Sunshine Soldier

Extra. It has 3 definitions. 1- “added to an existing or usual amount or number; additional”; 2- “excessive or extravagant”; 3- “doing the absolute most”.

Our Caleb is definitely extra. In all the ways.

We met with the genetic counselor from Cincinnati. Genetically, Caleb is extra. Specifically, he has a 1p36.11 duplication. It is so rare that it doesn’t have a name. It is so rare that very little is known about it. It is so rare that only 4 other individuals have been identified in the genetics database. But, so far we know that it comes with developmental and language delays, hand and foot anomalies, constipation and unique facial features. It does not have any life threatening conditions associated with it. It does not have a shortened life expectancy.

Praise Jesus.

Caleb is so special. We have always known that. Sarah (our genetic counselor) explained that this duplication happened right at conception. And that it is “de novo”. That means it’s new. It is not hereditary. So cool.

We are so thankful for God’s great provision all along the way in our journey with Caleb. Even without answers. In His great (and extra! goodness) he has provided doctors and therapists and teachers and coaches and friends and family. He has provided prayer warriors. He has provided a support team. And we love each and every one of you. Thank you. From the very bottom of our hearts.

The journey continues. And God will continue to provide. Please pray for endurance for all of us. Please pray that we are drawn even closer to the Lord. Please pray for continued health improvements for Caleb. Please pray that we can be an encouragement to other families in similar circumstances and more importantly that we can shine our lights SO brightly for Jesus!

Sidenote: I advise not googling Caleb’s duplication. There is a genetic condition known as Coffin-Siris disease. It also effects the gene mentioned above, along with other genes. So, a lot of what you come across on the internet is about Coffin-Siris, which Caleb does not have.

Micro Array. Have you ever heard of it? It’s a test. Maybe the most detailed test that can be done on a person. It looks at DNA. Well, technically it looks inside the DNA. For mutations and deletions and duplications of chromosomes.

Back in December, Dr. Bulonis (our geneticist in Cincinnati) requested the Micro Array for Caleb. And today. We got results. They found it. Way down deep. I am not ready to go into a lot of detail right now. We still have a lot to learn and a lot to process.

We have gone almost 18 years with Caleb being Caleb. With no answers. No explanation. No diagnosis. And in a moment, a lot has changed. But not really. Truth has always been truth. Even if we didn’t know what it was. Caleb is still Caleb. God created him. Chromosome by chromosome. Exactly as He intended. With a plan. With a purpose. And the world is so much better for it. He brings joy to absolutely everyone that he meets.

We are so thankful for the Lord’s constant goodness and provision and love. We are so thankful for answers. We are so thankful for our incredible support team. We are so thankful for all of you who have chosen to care about Caleb and pray for him.

Please pray for Ryan and I, our children and the rest of our family as we learn more. Please pray that we are filled with all the joy and all the hope. Please pray that Caleb’s health continues to improve as we get more and more answers and direction. Please pray that God is glorified. Please pray that He will continue to bless Caleb mightily.

I have faith. I have a lot of faith actually. I have faith that God is who He says He is. I have faith that He will do what He says He will do. He always keeps His promises. I have faith that He does more than we can ever ask or imagine. I have faith that His love for His children is so deep and so wide. It is unfathomable. I have faith that He works all things together for the good of those who love Him and are called according to His purpose.

As believers, we are called to have faith. That means it’s a command. We must have faith on the hardest of days. We must have faith deep in our hearts even when there is no evidence to support it.

But sometimes, for His glory. We get evidence.

Last summer was hard. That is an understatement. But, my heavenly Father was right there. He consistently drew me to Himself. He comforted my aching heart. He literally surrounded us with all the people who showed us all the love. And He was in all the details. He always is.

I started Sunshine-Soldier in February of 2021. My heart was bursting with all that the Lord was doing in our family. I just needed a place to share. Friends and family followed the blog. I would also often share posts with people I met in life. One in particular, “Darkness”, I shared a lot. It is about a very dark time in my life when I was coming to terms with Caleb having special needs.

