Sunshine Soldier

“Trauma is an emotional response to a terrible event. Immediately after the event, shock and denial are typical. Longer term reactions include unpredictable emotions, flashbacks, strained relationships and even physical symptoms like headaches or nausea.”— American Psychological Association.

According to a recent study, about half of people will experience some form of trauma in their life. Huh. Interesting. In our house, more than half of our people have experienced some form of trauma.

Freedom. I speak with a lot of freedom about our sweet Caleb. About what we have learned through him and alongside him. Because he doesn’t mind. It doesn’t cause him any shame or embarassment. In fact, my sharing really just helps him. It helps others understand him better and come alongside him too. With all the compasssion.

Trauma is real. It impacts so many. It is never welcome, but sometimes, there it is. And the waves go on and on. They never really disappear completely. Hopefully, they get smaller and smaller and further and further apart.

Father’s Day 2021. Ok, so can I just say that Ryan is an amazing father. He takes such good care of all of us and loves us so big. He puts himself last. Again and again. He will do absolutely anything for our family. So, we wanted to make his day special. The obvious choice. Wasabi (the restaurant). He just loves the whole experience. And the white sauce. Seriously, bring him all the white sauce.

The Atkinson 7 met my parents there after church to celebrate Ryan and my sweet dad. All was well until we were at the hostess stand. Then it began. Panic. Complete and total panic. Caleb. His face was beet red. He began crying. Softly at first then louder and louder. All of us were scanning the room trying to figure out what he was so afraid of. He was just looking around, wild-eyed. We had to get to our table quickly.

I thought maybe it was all the commotion. If we could just get him settled. We put him in the seat farthest from the aisle. His siblings were hugging him and saying all the things to calm him. I got down on my knees so we were eye to eye, “Caleb. You are being silly. There is nothing to be afraid of. This is for Dad and Papa and we want it to be special. You must calm down.” I said the words calmly but firmly. That should do the trick.

Nope. He opened his mouth wide and screamed at the top of his lungs. Ok. Time to go.

Any of you that know Caleb, know that he is a joy-bringer. He wants to be happy. So what was this all about? A trigger. Something or someone in that place was a trigger that took him right back to a trauma. His mind was no longer present with us. His mind was with the trauma.

In 2012, Caleb had bilateral foot reconstruction at Vanderbilt. It needed to happen but I was a basketcase. We always knew he would need this surgery but it was not supposed to happen until he was at least a teenager. But he was only 6. A baby. My baby. I was only given 10 days notice that it was happening. I couldn’t process it. I had panic attacks for the first time in my life. It was more than my mind and heart could handle. I had to hand the burden over to the Lord. It was far too heavy for me.

The morning of the surgery we met with Dr. Lovejoy. Our major concern was pain management for Caleb. He said not to worry. His pain would be managed. If we needed him we were to call him. Ok. That sounded easy enough.

Caleb came out of surgery. He was wild-eyed. He was hysterical. We knew it wasn’t right. We knew that his pain was already out of control. And we were surgery pros by this point. Waking up from surgery is when the pain should be at it’s lowest. It only goes up from there. Something was wrong. Our nurse disagreed. And she wouldn’t call the Doctor. It was after hours. We were trapped.

Sidebar: Nurses are amazing. I have personally experienced hundreds of nurses. They make all the difference. They set the tone. They meet the need. I am so thankful for ALL the wonderful nurses that have gone the extra mile. They are a blessing straight from the Lord. They are a comfort.

This nurse. Was in the wrong profession. Period. We were nothing but a number to her. An inconvenience.

As Caleb’s pain grew and grew…..well, I can’t even describe it. The despair that Ryan and I felt. And Caleb was screaming so loud that we couldn’t come up with a plan or leave the room to find help.

Finally, in God’s goodness, came shift change. And Clay. Clay walked in the room and knew this wasn’t right. This little boy should not be in this kind of pain. He figured it out. Caleb was only getting a bolus pain medication. It was a strong one but it was only good for one out of every four hours. And it had been at least 10. Caleb was so far behind the pain that the bolus drug couldn’t even do its job. It was bad. So bad. Caleb even tried to get out of bed and run out of the room. On his casted, broken, bone-infused feet. Trauma.

Here we are. Nine years later. There are still triggers that take him back to that trauma. The list goes on and on…. people in wheelchairs or with prosthetic limbs, hospitals or anything that resembles a hospital, blood draws, Wasabi….. Yep. Think about it. The hats. The tools that they clang around on that cooktop. The cooktop itself, it looks like a surgical table.

Sometimes I just say the same old things don’t I? Caleb has taught us so so so much. And it is crazy how the Lord has used all that to equip us for expanding our family.

Children from hard places. That is how children in foster care are often described. In other words…. Children from trauma. When any one of my children is disregulated. When any one of my children is not themselves. When any one of my children is extra clingy. When any one of my children isn’t feeling well….. I have to ask myself, “Is this trauma related?” If so, what was the trigger? How can we work through it together? How can I point this child to Christ? To His grace, mercy, love and provision. I am writing all that as a reminder to myself. Because what I want is comfort and convenience. I don’t want to deal with the never-ending waves of trauma. It’s just so much.

