david update

an everyday moment, david By January 7, 2014 17 Comments

Hello friends!

We are getting back into the swing of things around here. It’s a little hard but it feels good, too!

If you follow me on instagram and facebook, you may have heard that David hurt his foot last week. Thank you so much for your love and concern. Seriously, it blows me away. Since I’ve been getting questions, I thought I’d fill you in on all the details here.

 Last Thursday, we had a big family dinner at my parents’ home in Southern California. It was a fun evening filled with lots of laughing, opening presents and kiddos running around. David was very brave and climbed the stairs all by himself a few times. Steve took a video and you can see it here. We were helping him down and on the very last step, he slipped and immediately burst into tears. I thought it just scared him, so we cuddled for a while. But when we stood up to leave, he refused to bear any weight on his right foot. He was fussy and nervous. David doesn’t have any words, but he couldn’t have communicated more clearly–something was wrong with that right foot.

My brother is a doctor, so he examined it, but couldn’t find any specific problem. After debating for an hour or so, we took David to the ER for an x-ray just to make sure it wasn’t broken. The good news is, it’s a sprain–no broken bones!

He won’t put any weight on the foot, so he can’t walk. If you know David, that means he can’t explore and get into trouble like he usually does. It’s been fairly frustrating for him. He scoots around on his bum or knees but he’s not able to move like he usually does.

It’s been challenging bathing and diapering him–and I’ve been feeling very thankful that he’s able to walk and have the independence he usually does. It will take a week or so before he’ll be able to be up and around again.

Thank you for caring about our sweet David. It’s been amazing to see him communicate about his foot and to see his determination to get around and live life. We love our sweet boy!

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life lessons from david

david, finding beauty, finding love By November 22, 2013 42 Comments

David is eleven and a half years old. Sometimes I have to stop and absorb that–it seems like just yesterday he came into our lives and turned everything upside down {and made life BETTER}. When he arrived I felt broken to bits, but as we regrouped and healed, I began to grow and learn. He’s taught me about what’s important and what’s not. He lives life with passion–and I want to be like that, too.

But lately, I don’t know, it’s like he’s growing and changing and doing new things every day. He’ll walk up and take my hand and lead me to the front door–letting me know that he’s ready to go out for an adventure. Or he’ll climb up on the couch next to me and lay his head on my shoulder–completely melting my heart. When I arrive to pick him up from school, a huge smile takes over his face and he throws his arms around my neck. At dinner, he pushes away the spoon if it’s food he doesn’t want and pushes my hand toward the food he does want. He’s able to communicate his preferences and initiate affection–and with each step of growth it’s like a window into his soul. I know him better and I understand him more. It deepens our connection and it makes my heart want to explode

Here are some life lessons David’s been teaching me lately.

1. Give kisses. Lots and lots of kisses {over and over}

2. Take baths whenever you want. Take multiple bathes a day. If you’re dirty, sad, your tummy hurts or if you just need a good soak–go hop in the tub.

3. Hold hands whenever possible.

4. Eat your favorite foods every day–especially vanilla yogurt.

5. Smile at strangers

6. Music heals the soul and should be played as loud as possible all hours of the day and night.

7. Always keep a cozy blanket nearby

8. Don’t hold a grudge. It’s not worth it.

9. Jump in puddles and dig in the dirt.

10. Soak up THIS moment and don’t worry about tomorrow.

Oh friends, just writing this list is making me tear up. I want to live more simply and soak up the moment. I want to be happy and not grumpy. Are you learning any life lessons lately?

 

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what is, is beautiful.

david, finding love By November 12, 2013 11 Comments

I shared this post a couple years ago and this is still my heart today!

the other evening after tucking the boys into bed, steve came downstairs and said, ‘i just had the most surreal experience. i was telling david to lay down and kissing him good-night and as i looked at him i saw a nine year old boy–no disability. just david. it was like our souls had a connection.’

as soon as he described the interaction the tears began to roll down my cheeks. i knew exactly what he meant–there are times, small moments, when i see beyond david’s disability and into his soul. and i see a little boy stuck in a body that won’t cooperate with him. i see him wanting to speak words and unable to get them out. i see him wanting to tell me something, to ask for something or describe something but there is a chasm between us and it’s too wide to cross.

and sometimes in those moments i let myself dip my toe into the dark, scary pool of what if? what if david wasn’t born with a disability? what if he had ten fingers? what if he could munch on a hamburger and fries at mcdonald’s and begged to play just one more game on the ipad? what if he could imagine stories and tell me all about them and illustrate his ideas on leftover sheets of computer paper?

the truth about ‘what if?’ is, it doesn’t exist.

the truth is, i will never know ‘what if?’

the truth is, david was born with a disability. he has seven fingers instead of ten and he can’t speak words or express complex thoughts. he is a soul stuck in a broken body.

and the truth is, time spent thinking about ‘what if?’ is time wasted.

today i choose to focus on what is. today is a new day with joy waiting to be discovered. today is a new day with mercies waiting to be uncovered. today i am grateful for what is. grateful for an eleven year old who is healthy and silly. a little boy who is curious and loves to explore and learn new things. grateful for my sweet son who loves to cuddle and kiss and be tickled.

what is, is beautiful.

