Last week David and I were down in Los Angeles to see his cardiologist and for a small procedure at UCLA. We were down for two and a half days–just the two of us–and we did some exploring around UCLA to fill the time when we weren’t seeing doctors or in the hospital. I’ve been wanting to visit the Hammer Museum. I feel a little silly admitting this, but I get nervous taking David new places alone. Especially when I don’t know if there will be easy access to elevators. Also museums can be intimidating because it’s generally quiet and I don’t know how he’ll behave. But I pushed through those feelings of nervousness, reminding myself, David has a right to be in any space–even if he is loud or has a meltdown. Also, I’m allowed to be an imperfect mom who doesn’t have everything figured out. Thankfully, we both did well. Admission is free and I wanted to see the incredible staircase pictured below. We ventured out and had so much fun! The staff was amazing and even though they are still building a ramp for handicapped accessibility, the staff helped us with his wheelchair and made everything easy.
The lobby staircase was painted by artist Yunhee Min in abstract, kind of surreal patterns. I thought it looked so cool, I really wanted to see it in person! Isn’t is cool?
The courtyard is beautiful with huge trees and filtered sunlight.
There was a super cool coffee bar and restaurant. Maybe we’ll eat there next time we visit!
I think David felt disoriented by the patterns and shapes on the staircase. In general he struggles with depth perception and is cautious when walking across changing flooring or uneven ground. it makes sense the stairs would feel a little overwhelming for him. I loved it though!
I asked one of the docents to snap a pic of us. David wasn’t really in the mood for a picture so I tried to comfort him and she snapped the pic. I love what she captured.
The Armand Hammer personal collection was incredible! There are so many incredible artists represented–Cezanne, Degas, Manet, Monet and Pisarro. I felt a little starstruck.
This one by Henri de Toulouse-Lautrec was a favorite.
I’d like to know more about the art I’m viewing but without much time to read about the pieces {since I was chasing David around} I just tried to take it in and enjoy each piece. Also, the space itself was so lovely!
the gift shop and succulent garden visually inspiring!
We visit museums when we travel, but we don’t often visit museums at home. I want to do more exploring wherever we are! Have you visited a museum lately? What was your favorite part?
Many of you have reached out with questions about how we travel with our son, David, who has profound special needs. David is 17 years old now {although he’s tiny for his age} and we’ve been to France, Germany, Scotland and England {many times!} We love adventures and every summer we take a big trip–usually to the UK to visit family and along the way we’ve picked up some good strategies for making it work. If you have your own tips or any questions, leave them in the comments. I’d love to hear your thoughts! I’ve used some affiliate links in this post and if you click through I may get a small commission. Thank you!
1. Bring all medications. I know this sounds obvious but I consider myself a pretty good mom and we ended up in a emergency room in Cambridge, England because I didn’t bring David’s inhalers on our trip. He hadn’t needed them for months and I figured he would be fine. Even if I had brought them we most likely would have ended up in the emergency room BUT STILL we needed them and didn’t have them. Make sure to pack MORE meds than you think you’ll need–your plane might get delayed by a day and you’ll need that extra dose. Don’t forget over the counter medications as well. We always pack hydrocortisone cream, antibiotic ointment, miralax, and various things that can be difficult to find in another country.
This is the pill organizer we use to organize David’s daily medication for the entire trip. If we are going to be gone for three weeks, I bring three pill organizers filled and ready to go. It makes things much easier!
2. Bring plug adapters. A quick online search will tell you what kind of adapter you’ll need for outlets in the country where you’re traveling. Most are available through amazon at target. Here’s the plug adapter we use for England and Scotland.
*Important* Appliances with motors may not work in other countries because voltage varies from the US. I brought David’s nebulizer to England and even though I plugged it in WITH A VOLTAGE ADAPTER and the motor burned out within ten seconds. The same thing happened with a blender. David only eats blended foods and I brought a small blender with us a few years ago. The voltage difference caused the blender to burn out and we ended up buying one locally. It was hard to spend the money but it was a necessity. If you rely on motorized equipment for your special needs child, arrange to have equipment native to the country to so you won’t have any issues.
