The Stress in the Journey

One of the most challenging things for me personally on this journey is managing my stress. As a medical momma, I have to be on high alert constantly for anything unexpected that could happen. As we move further along in this journey, I am able to let my guard down a little more as Rhett isn’t as high needs as he used to be.

Tonight one of those unexpected incidents happened, and my mind started spiraling. Brooks accidentally pulled out Rhett’s g-tube in the bathtub. When the g-tube comes out, it is very important to get it back in immediately since it can close up quickly. My stress was rising, but I stayed calm. I attempted to get the tube back in, but did not succeed. My stress continues to rise as I’m thinking, “Do we have a spare g-tube?” “What if that one doesn’t go in?” “Would this be worth an ER trip?” “Will they recommend doing surgery to get it back in?” “Will we be exposed to Covid if we go to the emergency room?” Like I said, in stressful situations my mind spirals.

So I paused, took a moment to breathe, asked Dale for help, and got to it. I felt some resistance as I put the tube back in. That’s how quickly they begin to close. It wasn’t even out for 15 minutes, and it was difficult to get back in. But thankfully, I was successful in getting the g-tube back in.

Rhett barely uses his g-tube anymore, but he is still not quite ready to have it permanently removed. He is eating all calories by mouth, and almost meeting his fluid goals. We are still supplementing some fluids through his g-tube in the mornings and evenings. Even though he isn’t quite ready for the tube to go, I’m not ready either. That g-tube gives me a peace of mind. It is a comfort knowing we have access to give him nutrition and fluids if for some reason he won’t take it by mouth. It’s something that helps keep my stress level steady since feeding, nutrition , and growth has been a huge stress for me in this journey.

If you are on a similar journey in life, you are not alone. If unexpected things happen that make your mind spiral, you are not alone. If you struggle with keeping your stress under control, you are not alone. While you may feel isolated and that no one understands what you are going through, you are not alone.

We all face challenges in this life. It is often times very difficult to navigate. If you are facing hard circumstances, let me know. I would love to pray for you.

The Meaning Behind the Name

I began writing this blog 4 and a half years ago. It is hard to believe how quickly time passes! At the time, I chose to title my blog Mommy In Charge as a little play on words. I wanted to recognize CHARGE Syndrome in the title since it was the journey we were thrown into. As time went on, the name of this blog has evolved and meant different things to me at different times. There was a time where it was very ironic because I, the mommy, was in fact not in charge at all. I had to learn that this journey was full of the unexpected, and I had to patiently wait and follow Rhett’s lead. He was the one in charge, not me. More importantly, God is in charge and the one in control of all we face. I am so thankful to have not lost sight of that, although at times I needed more reminders than others. I hope that with this blog you have been able to really see how the Lord has worked in our life, and especially how he has taken care of Rhett through all he has faced. The power of prayer works, but it sometimes does not give you the answers at the moment you want them. Patience has been a hard lesson I have had to learn, and am still learning today.

Without getting too wordy, I wanted to share with you a way that this name, Mommy In Charge, has once again evolved for me. There was a time during these last 5 years that I have felt as if my life was so far out of my control and so far from what I expected it to be. I quit my full time job, what I went to school for and truly loved, to stay at home with Rhett. I have no regrets in my decisions because Rhett needed me, and I needed him. I always thought that I would go back into the classroom full time, but as life continues on this journey, it becomes more and more obvious that I am going to continue to need flexibility that a full time job will not allow for. I have been very blessed to have found an amazing organization that has allowed me to work and give me the flexibility I need for my family. With the New Year, I finally have had the courage to start publicly what I have been dreaming of for a while. I am “taking charge” and starting a new endeavor that I am so excited about. I have launched my very own small business, Mommy In Charge, where I am going to make and sell personalized beaded bracelets. I am so excited to use my creativity to make pieces of jewelry that will be meaningful and special for you! You can follow me on instagram @mommyincharge or comment or message me on facebook for more information.

I am so thankful for your support throughout our journey, and am very excited to see where this new journey will lead. Happy New Year!

A Whole Hand

Today is your birthday, and it’s a big one! Today you are five years old, a whole hand! Every birthday is a huge deal as we remember all you have overcome and gained each year. It’s a celebration of your life and how amazing it is. It’s a celebration of how many lives you touch by living yours to the fullest. It’s a celebration of you being YOU, exactly as you are!