When Silas was hit by a tree and taken by LifeStar to UT hospital, the outpouring of love and concern was immediate. I heard from everyone I had ever met in life. And more. It was impossible to keep up with the correspondence. So, I notified everyone that updates would be on Sunshine-Soldier. Which is a public domain.

People were touched by Silas. He made his way right into people’s hearts. So many prayed without ceasing. And they shared. Apparently a lot of people shared a lot.

I just came across this last night. Amazing. This is WordPress geographical data for the month of June 2022. Look how Silas’s story and testimony spread! Incredible. God is just so big. He is so mighty. There is nothing he cannot do.

Psalm 46:10- “Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth!”

Life has hard seasons. There is no denying it. Some seasons are so hard that they almost feel unbearable. But whatever God has for us is never unbearable. His Word promises that.

Last summer, my mama heart was breaking. And it was relentless. For weeks.

On June 2 I was driving to the hospital alone. I had gone home to celebrate Caleb’s 17th birthday. In the car, I listened to praise and worship music. “It is Well” came on. And it was just what my heart needed.

“When peace like a river attendeth my way
When sorrows like sea billows roll
Whatever my lot, Thou hast taught me to say
It is well, it is well with my soul”

I cried and I cried. My heart was breaking and rejoicing at the same time. I was reminded to focus on eternity. It is truly our only hope. In good times and in bad, it is always our only real hope.

And that is what got me through. People ask me that all the time. My answer is always “Eternity. Eternity got me through.” I knew Silas and I would be together forever. Maybe not in this life, but in the one to come. Many hard days and weeks and months followed. And I did not despair. Because I had all the hope.

Today we could not go to church due to some sickness in our home. But we watched it online. Silas and I were all snuggled up under warm blankets when our Crossway worship team began singing “It is Well.” And that June 2 memory came flooding back. I never could have imagined the work the Lord would do in and through our sweet Silas. I even got to share that memory with Si. Surreal.

Oh my. I truly do not have words. My heart is absolutely overflowing with thankfulness. I am so thankful to our God and Father. Who sent His one and only son to earth. To live a perfect life. To die on the cross for our sins. To rise on the third day. I am so thankful for our hope in Christ. For salvation. I am so thankful for the Lord’s continued provision and constant goodness. I am so thankful for His plans and His ways. They are absolutely always best. They are perfect.

Merry Christmas! Thank you for caring about the Atkinson 7!

Today was rough. It was exactly what the Lord had for us and He sustained us. As always.

I knew that it would be hard. I knew we would be tired. In all the ways. I knew that we would be so ready to go home. And I knew about the blood draws.

We had a 10 am appointment with Dr. Nat of Endocrinology. Oh man. What a blessing. Another educating doctor. He explained that issues in the Endocrine system can cause high blood pressure, which Caleb has. So far, no other doctor has found the cause. So, enter Dr. Nat. He is going to investigate Caleb’s thyroid and adrenal glands. And he is also waiting for answers from genetics. He is confident that if we all work together, we can put the Caleb puzzle together.

And then it was time for the blood draw. We went in the hallway to devise a plan. I explained how bad it would be. About how hysterical Caleb would get. I asked the team to not give up. To get it done.

I have 5 kids. None of them like having blood taken. But with Caleb, it is next level. He absolutely loses his mind. He has to be restrained. And he fights hard. The whole time. When he was a baby, I could restrain him by myself. Those days are long gone. Today, it took 4 of us. But we got it done. And I am so thrilled. I don’t take that for granted for one second. Many people have thrown their hands up over the years. Words cannot express how hopeless that feels. But today, we had a group of people that chose to come alongside and stay to the finish. I think we all felt like we had run a marathon when it was finally over.