But it’s not too much. In His strength it can be done. It can be done well. And to His glory. And actually, I don’t even have to be rocked by the waves. That’s really up to me. And my dependence on God’s Word.

Why was going anywhere such an ordeal? When Caleb was younger, probably up to age 7, it was a deal to go anywhere. Seriously, it was hardly worth it. He would FREAK OUT. Especially getting out of the car at our away-from-home destination. Always.

Being a first time mama is hard on anyone. Having a special needs child is pretty much next level. For so many reasons. As that child grows and changes, everything changes. And there is no one who can really guide you. All the doctors say, “You know him best mama.”

As we made our rounds to specialist after specialist I would listen hard. For the key words. The words that would help me. The words that would be another piece of the puzzle. And make sense of our chaos.

Disorientation. That word was thrown at me. In the middle of a bunch of other words. The doctor said it like it was old news. It wasn’t for me. It was headline news. But that is how it goes as a special needs mama. No one knows what you already know. They assume you know things that you don’t. A lot. Then, once you realize these precious nuggets, you realize how behind you really are. Further evidence of your failure.

When I was a little girl we rarely went to the movies. And if we did it was a matinee. I still remember that feeling of walking out the side door after a 2 hour movie. I was so shocked it was light outside. And where was our car? We came out of a different door than where we went in. The state of not knowing where you are in space. That is disorientation. And that is where Caleb lived.

The explanation for that is still forming. We have suspected a brain injury that occurred during pregnancy. Maybe a stroke. Maybe a hemorrhage. But practically, it really didn’t matter why. Practically, it just felt hard.

I am a student of my children. That started with Caleb. I learned him backwards and forwards. As information about him came to light, I learned how to use it to our advantage. From the very beginning I noticed that water was a huge comfort to him. I would put that sweet, hysterical baby in the bathtub and he would be calm in a matter of minutes. Later I learned that water was grounding him. It was covering his skin and nerve endings. It was showing him exactly where he was in space.

Two years ago the good Lord blessed Ryan and I with the perfect additions to our family. But it wasn’t perfect. It was hard. In fact, it felt like chaos. Alexa had so much anxious energy that she couldn’t sit down or sleep. We saw her darling face at 5 am each morning and she had to stand at the table to eat. Collin raged. And raged. And raged. Cheyenne was attached to me. Literally touching me as many minutes of the day as possible.

Our caseworker came by for a visit. Disregulated. She threw out that word like we had talked about it a million times. Nope. It was headline news. These precious three were disregulated. They had no ability to regulate their emotions. Because of past trauma. Because of current trauma. Us. The Atkinson home. It was trauma to them. They had no idea how long they would be with us. They had little to no connection with us. They didn’t understand our rules or the way we function. They didn’t know if they could trust us.

It was a nugget. We could use it to our advantage. What they all needed was love and security. And patience. So much patience. They also needed structure and boundaries.

I won’t bore you with the details of how we set about doing these things (at least not today). But lets just say that God used what He taught me through those early years with Caleb. And he even used Caleb. When our sweet Collin was coming down from a rage he would often crawl into Caleb’s lap and put those big, heavy, low muscle tone arms over his little tiny self. A brother is better than a weighted blanket. Especially with that big ol’ heart.

And Silas. Steadfast Silas. What an impact that boy has had on all four of his siblings. They can all count on him. To be kind. To put himself last. Which is why he waited a little too long. To give us his key word. Displaced. He wasn’t quite sure of his place in our family or even what our family had become. It was hard.

God has worked so big in all of our hearts. We are truly a family.

We put in a pool 6 months before we became a family of 7. We had a peace about that. And now I see why. It has been an amazing therapy tool in our journey. As you know, water works wonders for frayed nerve endings.

I love to be happy. I love to make other people happy. There is absolutely nothing wrong with that. Or is there? For me it can often become an idol.

My children are happy a lot of the time. They are not happy all of the time. And they shouldn’t be. It’s not even what’s best for them.

I was at the gym. I overhead two ladies talking about their grown children. Well, they were mostly complaining. The complaint. Their children are entitled. They expect everything. They don’t want to work for it.

When Ryan and I were young parents we had so little. We could live but that was it. There was no money for extras. And that was the beginning for Caleb and Silas. I don’t remember ever telling them not to ask for things. I think they just knew. It was pretty obvious.

Through God’s goodness and provision, Ryan got a really good job. It fell in his lap. In time, we were able to move to a nice house in a nice neighborhood. We could buy some extras. We even put in a pool. And that is when we looked at one another and realized we could do more. We opened our home to foster care.

I’m not sure what we were expecting. I definitely was not expecting 3 children. I most definitely was not expecting 3 entitled children.

So, before I go on I need to make sure we all understand something. I am very protective of my children. They all, all 5 of them, have their own stories. There is a lot of hard in those stories. And there is a lot I can’t share because it is theirs to tell. But, there are so many things that we are learning together. Things that my Fab 5 are happy to share. I wouldn’t say a word otherwise. I need them to trust me. They need a mama that they can trust. A mama that has their back.

I remember the first time I took all of my children to the store together. Costco. It started the minute we walked in. “Blankets! Can I have a blanket? TVs! Can we get a new TV? Goggles! Can I get goggles?” My head was spinning. I wanted Cheyenne and Collin and Alexa to like me. I wanted them to feel cared for.

