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How to talk to your toddler about special needs

As a parent of two children with special needs, and one typically developing child, I get asked a lot about this topic. And to be honest, even after building our special needs ministry at church, and being part of the special needs community for 7 years, I am still learning how to talk to my 3 year old and her friends about special needs. So, yay! We can navigate it together! 

Let’s say you are at Target, picking up some milk and body wash, and you find yourself in the woman’s clothing section. [Don’t worry, we all do it.] While you are browsing the cute sweaters, your toddler says, “Mommy, look at that boy! Why is he so loud?” You look down at your sweet toddler for a second, and then scan the aisles. You see him. He clearly has special needs, so you glance away. God forbid his mom sees you looking, or worse, heard your toddler’s observation in her “outdoor” voice.

What do you say?

Do you shush your curious toddler and make a mad dash for the soap aisle? 
Do you say something and if so, what?

Breathe. You are not alone. We all have these moments when we see someone that looks or acts different than us and we internally panic for a bit. Here are some “best practices” to have in your parenting toolbox for the next time you find yourself in a similar situation.

Bad or good, how you react will inform your child’s reaction. (I know you know that, but it’s a good reminder for the both of us, so that one’s free.)

It’s a good thing she’s asking good questions. Don’t shut her down. Be thankful it’s you she’s asking. It’s something she’s curious about and that’s how we all learn. So way to go, kid! She’s paying attention to the world around her. I would simply say, “Good question!”

If your child said something that makes you want to crawl under a rock, like, “why is that girl drooling”, or, “why is his head so big” don’t freak out. You’ve taught your kid to be descriptive and observant. In fact, most kids are pointing out the obvious, it’s us that make it uncomfortable because we hear our mother telling us to be nice. Don’t shame your child. Normalize the conversation. “I bet there’s a really good reason, and I bet that boy is really brave.”

Then I would say, “Let’s go meet him!” Now, that is assuming mom there for milk and body wash, and happens to be browsing sweaters as well. (It goes without saying, but I wouldn’t recommend meeting the child unless you see it would be a good time to engage a conversation with a stranger. If not, skip to step 6).

However you would address a stranger is how you would address a person with special needs. Think of it like this. How would you want someone to interact with your typically developing child? My favorite interactions with strangers have been when they lead with a compliment. “Oh, your shoes are so cute!” “What beautiful eyelashes!” “Look at that hair!” Talk directly to the child and find something to compliment. Smile. Kids smell fear so be as cool and calm as a mom can.

I would take my toddler by the hand or hold her, communicating she’s safe, and I would go up to the mom and boy and say, “Hello! My name is Stefanie and this is my daughter Ellie. We noticed your cool chair (maybe if he was in a wheelchair) and awesome spiderman t-shirt. What’s your name?” Notice, I addressed the non-verbal child. I didn’t talk through him or over him, I talked to him like he was a “him.” Which leads me to my next point.

Assume they can understand. The parent will speak for the child if necessary. One of the biggest misconceptions when observing a physical limitation is that there is also a cognitive one. We have no idea what even a nonverbal child can understand, so your default should be they understand everything. One child asked if my middle daughter, Brooklyn could talk. I first thought, no, because I was thinking verbally. But Brooklyn can talk, I told them. She communicates with her eyes, her smile, and her body language. We just have to be better listeners. And, I know she understands a lot more than she can express.

After we smile and say “It was nice to meet you, Johnny!” I would typically walk away and wait until we got to the car to have a follow up conversation with my daughter. However, if the mom seems open and your child is a bit more curious, I would say, “Do you mind telling me a little bit about Johnny?’ Or even better, “Johnny, can you tell me a bit about yourself?” Stay away from “what’s wrong?” “What’s his problem?” Or, “What happened?” And here’s why...

What we teach our kids about themselves is how they will see others. If we focus on their abilities, or lack there of, they will judge others in the same way. If we focus on their character, who they are becoming, they will judge others likewise.

