In the spring of 2016, we learned something that rocked our family to the core. I want to write about it because it's a part of our story and I can already see the testimony that our buddy McClain will have after this chapter of his life.
For the past two soccer seasons that our kiddos were a part of, Travis and I noticed a difference in how McClain responds to physical activity. Sports wise, Lucy Mills is fast, competitive, and doesn't quit. McClain seemed to lose steam easy, want take breaks, and even sit down on his knees during the games.
While it wasn't a huge alarm for us, it was an observation that I believe God opened our eyes to see. Perhaps sports just weren't McClain's thing? Travis and I went down the rabbit trails of possibilities...could he have low blood sugar? Early signs of diabetes? Exercise induced asthma? Or just a plain lack of interest in athletics? A trip to our pediatrician showed no signs for alarm. He gave McClain a clean bill of health, but said just to rule out anything lets make an appointment with a pediatric cardiologist. It would put our minds at ease.
The next few weeks went along like normal and McClain appeared to be a completely healthy, normal, active five year old boy. In fact the Monday of his cardiology appointment I felt silly even taking him in. After waiting hours at the office, and going through rounds of tests, including a 20 minute heart ultrasound where my wiggly boy couldn't move a muscle, I sat with both children in the cramped doctor's office waiting on what I was sure was absolutely no news.
When he finally did come in, the doctor looked me square in the eyes and said "well, we found something." My heart sank.
McClain was diagnosed with ARCA - Anomalous Right Coronary Artery. The cardiologist spent time explaining what in the world that meant but I heard nothing. Not a word. I remember my own heart pounding as the reality set in that my son had a complicated heart condition. I finally interrupted the doctor and kindly asked him to write the details down for me on the back of what was my grocery list. There was no way I could remember what he was telling me, but I would leave that office and call Travis. The kids and I gathered our things (they had been digging through my purse for gum and crayons and didn't comprehend the magnitude of what had just transpired) and headed through the hospital to make our way to the car. I remember Lucy Mills asking why my eyes were red as I fumbled to put my sunglasses on while inside the building still. I remember texting Travis pictures of what had originally been that day's grocery list. I remember crying to my mom on the phone that I could handle it when it was my daughter's eyes that needed surgery to fix, or the veins in her nose that required her to be put to sleep to correct. But this...my son having a heart condition that will require open heart surgery, and that could potentially be fatal, this was a valley I wasn't prepared to crawl through.
After a huge debacle with the insurance company (thank Obamacare) Travis, McClain and I headed to Duke Hospital to see a specialist in pediatric cardiology.
After CT's, MRI's, and a few other tests had been run, she confirmed what we had already been told. The question now was when will have the surgery to correct the coronary artery? And what do we do in the meantime?
The one perk of going to Duke for two days was getting to see these precious cousins.
The doctor called my cell phone as we were heading home after a very long and exhausting two days of appointments. She said that after the results of the MRI she would now recommend doing surgery sooner than later. I cried the whole way home. She said a team of doctors at Duke would be meeting in the next month to review McClain's file. Since this is a condition more typically found in teenagers and older individuals, the timing of when to do open heart surgery on children is split. Surgery can increase risks and introduce infection. A (very long) month later she called that their advice was to hold off on surgery for now, monitor his activity, and have a stress test performed. That felt like a short term victory.
In June we headed back to Duke for his stress test.
He handled it like a champ. The results were his heart could handle physical activity for now and he could live life just as he had been doing. Praise the Lord. McClain had already been self-limiting his activity and he seems to know when he is tired and needs a break.
And when you have a heart condition and are poked and prodded at every appointment, you mom and dad take you to the Lego store and let you pick out whatever you like.
The remainder of the year was such a blessing. Despite the reality that McClain will need surgery at some point, he has been able for now to do the things he loves.
My sweet group of friends rallied around our family and even met one night for a prayer time for McClain. They cried with me, encouraged me, and prayed over my family and me. In the midst of heartache, God pours out His blessings and we have seen that over and over again.
When McClain was first diagnosed I got used to a lot of sleepless nights. One night in particular I was awake and praying. "God, why? Why would you allow this to happen to my McClain? He is the (littlest) love of my life." I felt like the Lord of the universe spoke gently to my heart and said "Lil, I want to be the love of your life." I have been reminded again that these children are not mine, they are His. This reality has made me find more joy in our days together.
So here we are, one year later and thankful for the year that we have had.
In two weeks we go to MUSC for more testing to see what his heart looks like now.
This boy. His heart loves perfectly I know that.
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