When we left that day I felt defeated. I had said yes to some things that I really didn’t feel good about and they still weren’t happy. Because of all the things they didn’t get. At home I was unloading the box of giant cookies that I was pressured into buying. Alexa said, “Can I have a cookie?” It was an hour before dinner. I wanted to sit down and have a good cry. I was just so weary. I said, “Yes. You can have a cookie.” She said, “Well, then can I have 2 cookies?” And then it hit me.

These children were entitled. They expected everything. They were grateful for nothing. When I gave into them it did not make them happy. Not even for a moment. In fact, they did not even feel cared for.

I learned that day that “Yes” was not making them happy. And it certainly wasn’t making me happy. That realization gave me the freedom to say “No” with confidence and in love. In the beginning, every “No” came with an explanation. “No Alexa. You can’t have a cookie. I love you and I want your body to get what it needs to be healthy a strong. Cookies are a treat that we will have on occasion.” “No Collin. I know you want to look at a screen but that is not what is best for you. Your body needs activity and it is beautiful outside. I love you and I want you to experience all God has made.” “No Cheyenne. You can’t sit with the adults. We are having adult conversation. You need to go play with other kids. Friends are a gift from the Lord.” Oh Ya’ll. It was so rough at first. I had some miserable children. I remember Collin laying at my feet in the kitchen floor… “Please. Please let me look at a screen.” All day. For days and days. It was so so so hard.

As with most things in life, it was a process. But boy have we made progress. I would no longer describe any of my children as “Entitled.” They say please. They say thank you. It means something to them when someone chooses to give them something or spend time with them. They no longer beg for cookies and screens. We have a very practical system for earning money so that they can save and buy things that they really want.

A prime example: Cheyenne. Precious Cheyenne. She used to ask for absolutely everything. And she appreciated nothing. I can’t even believe I just typed those words. Because that is not our girl now. She is so grateful and kind. And she loves to give. She has been saving her money for the last few months. There were things she wanted and didn’t buy. Do you know what she did with her money? She bought me a $79 Pandora charm that says “Moments spent with you are my favorite.”

I think I will say this again and again…. We have a long road ahead. But our Lord will give us all we need. He will give us the energy. He will give us the wisdom. He will give us the love so that we can pour it right back out. We just have to stay the course. The course that is laid out in His Word.

I feel like I can do better. So much better. Today, I saw with my own eyes what love can do. But it’s not just any love. It’s Caleb love. It is big. So big. It is vulnerable. It is precious.

When Caleb came into the world, it changed. For the better. I really cannot imagine a world without him. The way he loves people, and connects with them, is unmatched.

Disabled. Handicapped. Those words have been used again and again to describe our boy. And I get it. Physically he cannot do what most people can do. Academically he cannot do what most people can do. Relationally, he is so far beyond all of us. There is really no competition at all.

It has always been. Caleb’s ability to connect. But I have been thinking hard. Really hard. Back to the beginning. Even in the midst of my own personal turmoil during those early years, it became impossible to miss. Of course Ryan and I felt the connection. We assumed it was that way for all new parents. Now I’m not so sure. I am starting to realize that Caleb showed us what connection really is. Or what it can be. Then, there were the grandparents. They felt the connection too. But again, he was the first grandchild on both sides. We all missed that he was actually teaching us something new. Something amazing.

As the Lord began to open my eyes I began to see that Caleb was making connections with people all around us. Without words at first. And he was making his way deep into their hearts. And he has stayed there. Then, in God’s great provision, he saw fit to give Caleb words. He could say what he felt in his heart. I remember when he first started saying “I love you.” He said it to Ryan and I. To his siblings. To his grandparents. To his aunts and uncles. But it didn’t stop there. He said those 3 big words to his teachers and therapists. He said them to his friends. But it wasn’t just the words. It was the heart. He gives all the love in his heart every single chance he gets. If you have experienced it, then you know exactly what I am talking about. And you have no idea how happy I am for you. And for me.

June 2, 2021. Caleb turned 16. And you guys showed up. So many people came to our house to wish Caleb happy birthday in person. There were medical professionals, therapists, grandparents, friends, neighbors, teachers. There was even a grand finale. Nick (see my post “A Caleb-sized Hole” to learn more). Nick rolled up at 6:05 in his big loud diesel truck coming straight from work. He had “Caleb 4-6” written on his hand so he wouldn’t forget. Perfection.

I know with all my heart that was just a fraction of the people that Caleb has impacted. I got so many calls and texts yesterday wishing Caleb a happy birthday. I got notification after notification from WordPress saying blog views were off the charts. I know you were looking for Caleb. All of you wanted him to enjoy his special day. And boy did he ever. Thank you so much for caring. You all mean the world to him.

I absolutely cannot wait to see how the Lord continues to use our Caleb. Stay tuned. 🙂

Do you recognize those young faces? Man, we had no idea. I was 2 days away from having Caleb in that picture. I had all the plans. But as we all know, God’s plans were greater.

