Get on the Field

Do you ever feel like you’re on the sidelines of life, watching everyone else have all the fun? You’re the chipper cheerleader or the rude dad barking at the ref from the bleachers, but you’re not playing the game.

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At the risk of sounding ultra-spiritual, I believe one way Satan makes us ineffective as believers is to get us to “sit the bench” and watch our lives pass us by. There is no era more prone to this than ours of social media.

We scroll feeds. We watch YouTube videos for humor. We follow transformations on Instagram instead of journeying through our own. We binge watch (isn’t that even the grossest terminology?!) TV shows. We Netflix on Fridays. We are taking life sitting down, becoming fat and lazy–if not in our bodies, in our minds. I am guilty of this too, friends. Often I have to remind myself, “Ashley, put down your phone. The people you love are right in front of you. Be present.”

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GET ON THE FIELD OF YOUR OWN LIFE.

There is no place I get a swifter kick-in-the-pants of perspective more than the Endeavor Games.

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This is an adaptive sports event–a pre-qualifier for the Paralympics–for people of various physical disabilities. That word, disability, is laughable here. These athletes are ABLE. They are blind but fast. They have one limb–ONE LIMB–and swim 800m. They use wheelchairs to race and play basketball. They run on blades. They are real-life superheroes in my book.

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These individuals have every right to sit on the sidelines of their lives, watching us able-bodied people have all the fun. Oh, but no. Excuses dishonor them. They’ve decided (or someone in their lives has decided for them, perhaps) that life is a GIFT. It is meant to be lived…messily, frustratingly, joyfully and victoriously.

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Finn has “competed” in the Endeavor Games at UCO for the past three years. This year our goal was to not get disqualified by crossing over the lines. Success!

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He took home three gold medals for the 20, 60, and 100m dash! This was the first year he was actually crossing the finish line first and he kept looking back over his shoulder to find his buddies.

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This child continues to amaze me with his joyful spirit. It truly humbles me that God chose me to be his mom.

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Paisley was SO ANGRY that we didn’t clean off Finn’s old wheelchair in the garage and let her compete. 🙂

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She’s not a side-liner by nature, and I love this about her.

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Stop watching others live. Stop giving your very best for another person or corporation’s advancement.  Start living your life. Use your gifts, given specifically to you by God. I need your friendship, your talents, your wisdom, your drive, your love to become the best version of me.

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Sweet friends, The Whites, came to cheer Finn on!

We need you to get in the game of your own life. Your children, your marriage, your career, your friends, the Kingdom depends on it.

“Life is either a great adventure, or nothing.” Helen Keller

How to Treat Kids Who Are Different: Part II

I know it can be awkward when your child asks an innocent, valid question about someone who may look or act differently. We don’t want to say the wrong thing so sometimes we avoid the situation/conversation altogether. I’ve been there.

I think before we can teach our kids anything about how to treat people, we first have to examine how we treat people. If we don’t spend time with people who look, move, live, worship, vote, or speak differently than us, why would our children want to?

First, let’s talk about verbiage.

  1. PLEASE remove the “r” word from your vocabulary. You know, that word you’ve used when you feel silly or stupid. The word that means “late or slow.” This word, to a special needs family, is the equivalent of the “n” word to an African American family. It is degrading and ugly.
  2. When you’re talking to your child about someone who may be different, try not to use the word, “wrong.” This implies they are broken, not right…less than. Wouldn’t it feel awful if a blonde child asked your brunette child, “What’s wrong with your hair?” For example, instead of asking, “What’s wrong with you/him/her/them?,” ask, “Why are you in a wheelchair?” “Why do you only have one leg?” “Why do you use that device?” “What’s your name?” “What’s your story?” I like that one the best.
  3. Speak in positives, not negatives. We say Finn “uses a wheelchair to get around” instead of “he can’t walk.” Say what they CAN do, not what they can’t. img_6605
  4. Remind children that we’re all different in some ways, and give specific examples of people they know. I wear glasses because my eyes don’t work quite right all the time. He has lighter skin and not a lot of hair. Her dark skin is beautiful, isn’t it? You have freckles, but I don’t. He has more energy and excitement than you. She likes to be quiet.
  5. Most importantly, tell children that although someone may be different, we all have similarities. Finn loves Paw Patrol, do you? He doesn’t run, but he can race you in his wheelchair! She has red hair like you! He’s the oldest too. You guys both have the same color eyes…

To provide well-rounded insight, I asked six brave moms of uniquely different children how they want their kiddos to be treated. Here’s what they said:

Brenda:

Sometimes the moms apologize for questions their children ask. And sometimes they join in explaining. I don’t think an apology is needed. Kids notice the difference but I also think they are better at adapting. They see beyond the wheelchair and see the kid (at least in most instances). They have an innocence…

Basically, I encourage the questions even if it’s awkward. It’s a learning moment for all! I never realized how “not” disability friendly our world is. The more we talk, explain, and educate the better the opportunities for change.

