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

On Wondering, The What If’s and A Little Boy Who Says His Mouth is Broken

When I’m running errands, sorting through bills, or trying to remain present while playing with my son in grass and gravel, I wonder. I wonder about the what if’s and about the lives I am not living because I mostly live only this one.

I wonder about the people I’ve walked away from, and about those who walked away from me. I wonder why some of them remain of me while others are blurry and nameless when once, they felt like everything. Or, at least something. I wonder about the lives I’d live if the word “if” became the word “is.”

I wonder whether a more perfect version of myself – the me that lives between perpetually fresh sheets, a toilet without little-boy pee on the rim, and who doesn’t forget what day it is – is real, somewhere, out there. Whether a version of myself, doing all of it better and more efficiently exists and needs to be realized through meditation or more sleep. I wonder if she’s trapped inside of my mind noise, simply needing more quiet in order to be. I wonder how to find more quiet and I wonder whether I really want more quiet.

While wondering, I see the things that I believe.

I believe in getting mud under my nails and in my rings while digging with my son in the yard, looking for worms. I believe in being present, although I am not always very good at it.

I believe in special education teachers and that my son’s Preschool Autism Classroom, and his Mrs. M, unlocked his words. I believe in Early Intervention, a mom’s intuition, and in the power of wishes and work and whimsy.

I wonder about life after death and am terrified of it not existing. I believe that it does, in some way, because I must. I wonder whether I’d be able to breathe if I knew for sure that there’s no Next.

I wonder about whether it was, in some ways, easier on my son when he was less aware. When his world was more centered in and on himself. Before he was exposed to and was able to absorb little kids telling him that he needs speech school, and that he talks weird. He’s at the between age when he still thinks a doctor’s visit might fix his “broken” words.

I wonder what he thinks and feels when he tells me that his mouth is broken because his “L” sound is, and I wonder whether once he gets “L,” he’ll realize that it’s not just the “L” sound that is “broken.”

I wonder at the words I might use to help him see his perfectness, when I know that it’s so much more easy to believe that we’re broken. I wish that I had the words and the hands and the power to make my little boy realize that who he is is him, and that he’s everything, and that while his communication matters, it matters because of his interactions and his impact. His communications matter because his love does. Communicating, in whatever way we each are able to, is about connection, sharing what we want, getting our needs met, and about love.

This video, from when Tucker was younger… it’s communication. And he had very few words, then.

I wonder what I would have said had I been a part of the conversation rather than just hearing bits of it between a work call and walking behind two moms on the way home from the school bus stop. One implied that another mom had given up on a boy who has behavioral issues and possibly autism. I wonder how I can find the mom in this neighborhood that they were talking about. I want to help her.

I wonder whether I’m doing enough to help Tucker know that he has the power to change the world. I wonder how to help myself know the same.

I wonder about the power of words, but not in the way I wonder about other things. I wonder at their power because I believe in it. I believe in sharing our stories and our journeys and our successes and our failures and I believe in community and the ability to change somebody’s life by changing a moment.

I believe that each of us has the power to do something in the next 10 minutes that will make somebody smile. Feel less alone. Have a different view on tomorrow. I wonder at the power of each of us doing so.

I believe in communication without words. #specialneeds - findingninee.com

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This has been a Finish the Sentence Friday post, where writers and bloggers gather to share their unique takes on a particular sentence. This week’s is “I wonder…”
Your hosts: Me (Kristi from Finding Ninee) and
Co-hosts: Kerri from Diagnosed and Still Okay (this week’s sentence thinker-upper) and Jill from Ripped Jeans and Bifocals.

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by Kristi Campbell

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  • Allie - I wonder too – about all of it, for you and me. And damn, we kind of did it again, didn’t we? And how adorable it little tiny tucker:). ANd yes, find that mom. And call ME!April 23, 2015 – 10:04 pmReplyCancel

  • Dana - I believe that too, Kristi. I will hug my kids as they go to bed, and I hope that will make them smile. I know it will make me smile. I know you wonder if you are doing enough with Tucker…you are.April 23, 2015 – 10:05 pmReplyCancel

    • Kristi Campbell - Make them smile and hang on to it!!! I know. I mean I mostly know. Sigh I never feel like it’s enough but thank you thank you!!April 23, 2015 – 11:26 pmReplyCancel