Our sweet boy was born June 2, 2005. He will be 16 years old this year. What?! I really cannot wrap my mind around it. On a lot of levels. I am so thankful to be where we are. I am so thankful that the Lord showed me the beauty of our circumstances in plenty of time for me to enjoy it. And I have. This sweet boy has brought me so much joy. He has brought joy to so many. To many of you.

I would love for you to come celebrate Caleb. On Wednesday, June 2, from 4-6 pm, he will be camped out in our driveway. Waiting for you. He has a T-shirt for you to sign that says “LOVED” on the front. Please don’t bring gifts. Just bring you. If you know Caleb, you know that is all he wants.

It is so so so hard to be present. To live in the moment. We have so much pulling at us. So many distractions. And the future. It’s so ….. unknown.

Mamas worry about their babies. If we want to do what the good Lord says, and not worry, we have to fight hard. And even still, the scary thoughts creep in. They often take us by surprise.

When Caleb was a baby and well into his toddler years, I had trouble sleeping. I was so busy during the day. I could push the bad thoughts away. At least for a minute or two. But at night, as I tried to relax…. well, I just couldn’t. Terror. Actual terror. It would take hold of me. All the thoughts would come crashing in at once. I couldn’t even discriminate one from another…. It was an interstate pile-up in my mind.

Do you know what I worried about a lot? Middle school. How bizarre is that? Caleb was so little. But that was just it. I knew he wouldn’t always be little. I knew that he would one day be big. And kids can be so mean. Especially in middle school.

I shouldn’t have worried. I mean I REALLY shouldn’t have worried. Because Caleb is finishing up his middle school experience. And everything is ok. Beyond ok. Amazing actually. But more importantly, I shouldn’t have worried because the Bible tells me so…

^{Matthew 6:34}  “So do not worry about tomorrow; for tomorrow will worry about itself.  Each day has enough trouble of its own.

I don’t know if you have read all of my blog posts. It’s crazy to me that you are reading this one. But, I have mentioned before that my starting point is often in the middle. So, here goes…

Yesterday, I brought Caleb to school. I also brought treats. Cake Pops to be exact. I can make some mean cake pops. I know that sounds like bragging… because it is.

Celeste (a precious teacher’s assistant) was waiting on us to escort Caleb inside. I walked to the classroom too because I was not about to trust Caleb to hold cake pops. (He was eyeing them the whole ride over). We walked past the principal, Mr. Edmonds. He said, “Hi Caleb!” Caleb said, “Hi! You say my name?” ……..Do you know what Celeste told me? Mr. Edmonds gives a shout out to Caleb during the school-wide announcements! Seriously?! I can’t even. That is just next level.

There are the people that do their jobs. There are the people that do their jobs well. Then there are the people that are next level. That has been my experience at Farragut Middle School. Next level.

Caleb has been loved so big. By everyone. So, in case you don’t know…. special education is no joke. There are so many levels and parts and people. Each child in the program has special needs. That means they all have different needs. Very different. Each child has an IEP. An Individualized Education Plan. And you wouldn’t believe how specific it is. There are goals set for that child. So many goals. Caleb’s current IEP is 25 pages long. And the goal is for all the goals to be met.

Caleb’s special ed team is so extra. So next level. So above and beyond. These people love Caleb and all of his special friends. They love them in the way that suits them best. They do it with every bit of themselves. They do whatever is required. When it is gross. When it is exhausting. When it is the same thing day after day. And they do it with all the love in their heart.

The regular ed teachers. They have included Caleb. They have included his special friends. They modify in a way that is meaningful. They are happy that Caleb is singing at the top of his lungs (and extremely off key) in chorus. They are thrilled that he creates something that he is proud of in art, even when it makes an insane mess. They are ecstatic to include him in basketball games in PE…. And on and on. At IEP meetings, there always has to be a regular ed teacher. It’s the law. But you know what, those teachers always really know Caleb. They are not just there to check a box. They actually know and love Caleb.

The administration. Who would think that they would have such an impact on my child through actual relationships? Yep. They actually took the time. To really know him. So many times this year people commented to me on Mr. Edmonds and his love for Caleb. That man is the principal of a huge school. But he cares. And Ms. Hamlett (8th grade principal), next level. She stepped in and worked in Caleb’s classroom. A lot. Because someone had to. And she did it well. With all the love. She got it done.

The “typical” students (AKA regular ed students). Well, now I have official tears in my eyes. Just today, this actual day, I received a phone call requesting that Caleb please come to the 8th grade banquet. Because the kids want him there. Because they love him. I got to tell Caleb about that phone conversation tonight at dinner. I got to tell him how much his friends want him there. Then, I got to tell him there will be UNO. Man, I wish I had taken a video of his response. Priceless.

Middle School. When I think about it, I get all the warm fuzzies. I’m sure it’s always been that way. 🙂

It’s Friday night. That’s family movie night in the Atkinson house. And it’s Collin’s week. You know what that means…. Star Wars. Tonight, I was snuggled up on the big couch between Collin and Alexa, all covered in blankets. We were the coziest. Suddenly Alexa said, “Mom, nothing could ever break up you and dad.” I said, “Nope sweet girl. NOTHING could ever break up me and dad. We are a team.” She looked at me with the most contented look ever and said, “You are a team. Our whole family is a team.”

