I try to begin where I left sometimes. That’s an impossible expectation. There is too much life in between. So much laughter. So much joy. So much pain. So much frustration. SO much frustration. But, somehow, no matter the amount of time that has passed, I do return. Whether it is days, months, or, years, I return.

Writing is me. It fills my soul. But, it also hurts. It physically and emotionally pangs me. It’s allowing myself to be completely vulnerable. To share the hurt and the aches, but also the simple joys I sometimes savor for myself. I’m certainly no stranger to “over-sharing” on Facebook. It’s a lesser pain with temporary satisfaction. It never truly bears all.

I began an online Bible Study yesterday based on Lysa Terkeurst’s newest book, “It’s Not Supposed to be This Way.” Y’all. I sobbed. Because it’s not. It’s not supposed to be this way.

I shouldn’t have to see Austin struggle in school… in only second grade. He shouldn’t have to worry about bullies or finding a friend that accepts him for who he is (harder than you think). He shouldn’t have to worry about how he lacks in athletics. That he’s not “good enough” to play with the cool kids. I shouldn’t have to see the pain on his face which he so intently tries to hide through his emotions. He shouldn’t have to worry when he knows Mommy AND Daddy are going to an appointment with Everett. There shouldn’t be fear in his eyes when he sees a bowl in Everett’s bed, indicating that it was another migraine night for E, if not worse.

It’s not supposed to be this way.

And, Everett. Oh, sweet, precious Everett. It is not supposed to be this way for you. So many surgeries. So many struggles. So many unanswered questions. No relief. I struggle day in and day out searching for answers. But, no one can give me any. No one can relieve the frequent migraines. No one can solve the everlasting reflux. No one can fix the chronic sinus issues. No one can explain the random rare bone disorder in his feet. No one can answer all the questions, or make sense of it all. Or, any of it. I hold my breath before every cardiology appointment because I know it’s coming. I know the next surgery will come. I worry about the awfully low heart rate at night, and wonder how it affects him. He shouldn’t have to struggle through kindergarten. Reading, letters, rhyming. Why already are there bright red flags for dyslexia and learning disorders? Why can’t anything be easy?

It’s not supposed to be this way.

As we drove to one of Everett’s appointments last week, the questions spewed. “Why do I have so many appointments, Momma? Why do I have to feel bad so much? Why do my feet have to hurt? Why do I have to miss school? Why do I keep getting migraines?”

It’s not supposed to be this way.

But, what if it is? As crazy and radical and ridiculous as it seems, what if it is? Lysa writes, “What if disappointment is really the exact appointment your soul needs to radically encounter God?… God doesn’t expect us to handle this. He wants us to hand this over to him.”

Yes. Exactly. But, isn’t that a lot easier said than done?

I don’t want pain. Especially for my children. I mean, look at my child the wrong way, and I’m ready to eat you alive. Leave my children out of it. But, they are not only mine to love.

This year might be my greatest resolution yet. It’s my year for Faith. Faith in His plan. Faith in His promise. Certainly, there has always been faith, but I must honestly admit, it’s never been complete. It’s hard to give it all, even in the most dire of circumstances. But, something has to change. I want to trust in His plan without expectations. I want to see how our struggles and the dust filling our life are made brand new.

I will trust why it’s supposed to be this way.

We have made it an entire year and a half with no surgeries. What a blessing that is. But, we now find ourselves here at another surgery. I’m thankful it is not another heart surgery, but this abdominal surgery comes with many challenges. It’s hard for me to have this conversation. I tend to shut down a bit, so I’m going to do the best I can to keep the blog updated with information. And, maybe, just maybe, I’ll start sharing our adventures once again 🙂 For now, this is where we are at with Everett.

When E was born, along with his heart defect, he had an intestinal malrotation. Here is a little information on malrotation since most people are confused on what this means:

“The small and large intestines are the longest part of the digestive system. If stretched out to their full length, they would measure more than 20 feet long by adulthood, but because they’re folded up, they fit into the relatively small space inside the abdomen.

Malrotation occurs when the intestines don’t position themselves normally during fetal development and aren’t attached inside properly as a result. The exact reason this occurs is unknown.

When a fetus develops in the womb, the intestines start out as a small, straight tube between the stomach and the rectum. As this tube develops into separate organs, the intestines move into the umbilical cord, which supplies nutrients to the developing embryo. Near the end of the first trimester of pregnancy, the intestines move from the umbilical cord into the abdomen. When they don’t properly turn after moving into the abdomen, malrotation occurs.”

Anyway, E had surgery to repair his malrotation at 6 weeks old. This is called the Ladd’s Procedure. About a year and a half later, after E’s second heart surgery, E ended up in emergency surgery for a bowel obstruction, caused by one of the bands from his initial procedure.