  • Jeannine Gallo - Hi Kristi.
    I believe I was meant to find your posts and follow your journey to help put things in perspective and to give hope.
    I believe that you are sharing difficult yet amazing experiences about Tucker’s beautiful life and helping so many others who can relate and may feel hopeless and lost.
    You are an AMAZING person and without knowing you, I feel blessed to be following you on this confusing, messy, enlightening, journey about our children finding their way. THANK YOU!April 23, 2015 – 10:31 pmReplyCancel

    • Kristi Campbell - Hi, Jeannine,
      First, welcome and FIRST before welcome, thank you. I’m so so glad that you’ve found a place to feel less alone. I so hope that you know that by writing that you feel less alone, that I do as well. Here’s to being together and not feeling hopeless or lost – OR WHEN WE DO (because we will), having one another. Thank you so much for finding me. I’d love to hear more of your story, when you’re ready to share it, if you’d like. If not, that’s okay too because no judgement here and just hugs and mama love for those of us who need it sometimes and always. Because both are okay.April 23, 2015 – 11:34 pmReplyCancel

  • Emily - I wonder about life after death too…I also want to believe in it. And the “what ifs” is something I spend time thinking about too. In fact, a little chunk of my memoir is devoted to the “what if” I had made that ‘left’ turn instead of the ‘right.’? Which then makes me wonder if I’ll ever actually publish that memoir…April 23, 2015 – 11:25 pmReplyCancel

    • Kristi Campbell - For real? We need to talk. Seriously. I love that part of your memoir is the what if? It’s a pretty huge part of life, at least for some of us…April 23, 2015 – 11:37 pmReplyCancel

  • JT Walters - I wonder if the wonderful world changing Kristi Campbell will ever realize how much she has already changed our world, her world and Tucker’s world through her writing and advocacy?

    Why would superwoman ever question her own powers? For us mere earthlings on here we are in awe of you and wish we just had a piece or even a little string from your super cape!April 24, 2015 – 12:06 amReplyCancel

    • Kristi Campbell - Awwww!! How lovely are you with this sweet sweet comment?!?!? Thank you!April 24, 2015 – 5:45 pmReplyCancel

      • JT Walters - It is true. You are a super Mom!! I just wish you gave yourself credit sometimes. You have done a fantastic job changing the world one reader, one tear at a time. Thanks for your beautiful words!April 24, 2015 – 11:39 pmReplyCancel

  • Mimi - Kristi, this line: “I believe in Early Intervention, a mom’s intuition, and in the power of wishes and work and whimsy”could be my motto when it comes to my youngest child. I ran into his original speech therapist today, and every time I see her I just want to hug her because I believe without her early intervention, my son would not communicate with words in the same way he does now. We are still on our journey with his speech, but his road is all the smoother because of her.
    Thank you, Kristi, for helping this mom feel like someone out there gets it. I wonder what you would think about the tears and smiles you have brought me as I’ve read your posts and nodded along with every word you write. : )April 24, 2015 – 1:07 amReplyCancel

    • Kristi Campbell - Aw Mimi! Reading that you Get It when it comes to speech and early intervention means the world to me. I wonder if you know how important your comment is to me and I wonder whether I have the words to thank you for sharing and reading and getting it. Thank you.April 24, 2015 – 10:02 pmReplyCancel

  • Nicki - Reading this made me feel so incredibly lucky to know you and to count you as a friend and very important person in my life. The things you wonder about, the things you believe, the honesty, kindness, compassion, goodness that you are… it’s all right here. Thank you. xoxoApril 24, 2015 – 1:33 amReplyCancel

    • Kristi Campbell - Wow. Thank you Nicki. I wonder how I got so lucky to find you in this huge wide world.April 24, 2015 – 10:06 pmReplyCancel

  • Robin - I so feel what you feel, Kristi, so many of the “what ifs” and “am I doing enough?” and “do I have the strength”. It’s interesting, your question about whether it was easier when Tucker was younger and less aware. My son is 10 now, and there’s definitely this feeling, as they get a little older, when they start comparing. And start questioning And start wondering. Is it just me who is different? Is it just me who can’t sit still? Is it just me who gets anxious? Is it just me w/the food allergy and why? The question of “fairness” becomes evident to them, and there are so any things that just aren’t..it is so hard to know as a parent whether you are doing enough. Deep down we have to tell ourselves, we are… we are! A perfect version of you does exist, and that is you today. Now. The one with the not-so perfect sheets, and the dirt on her nails, has her priorities straight. Definitely! But more sleep–we mom’s need that, I’m working on that goal too!April 24, 2015 – 6:31 amReplyCancel

