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Awakening the Sleeping Parts

This time last night, I was sitting in a classroom at Vanderbilt University’s Kennedy Center in Nashville, Tennessee while the final minutes played from Shooting Beauty, a documentary about a photographer who begins to redefine beauty when she starts a photography program for people with disabilities. The film was hard to watch at times as it provided an honest and intimate look at how challenging life really is for people with significant disabilities–from their everyday life to their desire to fall in love and have a family just like everyone else. The chairs around me were filled with new friends I had met earlier in the day–students attending Vanderbilt University’s program for individuals with intellectual disabilities–and I knew once the movie was over, our schedule for the trip was completed, and I’d say goodbye to my new friends and head home. Something about the film did me in though, and as it came to a close, I just sat in the dark and cried–could barely pull myself together enough to even rifle through my purse for a Kleenex.

I tried to explain it to my friend Liz later that night. “I couldn’t stop crying, Liz. I don’t even know. It just hit me, you know–how hard and isolating it can be to have a disability. How beautiful it is to find something that makes life better (in the movie, it was photography). Our girls–what they’ll face in life. How lucky I feel to get to be a part of this. How guilty I feel for how much pity I feel. My own prejudices. The responsibility. The opportunity we have to help. It’s just SO MUCH. I don’t even know how to feel, you know? I just–” And then I did that horrible thing I do where, when I can’t find the words, I keep talking rather than stop talking, and it’s really quite awful–the recording of which I’m sure I’d be assigned to listen on repeat if there was a hell and I was there.

The truth is, there are lots of times where I feel completely lost in how to feel about all of this, in how to prepare, in how to parent, in how to process experiences, in how to advocate.

But I always return to what’s never lost–my driving force, my standard against which I weigh all the things–and perhaps it was the word I was trying to find last night when explaining why I cried my way through the documentary.

I just feel love.
In the most overwhelming sense that it consumes me.  For the people in the movie. For kids who just want to fit in. For anyone whose disability challenges what they really want in life. And for Nella. Sweet mother of all things holy, for this girl I love so much.

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Right before I left for Nashville, I popped in the girls’ bedroom to say goodbye. With Nella snuggled in on one side and Lainey tucked in to the other, I told them where I was going.

“Remember Ruby’s mama? Remember what I told you she does? She helps people who have Down syndrome go to college if they want to. Don’t you think that’s awesome? Well we’re going to go visit them and see their classes and talk to them about how much fun they’re having and what they’re learning.” Lainey smiled her shy smile–the one I can predict now for conversations like this–and Nella? Well, she reached up and touched my cheek. Locked her eyes on mine just like she did when she was born–like she knows everything there is to know, even the things I haven’t figured out yet. And then she kissed me….
and another little part of me I hadn’t realized was sleeping came alive. 

There. That’s it. Those are the words I was looking for. That movie, this week, the people I’ve met on this journey and all their stories I’ve been learning these past six years–they’ve awakened parts of me that were sleeping. And though that awakening brings responsibility and sometimes makes me sad, I promise you it’s far more fulfilling to live fully awake. I want to keep looking for more sticks to stir up all the bioluminescence in the world so it glows as bright as it can be. Pardon me, I just saw The Good Dinosaur, and the firefly scene kind of stuck.

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This morning, after a few days peeking into the future of possibility for Nella, I couldn’t wait to hug her. “Let’s go get Nella early from school,” I told my dad when he picked me up at the airport. That is, of course, after he made fun of my thrifted suitcase. I was holding my suitcase, waiting for him to pull up, and–not noticing he was already there–I looked down at my phone to see a text from him: “Maria von Trapp called. She wants her suitcase back.”

It feels good be home, a little more awake than when I left. We have a lot of work to do, and next week I’ll tell you all about the trip and how you can play a very important role in awakening the sleeping parts.

You know what was in this girl’s school bag last night?

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A paper with her new site word…CAN. She had to circle all the places she saw CAN on the paper, and they were everywhere. So many circles. CAN CAN CAN CAN CAN.

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How much we can do when we’re fully awake. Now go get a cup of coffee. Happy Thursday, friends. Thanks for tagging along.

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  1. Thanks for this beautiful post. It made me cry. Tears of happiness and sadness and hope! My baby is a year old and he has Down syndrome. I know what you say … It really comes down to LOVE. Immense love! I worry too and then it all falls back in to place when I just feel the love! xo

  2. Liz Vellali says:

    Great post. I am the mom of a young man with down syndrome AND autism, who is 25. We have struggled to find our way through this turbulent world of parenting. Switching from support in the down syndrome community, to those in the autistic community (because that disability is more prevalent. You are the right attitude…love them…advocote for them…and the rest falls in place. I always say, I wish I was as happy as Brandon is…he loves the world he lives in…and we love him.