3. Consider Airbnb instead of a hotel. We love Airbnb. David is up a lot at night and when we’ve stayed in a hotel I’ve found myself in a bathroom with him at 3am trying to keep him quiet so the rest of the family can sleep. I worry about the people in rooms around us and under us in hotels, too. It’s stressful and then I’m exhausted the next day! We’ve found if we get a house through Airbnb then David can be up at night and the rest of us can still get sleep. Other things that are awesome about airbnb are the ability to do laundry {pack lighter!} and cook {save money!}. I’ll try to do a whole post on Airbnb but my quick tips are–find an entire place to yourself, make sure you have enough bedrooms {not just beds} and read reviews closely.
4. Bring a friend or sitter along. Phew! I know this is a big one and it might seem unrealistic, but for us, this makes all the difference. It’s the difference between being busy, exhausted and stressed for most of the trip to actually having downtime and GASP! getting a few dates in here and there. It requires an extra plane ticket and an extra room in the Airbnb but for us, it’s definitely worth the extra cost. We’ve also asked our Airbnb hosts to help us find a sitter who can care for David with his special needs and we’ve had some incredible women help us in other countries. We’ve asked this person to come in from 9am-noon to help feed David breakfast, give him a bath and do some light cleaning. We still keep in touch with many of these incredible women!
5. Pack light. The lighter you pack the easier it is to move around airports, trains and taxis not to mention lugging stuff up four flights of stairs. I mentioned one of the perks of an Airbnb is the ability to do laundry {make sure your Airbnb has a washer and dryer}. We try to pack as light as possible when we travel. We bring medium sized suitcases with around 5 outfits, lots of underwear and socks, and then do a load of laundry pretty much every day. As far as souvenirs–shopping in another country seems sooo fun until it’s time to pack up and come home. When we were in France I went crazy at a flea market with French shopping baskets, vintage pottery, a painting and linen clothing. It was so stressful trying to fit everything in our bags. Now I remind myself I can always find the same things online. I try to find souvenirs like a print of the area from a local artist, an ornament for our Christmas tree, a vintage creamer and sugar set or a fun dress. Buy smaller items to bring home and save yourself the headache.
11. Plan ahead for the plane ride. A ten hour plane ride is going to be rough. There are no easy answers but we try to pack some fun toys {iPad with Dr. Seuss read along stories and a keyboard app, lots of snacks and food {for both David and us} and a vibrating toy like a buzzy bee or a vibrating toothbrush to help calm David when he gets agitated. Keep reminding yourself that once the plane ride is over you get to be in a new, fun place. Also, don’t underestimate the power of peanut MnM’s to lift your spirits in a crisis.
6. Order diapers or other bulky items and have them shipped directly to your Airbnb. We bring enough diapers for the first week of our trip and have more delivered to the house where we are staying. These are the diapers I order for David since he no longer fits in baby sizes. I check in with the host before I order any deliveries to make sure it’s okay with them and confirm the address. You can order on amazon.co.uk from the US. It’s awesome!
7. Use Uber Renting a car in another country is pricey and driving in another country can be stressful. We use Uber a ton and it’s worked great. We haven’t had trouble finding vans that can accommodate our luggage and David’s wheelchair.
8. Plan to have food delivered/check out local restaurants One of the most stressful parts of travel is when we are jet lagged and hungry. We have found that food delivery the first night we’re in a new country can make things much easier than walking all over town to try to find a pub or restaurant that is serving food and willing to serve children. We’ve use Deliveroo and Uber Eats.
Many restaurants in the UK only serve food until around 7pm and won’t serve children. If we find a pub or restaurant that looks fun, one of us will run inside and check to see if they are serving food and if they allow children. Also, if you have a wheelchair you might mention you’ll need spot to tuck it away while you eat. Also, ask your Airbnb host for recommendations for local pubs and restaurants that are kid friendly. Trip adviser is great for checking out reviews of pubs and restaurants.
9. Plan one adventure a day. This is a big one for us. When we’re in a new place it’s tempting to want to do allll the things and see everything. But we’re learning we can only do so much before we end up exhausted and burnout. We try to have slow mornings to sip coffee, read a book and relax. We plan one big adventure a day and we try to plan which restaurant we’ll eat at before we go out. Then we pack a bag with all of David’s food, medications, diapers, wipes. We load him into his wheelchair and off we go for 6-8 hours. We might leave around noon and get home at 8pm. We watch a movie and relax on the sofa. For us, this rhythm seems to work well.