    • Kristi Campbell - Robin,
      Love this comment! Thank you! It’s true though, I think, that it does get harder as our kids learn about fairness and differences and just all of that… Tucker never seemed to be aware of his delays before and now seems to be hyper-aware. Or, maybe, he’s always been aware, and now has the language to express it. Either way – hard! The day he asked me what a weirdo was almost broke my heart…
      Here’s to being who we are and learning to accept that it’s enough and here’s to finding a way to get more sleep!!!April 24, 2015 – 10:28 pmReplyCancel

  • Marisa - We all have the wonders and the doubt too doing the best we can sometimes isn’t good enough, sometimes it’s all we have…you’re a great mom.April 24, 2015 – 6:50 amReplyCancel

    • Kristi Campbell - Thank you Marisa, and you’re right – most of us are just doing the best we can, regardless of circumstance.April 24, 2015 – 10:34 pmReplyCancel

  • Kerri - Don’t wonder, know. Know that your love and your advocacy and your educating yourself will make sure that as Tucker becomes more “aware” he will not think of himself as broken but perfect Tucker. Because he is perfectly him, and that is what you are teaching him as you dig in the dirt to find worms (ew) as you work within the school to get him the best education possible, you are not treating him any different than you would a “typical” son. Because he is typical, he’s yours and he is as unbroken as can be.April 24, 2015 – 8:56 amReplyCancel

    • Kristi Campbell - Agree that digging to find worms is gross but the expression on his face when he finds one? At least it’s not spiders! And thanks… we know he’s not broken, but sometimes the little kids on the bus well… I know you know. xoxoApril 24, 2015 – 10:50 pmReplyCancel

  • jamie@southmainmuse - I so love all this. My children have struggles too and as mom you want them to believe anything is possible. xoxoApril 24, 2015 – 10:03 amReplyCancel

  • Nina - “I wonder whether I’m doing enough to help Tucker know that he has the power to change the world. I wonder how to help myself know the same.” <– so powerful. Because really, a lot of it affects us and takes belief on our part as well. I truly believe each person no matter what has an opportunity to change the world, and sometimes when we don't have the same advantages as others, it pushes even more so to compensate and do even more amazing things.April 24, 2015 – 11:01 amReplyCancel

    • Kristi Campbell - I agree that everybody has the power to change the world, Nina and thank you for your awesome comment! 🙂April 24, 2015 – 11:01 pmReplyCancel

  • Kenya G. Johnson - Beautiful post Kristi. I hope you can find that mom or she at least finds you. I can’t imagine the despair of someone to say “I give up” in regards to their child.

    LOVE the, “Where’s Tucker?” video.April 24, 2015 – 11:09 amReplyCancel

    • Kristi Campbell - Kenya, I hope I find her too. I still kick myself for not hanging up on the work call to listen better and say something (although would I have said something? I get shy in those things…). I can’t imagine either. I think I’ve seen the boy at the bus stop but I’m not sure.April 24, 2015 – 11:02 pmReplyCancel

  • Elizabeth - Lovely. All those important questions we ask ourselves so beautifully stated.April 24, 2015 – 2:37 pmReplyCancel

  • K - What a gorgeous post. Praying that that mom finds her way to you and your words somehow…your blog has made such a profound difference in the lives of so many.

    And I teared up a bit at the part about your son telling you that his mouth is broken. I hope someday he realizes that no part of him is broken at all, regardless of whether he can articulate all of his sounds. I remember when I realized that my disability was a Forever Thing and it’s a hard thing to stomach. Sometimes I still feel broken — sometimes we ALL do, right? — but our challenges shape us…if we let them, they make us . In the end, the L’s don’t really matter. The world is a better place because you and Tucker are in it, just the way you are.April 24, 2015 – 8:35 pmReplyCancel