For David, for hope–go find our more about the ‘tied to my heart’ necklace here!

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love to celebrate life and unique ! {David turns eleven!}

celebrate the every day, david By July 9, 2013 19 Comments

David turned eleven on the fourth of July! And we were happy to have a mellow evening at home with friends. I hung some bunting on the front door to welcome our guests.

He’s small but mighty. David was only 4 pounds 2 oz. at birth and he grows slowly. But he’s full of love and spunk and determination.

Definitely cause for celebration! So we broke out our fun cake topper.

We had lots of soda on ice for the kiddos {including mexican coke which is 10x better than regular coke!} and make-your-own-mojitos for the adults. Yum!

We ran by Target earlier in the day to pick up a few things and Matthias ended up with a new set of Halo mega blocks. So while we prepped for the party he was building.

We BBQ’d burgers and hot dogs, and I blended up a hot dog and bun for David. I squirted a little ketchup on top. It looked disgusting but I’m sure it tasted awesome. I seriously love a good hot dog.

We sang ‘happy birthday’ and David ate the frosting off his cupcake. Then he had a sugar rush and danced around a while.

While the sun was setting we went out into the front yard and played with poppers and snappers. It was a blast.

David got lots of love and snuggles on his birthday. I’m so thankful for you, David! We love to celebrate your life and how unique you are! What will this year hold? I can’t wait to find out.

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it’s david’s birthday! {and a gift for you!}

david, finding love By July 4, 2013 12 Comments

Dear friends, our David is turning 11 today. It seems impossible, but it’s true! Today we’re planning a low key dinner with friends.

Eleven years ago this little boy came into our lives, turned everything upside down and brought a new kind of joy to every day. He’s taught me how to live in brokenness and how to look for beauty. I wouldn’t have chosen this path, but I wouldn’t change it either. I am so thankful for you, David.

David has taught me to look at the world in a new way. He is one of the most loving, joyful and determined kids I know. Today we’re giving away $20 in love bucks with every purchase as a thank you for journeying with us and being part of this community. I am encouraged in this place and thankful for YOU!

Happy birthday, David! Click here to shop and happy fourth of July to YOU!

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David update {craniofacial clinic}

david By May 10, 2013 68 Comments

Oh friends! Thank you for thinking of us as we met with the craniofacial team at UCLA last week. I was so nervous about the appointment. I knew it would be long and exhausting–and I was worried we might get some bad news. I especially worry about surgery–ugh. That’s the ‘S’ word around our house!

We arrived at UCLA at 10:30am and David and I headed up to the crania-facial clinic while Steve and Matthias hung out nearby. I wanted Steve close in case anything unexpected came up–but there is no way Matthias can handle 7 hours in a doctor’s office. They found candy in the cafeteria and a nearby Target–so Matthias was a happy camper!

The sun was shining outside on the rooftop playground so David and I played as long as we could. He kept trying to go back outside during the appointments. It’s so nice they have that play space for kiddos!

We saw 10 different specialist including a limb deformity specialist, a plastic surgeon, a dentist, an audiologist and the list goes on. After 5 specialists, David crashed out. I was ready for a nap, too!

All of the doctors were so incredibly kind and patient with David. And he LOVED the attention. He held hands with them and sat on their laps. It’s easy to fall in love with David.

They took a blood sample and did a spinal X-ray. We uncovered two BIG pieces of information during the day. The first is that David is missing some adult teeth. This isn’t a huge problem, but it may require dentures in the future. The second discovery is that David’s 2nd and 3rd vertebrae in his spin {very high up in neck} are fused together. It’s been this way since birth but we didn’t know. It’s not life threatening and doesn’t require surgery–but it means his neck is more fragile. So we’ll continue to use a very sturdy car seat and we’ll avoid rough play.

At the end of the day, we met up with Steve and Matthias. I went to grab a coffee from the cafeteria for an evening boost. As I went to pay for my coffee, I accidentally spilled it down the front of me. The cashier was so kind and patient. And I burst into tears. I think it was a combination of worry and relief and exhaustion. I was one very tired mama!

We are planning follow-up visits with many of the specialist–particularly with the dentist and audiologist. Can I tell you from the bottom of my heart how grateful I am for your thoughts and prayers? Your FB comments, tweets and emails helped me to get through a long, hard day. YOU are an encouragement to me–and I am so thankful for you!