I’ve been so surprised by how many people are willing to think outside the box and help include my son. They just don’t know how to sometimes.

Last, thought…. I don’t want anyone to feel sorry for my kid. Yes, he struggles with things and has been through so much throughout his short life, but I don’t want that to influence how you treat him. The more normalcy in the chaos helps him to develop and grow like his peers. It builds his esteem and character. I put him in time out just like others his age.”

No apology necessary. Ask questions and push through the awkwardness…your kid (and you) will learn a lot and you’ll make our child feel valued. Include us in creative ways! Don’t feel sorry for us.

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Christi:

When kids ask “What’s wrong with him?” my response is, “Nothing. He was born where his legs don’t work like yours or mine, so he gets to ride around in this cool wheelchair.” Most of the time this is a satisfying answer and they move on.

My mom told me one time of a book she read, and in that book it said that everyone has their own disability. If you think about it there is something off/different about each of us. Someone who wears glasses obviously has poor eyesight, and that’s their disability. And not all are visible.

We just have to talk, educate and make it normal to not be normal. I tell Ryder all the time that it’s better to be different, because no one else is exactly like him and that is his power. “

We are all disabled in some way, right? Some of us came from crappy homes. Some of us aren’t very good in social situations. Some of us are too loud or too quiet. Some of us struggle with addiction. Some of us struggle in our minds. Some of us feel mastered by food. Finn’s disability (and others like him) is just more visible. He can’t hide it. I think this actually makes him MORE FREE to be himself.

I love how Christi tells Ryder his “ab-normalcy” is his “power.” Our differences can be like our super-powers! I cry like a baby in every super-hero movie because the story is the same: they are born a little different, pushed to the fringes of society, and then rise above it all for the greater good. Mighty Finn.

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Stephanie:

“I love it when parents and kids ask questions. I love to tell people about Caleb and about Down syndrome.

Caleb and Tyler (siblings) are quite a pair. Sometimes Tyler is a bit too much of a “mother hen”. Most often, though, he is Caleb’s biggest cheerleader, helper and friend. I love watching them together, and I think they are both better people because they have each other.”

Keep asking questions! Don’t “shush” your children. Approach us. Value us.

I’ll never forget this little boy in a doctor’s office when we first moved to Tulsa. We were in the waiting room and my stomach dropped when a 7-ish year old boy approached Finn. He looked Finn in the eyes and asked, “Do you want to play with me on the slide?” Then he looked at me and said, “I can help him get up.”

I watched through my own tears as this little boy lifted Finn up the steps onto the next platform to go down the slide and then cheered him on at the bottom. Changed my life.

WHO ARE YOUR PARENTS, CHILD?! I WANT TO KISS THEM ON THE MOUTH! (He was with his grandma and I gave her the highest praise for her mature, kind little grandson.)

Raylea:

Your friend’s intentional parenting is what is sticking with me today. As my kids have aged, it has been increasingly hard to keep them involved with peers who don’t have disabilities….

In the last year, we have been involved in Special Olympics, and I have found some spectacular ‘typical peers’ there! There are High School kids who volunteer to play sports with my kids…they want to be there. Several of them have a sibling with special needs, but they are there to help whether or not their sibling is. Parents should encourage their kids to participate in a peer program like this.

I wish that all parents would be intentional with their kids. Evaluate whether their schedule is adding lasting value to their life? Do they have time to help a neighbor or a friend in need? Do they have time to participate in activities that are inclusive of those who are different? …

I want them to be given the opportunity to succeed at age appropriate skills, but I feel like they are losing the ability to engage in age appropriate skills because everyone else is ‘too busy’ trying to achieve some unrealistic goal.

I do enjoy when kids are naturally curious about Micah. I don’t discourage questions. I like to answer them. The most common question is, “What happened to his leg?” when they see his AFO or his wrist splint. He will respond now, “Nothing happened, it just helps me walk better, or use my arm better.” And then they head off to discuss Star Wars or Captain America. Cool.