Ryan and I met at blockbuster video 21 years ago this month. Remember blockbuster video?! He worked at the one right next to my house. When I met him I was very intentionally NOT dating. But immediately I could tell he was worth the trouble. The very first conversation I ever had with him was about Christ, and our mutual love for Him. And so began our team.

Wow. What a journey it has been. Having Caleb was a game-changer. We were warned immediately about the impact that a special needs child has on a marriage. And the divorce rate. But we were not shaken. In the Lord’s strength we have only grown stronger and stronger and then stronger still.

Then came Silas. Another ally. He has always been for us. From an early age he valued our family. He was proud to be an Atkinson. He has always trusted us and understood what we have tried to teach him.

Finally, our final additions. Cheyenne, Collin and Alexa. Three more allies. It’s almost beyond belief. Of course, they weren’t immediately sold on the Atkinson team. They had to learn us first. They had to see what we are all about. They had to see if our words matched our actions. But in time, they learned to trust us.

Ryan and I. Our marriage. It has provided security for our children. Dr. Glover told us it would. But it felt like sort of a coincidence with our first two. It became very evident with our final three. They even talked about it out loud. And so we became Team Atkinson. Family of 7.

Last summer Vanderbilt called to tell me our Orthopedist of the last 11 years was retiring. Nooooooooo!!!! They wanted to transfer us to a different doctor, Dr. Martus. The first available appointment with him would be Wednesday, May 5, 2021. Whatever. It was 9 months away. That would never come.

Well, last week I had to come to grips with the fact that it was here. I had to make the arrangements. It’s a 3 hour drive to Nashville, the appointment, then a 3 hour drive home. Ugh. The dread came over me. I arranged for our sweet neighbors to pick the kids up from school and keep them until Ryan got home from work. I asked my mom to go with us just to make it a little more fun. But the dread had settled hard. Right to my bones.

On Tuesday, the day before the Vandy appointment, I got a call from Caleb’s school. He had hurt his knee at school playing four square. When I arrived at the school Caleb was a mess. He was crying hard. All the people were trying to comfort him- the nurse, the teacher’s assistant, the principal, the office staff. Nope. Inconsolable. And he couldn’t put any weight on his left leg at all. The nurse and I literally lifted him into the car. When I got home, I had to carry him inside. Then carry him to the toilet. Then carry him back to the car to get his siblings at school. It must have been adrenaline because he definitely weighs more than me.

Just as I was starting to feel defeated. Overwhelmed. Sad. Tired….. the pieces of God’s provision became clear. And they started coming together. And I was seeing the beautiful picture. Even in the midst of the hard. I was seeing that this is what God has for us.

That appointment. We had that appointment at Vandy the next day. We needed it desperately. And if we hadn’t already had it, it would have been impossible to get.

My sweet husband. He came home from work and saw the need. With no hesitation he cancelled an important meeting so that he could chauffeur us the next day. And do the heavy lifting.

My mom and neighbors worked together to figure out caring for our other children. Because they wanted to. Because they love all of us.

Ryan, Caleb and I went to Vandy. We met Dr. Martus. What a kind and gentle man. He was so patient. It was our first visit with him and yet he felt so familiar. And I think he cares for us. Genuinely cares. Sadly, Caleb’s knee is fractured. He is casted from thigh to toes on his left leg. As Tony (the sweetest cast guy ever) was applying Caleb’s Duke blue and yellow cast, Caleb was crying so hard. I’m sure he sees that a lot but he was heartbroken for Caleb. He cared that Caleb won’t be able to swim. So thankful for God’s provision of people that care.

The next day, Marmee picked up Silas, Cheyenne, Collin and Alexa from school. They had not seen Caleb for 36 hours. I wish all of you could have been a fly on the wall. The love and devotion that these Fabulous 5 have for one another is beyond words. We literally had to set a timer for taking turns pushing Caleb in his wheelchair. They all had special activities planned that they wanted to do with him. They all said they wouldn’t swim until he got his cast off (we are trying to talk them out of that by the way). They made him cards. They served him meals. They played blocks with him. They read him books. I can’t explain the way it all made me feel. Could they really be this devoted to Caleb? Is this for real? And then something hit me. Caleb has been devoted to each of them. Not just sometimes. Always. In God’s provision, our sweet children are really this devoted to one another. The Atkinson team knows devotion.

Today Caleb went to school for a short day. Because he missed his FMS people and they missed him. We were greeted in front of the school by Lil. Another one of God’s provisions. She has been his Physical Therapist for many years. She is adorable and has more energy than a teenager (FYI- she sounds like a teenager when you talk to her on the phone. Crazy!). She has taught me so much about Caleb over the years. I remember when he was in the 2nd grade and she was doing treadmill therapy with him. She was so excited when she got him up to 1 mph on that treadmill! I had been frustrated about how slow he walked…. she taught me that my bar was too high at that moment. She also bought this huge tricycle for him to ride around Farragut Primary School. And she would have him deliver things around the building riding it! She is just the best. Today was no different. She made sure he was as comfortable as could be. She made sure I was as comfortable as could be. She made sure everybody knew what was what. And she was happy to do all of it. Everybody was. The teachers, assistants, principals, therapists…. they all were so happy to have Caleb back.