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This moment is a blessing

david, family By April 26, 2013 67 Comments

This weekend we’re heading down to UCLA for 3 different appointments for David. This hospital has been a significant part of our journey with David. When he was 3 months old, our cardiologist rushed us out of an office visit and down to the cardiology department at UCLA for in-depth testing. Our tiny baby held still while they squirted warm jelly on his chest and looked at his heart on an echocardiogram screen. Once the tests were complete, cardiac surgeons reviewed the results. We left the hospital and strolled through Westwood’s farmers market, eating slices of berry pie while we awaited news of a possible open heart surgery that same day.

I remember what a beautiful day it was and how colorful all the vegetables and handmade crafts were. But inside, my heart was pounding. When the phone finally rang, we got good news. The doctors would not be performing emergency heart surgery on David and we were free to return to our little apartment on Ruby Street, just south of LA. Big sigh of relief.

Fast forward nine years to October of 2011. David was bigger and stronger and it was time to take care of his narrowed aorta and the holes in his heart that made him grow more slowly and become tired more easily. I’ve never been more terrified than when I watched him being wheeled away to the surgery room. Every hour or so, the surgery team called with updates.

We’ve stopped his heart.

We’ve made the first incision.

We’ve repaired the hole.

David is in recovery–all went well.

When the doctor came down to give us a complete report I was flooded with gratitude. How can you thank someone who mends your child’s heart and gives him more years to live? There are no words. Within 24 hours of surgery, David was up and walking, but a collapsed lung on day 3 made his recovery more difficult and painful. After a week in the hospital we returned home relieved and ready to get back to normal.

It took 5 weeks before David was strong enough to go back to school. The skin on the outside of his chest quickly became smooth with nothing but a small scar, but the bones inside of his chest took more time to heal. It took even longer for me to let go of the anxiety I had become accustomed to carrying with me. But slowly, life got back to normal again.

Next week we’ll visit with David’s pulmonologist and meet with a craniofacial team of 8 doctors who will look at everything from eyes and ears to teeth and brain. I feel a mix of gratitude and nervousness. I’m so thankful that we have amazing professionals who care for David and want the best for him. But if I’m honest, sometimes I worry about what the future holds and what health issues we’re going to encounter.

As we prepare I’m reminded that moments of heartbreak and pain have brought us days of joy and gratitude.

I don’t know what the future holds but this moment, right now, is good. This moment is a blessing. David is a blessing. And I am thankful.

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david update

david By September 28, 2012 48 Comments

So many of you care about our sweet David–and I can’t begin to tell you how much it means to me!

I told you we visited David’s pulmonologist at UCLA on Monday and the appointment went well. Later we got the results of David’s sinus x-rays and found out that he has some pretty serious sinus swelling and infection and also a large cyst above his left eye. He’s been congested for the last 8 weeks, so while we are relieved to be getting answers, we were so bummed to hear that there is a more serious problem.

In the next few weeks we’ll be doing an intense four week course of antibotics and we are using a new nasal spray to help with congestion. In a month or so, we’ll reassess with the doctors and decide if surgery is needed.

I was super sad for a day and cried a lot, but now I’m pulling it together and moving forward. David is a trooper. Even with his congestion and headaches he is happy and playful and living life to the fullest. There is so much to be thankful for and I don’t want to waste time feeling sad or angry. So I’m taking a cue from David and I’m living in the moment. I’m letting it be imperfect but beautiful at the same time.

This weekend we are celebrating Steve’s birthday {happy birthday sweetheart!} and relaxing a bit. What are your weekend plans?

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first day of school

david, matthias By August 24, 2012 20 Comments

These pictures were an attempt to document the boys’ first day of school. Um, yeah getting the three of us to look good in a photo was an impossible task–but these pics made me laugh out loud. And I figure, this is us and pretty much captures our crazy. And I love that.

David is offically an ‘upper grader’ now. He’s hanging with the big kids. I’m a nervous wreck! But it’s going to be great. Matthias loves his third grade teacher. It’s a new year. A fresh start.

We are so excited, how about you?

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a change of plans

an everyday moment, david By July 24, 2012 27 Comments

Yesterday I woke up, posted ‘hello monday’ to my blog, made my to-do list and I was ready to have a productive day. Early afternoon I noticed something unusual about David, called the doctor, rushed to the ER for more tests, prayed and prayed he wouldn’t need surgery and 4 hours later we got the great news–we get to go home! Antibotics should solve the problem and after giving him his third dose this morning, he already seems to be perking up. Thank you Lord!

Days like this are a reminder that I am not in control. I can make my to-do list, I can plan my days, but it is God who decides what each day holds and how each moment will go. Yesterday I felt the full range of emotions, fear, frustration, and peace. Did I mention fear? Ugh. I hate that feeling.

Today I’m making another to-do list but trying to hold to it loosely. I need to remember, I’m not in control.

I wonder what God has planned today?

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