Our 1 pm Ophthalmology appointment was canceled. The doctor was sick. I cannot tell you what a blessing that was. I cannot imagine trying to do that appointment after our morning. God knew. He is truly in the details.

Instead, Marmee, Caleb and I got lunch and hit the road. We were home by 6. We are so tired, so thankful and so feeling God’s provision.

Thank you all so much for praying us through this Cincinnati visit. I will keep you posted. It will likely take 6 months to get results. Please pray for clear answers. Please pray for endurance for all of us. Please pray that God is glorified in it all.

It’s over. They got what they needed. Thank you for praying.

Please pray. Very upset and scared about blood draw.

Phew. What a long day. And a sweet one.

We began our day with Orthopedics. There were questions and exams and X-rays. And then more questions. Dr. McCarthy was so kind and encouraging and SO full of energy. He thought Caleb was the sweetest. He said he looks great. The bi-lateral foot reconstruction he had at age 6 is holding strong. He has very mild Scoliosis that does not need treatment. We will go back yearly just to make sure everything looks good. Every single person in that office was so kind and so good at their job. Our X-ray tech was especially efficient. Caleb normally panics, but she was so calm and so quick and so accommodating. There simply was nothing to fuss about. We were out of there in time to go to the cafeteria for a snack, some hangman and a few silly photos.

Then on to Urology, Dr. DeFoor. He and his staff were also amazing. After a thorough exam he decided that we can see him only on an “as needed” basis. Yes please! We were done sooner than anticipated so we got to come back to our cozy apartment for lunch and a little rest.

Finally, gastroenterology. That was the big dog of the day. I had so many concerns to talk to Dr. Farrell about. And he listened to every one. With such love. He cared very much about my ideas and insights regarding Caleb. You could actually see him trying to put all the pieces together and come up with the best plan for Caleb. And it’s just going to have to be a process. He believes that the answers he needs will come from genetics and that could take months. So, for now, we are changing and adding some medications to give Caleb the best quality of life possible. He wants to see Caleb back in 2-3 months. We all felt so loved and encouraged when we left. Spoiler alert- I will absolutely have cake pops in hand upon our return.

Tonight, we went to the YMCA. Caleb got to swim. I got to run. Marmee got to watch Caleb swim and sew. It was so lovely. A perfect end to a perfect day. God is so good. He goes before us. He is with us. We are so thankful.

Please pray for tomorrow. There will likely be bloodwork which is usually quite the ordeal for Caleb. Please pray for more people that love him. Please pray that he is calm. Please pray for answers.

Well friends, God’s perfect provision carried us for the rest of the day.

After our visit to the geneticist, we came back to our sweet little boho apartment (with lots of yellow and natural light… my favs). We made orange chicken and spring rolls (thank you Aldi!) in our cozy little kitchen. We ate and rested. We pampered Caleb.

He wants to talk constantly about upcoming appointments. I actually used the photo of him holding his schedule as my phone screensaver. It’s easy access for us to talk about it constantly.

He was very encouraged by all the encouragement he received today. He feels extremely loved. And so do Marmee and I. Again, we are beyond thankful for our brothers and sisters in Christ who choose again and again to come alongside us. You are blessing us deeply.

Nephrology went extremely well. Again, Caleb was completely calm. He was downright happy really. I can see that he is blessing everyone he meets.

Dr. Mitsnefes was very encouraging and feels that Caleb’s blood pressure is well-managed with medication, a good diet and activity. He does feel that there is an underlying issue that has caused his blood pressure issues. He doesn’t believe it will be nephrology that finds it. He thinks the answers will come from genetics.

Dr. M made it clear that he wants to be a support to Caleb and to us. Whatever that means.

God is so good. His provision is perfect. We are grateful.

Please pray for tomorrow. Caleb has 3 appointments. That is going to be a lot. Please pray for a calm spirit for him. Please pray for loving doctors. Please pray that we can be a light for Jesus. Otherwise, we have completely missed the point.