If you are following Christ, it a great time to talk about how creative God is. We need lots of different types of people to make up the body of Christ. How boring would the world be if there were only one species of animal or we all looked exactly the same? We all have different gifts, too, and people with special needs aren’t excluded from God’s design. In fact, sometimes God chooses “the least of these” or our most broken places to shine brightest. And we all have broken imperfections, don’t we?

In the end, it’s not about special needs, really. It’s about how we treat one another, regardless of what we see.

Have you ever had a similar conversation?
 What did you say?

What would you add to the list? 

Share this post and add your comments on Facebook, I'd love to hear them!


Little Yellow Lamborghini


Sunday marked a close to a 9 year run on staff at Immanuel. What a great ride. The staff was so kind and gave me a little send off after second service.  Sheryll made a fantastic cake with a yellow Lamborghini on it that said, "Drive!!!" Josh shared that in my resignation letter, I told a story about a little girl and her father, and a yellow Lamborghini so I thought it would be fun to share the little tale with you.  


Written November 2015

One day, a child was given a little, yellow Lamborghini hot wheel for her birthday from her father. What may have been an odd gift for a girl, it quickly became her favorite little treasure. She adored her dad, and loved that he had given her such an amazing gift. To her, it was perfect. She took it everywhere with her, and at every chance she got, she would take it out and drive it. Back and forth, back and forth. She would build elaborate ramps, and parking garages, and car washes. She would drive it through the mud, down the slides, and under tables.

And every night, her dad would tuck her in, set her little Lamborghini on the nightstand, and kiss her little forehead and say, “I am so proud of you.”

Years went by, but the little girl’s love for her toy never changed. The car was well worn as anyone could see by the chipping paint and sticky wheels.

In high school and college, the car was almost lost. The young woman was reckless and the tiny car spent most of the time in a dorm room drawer. Until one day, as she was unpacking after college, she found the little treasure and put it back in it’s rightful place.

A few years later, she started a family her own. She kept her precious car on her desk at work, reminding her of her father, and fond memories she had playing with the gift as a child.

On her 35th birthday, her dad gave her a little gift. It was box, wrapped with a beautiful, yellow bow. As she opened it, she saw a little, yellow Lamborghini, almost the same exact one she got as a young girl. He kissed her and said, “I am so proud of you. And, no matter what, I always will be.” As she pulled the car out of the box, she realized it wasn’t a hot wheel, it was key chain, with a key dangling at the end.
It was to a real yellow Lamborghini.

Confused and shocked, she asked her father what it all meant. He told her, “I have been watching you your entire life driving and treasuring this little hot wheel. Caring for it, loving it. Sure, there were times you got it sticky, or ran it into some stuff...even seasons it was misplaced or sat on the nightstand. But I thought this year, I would see if you would want to take a real one for a spin. I have been saving for years and would love to go on an adventure with you before it’s too late.”

“But you don’t have to. I understand what I am asking is scary. It’s not part of your plan. You could even get hurt. And in order to drive, you will have to let a lot of stuff you love, go. But if you trust me, I have a great adventure planned for us. And, I will be with you the entire ride. Who knows, we might end up right where we started. But you will be changed forever.”

November 19th is my 35th birthday.

And I feel my Father is inviting me into a grand adventure and he has offered me the keys to a risky, scary, beautiful ride. He’s charted our course, and now He’s asking me to drive. And, I am terrified, but know that my Father’s with me.

I don’t just want to tell stories. I want to live an amazing story. I want to look back with as few regrets as possible. I want to be a Christian that says yes to God when it is risky and uncomfortable and unknown. I want to be a mom that says yes to her children and makes the most of the time she has with them. I want to tell anyone who will listen that God is in the business of redeeming pain. That if we choose to change our perspective, if we choose a posture of surrender, if we wade into our brokenness and imperfection, he will turn it into something beautiful for ourselves, and the world.