I am so tired. Ryan is so tired. Bone tired. But our hearts are so full. How could they not be? We are surrounded by the Lord’s provisions. And we have faith. We have faith that He will provide for whatever else He has for us.

Expectations. We all have them. We have them of other people. We have other people who have them about us. Some expectations are good and healthy. Some are not.

Two years ago, Cheyenne came into my life. She was so sad. So sad and so anxious. As I tried to connect with her, and really understand where she was coming from, something came to light. At nine years old she was able to unjumble all the jumbles in her head and say this, “When we go to a new home, all the rules are different. Sometimes there are a lot of rules. But I can’t learn them all at once. And there are also the rules that nobody tells you. Those are the worst ones.”

Expectations. They are often unspoken. They really can be the worst ones.

Setting the bar for what we expect can be very simple. It can also be quite challenging. Sometimes we set the bar in the wrong place. Maybe we set it too high. Or even worse, maybe we set it too low. We do not want anyone reaching for a bar that they could never grasp. We certainly don’t want them stepping over the bar without even noticing it.

Caleb has always had such wonderful educators and therapists (well almost always). These people give so much of themselves because they love it. They love these special kids. They try and set the bar exactly where it should be. They look for all the potential and they do everything they can to get there. They come to birthday parties and baseball games… they care and they change lives.

Sadly, there are the ones who don’t belong. We have only experienced that once. But it was devastating. This lady is no longer in special ed. Thankfully.

Caleb was 4. He was in a pre-K special ed program through Knox County. He was only in the program for 2 months before I pulled him out. And this was why. (There were actually several concerns prior to this conversation but this straw broke the camels back for sure). I was picking Caleb up from school one day. I asked the teacher if I could talk to her for a few minutes. I proceeded to tell her that I was concerned about Caleb’s development in speech. I wasn’t blaming her. I wanted to know how I could help him at home. She got angry. She practically spit these words at me, “What in the world do you expect?! He’s handicapped.” I had never before and have never since had any teacher or teachers aid or therapist speak to me about Caleb in that way.

There was no bar at all. Unbearable.

So now we come to my starting point for this post. Weird huh? I have zero training in writing, so I basically make up my own rules. A lot. I purposefully use sentence fragments. Is that a thing? I also often have my starting point somewhere in the middle. My “starting point” is what spurred the blog. It’s what hit me during the week that I had to write about.

Kate. Lady Kate Bahruth if we are being fancy. And she is. This little girl is something special. I am tearing up as I write. Because I love her. I love her so much. She has been through a lot. So much hard happened before she was even born. And some more hard came after. But she is an overcomer. I just see it. Her whole family sees it. Her friends see it. Her therapists see it. Honestly, it’s pretty hard to miss.

Us mamas are on the hunt all the time. We are looking for what is best for our children….those that God has trusted to our care. We are looking for the right friends. We are looking for the right school. We are looking for experiences that delight our children.

For mamas of children with special needs, the stakes are so much higher. We are also on the hunt for the perfect doctors, diets, and therapists. Just to name a few. And they can make you or break you… and that sweet child.

It’s so interesting how God knits believers together. Samantha (Kate’s mom) and I have known each other for a few years now. But, through Kate, the Lord is bonding us deeply. I am 13 years ahead of Samantha in the special needs journey. My life is certainly a lot more settled than hers by now. We mostly have our rhythm. So, I am able to be a support to Samantha. What a blessing! However, that requires a level of maturity on my part…. and sometimes I have to work really hard to remember that.

Maintenance. That means “to keep something at the same level or rate.” That word was used in reference to Kate recently. In reference to 2 1/2 year old Kate. By a professional. By someone who was supposed to help her. They dropped the bar. They lost sight of her potential.

And you know what? I have no doubt that person loves Kate. I am sure that they had no idea that they said a curse word. Yep. From now on that is a curse word in my book in reference to Kate. Words are powerful. We all need to remember that. We can’t unsay anything. We can backpedal. We can clarify. But we can’t unsay.

In God’s provision, Kate has a whole team of people that love her. So many wonderful people who have that bar high…. right where it should be.

Last weekend Alexa was invited to a Ninja birthday party. The birthday boy said that Cheyenne and Collin could come too because they all go to the same school. So nice! Just before it was time to leave, Caleb starting begging to go. Alexa was insistent that he not. She loves Caleb so much so I thought that was weird. I pulled her aside and asked her what was up. “I don’t want him to go because most of those kids have never seen him before. They will stare at him with that weird look. Then I will have to go all ninja on them. Then I will get in trouble. Then Caleb will be stressed. It will be a whole thing.”

I’m just being honest. The struggle is real for me when someone uses the word “maintenance” in regard to Lady Kate Bahruth. I am definitely going all ninja on them in my heart. Not cool. I know it’s not. I’m just sayin’….. don’t test me. 😉

What’s the plan? People are always asking me that. The question comes in a variety of ways. In different combinations of words. Or it’s sandwiched in the middle of a conversation. “What’s the plan for Caleb?” “Will he live with you forever?” “What will he do after you guys are gone?” “Will he get a job one day?” “Will he live in a group home?”

Good questions.

And actually, those questions don’t bother me. They really are good questions. And I am always open to questions. It helps us know each other better. Understand each other better. Love each other better.