People need to know some of the ways he is different so they can understand him. He wouldn’t ever want someone to think he was being unfriendly because he didn’t wave back when they wave to him. He simply didn’t see them!

A doctor once referred to Micah’s weaker side as his “BAD SIDE” and that chapped me. I would encourage people to avoid using negative terms when referring to our kids in any way.

I want to ask my kids how they want to be treated…that may be Part III. 😉

Be intentional in your parenting. Help your kids invest more in people than sports or activities. This will help them become adjusted adults.
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Ask questions–there it is again! Avoid negative words. Try to understand.
Brooke:

“Just treat Cash the same as you’d treat any other friend. He can do the same things other kids do, especially when he is encouraged and cheered for. (But isn’t that what we all want?)  If we were all the same the world would be a super boring place!

…Honestly it would thrill me to death if they took the time to research and maybe attend a local event that benefits people with Down syndrome.


I would want parents to tell their kids to be kind to ALL people. Just because someone is different than you are doesn’t mean they are weird or bad or scary. They want friends just like the rest of us. We are more alike than different.
We are more alike than different. Take time to research and understand your friends who are different.
Encourage your kids to get to know other kids who are different. Attending a Buddy Walk or Special Olympics or Endeavor Games adaptive sports event is a great start. At these events, you will feel like the different one…and that’s not so bad.
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Jordan:
“Ask.  Please ask.  Don’t scold your kids for asking.  I love the chance to de-mystify braces or a zip zac or the scar on Poppy’s back that most kids think is a “belly button on her back.” I’ve been the mom completely anxious around a kiddo with special needs, just cringing and praying that my kid wouldn’t be the one to say something insensitive.

…I love the opportunity to get to normalize something for a young, formative mind.  I love to watch it not matter to them as much as I thought it would.  Like when I said to the little girl asking why Poppy had a belly button on her back: “That’s actually a scar because she had a surgery when she was really, really small.”  “Oh, I like her ponytail too.”  Very un-scary.  

I also love to let Poppy hear us talk about her proudly and confidently.
Please ask.
We get a lot of “oh, what happened to her?” or “oh, what’s wrong with her”.  While USUALLY these don’t upset me, the kindest and most inviting way I’ve ever heard a stranger ask about Poppy was “Would you share with me about why she wears those braces?”  I loved it.
Be mindful of the setting.  I’ve had people yell questions at me across a crowded public space.  I recognize this as someone who was probably really passionate about identifying a commonality, but it was embarrassing and made me feel like I should protect Poppy.
Invite and include.   We’ll decide if it’s something that we can’t do (ie.  A gymnastics party or a party at a Bounce house).  Most special needs parents and kiddos are pretty good at figuring out how to adapt, so we’ll either figure out a way to make it work.  Don’t assume that being asked might be too painful.  Being uninvited is usually more painful. 
Again, let your kids ask. Who cares if you’re feeling awkward, but be prepared with a response. Invite us! Include us! We all want to be invited even if we can’t make it, right?!
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THANK YOU, moms, for your input. You and your husbands are saints in my book. I know well the difficulty of cathing and lifting and worrying and struggling to put on jeans and pre-op and post-op and being left out and IEPS and ER waiting rooms. God is with us.
THANK YOU to those of you who have responded so well to these posts, wanting to learn and teach your kiddos. Jesus smiles when we love (all) people well. The fact that you’re reading this makes me feel you value Finn, and if you value Finn, you value me.
Please add to this conversation if you have any input or questions! I know there are many other friends of mine who have great wisdom here.
There are also many differences unmentioned in this post…racial, religious, behavioral, terminal disease, etc. I want to know your heart.

Pre-K

We sent him off to his teacher’s bench early Tuesday morning. It was his first full day of Pre-K, the first of many days of public school.

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This day was one I feared since the NICU, watching Finn’s tiny pink lips breathe in and out, closed around his feeding tube.

Sure, he’s been in daycare since infancy, but this was different somehow. I was sending my heart off between two wheels, trusting the world to treat him fairly, give him a chance, open doors, be kind.

He popped a wheelie, yelled, “Wahoo!” when he saw cute little Mrs. Brown, and zoomed off.

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I turned around, my eyes stinging with tears. Then Paisley almost ran off the curb into a line of cars and I forgot to cry. A busy day at work kept my mind distracted.

He won’t really tell us anything about his days…nothing true, anyway. He said he played in the dirt all day and that his new friend’s name was Booty. 😉 Mrs. Brown tells me he always asks when nap time is and even fell asleep sitting upright in his chair.