God's Perfect Timing and Transracial Adoption: A Guest Feature by Sarah Alm

We met the Alms years ago while both serving in youth ministry. Sarah and her husband, Jason, were on the junior high team, and Justin and I were on the high school team. After years of arm twisting and a lot of things out of my control, to my joy, they joined the high school team. Sarah is always up for anything, the crazier the better. I will never forget Summer of 89, our freshman retreat, when she played "buck-buck." I don't think I ever laughed harder than that day. She has been there to catch my tears, to offer a listening ear, and she shows up, which is a big deal to me. She is the girl I get into the most trouble with, and maybe am the most myself with. She just has a way of bringing out the best in others. In fact, we affectionally call her Switzerland because she is everyone's friend.

Sweet Sarah wrote this blog post for me back in August and for some reason, to which I have no idea until now, I haven't posted it. But I guess it is perfect timing. 

>>>   <<<

In Sarah's words:

My journey to plan B has brought me through deep sadness, but has also lead me to great joy. The road of life can be dark and bumpy, but through those times, I’ve learned that God can be trusted and is in control. Here’s my story…

I was born when my amazing birth mother was just 16 years old. She was not able to raise me, so she made the selfless decision to choose adoption. I was adopted by my mom and dad when I was 2 weeks old. My parents were actually living out their plan B, as well. They were unable to get pregnant, so they chose to build their family through adoption. They first adopted my brother, and then 3 years later, they adopted me. I remember my mom saying that she was thankful for her infertility, because without it, they wouldn't have me or my brother. I was raised in a home where adoption was talked about often and celebrated.  
Fast forward to my adult life. My husband Jason and I were married in 2006. We always wanted children and our plan was to have a few biological children and then adopt in the future. Because I was adopted, it was always something we wanted to do. In 2009, we unexpectedly got pregnant. We weren't "trying" yet, but it was a happy surprise. Right away, we found cute ways to tell the future grandparents and started taking side pictures to document my future growing belly. Being a mom had been my lifelong dream and I was so excited it was finally happening. I couldn’t wait to outgrow my clothes and feel our baby move. 

Our excitement came to an end about 7 weeks into my pregnancy when I miscarried. This was the beginning of a very dark couple of years in my life -- I went through a deep depression. During this time, God placed very specific people in our lives to help us through, and between that, counseling that Jason and I were getting, and a class at our church called VP3, I was able to let go of my plan for my life and search for God’s plan. During this time, Jason and I very clearly heard God telling us it was time to start the adoption process. 
One of the things our adoption agency asked us is if we would be open to transracial adoption. Right away, we said yes. We knew that God was going to bring us our child and that is all we cared about. One of the classes we had to take from our agency was a transracial adoption class. In it, they showed us a video of grown kids who were different races and all adopted by white parents. They talked about how they all continually struggled with their identity, and in some cases, resented their parents. I left the class in tears. I didn't ever want our child to struggle with those issues or resent us. We prayed about our decision, and talked to our friends who are in a transracial family. After that, we knew God was leading the way and we felt total peace. So after a year of never-ending paperwork, interviews, and fundraisers, we were finally on the adoption list!
Our lives changed forever on July 26, 2012. I got a phone call from our adoption agency. Our case worker said that we had been chosen by a birth mother. She then asked if I was sitting down. That’s never usually a good question, but in our case it was. She told me that the baby was born yesterday -- an African American baby boy, and that the birth mom wanted to meet us that night before she signed the papers in the morning. Once I got all my ugly crying under control, we got in the car and drove to meet her that night. We hugged and cried and talked for a few hours. When we were getting ready to leave, we asked her what do you want us to know about raising an African American child, and she responded, "Take care of his hair and don't let his skin get ashy." 
Once we said our goodbyes, Jason and I drove home in total shock. We were going to go pick up our son in the morning and bring him home. Obviously, I didn't sleep at all that night. The next day we drove to the adoption agency and brought our son Luca home. I have never had a day in my life filled with so much love and rejoicing. Our house was constantly filled with friends and family providing us with all our baby needs, food, and even cleaning our house. They all shared in our joy because they too had been praying for this baby boy long before he was born.
Luca is now three and I am so grateful that I was chosen to be his mom. The past 3 years have been such a learning experience for me.  One of the hardest things for me to overcome was my own anxiety when people would stare at the store or ask me questions about Luca being mine. Most people mean well and are just curious. It took time for me to learn and understand that, and it’s important that we teach Luca to navigate those questions too. We want him to grow up to be a confident black man who loves the Lord - that is what we pray for.  
This story talks about my plan B, but the reality is that this was God’s plan A and we are so thankful that He is the one who brought our family together. We are in the process of trying to adopt again. This time, we have already had 2 failed adoptions and so it has been emotionally difficult, but we have faith and great peace that God is once again molding our family and will bring us together in His perfect timing. 