The plan is not clear to me. I am so thankful that our Lord has had the plan since the beginning of time. Of course, we have to do our part, as far as it depends on us.

Seven years ago we moved to our house in Village Green (shout out to VG!!!! ) We knew it would be a great place to raise children. But we also knew it would give us options for Caleb in the future. The current “Fab 5 room” could easily be turned into an apartment for him. There are several employment options within walking distance and there are sidewalks to get to them. There are parks and pools in the neighborhood to keep Caleb social and active.

One of Caleb’s favorite activities (when he can’t swim) is swinging. He spends hours swinging on his little wooden swing that hangs from the big tree in our front yard. He can watch his siblings and neighbors play. He feels a part of what they are doing even when it is something that he cannot do. He finds real joy in watching them be happy. He also loves his swing because of all the people that go by. He gets to see our neighbors come and go. Our neighborhood is a great place to exercise. So, he also sees a lot of walkers and runners and bikers. And a lot of them know his name and yell “Hi Caleb!” as they go past. Our house also happens to be on the dogwood trail. So for the last few weeks especially he has gotten to wave to lots of people passing by.

Then there is the Village Green Swim Team. Have I mentioned that my spirit decade is the 1950s? Swim team is straight out of that decade. Kids ride their bikes to swim practice. So cool! BEST. COACHES. EVER. They are so so so encouraging. They are all about each swimmer gaining confidence and getting faster in the process. And the other swimmers. Amazing. They take cues from their coaches and are so kind and encouraging. Winning is NOT the most important thing about being a VG gator. Good character is. Swim team has been an amazing source of connection for Caleb. The coaches and swimmers and parents absolutely love him! When he swims a race so many people are cheering. And they don’t stop. For 3 minutes. Yep. That is how long it takes Caleb to swim a race. I am so thankful for God’s provision of swim team. What a bonus blessing. I can’t tell you how much it has encouraged my children and me as a mom.

Our children. We are doing our best to train our children to LOVE ONE ANOTHER. And they do. More today than yesterday. Certainly more than last week and last year. It is growing all the time. As they learn what love really means. As they learn to put one another above themselves. Silas, Cheyenne, Collin and Alexa all understand that Caleb needs special care. They know he needs it now and that he will need it in the future. They get it. They are all here for him now. They all want to be there for him in the future. You would not believe the real life conversations we have in this house regarding Caleb. My heart. Sometimes I feel like it will swell out of my chest. I am so thankful for each of my Fabulous 5 and the amazing hearts that our sweet Lord gave them.

Silas. Oh my. He is so so so protective of Caleb. He is always looking out for him. Just recently he was telling me how proud he has always been of Caleb. He has loved bragging on his special brother. He has helped with Caleb for as long as I can remember. He put on leg braces, tied his shoes, helped him get dressed, pulled him in wagons and on sleds. When he was 4 years old he told me not to worry because he would take care of Caleb when we were gone. Then, when he was 10 he asked if he could talk to me privately. He wanted to be clear that he would like to buy our house when we are old so that Caleb can stay put and be with him. He felt it was important that Caleb not have to transition any more than necessary after losing his parents. And of course he would need to be able to swim. He was 10!

Cheyenne. Sweet girl. You might remember that she wants to be a therapist one day. Just this week she and Caleb were sitting at the kitchen island while I cooked dinner. Caleb said, “Chey, mind you sharpen my pencil?” She said, “I will show you how to sharpen your pencil. You can learn to do it yourself. Then you will be able to sharpen it whenever you need to.” And she did. And he did. Precious. Also, this week Chey and I were talking and Caleb came in the room with a bag “packed.” He said, ” I go out of town. I pack my bag. I have blocks and a blanket. Tell me bye.” We both yelled bye very dramatically. Then she looked at me and said, ” I am so glad that Caleb will live with Silas or me or Collin or Alexa because he probably really would pack a bag with just blocks and a blanket then get right in the car with a stranger.”

Collin. Just now he saw that I was working on my blog. He said, “What are you writing about mom?” I said, “Well, it is about the plan for Caleb. For his future.” He said, “Oh mom! Don’t read it to Caleb! I want it to be a surprise!” Collin wants Caleb to be happy. Collin loves it when he can make Caleb happy. Just a few days ago he and Caleb were playing together in Collin and Si’s room. All was well for a long time. Then I heard a frantic “Mom!!! I need you!” I ran upstairs and Collin was standing on the ladder that goes to his loft bed. Caleb was trapped on the loft bed and was trying to get down. Collin was trying to help him. Caleb weighs 140 pounds. Collin weighs 50 pounds. Not gonna work. Somehow Collin had gotten Caleb up there because “it would make him so happy.” Last week, Collin made a crown for Caleb. Because “he is the best.” Collin is excited about Caleb being an uncle to his own kids one day. He sees Caleb as a steadfast presence in his life for forever.