    • Kristi Campbell - K – I so always love your perspective and look forward to it so much! I so hope that he also realizes that he’s not broken – just a little bit different but, like you have said and know, it’s hard when you’re a little kid who realizes that you’re different. I can’t stand that part actually. I wish differences were just like hair color or something – each of us has gifts and struggles. You’re right – in the end, the L’s don’t matter… and thank you. The world is better because I know YOU <3April 24, 2015 – 11:10 pmReplyCancel

  • marcia @ Menopausal Mother - Words and actions are powerful things…but sometimes all it takes is a certain look, and that can speak volumes. I’ve wandered down that ‘ I wonder if…” road so many times and have finally come to accept that I’m right where I was intended to be. No other life I can imagine would be better than this, despite the bumpy ride.April 24, 2015 – 10:22 pmReplyCancel

    • Kristi Campbell - I agree that no other life would be the one we’re supposed to be living, but wow is it fun and weird to wonder at times!April 24, 2015 – 11:22 pmReplyCancel

  • ivy - I suspect the “what ifs” and “am I doing enoughs” persist through a lifetime despite any of the qualities of your children. Cuz it has to do with being a mom … not with being a kid. And take my word… it hasnt stopped yet and my kid has at least 20 years on yours. Just keep doing what your doing and hold on tight… its working. THat boy of yours is gonna fly even higher than he already does now!April 25, 2015 – 9:15 pmReplyCancel

    • Kristi Campbell - Aw thank you Ivy!!! Am I doing enough is so hard. Because the answer is always yes and also no and I like that you still feel the same with yours being 20++. Thank you. xxooApril 26, 2015 – 10:55 pmReplyCancel

  • Kristi - What Ivy said. I just do the best I can, knowing that I will make mistakes, and hope that God will make everything right in the end.April 25, 2015 – 10:11 pmReplyCancel

  • Tamara - That video is of the cutest videos I’ve ever seen! Chock full of communication.
    Your afterlife paragraph chilled me. I know sometimes the deep thinkers/writers think deep/writerly things and wonder if anyone else thinks those things, but then realizes we all probably do.
    My afterlife thoughts are ones I wonder if I’m alone in. I couldn’t possibly be!April 26, 2015 – 4:42 pmReplyCancel

    • Kristi Campbell - Aw I think so too and thank you!!! Maybe we all realize that the afterlife is scary… I want WANT so much to know it’s true, but part of me? Sigh.April 27, 2015 – 10:54 pmReplyCancel

    • Kristi Campbell - Also I love your ideas on deep thinkers/writers think deep/ writerly things. xxoo big huge.April 27, 2015 – 10:57 pmReplyCancel

  • Kim - I so agree that communication often occurs without a single word!!
    I think there is an afterlife – this is something that my 16 year old has been talking about a lot lately.April 26, 2015 – 7:58 pmReplyCancel

    • Kristi Campbell - I do now *know* from seeing some of my friends’ special needs kids that communication exists without words, even at older ages. For Tucker, it definitely did before he was ever able to speak and wow – that’s awesome that your 16yo has been talking about the afterlife. I think kids are more sure than we are at times. But the we think about being moms and we have to be sure…April 27, 2015 – 10:56 pmReplyCancel

  • Roshni - Ah, the pee on the rim! I regret to tell you, my friend, that that almost never goes away! 😛
    I used to indulge in ‘what’if’s too but I believe that we are all doing the best we can! And, I know that you are, for sure!!May 1, 2015 – 2:46 pmReplyCancel

    • Kristi Campbell - UGH to the pee on the rim!! Here’s to us just doing our best – it’s enough!May 3, 2015 – 12:12 pmReplyCancel

  • Sandy - Well, hello Sunday morning tears. Fucking beautiful, Kristi. That’s all I’ve got.May 3, 2015 – 9:21 amReplyCancel

  • Carin Kilby Clark - I love this! And yes, we all have the power. This is such a beautiful post. Thanks so much for sharing with us. xoMay 5, 2015 – 7:05 pmReplyCancel

  • Sarah Honey - I would love to have a long chat with that boy on the bus and that mom! I’m sad that that boy is going up without compassion. The world is a hard enough place. And what if you are doing exactly what you are suppose to be doing in this moment and it’s this! All this!May 6, 2015 – 8:29 amReplyCancel

    • Kristi Campbell - Me too Sarah! I’m still upset about it although the school did an amazing job handling it quickly and gracefully. Still GRRRR!!! xoMay 21, 2015 – 6:19 pmReplyCancel

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