>>>   <<<

Perfect timing, indeed. Little Eva Noel was born Christmas Eve, 2015. They were notified that their profile had been selected and the birth mother would like to meet them. The first time they were supposed to meet, she canceled. They were trying not to get their hopes up Jan 3 as they made the 3 hour drive, unsure of what was to come. Twelve hours later, Eva came home.


Wake Up: A New Year's Resolution

I love “new,”  don’t you? The smell of a new car or fresh paint.  A new outfit.  A new gadget. New is fresh. Clean. Full of potential. Not outdated or damaged. Like a new year’s resolution, you try your best to keep it that way.  No feet on the carpet. No food in the car.  But after awhile, “new” fades. It wears off like a manicure. It wasn’t intentional; life just happens. And over time the daily wear and tear starts to show. The new car now smells like french fries. The paint has battle wounds full of war stories from kids, furniture, and pets. The gadget becomes outdated and soon you find yourself back to chasing “new” again. 

And, new can be scary. Especially scary when you are trying something new. Like being the chubby girl in the spin class. Or turning a hobby into a profession. Or making a better lifestyle choice that has a long history of failed attempts. Routine is predictable and predictable is safe and safe is easier and easier is comfortable. “Can’t fail if we don’t try,” we reason. And I don’t know about you, but I have a tendency to give up if I fail. That’s why I do better with allowing cheats versus perfection. I just have to make sure I don’t cheat more than I’m honest.

And for a few of us, “new” marks one step closer to a hard reality of what is to come. 

So when it came to New Year’s Day, I wanted to make changes. Lists of changes. Color coded on a spreadsheet, of course. Work out, eat better, be nicer, and the like. Good goals. And I am going to work on those, but something bigger kept rising to the surface. Because after all, new fades and it’s scary. Which is why I always end up in December with the worst version of myself, counting down the days to starting over, failing, and giving up.

Maybe this new year, “new” isn’t something I need to chase or be paralyzed by.  The definition of new is “something already existing but seen, experienced, or acquired recently or now for the first time.” You guys, something already existing but seen now for the first time! That’s it! All day I have been searching for a way to describe what I want for 2016 and that is exactly it. I want to see, experience and acquire things that already exist, like God, and the people around me, and existing talents to develop, and interests worth exploring. I want to become a professional noticer, a student of the stories in my every day that already contain beautiful discoveries I have overlooked or rushed by in year’s past.

I don’t want more, I want to wake up.  Wake up everyday grateful. Fully awake and present instead of busy and numb. Nothing stays new but change.

Be alert, be present. I’m about to do something brand-new.
    It’s bursting out! Don’t you see it?
There it is! I’m making a road through the desert,
    rivers in the badlands. 

Isaiah 43:19


Margin for what matters

In November, I resigned from my dream job at Immanuel Church as the Director of Environmental Design. My last day is Jan 3.  It was one of the hardest decisions I’ve ever had to make. I have worked at Immanuel since 2007 and I loved it. Like, loved it, loved it.  It made me feel smart and creative, important and part of something bigger than myself in a way laundry and dishes can’t.  My job titles and responsibilities changed almost as frequently as my living room decor, and that is what I loved almost as much as I love the staff.  The last few months have been especially rewarding, being a part of all the new and exciting things happening, making it extra hard to watch the ship sail without me. Immanuel family, thank you for trusting me for all these years. It has been an honor to serve God on staff for as long as I have. There are so MANY great things happening and on their way. The best, really is, yet to come.  To be clear, we are not leaving the church. You can't get rid of the Boyce crew that easy.