10. Manage expectations. Travel is still real life. Looking at pictures on instagram, it’s tempting to think somehow we can plan everything, including darling outfits and take perfect pictures on a perfect day with perfect children when everyone is in a good mood. On our trip to Scotland this summer we had amazing moments–David on the top of Calton Hill while the sun is setting and the wildflowers are blooming. Magical!! We also had really hard moments like the meltdown he had in a pub where he screamed for twenty minutes while trying to knock everything off the table. A few years ago I dropped a box of sweet potatoes on the plane. The container burst open and sweet potatoes flew everywhere–including all over the woman’s face across the aisle from us. She freaked out screaming, “WHAT WAS THAT?!” I felt awful! My face turned bright red. It sucked. But you know what, we got through it. She eventually calmed down. Life moved on. It’s real life even on vacation. Keep your expectations in check and you won’t be surprised when things go awry. It’s worth it for those magical moments!
12. There are a few products that have made travel easier for us. We love the buzzy bee and we bring it everywhere. Also bring extra batteries. We use this door stopper to keep David in his room at night. This little gadget has been a life changer for us! We don’t want him roaming around the Airbnb. It helps me sleep easier! We use these pajamas to keep him cozy and warm and they are a lifesaver if we have a diaper failure {everything stays inside instead of getting everywhere.} We brought this poncho with us to Scotland so we could cover up David in his wheelchair if we were out and about in the rain. This is the best $15 I’ve spent in a long time. He was the driest of all of us.
Are you ready to book a trip? Plan your next adventure? I’d love to hear your thoughts, questions, comments. Have you traveled with a special needs kiddo? What works for you?
Hello friends! Thank you for your encouragement about David’s room refresh. I love taking a space and making it feel fresh and new. In my world things tend to go from clean to messy and then back again. It’s a cycle I have a hard time breaking. But refreshing a space tends to motivate me to keep it tidier for a while.
Below is David’s room before it was David’s room–it was our spare room and the boys shared. Wasn’t it bright and cheery? All of this bedding was from Target–down to the ottomans at the end of the bed I found on clearance for $15 each! But when the boys got old enough to need more space and privacy we were happy to give it up and create a new space.
And below is his room before the refresh–not too different. I changed the bedding and rearranged the room a bit. I took this pic on a morning where before I came in to get him, he had thrown toys and bedding all over the place. Such a rascal!
That adorable globe is from the Magnolia collection at Target. It spins and David has fun with it. I love how bright his room is–lots of windows.
One of the hardest parts about decorating David’s room is making it feel like a teenager’s room {he’s 16 years old!} but also filling it with toys he loves. He would happily play with a pink elephant keyboard but that’s not really age appropriate–so I try to find keyboards that are more age appropriate.
The teepee is a cozy spot for reading books or a nap. Truthfully, he doesn’t it use it much but every once in a while I’ll find him crashed out in there.
This red piano is one of his favorite things. I found it on Amazon. And he loves to pluck the ukulele as well.
David is such a happy kiddo–so he really doesn’t need a reminder to not complain. This reminder is really for us–this is David’s happy place–so if you come into his room you better have a good attitude.
I mixed and matched a bunch of bedding from the kids department at Target. I wish I had gotten a queen comforter instead of a twin. I still might go back. That way his comforter would go all the way to the carpet instead of just over the sides of the bed.
Hello friends! Big news–David got new wheels–his first wheelchair. We’ve been using a BOB stroller for the last couple years and it’s been great, but David has grown a lot and he needed something bigger.
How about some hellos for a new week?
Hello feeling grateful for David’s new wheelchair. It’s going to be wonderful for traveling. We’re going to England in a few weeks and it will be helpful with the airport and bigger excursions.
Hello feeling frustrated. I wish David could walk more {or maybe I should say cooperate more?} It’s a pain to have to lug the wheelchair around. Also we’re still fighting with insurance to get them to help us pay for it.
Hello content. David seems to love his new wheelchair {which is also an adapted stroller}
A few months ago, as we traveled down to Southern California to see family for Christmas, we stopped at El Pollo Loco for lunch. Steve placed our order while I got David settled in the booth and pulled out his pre-prepared foods and a spoon. Because of his disability, David eats a special diet and all his meals are blended to a smooth texture. As I began spoon feeding him a woman come over to us. She looked at David’s small hand with only two fingers and compassion filled her eyes. I could feel her love towards him.
