At the cellular level, every bit of David’s body has been affected by a chromosomal abnormality. It isn’t the way it’s supposed to be. The coordinates on the map are incorrectly labeled. The recipe has all the ingredients but in the wrong amounts. The computer coding has a typo and the program won’t run correctly. When David was born we saw his left hand had only two fingers. It was the first indication David had a genetic disorder. His body is broken, imperfect, flawed. His soul on the other hand, is intact and whole. We are two parts, body and soul. His soul resides in a body that simply doesn’t cooperate because it can’t. His soul fights every day to live fully.
Before David was born, before I was married even, I taught with kids in wheelchairs, kids with g-tubes, kids who were non-verbal, kids with autism. I worked with special needs kids, or I should say, I worked with typical kids trapped inside bodies with special needs. Every day they arrived at school at 8:30am, every day they left at 2:40pm and in between we lived life together; learning, growing and connecting. I knew each of my students well. I knew their physical needs and quirks, their preferences and personalities. I knew their souls and they knew mine.
When two people truly connect on a soul level it’s a kind of miracle. It’s much deeper than a physical connection. It takes time and energy. It takes patience and quiet. It’s a soul to soul, heart to heart connection. It’s the way an expectant mother bonds with her child before he’s born. It’s the way we can’t stop thinking about a friend–so we call up her up only to find out she really needed words of encouragement at that very moment. It’s a deep knowing cultivated over time. I can’t explain it, but if you’ve experienced it, you know exactly what I’m talking about.
We may be tempted to say the body doesn’t matter. The body is broken—who cares?! It’s the soul that truly makes us who we are. And yes, in part, this is true. But the body does matter. The body carries the soul. The body breathes and speaks and sings and moves. The body is the outward representation of the soul. The body works on our behalf to make our soul known. A soul needs a body and a body needs a soul. So we care for our bodies. We walk and run and try to eat healthy food. We brush our teeth and see doctors and have surgery to repair a heart defect. We buy clothes that fit and have our hair trimmed. We honor the soul by caring for the body.
Yesterday David worked on feeding himself. He carefully lifted a spoonful of lemon yogurt to his mouth, took a bite and placed the spoon back into the bowl. He isn’t able to scoop up another bite, so I do that part for him. Again and again, I fill the spoon, again and again he lifts it to his mouth and places it back into the bowl. Over months and years of working on this skill David continues to improve.
And we celebrate! Because David’s amazing, stubborn, beautiful soul is winning over a body that doesn’t work right. We celebrate because it’s a HUGE accomplishment. No, eating a spoonful of yogurt isn’t a huge accomplishment for most 14-year-old boys, but for this kiddo, who lives inside a body that doesn’t cooperate, it’s massive. It deserves shouts of delights and high-fives.
While my hands are clapping and I cheer for his success, a tear slips down my cheek. This sucks. I hate that my son has to fight moment by moment to live a full life with a body that fights against him. I hate that he has to work harder than most kids to communicate and eat and walk and sometimes just to breath. I hate that he sees seven different medical specialists. I hate that he’s had multiple surgeries and will likely have many more. I hate there are times he comes up beside me and takes my hand, looks at me with an intent gaze while he stomps his foot, hoping I’ll know what he wants. I offer him a snack and see the frustration cross his face. He stomps more and pulls on my arm. I offer him a cuddle and he pushes me away. I hate that he can’t tell me what he wants and I hate that sometimes I can’t read his soul well enough to guess.
But that soul. I love that soul. And I love that broken, imperfect, adorable body that holds his beautiful soul. A love that is deeper because our souls have struggled and grieved and found hope together.
Today I will put this necklace around my neck as a reminder of the love between his soul and mine. He is part of my tribe. He is my safe place and my love. I will do my best to care for his physical needs with patience and tenderness. I’ll help him scoop up spoonfuls of food again and again. I’ll help him put on his pants and button his shirt. I’ll cuddle him and kiss him. In return he will smile at me making my heart do flip flops. He will take my hand and show me what he wants. He will teach me how to be grateful. He will teach me to notice the beauty all around me. He will move through the day with bravery and determination. He will inspire others and spread joy to all who know him.