So back in October, I couldn’t understand why I felt it was time to go.  I was comfortable. Safe. Doing exactly what I wanted.  And comfortable and safe isn't usually what following Jesus looks like. I guess I got my answer. God always likes to invite, or shove, us into places we don’t really want to go, doesn’t He? I don't like that about Him.

Rewind to September; Jayden got a g-tube. It emotionally wrecked me. It was scheduled a week after our 5K, so bad or good, I had no time to think about what was happening to my guy until he was under general anesthesia. It wasn’t the IV pole in my dining room that bugged me. Or learning how to hydrate my son through a tube entering his stomach. It was the reminder that I am not in control. It was what the g-tube signifies to us Sanfilippo parents. The end is near.

I realized we are in the third quarter with Jayden and there is nothing we can do to slow it down or stop it from coming and that sucks. 

And then Waverly died. November 18, I found myself scrolling through my news feed. Sitting right below the Miller’s post about their beautiful baby boy entering the world, sat the post Waverly took her last breath. I wept. The house was deathly silent, except for my wails. It felt like my heart was on the giant drop. I couldn’t breathe, but wanted to puke. I was so sad. So desperately sad.  

The McNeil’s have been a family we have watched from a distance for the last six years. They have two children with Sanfilippo, Waverly and Oliver. Waverly turned 12 a few days before she passed. Oliver is 9. Shannon and Matt have been guides for us. They have graciously and humbly opened their journey to the world through their blog and we’ve had the honor of being students.  I can’t say I have always wanted to look. In many ways, it is like a crystal ball for us, and it's not always good to know the future.  

So when Wavey passed, I grieved in a way I never had before. Kelly and I even went out to DC for the funeral and held hands the entire time like only two mom’s who share the same crystal ball, can. I still, am heavy hearted for Matt and Shannon. I have no idea what they are feeling. I don't understand. Shannon wrote, "anticipating grief doesn’t even compare to actual grief."  Wow.  

So it hurts even more than it does right now? It makes my pain and anticipating seem so small.

There’s no way around it. As I cried and wailed for the McNeils loss, I wept for our pending losses. I am so scared and it is coming so fast. Waverly was 12 years old. Jayden is 9.5. That would give us 2.5 years left with him. 

And that is the exact reason I resigned. 


I want to give the best of me to my people. I want to have no regrets. Church environments matter, but not more than my family.  I need to give my children my best, not my leftovers. I don’t want to be too tired to tuck them in. Too busy to love well.

I am choosing to do less to be more. And being type A and a work-aholic, I have to do this daily.

I want to be obedient to where God wants me and I sense He wants me fully engaged. Awake to all the pain and blessings ahead.  And part of being engaged for me is writing it down. Processing through everything I am noticing and learning.  I am saying no to good things, great things, to chase what I feel is best for me, right now.  I am creating margin to write each morning and slow down.

Bob Goff says, "He used to be afraid of failing at something that mattered to him, but now he's afraid at being successful at things that don’t matter." I am too, Bob. 

Justin built me an office in the basement, out of pallets, of course. I have a little desk with index cards of thoughts hanging on the walls. I have pictures of my people and quotes that tell me I can do hard things. And you guys, I am scared.  But, I jumped anyway.

I was talking with my mother-in-law about how difficult it was to let go of my job and she matter of factly said, “it isn’t hard to leave something you love for something you love more.” 

And you know what?
She’s right.


perms and pink socks

When I was growing up I wanted to be Cindi Lauper. I loved her music, but even more, her style. She was so unique, with her vintage, punk-rock outfits, and ever changing hair colors. I tried dressing like her every chance I got and would go around the house dancing and singing all her songs. I loved “time after time," “girls just wanna have fun,” and especially "true colors.”

