Lately I’m inspired to create a space that’s fun and fits David’s needs. Of course I’ve always wanted his room to be a great space, but I’ve been watching him closer–which toys he plays with and how he spends his time. Every kid is unique and deserves a space to thrive and play. David has special needs and we want to fill his room with the things he loves.
David has a syndrome called Cornelia de Lange and people with his syndrome sometimes have difficulty sleeping. He’s up a lot at night. His room is safe and fun–with a cozy bed that he can climb in and out of as he wants to!
It seemed like David’s bedding was falling off his bed more often than not–so we got a Beddy’s comforter for him. It’s like a soft sleeping bag that goes on like a fitted sheet. No more blankets falling off the bed!
David loves keyboards and toys that light up and make noise. He loves books and sensory toys–like a slinky or a tambourine. That basket is full of more toys that we rotate out to keep things fresh and new.
We put a big keyboard on his dresser and David really gets the music going—drum beats and all! He likes to turn up the volume full blast. Typical teenager, right?!
The framed Dr. Seuss quote is a gift from our dear friends Rob and Susie who know how much David loves a good story book! The basket is fair trade and my first children book, Your Spark, is a regular read around our house. After all, David is a big part of the inspiration behind the book. He shines so bright! Find Your Spark book here.
This adorable prayer plaque hangs on his wall and we say this prayer before bed. I wrote the poem so we could memorize it and make it part of our bedtime routine. You can find it in my shop!
Good night, Sleep tight. May angels watch you through the night. To keep you safe, to calm your fear, to whisper peace. Your God is near. Amen.
David has a walk-in closet with double doors. We leave the doors open and created a space to play. We used to have a big floor cushion with pillows but he never used it. For Christmas he got this desk {actually a side table I found at a thrift store for $40} and red chairs from Pottery Barn kids. {thank you, Nana!}. He has started sitting down on chairs independently–a new skill–and it’s so fun to rotate the toys and books on his desk.
Here’s a picture of David’s closet–with lots of his favorites toys and books,.
This desk area is getting a lot of use and it makes me so happy!
That’s David’s room! A work in progress but a very loved space. Do your kids spend a lot of time in their rooms? Do you rotate toys and books to keep things fresh and new?
A few years ago my husband, Stephen, and I had to take a last minute business trip. My twin sister offered to watch our two boys, one with profound special needs. When we got back from our trip and I asked her how it went, she said, “It was really, really hard.”
I looked in her eyes and I felt seen. I broke down crying.
If you’re a mother of young children, caring for someone with special needs or aging parents–you understand. It is hard. Years ago, I almost never asked for help. I tried to do it all myself. My husband was willing and able but I still tried to shoulder most of the load. I didn’t want to burden my husband, friends or family. I thought I could do it on my own. I thought it was my JOB to do it on my own.
It wasn’t any one task that was hard. Giving a bath wasn’t hard. Changing a diaper wasn’t hard. Giving medication wasn’t hard. Scheduling a doctor visit wasn’t hard. Feeding a child wasn’t hard. Even dealing with a tantrum, while exhausting, was still do-able. But all of it–all of the tasks, to dos, emotions and being available 24 hours a day was HARD. It was overwhelming. Honestly, it was suffocating.
Why don’t we ask for help? I’ve spent time thinking about this and asking friends for their perspective. I’ve worked hard to overcome false beliefs in my own life and start to ask for help–and I still have a lot to learn.
Here are 10 reasons we don’t ask for help.
We’re so tired we can’t figure out HOW to ask for help.
We think we should be able to do it alone.
We worry someone else won’t love this person as much as we do. Even worse, what if they hurt the person we love?
We’re afraid we’re not doing a good enough job and you’ll judge us.
We can’t ask for a favor because we don’t have room to repay the favor.
Paying for help is expensive and we can’t afford it.
We don’t want another person around. Life is already complicated without adding another personality.
It’s easier to do it on our own–that way we have control.
Our house is a mess, our heads are a mess, life is a mess and we don’t want you to see our mess.
If we ask for help and take a break we might realize how overwhelming it all is and completely fall apart.
Our family is in a season with lots of doctor visits. David has a big spinal surgery coming up and we will see all of his specialists for clearance before the surgery. I counted last week and we 9 doctor visits in Los Angeles before his surgery. It’s big and overwhelming and we need help. I can’t do it alone. So I’m slowly looking at what we need, thinking of practical ways people can help and then I’m doing something crazy–I’m asking. We’re hiring caregivers and showing them how to care for David. We’re asking friends to bring meals. We’re planning overnight care for David during the surgery recovery. It’s imperfect and messy but it’s necessary. I’m learning how important help is–and I’m feeling hopeful.
My word for this year is ‘simplify‘. I want to make space for David’s medical needs, surgery and my emotional well-being. I want to keep our calendar manageable and avoid overwhelm. I want downtime to read, walk and rest–even in this stressful season. I want to feel my feelings and speak honestly. I want to build a community of people who love and support us–and who we can love and support. We have help and it’s amazing. My heart is full of gratitude. I want to continue building a team of people who help us. I want to make space so we can help others too! I truly believe our burdens are lighter when we carry them for each other.