Over the last couple years, we have struggled with E vomiting and having periodic intense abdominal pain. It has been a long process with no relief. From the pediatrician to the gastroenterologist to ENT to neurology to an allergist. If anyone needs a specialist recommendation, we have probably seen one. E has undergone countless procedures in this time to find an answer for his pain and vomiting – X-rays, upper GI series, an upper endoscopy, lab work, sleep studies, an MRI, an EEG, and a number of medications for reflux and migraines.

Through it all, he was diagnosed with Abdominal Migraines or Cyclic Vomiting. This is a variant of traditional migraines. We accepted this diagnosis and began working toward relief for him. At this time, E was suffering from weekly episodes. For months, we worked with the neurologist trying to find the right combination of medications for E. And, for months, it all failed. We decided it was time to remove him from the meds and see if things were worse. They were not, and they still weren’t better. Exhausted and frustrated for our little guy, we took a break from specialists and helped him through each episode with extra comfort and anti-nausea medication.

A couple weeks ago, E had another episode, but along with it, he was in such pain that he was rolling on the floor screaming and crying. This is the type of pain we saw with his bowel obstruction, as well as his other intense episodes. It was time to see GI again.

E’s surgery will be on February 24. The idea is that E is having intermittent obstructions caused by one of the bands from his initial Ladd’s procedure, since we know they have caused a problem in the past. He may still be having occasional migraines, as well, but this could be causing the bulk of his problems. The plan is for a laparoscopic procedure, and, hopefully, the surgeon will find a problem area that can be fixed. If laparoscopic is unsuccessful, the surgeon is prepared to go in through his old incision, if needed, but we pray that is not necessary.

Because he is on Coumadin for his heart valve, it complicates things and produces extra anxiety for us. But, everyone is in agreement that it is better to handle this in a planned, controlled environment instead of waiting for an emergency situation with another full-blown bowel obstruction.

At the end of this week, we will begin bridging from Coumadin to twice-a-day Lovenox injections. He will most likely be on Lovenox afterward, as well. My heart just aches for him. E is such a trooper through it all, but there are two things he hates more than anything – lab draws and shots. And, I’ve heard Lovenox injections are awful. So, the plan is bribery. We are going to put together the mother of all prize boxes to get him through each injection. This may be more expensive than Christmas. Ha.

I also need some extra prayers to be able to give him these shots. Pricking his finger once a week to check his INR is tough enough on this momma. I don’t want to be the reason my baby cries.

Please keep Everett and all of our family in your prayers. This is hard on everyone, but we try our best to keep smiling and not let this life knock us down.

Photo Credit: Kerri Dickey Photography

Every day, I look at our Everett and think of him as just another ordinary little boy. Because he is. He loves cars and trucks and everything that “Vrooms.” He shows no fear, and often leaps from furniture, always with a “legitimate” excuse. Mud is his best friend. He lives for the outdoors. And, not a day passes that a super hero of some form or fashion doesn’t fly through the house, looking suspiciously like our E.

Then, there are days when it ambushes me. Austin had his first soccer practice tonight. He was ecstatic. And, Everett was just as excited as Austin. He marveled at the brightly colored ball and relished in his turn kicking it through the house. When Philip left with Austin for practice, Everett approached me. He wrapped his arms around me, threw his head back and looked up with those beautiful brown eyes. “When do I get to play on a soccer team?” he asked, grinning from ear to ear.

My heart sank. I studied his sweet face. He still had the stubborn remnants of the tape from a sleep study two nights prior. Another reminder that things weren’t exactly normal, try as we might. The look of anticipation and hope on his innocent face took my breath. Never, I thought. Along with so many others. How many times will I hear this plea over the years? How much harder will it get?

So often, I utter the words, “I hate Coumadin.” It’s finicky. It’s unpredictable. It’s frustrating. It steals away parts of my son’s childhood. It scares his momma with its highs and lows, and what if’s. It means weekly, sometimes more, finger pricks and an occasional lab. It means anxiety over simple procedures. It’s scrutiny over the bruises. Scrutiny over the blood. And, when it feels like too much, I stop and try to catch my breath.

I breathe and remember. Remember what else it is. The most important thing it is. It’s life-changing. Life-saving. It enables him to have that mechanical mitral valve, clicking away so consistently, so peacefully in his perfect little heart. It enables him to have life, a good life, even when it might not be as I had ever envisioned.

As he stares up at me, awaiting my reply, I smile gently down at him. I assure him we will find something amazing for him to do instead. That we will find something special just for him. And, tonight, that was enough. He squeezed me tight and scampered off jabbering about monsters and Jedis. Day by day. One day at a time.