Do you remember perms? If I try hard enough, I can still smell perm solution just thinking about them. Usually the stylist uses long cylinder shaped rods and wrap the hair around them and they make your hair curly for months. Well back in the 80’s they came out with triangle ones that were supposed to permanently make your hair crimped, or zigzagged. So on my 8th birthday, I begged my mom to let me get my beautiful, blonde, straight hair crimped so I could have cool hair like Cindi.

Now you have to understand my mom. Most days, she looks like she stepped right off the country club golf course. She has a pressed white blouse, collar popped, with a Ralph Lauren sweater tied around her shoulders. She liked the music of the 80’s, but definitely leans more toward the classic than the trendy. I love that about her. She’s always so put together. So me wanting to ditch my polo dresses and rat my hair had to be difficult. Maybe she had a different idea of who I should be.

Back to those awesome perms. 

Wouldn't you know, my mom actually said yes! I could get the crimpy one!  

That next morning was picture day. I was proud as punch getting ready for my big debut in front of the camera. I imagined paparazzi lining the halls as I made my way to the gym and all the cool kids telling me how awesome I looked, maybe even mistaking me for Cindi herself. 

The gym was dark and I remember watching other kids sitting on the stool in front of the splatter paint backdrop. It was almost my turn when the lady gave me an interesting look. "She thinks I look awesome," I thought. 


Actually, in the best way she could, she tried to tell me my hair was a hot mess. She pointed to the black toothed combs floating in a cylinder of blue liquid and encouraged me to use one. My heart sank a bit. It wasn't what I was first sting of rejection. But I channeled my inner Cindi and told her I loved my hair just the way it was. In that moment, I imagined Cindi for the back of the dark gym, raising her fist, proud of me. The lady must have thought I was nuts but took my picture, anyway. 

Fast forward to this morning. I was getting Ellie dressed for preschool and grabbed some hand-me-downs from the box. Pink sparkly high tops and a pair of bootcut jeans. She’s outgrown the 3t stuff but the 4t stuff is still a bit big, so the jeans were a bit baggy. I put on tall pink socks thinking it would keep the high tops from rubbing and no one would see how silly it looked because the jeans would go right over it. I think she watches me roll up my boyfriend jeans and wear them with ankle boots, so I shouldn't have been surprised when she asked to roll her jeans, putting her bright pink socks and bright pink shoes on full display.

And I imagine I had the same reaction that my mother had after that crazy perm. On the one hand, terrified that she would be made fun of at school, but on the other hand, so proud of her for making a statement of who she wanted to be. So I complied and rolled up her jeans. She smiled. I took her picture. I told her that she looked beautiful and I was so proud of her.

She had a bigger skip to school that day, and as her mom, I raised my fist, and my inner Cindi Lauper smiled.

“But I see your true colors 
Shining through
I see your true colors
And that's why I love you
So don't be afraid 
to let them show 
Your true colors
True colors are beautiful
Like a rainbow”


Catching the worm: the new early morning routine

I'm not sure how long it will last.

But getting up around 5AM every morning has been a welcome change. Yes, this is me, Stefanie typing, a known night owl talking. I couldn't rise before 7:20AM a few weeks ago. So believe it or not, I wake up more refreshed than my previous 11PM-7AM routine. 

Now I rise, get my coffee, and quietly tip toe to the porch not to wake my house full of light sleepers.  I find my spot under a blanket and sit on the bed, sipping my coffee. 

Surveying my surroundings, I see the sun breaking through the trees. I hear the wind dancing through the leaves, and smell the morning breeze coming through the windows as it gently brushes my skin. 

I don't even notice the mess on the porch, the out of place chairs, or glass tea cup on the drum kit.  Ok, maybe I do but I don't get up to fix it.