Alexa. Little Mama. She will do all the things and is happy to do them. She will wipe Caleb’s face. She will pull up the back of his shorts when his bum is hanging out. She will unpack his backpack and do his homework with him. She will make his dinner plate. All the things. She thinks Caleb is so perfect just the way he is. One day, Collin was talking about how he is going to work with Caleb on his “yes being yes and his no being no. (Matthew 5:37)” Alexa said, “Collin! Why would you say that?! He is just perfect the way he is!” On Easter Sunday, Alexa and Caleb swam together in the pool for hours (not unusual). At some point, she ran over to me and said, “Mom! Caleb just made my Easter! We were playing baby and he kissed me on the cheek! It was so sweet! He has never kissed me on the cheek! He bit me a little but he can’t help it because his teeth stick out.” Precious girl. She even had a little bite mark on her cheek but she didn’t care. She loves Caleb too much to even notice.

We have never asked or insinuated that our children be responsible for Caleb. We have asked that they love each other and that they look out for each other. But, in God’s provision, they do feel a sense of responsibility for their sweet brother. We have a long road ahead. All of our Fab 5 will grow and change. Spouses and children will come into the picture. But guess what…. God knows all that. And he will provide. He will make a way. He will work all things together exactly as he intended. For now, I am watching as sweet Caleb basks in the glow of the love he feels from those around him. And I am praying that he will always be supported and surrounded by people who know and love him.

Wow. I really can’t believe it. Silas is 13. Of course, we already had a teenager. Sweet Caleb is 15 1/2. Even though Caleb is not “typical” the teenage years have been different even with him.

I wasn’t really planning on writing about this but oh well. Warning: Rabbit Trail. A few years ago a lady came to our home to tell me about resources for families of the intellectually disabled. It turned out to be quite a devastating visit. She basically told me there was nothing for us and to check back when Caleb turned 18. But that wasn’t the devastating part. That came when she informed me that once an intellectually disabled child becomes a teenager, they often become aggressive and their parents can no longer care for them. I was crushed. The minute she left guess what I did? I called Dr. Glover’s office and asked to see him.

That was definitely the right call. Dr. Glover. One of God’s enormous provisions. I needed wisdom and I knew just where to find it. He sat down like an old friend and we just talked. He said something like this, “When any boy becomes a teenager his sin issues are now fueled by testosterone. If a child has struggled with anger that is now fueled by testoterone and they can become aggressive. We both know Caleb’s sin issue has been self-control. Well guess what Mama? That is now fueled by testosterone. But you’ve got this. God will give you everything you need.” Phew. That has definitely been the case. Caleb has struggled with self-control and God has given us everything we need. Day by day.

Silas. So steadfast. God has been so gracious to us with this sweet boy. From birth, he has never been the baby. From the beginning, he put himself after Caleb. He prioritized his brother’s needs above his own. He has been a support, a protector, an encourager. Then, when he was 11 he embraced 3 new siblings. And he put their needs above his own. He gave up his sweet huge room with it’s own bathroom and gave it to his sisters (because it didn’t make sense for them to share a bathroom with Caleb). He moved down the hall to share a much smaller room with Collin. He didn’t complain. Not once. He went from sharing his parents with one sibling to sharing his parents with four siblings. He didn’t complain. Not once. It was hard for him. A real struggle. But he dealt with it all with such grace and maturity.

Silas is the leader of our children. His 4 siblings look up to him. They take their cues from him. He gets that and he works hard to be worthy of that honor. He takes the responsibility of big brother very seriously. He is very comfortable showing all of them love and affection. He tells them he loves them every day, usually with a hug. Alexa especially needs that. When Silas hugs her she often won’t let go. She says, “Keep hugging me Silas!” And he does.

Silas has always looked for people to look up to. As he was approaching his teenage years he started noticing other teenagers. He talked to me a lot about things that he was seeing in them. Mostly attitudes. He saw so many sweet kids turn into disrespectful teenagers. He was perplexed. We talked about it a lot. He was determined that his hormones and desire for independence would be covered in love and self-control.

Silas is doing everything he can, as far as it depends on him, to live at peace with everyone (Romans 12:18). He knows the teen years will have challenges and he wants to be ready. He reads his Bible every day and is always memorizing scripture. He asks Ryan and I periodically if we are noticing any sin patterns in his life. When we confront him about sin he takes it with humility. Silas loves being with our church family. He loves learning about God’s word together. His favorite activity of the week is small group because he can gain a better understanding of what was taught from the pulpit on Sunday. So precious.

Ryan is reading a book called “Age of Opportunity” by Paul Tripp. It is about what an important time the teen years are. It is the time to teach them well. Deeper. It is not a time to just survive. It is a time to thrive. That perspective has been so helpful to all of us. Silas and Ryan both love God’s word so much. So now they are diving deep together, as father and son.

Silas trusts us and I am so so so thankful for that. Even when he doesn’t love our decisions he knows our hearts. He knows we are seeking wisdom and discernment. He knows we love him and that we are always trying to do what is best for him.

For his 13th birthday, do you know what he asked to do? He asked to spend a whole day with Ryan and I hiking Mount LeConte then going to dinner together. Instead of a present! Sweet boy!

Writing about Silas feels a lot like bragging. Please understand this very clearly. Ryan and I get no points for Silas. He has always had such a tender and teachable and special way. From the beginning, God has used having a brother with special needs in such a mighty way in his heart and life. He comes at the world with the Silas Atkinson perspective. Only he has it. And boy is God using it.

https://youtu.be/VBsDhgV5xXI– Silas caring for Caleb way back then. 🙂