential once they are out in the world. If we can achieve the same result with a medical “magic wand”, why would we not?September 7, 2013 – 2:55 pmReplyCancel

  • Kenya G. Johnson - I would want to fix anyone who was in pain. But in the case of special needs I would want to fix for world. Though we are a just a dot here in the blogosphere, I think you are doing and excellent job sharing the knowledge to fix us (fix the world).September 8, 2013 – 6:39 amReplyCancel

  • Sarah | LeftBrainBuddha - Oh, Kristi, I knew this would be good. I totally agree with you, we need to fix the world, we will always have our differences, whether it is developmental or political or physical or spiritual, and to have a world where all of that is embraced would be amazing. I have taught many kids with developmental delays or autism-spectrum disorders, and it IS hard to tell what is the delay, and what is them… because they are just them. And sometimes, as teenagers, they have an honesty and genuineness about them that is beautiful and I wouldn’t want to “fix” and I imagine their parents wouldn’t want to either. Another fantastic post, lady.September 8, 2013 – 9:31 amReplyCancel

  • Kimberly - I cannot even put into words how blown my mind is on your perspective on this.
    Can’t.
    All of our children are perfect because they’re humans and humans have flaws.
    It’s society that needs the fixing.September 8, 2013 – 4:26 pmReplyCancel

  • Tatum - A great piece on such a difficult subject. I do often say that if could change it for Owen I absolutely would…because I think that some day he’ll wish he was like the other kids on the playground, or the ones eating at the table while he’s pour formula in a tube. However, your point is so important – how can we expect our kids to accept who they are if we want to change them…even if our desire is because we think it’s what they want? This parenting thing can be really heavy sometimes, can’t it. thanks for starting the conversation, Kristi.September 10, 2013 – 12:48 amReplyCancel

  • catherine gacad - this reminds me of a moment during the fertility workshop i went to in woodstock last weekend. the workshop tries to bring to the forefront all the “orphans” or issues that we have in our lives that are blocking us from reaching our full potential (i.e., motherhood). this one woman talked about how her orphan is that her brother has cerebral palsy and hence she’s scared of conceiving a child with a disability. the instructor led her in a chant: “sometimes bad things happen to good people. sometimes children are born with illness and disabilities. my brother is going to love my baby so much. my baby is going to love my brother so much. there is so much love to go around.” watching that was very cathartic. maybe things don’t happen exactly as we imagine them in our head, but the process and the experience and the people can be absolutely perfect regardless.September 15, 2013 – 12:55 amReplyCancel

  • Dana - Wow, I was the first commenter almost four years ago! I’d say the same thing now as I said then. Tucker is just as perfect, just four years older. How did that happen??July 7, 2017 – 8:02 amReplyCancel

    • Kristi Campbell - So cool that you were the first commenter back then! That’s when my comments were all messed up and I couldn’t reply individually to anybody. And yeah, I think he’s pretty perfect.July 7, 2017 – 4:21 pmReplyCancel

  • Kerry - I struggle with this question a lot, for myself. If I could, would I make myself have perfect vision or would I make it so I could live in a more accepting world? Hmm.

    Good one to repurpose today Kristi, in the times we live in.July 7, 2017 – 9:09 amReplyCancel

    • Kristi Campbell - Thanks, Kerry. It is an interesting question, right? I mean, would you still be you if you had perfect vision? How much of who you are has to do with not having it? Hmm.July 7, 2017 – 4:25 pmReplyCancel

  • Kenya G. Johnson - I thought this sounded familiar with the magic wand. So much has changed since 2013 and though my answer is the same I feel more deeply about the world needing to be fixed. For starters for November 8, 2016, whipping up some magic for that day so the results would be different. The world has been contaminated more so in that time and I’m sure the magic wand would work wonders.July 7, 2017 – 11:26 amReplyCancel

    • Kristi Campbell - It’s scary how much the world changes based on that one day… I wish the results were different and am STILL in shock about how bad this guy is! Disgusting 🙁
      I wish I had a magic wand.July 7, 2017 – 4:27 pmReplyCancel

  • Karen - Such a touching post. I think you worded it all so well and I would have to agree.July 7, 2017 – 3:50 pmReplyCancel

  • Marcia @ Menopausal Mother - I’m with you—-I’d rather fix the world. People need to be kinder & gentler with one another.July 7, 2017 – 10:55 pmReplyCancel

  • Twindaddy - It’s a tough question. I don’t have an answer right now.July 8, 2017 – 10:30 pmReplyCancel

    • Kristi Campbell - Me neither. I’m old, to have this boy… not that that’s related to this, but more to you turning 40. I had Tucker when I was 40….wow. Life is weird.July 8, 2017 – 11:29 pmReplyCancel

  • My Inner Chick - ***I don’t know. What makes him him? Would “fixing” him take away Tucker’s Tuckerness?***

    LOVE! Love! love!

    Yes, wouldn’t it be wonderful if we could accept people for who they were and just fix the f*cking world?

    Because man oh man, it needs LOTS of fixing.

    I’d take that wand and slam it over what’s his name’s head. You know who I’m talking about.

    Luv u.July 10, 2017 – 1:56 pmReplyCancel

    • Kristi Campbell - I do know, and that would be one amazing and wonderful thing, my friend. YUP. It needs so much fixing. But you’re doing fixing, I think. Maybe, all of us are, in a way.July 10, 2017 – 11:47 pmReplyCancel

  • Linda Atwell - Oh, Kristi:
    Lindsey tells me all the time she wishes she didn’t have disabilities. At least the ones that keep her struggling so. And yet I do love your point about changing the world. Maybe with a magic wand, we could do a little of both! But it is so difficult for me to see Lindsey suffer/struggle. I wish she could reason better because that is also difficult.July 15, 2017 – 12:36 pmReplyCancel

    • Linda Atwell - I didn’t actually finish: Just one more line! (or several!)

      I say in my book that if I did have a magic wand, I would wave it like a madwomen. I think that is what I would actually do. But then again, if I truly had those powers, I’d probably be very careful how I used them. Hugs! And beautiful post, as always.July 15, 2017 – 12:41 pmReplyCancel

    • Kristi Campbell - Linda, I wrote this post a few years ago, and re-posted it last week because I sat at the keyboard and had NO IDEA what to say about “what moves me.” My attitude has changed SO MUCH about Tucker, and all of it. I don’t know what I would do, after spending the last two days at camp with him. I don’t know.July 16, 2017 – 12:03 amReplyCancel

    • Kristi Campbell - I might wave it too, now. Like I said, I posted this very early on, and things have changed but I don’t know what to write, now, while keeping Tucker’s privacy but also keeping help if it’s helping.July 16, 2017 – 12:04 amReplyCancel

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