His soul knows mine and my soul knows his. And at the end of the day, we are both souls living inside imperfect, broken bodies. Not just David, but me as well. And someday I know it won’t be this hard. Someday all with be made right and our bodies will be made whole. Someday heaven will come. Today we find beauty in this moment, hope for tomorrow and a deep love between our souls.
Have you experienced a soul connection?
If I could have put my life with my grandson Christopher into words, your story would be our story. I raised my grandson from birth. At 4 years of age he was diagnosed with MELAS, another genetic disease that affected all parts of his body. We were told that his disease would progress and it was doubtful that he would see his teen years. It was heartbreaking to watch what happened to Our little boy. For a long time I emphatically denied that what the doctors told us would happen, but I finally had to face the truth. I had 12 wonderful years with this precious child and I cannot imagine who I would be now if I had not had him in my life. Yes I fed him, changed him, dressed him, played with him, tried to understand what he was telling me in his own non-verbal way and most of all, loved him more than I would ever think I could love another person. This little boy had such a perfect, sweet, loving soul. He knew no meanness or hate. Everyone was his friend and he had a special bond with animals. He was the kind of child, that if he had been born under different circumstances, he could have changed the world. Tomorrow will be 2 months since we had to bid him farewell. He earned his angel wings while on this earth and although we miss him terribly, we take comfort he is now pain free, whole, happy and waiting for us to join him. I look forward to that journey.
You were able to capture this so beautifully. What a wonderful mother you are. I have had many students with multiple disabilities over the years and my dear cousin who have blessed my soul with their smiles, perseverance, struggles, unconditional love, and joy. They are my people. I’m in a hiatus from teaching, and I miss them!
This touched me. Deeply. My grandson has ADHD, ODD, and dyslexia, just like my son. Also, just like my son was, he’s big for his age. A seven year old, who towers over the others in his class. Because of this people expect more from him, they expect him to act more mature than his seven tender years. They tell him not to sit and cuddle on my lap because he’s too big. He has a hard time making friends, and adults don’t understand his hyperactivity. He struggles to fit in, wanting just to be loved and accepted. I have other grandchildren, who I love just as much. He and his brother will soon have a baby sister, and I know without a doubt that I will love her unconditionally. But I have to admit, I have a special bond with him. Sometimes I ache for him, for the struggles he faces now, and the ones he will face later. He is very attached to me, and I to him. I tell him how special he is, and how he can do anything he sets his mind to. I tell him that I am his greatest fan, and that no matter where he is, or what he’s going through, all he needs to do is close his eyes and know that I am there with him, deep in his heart, entwined with his soul, feeling what he feels, silently holding on, cheering him on. We love those who are broken the most, because we can see the part of them that is whole, and perfect, the part that is hidden from the world, and we cherish them even more because of this.
I wish you an amazing journey with this child you love, this incredible human being who came into your life and changed everything you thought you knew about love. Thank you for sharing your journey with others, I am humbled by your words.
Thank you Lisa! Your words are an inspiration to all moms. I totally love the distinction between a special needs kid verses a kid in a body that has special needs. My heart is blessed.
I had this connection with my son. We could just stare into each other’s eyes and we could express our immense love for each other. He had Trisomy 21, had a stroke when he was 2 that left him paralyzed on his right side and was non-verbal. He relied on me to dress him, bathe him and change his diaper for 20 years. He was able to feed himself with minimal mess.