  3. Shannon Leska says:

    I have been following you since Nella was born💜. While I was unable to have children, if I could have, I would want several. Just like Nella.

  4. Sue anne says:

    I have been a pediatric speech therapist for over 30 years. My kiddos have taught me that they were born for their journeys they are on. As hard as it is at times, they are uniquely prepared in a way we cannot always see or rationalize. Truth is, we all have hard times in our journey no matter how many chromosomes we have. You, too, are uniquely prepared to steer all of your babies toward their destinies. Enjoy the journey because the view from your seat is remarkably beautiful and the destinations along the way will take your breath away. Godspeed!

    • Sue Anne, I love what you say here about children being born for their journeys – absolutely what I needed to hear right now while facing some challenges with my son. Thank you!!

  5. ChrisTi R says:

    So powerful! Your writing made my throat all tight, holding back the tears. Kelly, you have such a gift with your writhing that you are able to elicit such sympathy and complete understanding of what those with disabilities face. You are an incredible advocate! My sister is struggling with this now. She has a mild intellectual disability. It’s often unrecognizeable to those that don’t know her well and others probably just think she’s a bit “off.” It makes securing real friends nearly impossible.

  6. Heather Rodriguez says:

    “awaken the sleeping parts” slayed. I am a puddle, you found the words I was looking for. Thank you thank you thank you! Hope your cool with me stealing this line when people ask what I “get out of it” It feels so good to come alive and wake up stuff that needs waking! xoxox

  7. Thank you for awakening my sleeping parts with your wonderful teachings.

    ‘I just feel love.’

    A great mantra for times when you don’t know what the next step is or what to feel. Love never fails. Love wins.

  8. I have been following you since soon after Nella was born. I have enjoyed the journey and am blessed by it and the love your family shares.

    Thank you for putting yours and Nellas story out there. It is quite the inspiration.

    Love, hugs & prayers ~ FlowerLady

  9. I cried the entire way through this post. I know exactly how you feel. Our sweet girl with DS is 4.

    • Same here. So many swirling feelings in my head makes the road ahead foggy. But I just need to calm down. The road ahead is Love – simple. Our wee gem of a boy with DS is 19 months.

  10. I hear ya! The only place I struggle is that great love=great action, and it can be so mentally and physically exhausting. Our son is hearing impaired, and has learning disabilities. I want to be one of those parents who is always 100% CHARGE AHEAD , but it is tiring. For instance, for 6 long years, we have gone to auditory verbal therapy 2x per week at a location that was 1.5 hours away. The rewards are great -and worth it, of course! – but the mental and physical exhaustion that comes with great love (action)is exhausting. We press on, because that’s what we do as advocates, but it’s hard at times. I would love if you wrote one day about the ins/outs of being an advocate for your child in the early years!

  11. I think we need a picture of the suitcase …

  12. “And though that awakening brings responsibility and sometimes makes me sad, I promise you it’s far more fulfilling to live fully awake.” I feel this in every single pore of my body. You and I are somehow on parallel sidewalks while also being very much together, lock-step.

  13. Nella has been such a gift to so many already. Especially this week, during the political mess and constant attacks from all sides…I needed this post today — for Nella to remind me, through your words, that all you need is love. Your baby girl CAN and WILL and already HAS, and this community will help her and others like her make this world a better place.

  14. I’m working with kiddies with developmental delay and that word CAN – what a wonderful word for kids to meditate on!! Made me tear up!

  15. We walk on holy ground with these kids. Holy ground.

  16. I have followed your blog since receiving my prenatal diagnosis at 20 weeks pregnant…now almost 2 1/2 years ago! I wanted to see what it was like for real people to parent a child with DS. What I would really be working towards…not all that WebMD stuff…Nella is a blessing, to you and to me. When my daughter, Quinn, was born I thought of Nella. Of everything she CAN do…and I knew that Quinn CAN do them as well!! The love is overwhelming and comes out of me in hugs, in kisses, in staring, in teaching, in learning with her, and a lot of times in tears. The love is the awakening…it’s sometimes painful but always amazingly worth it!! Thank you for blessing me with your wonderfully insightful words. They are beautiful for my heart to read!