Sometimes I grab a book or Bible and start reading, other times I write. But it's in the stillness, the calm before the storm, I feel peace. Any minute, I will hear doors. The pitter patter of feet. The coffee machine with fire up again, cartoons will resume, and the business of the day begins. 


But until then, I sit. Slowly welcoming the day. Inviting God to become present in my mind.

Getting up early is part of my realignment plan.  I used to think that if God wanted me do something, He would make it easy.  You know, yoke easy, burden light? And once you take the leap, there are blessings, but it doesn't mean it was, or got, easy.   Every morning I argue with my snooze button.  When I win, I get blessed with all the beautiful things I experience waking up early.  But it's still hard to get up. Every. Morning.

>>>>    <<<<

I saw an article on fb about the pitfalls of waking up and checking your phone. Do you do that? I used to roll over, open my eyes and swipe right. I didn't even lift my head before I was connected. Weather. Calendar. Instagram. Facebook. email. Increasing and obsessively entering the world and all its fallen mess like a head on collision. At times, getting up frustrated, disappointed, hurt, or jealous. 

Friends, that is no way to wake up. No need to put those garbage thought in our minds first thing in the morning. "Take every thought captive," I think someone once said. Maybe that exercise is best started in the morning by being with Jesus instead of Twitter. 

This new rhythm is the stretching part before a race. 

This new rhythm prevents injuries to my soul. 
This new rhythm paces me for the long race.

Some mornings I run after I write. And by 8AM I feel accomplished. Proud. My mind in a catchers pose instead of up to bat, swinging. It feels good when you do what you feel like you should, right?

I highly recommend 5AM wake up calls. And be easy on yourself if you don't quite hit 5AM everyday. From one night owl, type A to another, make it 5ish


Sometimes, we just need our mom.

Jayden barfed yesterday.

Actually, from both ends. When I went in to wake him up for  school he was sleeping in it. Poor guy. Justin picked him up and I aired out his room while he continued to sleep on the bathroom floor. 

Justin gave him a bath. 
I stripped the bed. 

It's always hard having a sick child, especially a sick, non-verbal child. It's like having a baby in so many ways. They can't tell you exactly what's wrong so they cry. And then as parents, we try to unlock the mystery.

"Do you think it's something he ate/drank?"
"Brooklyn was also sick for a few days, bet it's the same bug", we reason. 

After his bath, we moved him to the couch and he easily fell back asleep.

His body so fragile.

I sat and watched the rise and fall of his breath.  He held each breath a second, then his chest sunk into the couch. 

I held his soft, curled hand.  I brushed off the thought of another time I will maybe do this, for the last time, and thanked God for each breath. 


He dry heaves. I grab the barf bowl. Isn't it funny how we have "barf" rituals? When I was young, I puked in a bowl or toilet, ate crackers and drank ginger ale.  I know a woman who swore that Pepsi cures everything.

The bus comes for B.
Grandma comes to sit with J.
I drive Ellie to VBS. 

When I got home, he had just thrown up and #3ed in his pants. And, as Ama went to get the diaper stuff, he fell back asleep.  

The day in day out caregiving routine isn't my stongsuit, but I love taking care of my babies when they're sick or in the hospital.  I'm not sure why. I hate seeing them sick, so I guess when they are doing fine, I assume anyone can change a diaper. But when they're sick, they need their mom.  Sometimes, we just need our mom.

Like it was orchestrated by God himself, he opened his sleepy eyes and smiled right at me. You guys, it was the most heavenly smile. Not a smile of a sick child. And it lingered. It was like he was saying, 
"there you are, mom. My. Mom." 

I made him a bed, changed the #3, and turned on some Handy Manny.  And then he said it again. Those eyes. That crooked smile. It's these secret I love you's we share that make me feel like I saw God himself shining through my sweet boy. 

Holy exchanges.

I am so proud to be his mom. He is such a gift. He teaches me so much about the character and personhood of Jesus without ever using a word.   

Want to read "Back In the Saddle"? 
click here!


Back in the Saddle

4 weeks ago.