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Thank you, Jesus, for Mrs. Brown.

He’s adjusting well and is excited to go to school each morning, a blessing for sure.

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When asked by kids in his class why he’s in a wheelchair and “what’s wrong with him,” Mrs. Brown says he responds that “his legs aren’t very strong and he uses his wheelchair to move.” I’ve never heard him respond to anyone about his disability before; probably because we answer for him. This is pretty close to what we’d say, except I don’t want him to believe he isn’t strong…just stronger in some ways than others.

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I’m so proud of you, Finn. You are teaching us all that it’s okay to be different. And what’s more, that it’s okay to LIKE being different! Your joy humbles me. You don’t make excuses for the things you “can’t do;” you simply find a way. I am so grateful for the confidence God gives you.

Here’s to 14 years of childhood education–Whew, that sounds daunting!–a rich education mentally, physically, socially and spiritually.

Will you pray with us for one or two really good, loyal friends for Finn? Friends that would see his differences as a blessing, not a burden. We all need a couple friends like that, don’t we?

 

A Conversation At Lowe’s

We are insane and have begun the arduous process of painting our kitchen cabinets white. My MIL and I did it before in our Norman home. 3 coats of Behr Pillar White. Now we have twice as many cabinets with beautiful crown molding trim, less time and two kids. “It’s gonna be awesome,” we keep telling ourselves.

Top cabinets off; sanded and ready for primer...

Top cabinets off; sanded and ready for primer…

Any trip to the store these days begins with negotiations between Finn and I. He wants to use his wheelchair; I would rather him be contained in the cart. We both want control. So we agreed, per usual, that he could use his wheelchair if he stayed close and obeyed “quickly and happily.”

While we waited for two gallons of Valspar Dove White, a kind older couple noticed Finn. They asked if he could walk. (“Yes, he can. We just play ‘wheelchair’ sometimes for fun.” –sarcastic inner monologue.) “No, he was born with Spina Bifida and is paralyzed from the waist down, so he uses a wheelchair to get around.” They told me about some family member they have who also has a disability and then reassured me that with technology these days, surely he’ll be walking soon. I smiled and mumbled something awkward like, “Yep, we’ve sure come a long way. Alright kids, let’s keep shopping.”

So we went outside to get mulch. As I was heaving a couple bags into the cart, I heard Finn say, “spine bifda…” He repeated it, trying the words out on his tongue. He’s heard us say, “Spina Bifida,” hundreds of times, but this was the first time I’ve heard him say it. I asked him if he knew what that was. “No.” I told him he was born with it and that’s the reason he has trouble walking and why he’s in a wheelchair and why we do physical therapy with Miss Brittany and…blah blah blah.

This was a conversation I’d played out dozens of times in my head, wide awake some nights worrying about how he’d respond. I was just about to tell him about how special he was and that God spent extra time creating him even though he’s different in some ways…

But he asked for another animal cracker and spun around in his chair.

I know he heard me; he’s super smart. But my rant didn’t really interest him. I laughed and took this picture.

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Not the reaction I was expecting.

Finn has been surprising us since I was 6 weeks pregnant with him: bleeding profusely on a family vacation; the ER doctor told me I was having a miscarriage. Nope; the ultrasound showed a strong blinking light (Finn’s heartbeat), as if he was in there saying, “I’m still here mom and dad! I’m fighting! Don’t give up on me!”

Through Finn God has taught me to expect the unexpected.(Good and bad.)

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“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to Him be glory…” Ephesians 3:20, 21

Wheelchair Love

Sometimes I forget that Finn is different. He does everything three year olds do. Just most of those things he does sitting between two wheels.

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Every now and then I’m surprised when others react to him.

Like last week I came to pick Finn up from school and four tiny girls crowded he and I at the door. They asked a million innocent questions, from “Why is he in that wheelchair?” to “How does he sit in the car?” to “Why does he still wear diapers?” Kennedy even told me that she used to have a pink wheelchair when she was a baby. I think she was confused. 🙂

After I had fielded the questions as best as I could and we were trying to squeeze through the door, Finn asked if he could give one little girl a hug. She was standing in front of him staring. She said, “No, he can’t give hugs. He’s in a wheelchair.” My stomach dropped and so did Finn’s countenance. “He’s great at giving hugs,” I said.  “Watch!” We hugged and I pulled her in too. Finn zoomed away unfazed, but I was reminded that three year olds don’t typically roll. He’s different.

Our LifeKids volunteers at church are incredible. Saints. One woman in particular told us a story about Finn from Family Reunion.