As she approached us I wondered what she would say. Would she ask for a hug from him? Every thing about her seemed like she wanted to wrap her arms around him and snuggle him.
“Hello,” she said with a tremble in her voice. “He is so precious. Can I give him a gift?” She pulled out a crisp $100 dollar bill and handed it to me.
“Thank you, you are so kind, but that is not necessary.” I said with a smile.
“Please,” she said, her eyes pleading with me to take the money.
“He is fine, don’t worry. Someone else must need this money more than he does.” I tried to explain.
“I want to give it to him. Please, please take it.” She pleaded.
“Okay. Thank you. Wow. God Bless you.” I stumbled over my words as I stood up and hugged her. We embraced and as we said goodbye she wiped a tear from her eye.
This isn’t the first time someone has given David a generous gift. I’m unsure what to do in these situations–we don’t really need the money–David has everything he needs and more. But, how can we reject a gift given with so much love? So much bravery?
We finished our food, gathered our things and headed back to the car. As we continued our journey Steve and I talked about what we should do with the money. Let’s keep our eyes open for the right person. We’ll find someone who needs this $100 and pass it on to them.
God please bless her, I prayed as we drove. I pray her gift comes back to her tenfold.
Later that day we picked up our family from the airport. We shared the crazy story with them and talked about the kindness of strangers. We also talked about David’s beautiful heart and how he draws people to him. It’s something I can’t explain but I’ve seen it happen again and again.
A couple days later we woke up in a hotel room, threw on sweats and headed down to the hotel restaurant for breakfast. We had been exploring Los Angeles with our extended family as we were all wiped out. It was Christmas Eve and the hotel was mostly quiet. We were seated at a big table and our server came over quickly to fill our mugs with hot coffee. He smiled at the kids and made small talk–asking us what had brought us to town on Christmas Eve. We went around the table and each of us placed our order for an omelet or waffles. When he got to David I told the server David was fine–I had brought special food for him. Our server smiled at David and then headed to the computer to put our breakfast order in.
This server was extra attentive with a kind smile and a gentle heart. He kept checking on us, but specifically asking after David, making sure he had everything he needed. When I finished feeding David his pre-prepared blended food, the server asked if he could take the containers to the kitchen and wash them for us. We have never had a server ask to do that! It was so thoughtful. Steve and I were both touched by his kindness. We looked at each other and smiled. This was the person who needed the $100. This gentle soul, who noticed David and went out of his way to show kindness, should be the one who received this generous gift. When the bill arrived, Steve paid with a credit card and left the crisp $100 bill as a tip.
As we got ready to leave, the server made his way to Steve.
“I think you made a mistake.” He said, showing Steve the credit card receipt next to the crisp bill.
“No, no mistake. That is a gift for you.” Steve replied.
The look on the server’s face was a mix of genuine surprise, sheer joy and overwhelming gratitude. When I saw his face I thought I might burst into tears right then and there. I’m tearing up right now thinking about it. I am confident, this was the person who needed the $100 bill. I have no doubt God put this person in our path.
I wish we’d had time to tell the server the whole backstory–that it really wasn’t a gift from us, but a gift from a stranger we had met a few days earlier. I wished we could have found a way to explain that David, our son who only has two fingers on his left hand, our kiddo who is non-verbal, has a spark that brings out kindness in people. This kindness, this love, is bigger than David–big enough to connect strangers in different cities. Every good deed comes back bigger and better. Love stretches and grows and binds us together.
Love Given is Love Gained
Generosity brings freedom Bravery makes us stronger Smiles are contagious Kindness rubs off on others Gentleness calms the soul Creativity inspires creativity Laughter is infectious Honesty breaks down walls Forgiveness fortifies the heart Love given is love gained Good never goes to waste It comes back bigger and better Love grows and stretches and binds us together
David, fifteen years ago we held you in our arms and cried. You weren’t what we expected and we were grieving. I didn’t expect to have a baby with a syndrome, heart defect and only two fingers on his left hand.
I cried tears for me, what would my life look like now that I had a child with special needs?
I cried tears for you. What would your life look like as you navigate living with special needs?
From the moment I saw your sweet face I loved you. I was your mama and I would do whatever I could to protect and nurture you. But I worried about how other people would treat you. I wished you could run and play and be silly like other children.