  17. hey there!!! Are they teaching using whole language techniques at the preschool? In our kindergarten and first grade, the word “can’ would not be considered a sight word (like ‘was’ or ‘the’ that needs to be just memorized because these sorts of words break typical phonetic conventions of the English language), the educators and parents would be teach this word with basic phonics because ‘can’ uses ‘a’ as a short vowel.
    Anyways- it is great Nella is on her way to reading!

  18. You are so right. It is all so much with these special littles. I cry for the love my son gets, for what he may not do, for the relationship between him and his brother. So.much.crying. And all those tears are worth way more than the half living I did before him.

  19. bettyann says:

    You have woken my heart. Thank you . Go Nella go!💞

  20. I had a lump in my throat throughout this whole post. Beautiful photos of Nella!

  21. You have awaken me and made me so much more aware of what it’s like living with a disability or raising a child with one. I understand the work it involves because I have a niece with special needs. But I never realized the depth of the emotional challenge. My sister- and brother-in law always seem to have managed with such grace, but I know there have been worries, sadness, frustrations, and anger. Thank goodness that has been balanced by love, happiness, admiration and pride for their daughter. She has made incredible strides and is now in a great place in life. This is Stephanie… http://sutvnews.com/2015/11/12/inclusion-in-action-gmu-life/
    Thanks for helping me to be so much more awake and aware!

  22. My daughter was born with down syndrome in December 2015. I was introduced to your blog by a friend who is an OT. You are truly an inspiration to me. I have had many emotions since her birth and still dealing with them. I just wanted to say thank you.

  23. This is just lovely. I found you by way of my sister after her oldest daughter was born with Down Syndrome just over five years ago. This place (your blog) is a source of awakening for me. Thank you for that.

  24. heather says:

    CAN!! Nella CAN and she will. With you and the rest of her wonderful behind her, she WILL! Thank you for sharing your words with us. All the love to you.

  25. How wonderful that you can feel so deeply in the face of love. There is nothing better than letting the tears fall while you are still and present and awake. All tears happen for a reason. Wishing Nella a CAN-do day.

  26. Heather H says:

    Can, can, can, can, can, CAN!!!!!!!!!

    That’s all.

  27. My mom has been a special ed teacher all my life – when I was in high school she worked with children like Nella – children who had Down Syndrome or who had other disabilities that would hamper their lives. The program was originally called Life Skills because that’s what they were taught. Skills on how to lead productive lives – information that so many others simply take for granted as common sense, etc.

    This past summer, right in the same week when I turned 29, I worked with my mom’s Extended School Year program and I. Fell. In. Love. All of a sudden, I realized that I knew what I wanted to do with my life. I want to help these kids. I want to be their one on one support in the classroom, to help them learn and to be there when they have their emotional moments. I want to help them learn to succeed and to learn that even if there is something they can’t do, it doesn’t make them any less perfect or special in my eyes, in the eyes of their parents and loved ones. They are, simply put, perfect and special because of who they are, not what disability or diagnosis they have.

    Reading your blog religiously since Nella was born has helped to foster this love in me. Every time I read something new about a moment you had with a PT or an OT or one of her teacher’s or something new in school – I get SO excited. I want to be a part of that! I want to cry with a mama because her baby did something that nobody thought she’d ever do. I want to console a mama because things are hard but I want her to know that I will be there, every step of the way, to help in every way I can.

  28. Well, this post just about did me in. I so get this. I have a 23 year old daughter with a brain injury. She started out life “normal” and then when she was four years old someone who couldn’t drive their car very well hit into our car and permanently changed my daughter’s future. We worked so hard with with her, trying to get her back to the way she was. And she did recover much. But not all. She was left with learning disabilities, a significant limp and she slumps to the side much like a person who has had a stroke, and she lost the use of her right arm/hand. Her vision was affected, too, as well as her speech. Nonetheless, my girl has had so many amazing things happen for her, despite her disabilities. She has THE BEST attitude. I am always so proud of her. The one thing that still hurts my heart, however, is that she has never had any boy pay her any attention. Boys her age cannot see anything except her disabilities. And she’s such a romantic. She talks often of “getting married” and tells me what she will name her children. I just pray that one day she will be able to experience a romantic love, that some man out there will be a perfect match for her.

  29. Great article as always. We will be awakening the sleeping parts tonight in Austin, Texas, for sure. #321Pledge 321pledge.org.

  30. Love this!
    And your Dad’s text- that had me laughing out loud!

  31. big fan of giving the bioluminescence a stir, here. great post.

  32. Your post is so informative and helpful. Thanks so much!

  33. You have a beautiful daughter, and she has a beautiful mother.

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