My word this year is S I M P L I F Y. I’m loving this necklace. Click image for details.
How can you ask for help? I see you mama–pouring out love on your kids. I see you friend, caring for your aging parent. I see you teachers and doctors and nurses and therapists–you pour out love and care for others. You matter–your needs and wants, thoughts and feelings MATTER.
Personalize with a meaningful word, special names, dates or a phrase.
I’d love to hear your thoughts. Does this list resonate with you? Why is so hard to ask for help?
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.
I did a lot of ‘research’ on Pinterest before our trip to York, England. One thing that kept coming up again and again was tea and scones at Betty’s in the center of the city. There is often a line that goes outside the door and wraps around the building. To avoid the line, I made a reservation for an afternoon tea. The kids weren’t super into it but I had so much fun! I think it’s great for them to experience all kinds of things–not just kid stuff. David was very mellow and cuddly which worked out fine. The staff was so kind and really tried to find some things he could eat. In the end they brought him some soft cakes and apple juice. So fun! Champagne for the adults. ❤
Matthias brought his drawing supplies and stayed busy during the tea. He tried many of the sandwiches and cakes. I think he would have preferred a burger or chicken nuggets but hopefully someday he’ll thank us for the experience.
Have I told you how much I LOVE scones with clotted cream and jam?!
Lindsey is with us to help out with David and it’s been wonderful having her along.
Very serious faces for a very serious afternoon tea.
More Earl Gray please! With a little milk and one sugar. Have you ever done a proper tea? {To clarify, the tea was proper but we definitely didn’t have all our etiquette down. Oh well, we had fun!}
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}
Father’s Day is right around the corner and I’ve been thinking about what an amazing father Steve is to our boys. I think about it a lot, actually. It’s not perfection that makes him amazing, he’s not perfect and he would quickly admit that. What makes him amazing is his desire to stretch and grow and become who he is made to be. He models for our boys every day what it looks like to bravely step into the things that scare you, instead of running away or living in denial.
To bravely step into what scares him means he has to acknowledge hard things. He looks at a problem from all angles and considers different solutions. He values honesty. He is honest with himself even when it hurts. He’s honest with me even when he’s nervous to tell me something I don’t want to hear. He’s honest with our boys about life, faith, money, friendship and so much more.
I see David’s face light up when Steve comes into the room and throw his arms around his dad for a big hug. Watching Matthias grow into a teenager {practically a man!} I watch Steve engage in deep, honest conversations and I’m overwhelmed with gratitude. Steve loves our boys in a way I cannot. David and Matthias are loved by their dad and it’s a gift they most likely can’t comprehend.
I know few people who crave learning like Steve does. He took up guitar a few years ago and he’s really good! I love hearing him play and sing. While our boys were little he earned a doctoral degree. When our business started to grow he jumped in as CEO and hungrily read every business book he could get his hands on. He asks others for advice and insights and listens to what they say. He wants to grow, it’s who he is.
He makes me stronger. Being married to someone who is constantly learning and growing means I am constantly learning and growing. Steve pushes me to try new things, loosen up, be brave and live life to the fullest. I am willing to take risks because I know he’ll be by my side no matter what. He loves to travel, try new foods, meet new people and gather new information.
He reads to David, has nerf wars with Matthias, whips up high protein pancakes for our family each morning and snuggles on the couch to watch a movie in the evenings. He’s intense and sensitive, a visionary and a do-er. He’s high energy but loves to snuggle. He works hard for our family and drops everything the moment one of us needs him. He doesn’t think he’s got life figured out and he apologizes when he makes a mistake. And he’s got the cutest smile, too.
It has been fun to stand beside him as he launches his own brand Stephen David Leonard. Every design reflects who he is and what is important to him. His shop is full of products he uses every day. If you haven’t seen his new line, you can check it out here.
Our life together is beautiful, messy, loud, adventurous and far from perfect but we are better together, bound by laughter and tears, I-love-yous and forgiveness. Steve shows us how to live bravely, being willing to make mistakes, take responsibility and move forward.
Happy Father’s Day, sweetheart. We are better because of you.
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.
That blue truck was Steve’s when he was a little boy and he called it ‘Wonderfox’ which is awesome.
David was very mellow and cuddly which worked out fine. The staff was so kind and really tried to find some things he could eat. In the end they brought him some soft cakes and apple juice. So fun!
Champagne for the adults. ❤
Matthias brought his drawing supplies and stayed busy during the tea. He tried many of the sandwiches and cakes. I think he would have preferred a burger or chicken nuggets but hopefully someday he’ll thank us for the experience.
Have I told you how much I LOVE scones with clotted cream and jam?!
Lindsey is with us to help out with David and it’s been wonderful having her along.
Very serious faces for a very serious afternoon tea.
More Earl Gray please! With a little milk and one sugar. Have you ever done a proper tea? {To clarify, the tea was proper but we definitely didn’t have all our etiquette down. Oh well, we had fun!}
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.