I feel silly saying this now, but I wished I could change you.
I felt pity for you, I felt pity for me.
I didn’t know it then, but sweet David, you were born to do big things.
You are a world changer!
My pity has turned to pride.
My worries have subsided as I see you soak up life and give love to those around you.
Everyday you teach us how to live with well.
You have helped us stretch and grow our hearts to make room for more joy.
You have shown us what it looks like to love with your whole heart.
Last night Matthias sat down beside me on the couch and told me, “Something amazing just happened.”
I set aside what I was doing so I could give him my full attention.
“Tell me.” I said.
“David was relaxing on the gray couch so I went over and sat down. I said ‘Hi David.’ and he looked at me, I mean really looked into my eyes. We sat there for a moment just looking at each other. I saw him in a new way and I felt something deep inside.”
“That sounds like a soul connection.” I told Matthias.
“Yeah” he said with tears in his eyes, “A strange feeling came over me. I felt an overwhelming love for David.”
I felt goosebumps on my arms. Matthias and David shared a moment beyond the physical, beyond the ordinary. Despite David’s disability and his inability to communicate with words, their souls met, their souls connected.
“Yes,” I replied, “I’ve had those experiences with David, too. Every once in a while, we have a moment where our souls connect in a deep and meaningful way. There are no words spoken, we’re just caught in a quiet moment and souls see each other. It’s a beautiful and miraculous thing.”
Matthias’ experience reminded me how important it is to slow down, be quiet and listen. He reminded me when I take time to simply be present, with an open heart, amazing things happen. We are drawn to each other with a kind of magnetic power. We walk together on this beautiful winding road, and sometimes we have a magical moment where our souls connect in a way that’s impossible to explain. Love is powerful force that draws us near. This is the meaning behind the Draw Near necklace.
Have you experienced a deep soul connection with your child, spouse or friend? Tell me about it!
Can I tell you something? I have worried about David his entire life. And the guilt, so much guilt. At times it has been completely overwhelming. I’ve worried about his physical health–making sure he has nutritious foods, the right medicines in the correct doses, and doctors who take time to understand his unique needs, but I’ve also worried about his mental and emotional well-being. What is it like to be trapped inside a body that does not cooperate? David cannot speak with words. He cannot dress himself or prepare his own food. He depends on me for survival. I worried if I did not give David every single thing he needed, he would not be okay. It all depended on me—or so I believed.
This simply is not true.
David is not only okay, he is incredible. He is powerful. He is learning to communicate his needs and wants. He entertains himself and soothes himself when he is upset. He connects deeply with other people. He is genuinely happy and it’s not because of me. Yes, David needs extra help and attention. There are things he cannot do for himself. But his disability does not mean he is powerless. He does not need my pity.
{Can you see that spark?!}
Inside David’s heart there is a spark all his own. It shines brightly. It is what makes David, David. It is why other people connect so easily with him. It is how he connects to the God of the Universe. I am able to meet some of David’s needs, but I am not required to meet all of them. I am just one person. When situations arise where I am unable to meet David’s needs, God will provide a way. Either David will meet his own need or someone else will be there to help. David will be okay, I truly believe this.
It wasn’t just David I worried about. For so long I believed I was responsible for everyone else around me. It was my job to manage their thoughts and feelings. I believed somehow I could control the world around me. It all rested on my shoulders. It was my job, and mine alone, to create a beautiful home, raise kids who thrive and to nurture a marriage with deep connection.
There were days I would walk around in a fog. Other people’s thoughts and emotions crowded in around me to the point where I could barely breathe. It was a fog so thick, I could not see through it. I could not think straight. It was too messy. I could not make sense of it all. The fog was suffocating.
I tried to be needless and wantless and put myself last. I tried to be everything I thought I should be. I tried to say everything I thought I should say. I tried to prove I was lovable, I was enough, but I couldn’t do it. No matter how hard I tried, it never seemed to be enough.
I am learning I have nothing to prove. I am growing and beginning to believe I am lovable just as I am. In this process I found out something AMAZING.
When you get to a place where you understand that love and belonging, your worthiness, is a birthright and not something you have to earn, anything is possible. ~ Brené Brown
Inside my heart there is a spark. It’s the center of who I am. It is my truest, most beautiful self. This spark is my North Star and it is there to guide me. My North Star shines so bright it burns away the fog around me. My North Star is how I connect with the God of the Universe.