My last post was 4 weeks ago.  And, it wasn't even my post. It was my dear friend Michelle's guest post. I am guessing it was the busyness of the school year ending, writers block, laziness, or a bit of everything combined, but I need to get back on the saddle. 

Here's the skinny on the last 4 weeks:

Ellie turned 3. She is such a bright light of life in our home. Such a personality and joy to be around. She got a day of pampering: hair cut, starbucks, mani and pedi, and build-a-bear.  [She got rid of all her pacifiers in the stomach of "binka" bear.] We had a small "yellow minnie" family party for her to celebrate. 

I handmade 26 teacher gifts. It takes a village, folks. I don't know if succulents were a good gift, in retrospect. Most teachers looked scared at the idea of taking care of a plant, but at least they turned out cute. (the heart on the back is Jayden's thumb print on the left and Brooklyn's on the right)

Jayden had a swallow study done at Lurie Children's. Results? We have to start thickening his liquids to a nectar/smoothie consistency and it looks like we will be doing a g-tube (feeding tube) sometime in 2015. Not the best news. But we would rather be proactive and get it done when it is safe. And, we saw sweet Livia there as well!

Justin took over OASIS, our special needs ministry at our church, so we have been busy doing training, intakes and schedules.  

School ended last week and our wonderful friends at The Sanctuary run an overnight camp for children with special needs in Ingleside this week so Jayden and Brooklyn are making memories there.  Ellie is in Rockford and I have a glorious day alone!

Oh yeah, and I am in a new, fun once-a-month group for moms of children with special needs and love Jesus. We are reading through a great book, Holding Onto Hope

Not to mention therapies, graduation parties, work, and case management!


Well, I guess that is why it's been 4 weeks since I have paused. 

Such is life, right?

When I fall off the saddle, I color code.  It's the dreaded Type A in me. A few days ago, I decided to start fresh and start a new schedule.  I came to the realization that the important things were absent from my priority list.  I was spending way more time than I'd like to admit watching late night TV cause I was just spent from the day and wanted to unplug.  Which then makes me sleep in, missing the morning routine, making me play catch up all day, rushed and late, only to be exhausted on the couch watching tv.  

Can you relate? 

So I decided to break the cycle. A day that could be filled with things I would be proud of, things I was made to do, and people I needed to make a priority.  I marked out each hour of the day down the left of my numbers sheet (excel for you microsoft folk) and wrote the days at the top.  

First thing on the schedule? Sleep. Because I need 8 hours and want to wake up before noon the next day, I reserved 9PM-5AM for sleep. The goal is to wake up and write from 5-6AM Sunday through Thursday and run 6-7AM Sunday, Tuesday, and Thursday before work.  The other days, I plan on taking the kids so Justin can run.  

I also added time on the schedule for bedtime. Free time for us usually happens after the kids go to bed,  but now that I will be going to bed at the same time as the kids, Jut and I are going to try to rotate who does bedtimes so Jut can watch his animal shows and I can watch a program here or there.

And after a week, I haven't hit the target perfectly yet. And, I am giving myself enough grace to be a work in progress. 

The first morning was glorious, but it was more like 5:30AM. The birds were chirping and the sun was out.  The second morning I ran, but came back limping.

Sometimes we just get off track. Not bad. Not good. Just off. And lately I have felt the invitation to realign my life to match my priorities.  I am learning as I get older, it is less about not doing bad things and do good, and more about which good things do I want to give my time.  And, I am discovering, it is a lot harder to say no to good things.  For me, freedom has come from building in margin to be present and engaged. Not rushed ALL the time, letting my body and mind rest.  Not mind-numbing rest (although I like that too) but intentional, slowing, breathing rest. 

Where do you need to build your margin?

Do you find your schedule matches your priorities?
leave a comment below and 
let me know how it's going for you!

Before you go, just wanted to mention our 5K is scheduled! September 12, 2015 
at Illinois Beach State Park 
to raise money for gene therapy at Nationwide Hospital.  Learn more and sign up today!