My son passed away almost 9 years ago from a pulmonary embolism. After multiple surgeries, a stroke and other multiple hospitalizations, his precious body just gave in… It took me years to come to terms with his death. Why would God take an innocent and not a rapist or murderer instead? Now, I know that my son has a perfect body and can run and talk and sing “The Circle of Life” at the top of his lungs perfectly. He is now my heart and my angel. As I read your blog, I had tears running down my face as I recognized your feelings for David as the same I shared with my son. I hope it was ok to speak of his death, but I felt I needed to be totally honest. I have an emptiness in my soul and I don’t smile like I use to… Enjoy every second you have with David. Enjoy every milestone or setback. Remember that God entrusted you with one of His special angels. XOXO
Yes I have our Son is 20 yrs old has moderate Autism. He can talk & do quite a lot for his self. But there are challenges for him. He has a hard time transitioning from one thing to another. I say a wonderful soul with a mind that has trouble cooperating, I know it’s frustrating for them to live this way. All will be made perfect when we get to Heaven one day. ? ??
Very thoughtful and beautiful description…..your words are sculpted so others can understand. Thank you for this gift to us all !
Thank you so much for sharing the soul touching that you and your beautiful son experience. You are a special person to have been a teacher before having your son, so that you would have some knowledge of the love and dedication it would take to see him thru the hard stuff…..life. <3
What a beautiful story. How I long for that soul connection with my son, who has chosen not to have it because drugs were a higher priority. Please continue to spread your story of hope and perseverance. You have been given a precious gift, wrapped differently than most gifts, but precious anyway.
What a beautiful story! Yes! I have experienced a soul connection with my sister who also has CdLS. She just turned 49 and is such an amazing beautiful woman and hilarious! The things she says make us laugh again and again and my heart melts when I think of her. I just found your blog today since you were linked to God-Sized Dreams. Thanks for sharing your life and David’s story and your entire family’s story as you walk this journey with the Lord. Beautiful!!
I most definitely have that connection with my son with special needs he is 25 but looks like he’s 12 he is my everything Cody is his name we have our special bond that no one will ever understand loved your story thank you for sharing Angie Shellum
I loved this post. The depth of your love for David brought tears to my eyes. I have seen this too, the more we work at a relationship the greater the reward of fellowship. Thank you for sharing and I’ll be praying for you, David and your family.
Thank you for sharing such a touching, loving part of your life….God Bless David, you and the rest of your family.
Lisa that is a beautiful story thank you for sharing it!!
beautiful. Thank you so much for sharing. Love and hope to you.
Beautifully written. Your willingness to share your heart and express, so openly, is a gift to us all.
Beautiful post Lisa! We all strive to be good mothers, but you are, by far one of the best moms I know. I admire your strength, faith and honesty.
we learn so much from the “unperfect” people/critters in our lives… god know where to send these unique people/critters and how blessed each and everyone of us are because of them… they are blessings no other person will know and how fortunate we are to have them in our lives… it’s the people who say “oh, i couldn’t handle that. i’m happy to have normal children.” we are the ones that are so blessed- by god… we are the ones who see god in his greatest creations… we see and feel the true essence of love each and every day because of them… god bless your soul and david’s… hugs2u
You are awesome. You both are lucky that you have each other. God bless you, your family and David.
High five David. Beautiful!
Bless you Lisa for sharing this honest and rich blog post. Your David sounds like an amazing soul. You too for being his mom. I also have a son in a body that doesn’t quite work as mine does. He is 26 years old and recently moved into his own apartment. I will continue to pray for you as you parent your David. Thank you for being vulnerable and sharing. Bless you. Gigi
I knew I was drawn to your jewelry for a reason. I am a special education teacher. I am also the sister of a brother who was born with special needs. The things that most people see as small things, we see as huge accomplishments. And they ARE! Way to go, David!!!!
Beautiful! David, you, your souls…just beautiful. The love a mother has for her child is THE strongest, most amazing emotion! God bless you and your family.
This is beautiful. Thank you for sharing your journey! You’re an inspiration to me! David is blessed to have such a wonderful family-and you are equally a blessed to have him.