Our pastors told this story from stage this weekend.

Our pastors told this story from stage this weekend.

She wasn’t too thrilled to be serving that day, if she was being honest. She reluctantly entered the three year old classroom where she thought she’d simply keep the peace and wipe snotty noses. I’m sure she did plenty of that, but she was also blessed by the attitude of our little man. She said he was joyful, interactive with the other kids, and at one point he made her day:

“Can I tell you a secret?” Finn whispered in her ear, “Jesus loves me…and my wheelchair.”

I love this because Finn recognizes–better than I do–that God loves the things that make us different. No, I do not believe God delights in the fact that Finn is disabled. But I believe God delights in Finn despite his disability. And maybe even more so because of it. He wheels through crowds like he owns the place, unaware of (or indifferent toward) the staring and pointing that is so natural.

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I know a day will come when Finn’s confidence will be shaken, but I’ll revel in his courage and self-assuredness until then.

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Do you love the things about you that make you different?

Endeavor Games 2015

This weekend Finn competed in his first ever Endeavor Games. We weren’t quite sure how he’d enjoy it, so we didn’t really invite anyone to attend. It’s a qualifying event for the 2016 Paralympics, so people take it very seriously–there’s a starting gun and sanctioned rules and everything.

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We thought Finn might even hear the gun, have a meltdown and wheel off the track; but he surprised us and had a lot of fun.

He came in dead last in the 20m dash…it was so cute.

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He heard the pop, wheeled a little, stopped to look around, wheeled a little faster once he saw Paisley and I at the end of the track, then stopped about 2 feet from the finish line to take it all in. Keep going, buddy!

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I'm a track star...no big deal. ;)

I’m a track star…no big deal. 😉

He also enjoyed reconnecting with Ryder, our buddy from OKC.

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Helmet bump

Helmet bump

These athletes are unreal. Many were in wheelchairs and others of them had limb differences; a few were even double or triple amputees.

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I had to turn and face the other direction several times to hide my tears as I watched these people defy all odds, pushing their bodies beyond their God-given potential. Goosebumps everywhere.

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What excuse do you and I have not to move?

Finn was more comfortable in the 60m dash and he didn’t even finish last!

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I’m pretty certain he was technically disqualified because he went from the farthest lane to the nearest lane, diagonally across the track. It’s hard for a 3 year old to stay in the lines!

He won two medals anyway. 🙂

Ugh. He's the cutest.

Ugh. He’s the cutest.

We also had our annual roommate reunion this weekend, so Jane and the Whites came to cheer Finn on.

Missing our Al at dinner!

Missing our Al at dinner!

He was so happy to see them all at the finish line. “You came to visit me?!” he beamed.

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Finn loves Navy.

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Later in the day, Finn attempted the shot put. He didn’t like how they strapped down his wheelchair. It also didn’t help that there were 20 volunteers standing around watching him. The official was an older, shall I say, gruff woman.

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She was a stickler for the rules and would yell “Foul!” when Finn didn’t throw the ball the right way. He cried and asked if he could race instead. Obviously he wasn’t having fun anymore, so we decided to skip the javelin and discus and drove home to Tulsa early. Maybe we’ll try the sitting implements again next year.

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Paisley loved clapping for big brother!

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It was a blessing to see Finn so proud of himself, and it was good for Joey and I to be reminded we are not alone in the world of disabilities. There are many other families out there like us, and many other angels like Finn.

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A Ramp for Finn

Five of my favorite men + 2 pots of strong coffee + 3 loads of lumber + the inspiration of one little boy = a beautiful deck and ramp finished in less than 6 hours!

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We couldn’t have done this without our families. I love having them near. It’s the best part of living in Tulsa. Everyone is just a few hours drive (or less) away.

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The Cousins! (Minus Tucker)

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“Uncle Chad is my best friend.”

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The boys collaborated on a DIY project that will make our home more accessible for Finn. He watched the big boys build from inside, asking, “They are making that for me? So I can wheel?” Yes, love.

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The forecast of course promised rain, but God literally held it off until the minute we stood back and admired the finished product. I envisioned Him holding a yellow polka-dotted cosmic umbrella over our home for Finn. All for Finn.

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He is one deeply loved and richly blessed little boy. Sure, he’s as naughty as any 3 year old, but there’s just something special about him. I like to think God gave him an extra dose of sugar, perceptiveness, and confidence.

Thank you, Terry, Dad, Chad, Tyler and Joey! We are grateful.