Now your age is represented by a whole hand, and it is a reminder that God’s hand has been in all parts of your life to get you where you are today. With each procedure, each diagnosis, each appointment, and each therapy, God has been there guiding the doctors, professionals, and me to making the best decisions to allow you to live your best life. God’s hands hold you and keep you safe, and they hold me as well to give me the strength we both need. I thank God every day for your beautiful life, and I thank him for allowing me to keep you day after day, year after year, on this Earth with me.

When I was very pregnant with you, I remember thinking that I just needed to get through Christmas before you made your appearance on this earth. When I woke early that Christmas Eve morning to my water breaking, I thought that it had to be a joke. Now I love that you share a birthday with the Christmas holiday. It’s a special reminder of how Christ continues to carry us through. Your birthday is forever surrounded by the love and magic this season brings.

Happy Birthday, my sweet Rhett. I am so excited to see all you will accomplish in this next year of life.

Be Rhett

In a world where you can be anything, be kind. We’ve all heard it. This is an important motto to live by, but I also challenge you to be Rhett.

To be Rhett means to share your passions brightly. For Rhett, that’s his animals. He has no trouble showing you that he’s passionate about cows, lions, horses, or cats. To be Rhett means that you show off what you’re passionate about because you love it. Don’t ever be afraid to show your love.

To be Rhett means to love in a language that the other people understand. This can be without a verbal “I love you.” We have all heard that actions speak louder than words. Rhett is proof of that. He doesn’t need verbal words to express his love. He grabs your hand and leads you to a toy or game. His smile is love. His laugh is love. The curve of his cheeks and the sound that escapes his belly when he’s happy says I love you just as well as spoken words, if not more.

To be Rhett is to let your laugh be heard! Rhett can’t talk. He can’t speak words like you and I. But he can laugh and giggle. His laugh is infectious. His laugh (besides his kisses) are my favorite thing about him. I love being silly with Rhett, and doing something to make him smile and to make that deep giggle appear. It doesn’t take much, but running after him saying “RAWR” usually does the trick!

To be Rhett means to be resilient. Rhett’s faced many challenges during his life. Challenges with breathing, eating, walking, and hearing. But he doesn’t give up. He’s got a fighting spirit and a spark within him. We all have moments in life where we just feel like giving up. Some days are better than others, but we can be Rhett by digging deep down and finding that same fighting spirit to keep us going.

May you feel challenged today and the days ahead to be Rhett. Share your passions. Do a kind gesture for someone you love. Be silly and bring a smile to someone’s face. And when the days are tough, find that spark and let it fuel your fighting spirit just as Rhett does.

Written by Johnsie DeHaven

Hard

Kids are hard. I think that goes for both typical children, and for children who have special needs. There might be more hard things that we go through with Rhett, but sometimes Brooks can be tough too. Whenever you are on the outside looking in and think to yourself, “Having a child like Rhett must be hard,” I want you to remember these things.

Rhett is hard.

He works harder than anyone I know. The amount of hard work and energy he puts into everything he does shows through all of his accomplishments. He has to work harder than most to eat, breathe, walk, and communicate. He works hard day in and day out in all the therapies he has to do. Yes, Rhett is hard. He works hard, that is.

He loves hard. Rhett finds something he loves and then loves it with all his heart. He loves animals, books, and his family. He may not say “I love you” with words, but he says it with his actions. When he runs up for a hug, goes in for a kiss, or grabs you by the hand to lead you where he wants to go, he is showing you his love. Yes, Rhett is hard. He loves hard, that is.

He plays hard. From the moment his eyes open in the morning, to the moment his eyes close at bedtime, he is playing hard all day. He is playing, creating, and learning all day long. He plays just like any other child plays. Yes, Rhett is hard. He plays hard, that is.

I looked up the definition for the word hard, and it actually describes Rhett perfectly. Hard means not easily broken, and if you know anything about Rhett, you know this is true. He is so strong and resilient, and doesn’t let anything keep him down. Rhett is definitely not easily broken. I also found that hard means with a great deal of effort. This also describes Rhett because he puts forth his best effort in everything he does. Rhett is the definition of hard, just not in the way you might think.

Like I said before, being the parent of a child who has special needs can be hard. But parenting in general is hard. Let’s not forget that this journey isn’t just hard for the adults. This journey is hard on Rhett too. But let’s shift our focus to recognizing the effort it takes for Rhett to thrive and be successful in this world. This is a message to Rhett, but also to myself. Life is hard, but you can do hard things.

Philippians 4:13 I can do all things through Christ who strengthens me.