This is absolutely beautiful. Thanks for sharing your heart and soul with us♡
What a beautiful expression…”Some day all will be made right and our bodies will be made whole. Some day heaven will come.” Some day came for my precious granddaughter on March 18, 2016. She was 4 years old. She was born with a neural tube defect and a host of brain malformations too numerous to mention. She was a perfect spirit inside a broken body and you described my life with her to a tee. She, according to her Neuro team, should not have been able to see or walk or, do anything requiring the various parts of her brain to communicate, yet she did. Her neurosurgeon called her an anomaly…someone with abilities he could not explain medically. I called her my teacher. Like your David, she was the perfect example of love, resilience and joy. I will be eternally grateful that I was blessed to be her grandma. Thank you, so much, for sharing David’s story.
@ Dawn….. oh my Goodness Dawn… Tears of Love…
@everyone… my heart is full so much of love for all of you….
I faithfully read and enjoy your blog every morning here on the East coast!! I came back this morning to read Davids post again, absolute the BEST love between a child and his mom (whole family). I can’t say enough how your writing and family effects me in such positives ways!! There are times I cry with you, laugh with you, smile with you, struggle with you…….. you are a true inspiration to just being a woman! There are definitely struggles and heart ache of motherhood with only wanting the absolute best for a child (children). Continue to find the beauty in every moment no matter how big or small 🙂
Lisa, I purchased a starburst ring from you in June to give to my sister as a bflday present and the gem fell out. What should I do? She’s only worn it for 3 months.
Hi Wendy, please contact us at customer service at lisa leonard dot com so we can make it right. I’m sorry for the inconvenience. xx
lisa, what beautiful words of love from you for david. thank you for sharing pieces of your heart.
sending shouts of delight and high-fives and prayers for continued improvements and ease for you all from iowa …
kathy (someone who’s never commented here before but appreciates your kind heart, way with words and pretty jewelry)
I just wanted to write to thank you for sharing such personal thoughts and feelings! I really loved this post and the post about you and Steve and how wonderful and hard marriage is. I love your blog because you are easy breezy some days and really thoughtful and open and raw other days. You don’t just write about how amazing everything is, you tell your stories with such honesty and share the ups and downs, the fun times and the heartbreaking times, your family vacations and weekends. You are very inspiring and really help me to feel my feelings and reflect on life! Thank you and God bless you and your family.
This is wonderful news about the yogurt! I just read it to my 11 year old daughter, and she clapped for him!
Thank you for saying this sucks. It is difficult. It is exhausting. It is heartbreaking. I wish with all my heart that my daughter didn’t have to struggle, didn’t have to be hospitalized, didn’t have to be trapped in her broken self, and was just an ordinary typical child. But, like you’ve said before, out of the brokenness comes the beauty and wonderful joy. Thank you for your honesty.
This blog should be what shows up under mother in the dictionary. No other definition is needed. Thank you for sharing your heart in these beautiful words for all of us to inhale.
Heartwarming. I’m so grateful every single time I come to your blog because your honesty and your courage are strong and true. What a beautiful tribute. Your family is amazing.
My son has autism and I feel all those feelings you described–YAY you worked hard towards amazing progress!!!! ….but man it sucks that you have to work SO hard to do things that others don’t even have to try at. All the emotions all the time. Sigh. But yes thankful for the beautuful soul!
I agree with what Ellen said! What a beautiful tribute to your son. We spent the last year taking care of my husband’s brother who is low-functioning autistic, non verbal, and epileptic, and the list continues. We fought constantly for dignity for his brother only to be met with “he doesn’t care” from the rest of the family. It was infuriating and frustrating, and it lifts my soul to see what a beautiful relationship you have and what love and dignity and research and understanding do for the person who needs it. Bless you and bless David for being examples and inspirations to us all!
I needed this today as I learned a huge lesson from my small boy this morning, and then reading your inspired perspective. What a blessing to me!
Just curious if you still write for (in)courage?
I love all your blog entries, but this one is by far my favorite. Your words echo what I feel for my Abby (who also has CdLS.) She has taught me so much…patience, kindness, how to overcome obstacles and more. There is nothing more precious than having her hold my hand, or hearing her laugh, or seeing her smile. you see, WE’RE the lucky ones 🙂
One thing I notice about your relationship with David is how you give him dignity. You encourage his passions, foster his independence and revel in his joy.