I hold this spark inside my heart.
My spark is what makes me, me.
My spark makes me beautiful.
My spark lights me up from the inside.
My spark has facets like a diamond.
My spark makes me curious, angry, sad and silly.
My spark makes me wonder and explore and ask questions.
My spark makes my feet stomp and my voice loud.
My spark makes me cry while heavy tears fall.
My spark makes my eyes twinkle and my mouth smile.
My spark is all mine.
And David’s spark is all his. It shines bright!
And your spark is all yours. You shine so very bright.
God has given each of us our own spark, our own North Star. I cannot tell you how to follow your North Star, just as you cannot tell me how to follow mine.
I cannot make my husband okay.
I cannot make my kids okay.
I cannot make my friends okay.
I can love them. I can listen to them. I can walk alongside them. But each of them must look to their own North Star to find their way.
Trust God from the bottom of your heart; don’t try to figure everything out on your own.
Listen for God’s voice in everything you do,
everywhere you go;
He’s the one who will keep you on track.
Proverbs 3:5-6
I can feel my feelings, you can feel your feelings.
I can think my thoughts, you can think your thoughts.
I can say what I want and need, you can say what you want and need.
Each of us can be completely ourselves.
Each of us can look to our own North Star.
This where we find love and hope. This is where we find peace.
When I follow my North Star I will always be where I’m meant to be.
When you follow your North Star you will always be where you’re meant to be.
This is the meaning behind the *new* North Star necklace. Each handcrafted charm has an initial on one side and a Braille constellation on the reverse side. Your personalized initial is a sweet, gentle reminder to follow your North Star.
Create your own North Star Necklace here.
I have been surprised to find many times, instead of me teaching my kids, it’s my kids teaching me.
When Matthias was in first grade, David’s 1st-3rd grade special needs class would walk over to Matthias’ classroom for reading time, language arts and special projects. Mainstreaming created a space for students with special needs to learn beside their typical peers. In this environment every child benefits and grows.
While Steve and I love mainstreaming and having special needs kids working with typical peers, we were concerned for Matthias. He had just begun first grade and was adjusting to a full day at school. We didn’t want him to have to explain why his brother had only two fingers on his left hand or why his brother couldn’t speak with words. We didn’t want Matthias to feel he was in the spotlight. We wanted Matthias to have his own space at school. We explained our concerns to David’s teacher and we all agreed it would be best to have David work on skills such as kicking a ball or sorting colored blocks, while the other special needs student mainstreamed into Matthias’ classroom.
A couple months into the school year, David was playing in the small playground next to the larger playground. Matthias spotted David and his aide over on the little playground.
“Oh my gosh!” Matthias yelled as he ran over to the chain link fence separating the two playgrounds.
“David, DAVID! I’ve been looking everywhere for you!” he yelled, waving and calling to David.
As David and his aide made their way toward the Matthias, Matthias turned and called his friends over.
“You guys, come here! Quick! I want you to meet my brother.” Matthias said.
Matthias was joined at the chain link fence by three or four friends. On the other side of the fence stood David and his aide.
“This is my brother!” Matthias said with pride. “When David was in my mom’s tummy his instructions got mixed up. That is why he only has two fingers on his left hand. That is why he is so small. That is why he can’t talk. But isn’t he AWESOME?!”
Matthias’ friends nodded with smiles.
“Bye David!” they all yelled as they ran back to their game.
When I arrived at the school that afternoon David’s aide recounted the whole story to me. I could feel the lump in my throat as she described how excited Matthias was to see David and introduce him to his friends.
I felt tears filling up my eyes as I realized I didn’t need to worry about Matthias. I didn’t need to create a safe place where he could be himself without having to explain about his brother with special needs. Not only was Matthias capable of explaining David’s special needs to his peers, he was proud of his brother. He loved his brother. He wanted to be near his brother. Matthias is better because of David and David is better because of Matthias.
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.
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.
That blue truck was Steve’s when he was a little boy and he called it ‘Wonderfox’ which is awesome.
Hello 
Hello to this sweet guy. I love him. ❤
Hello pineapple for David and Matthias. They both loved it.
Hello monster behind David who keeps sneaking up on him. David loved it.
{Can you see that spark?!}
