A New Sense of Normal

Like many people, I had heard of the Ronald McDonald House but never really considered what it actually did. That all changed after my daughter’s accident in 2013, when the House in Chapel Hill opened its doors to my family. I could have never foreseen the positive impact that it would have in my life, but now I couldn’t imagine getting through this time without it. My husband Steven and our three children, Joshua, Adah and Abigail all hold this House in a special place in our hearts.

March 12, 2013 was the day that our lives changed forever. My husband was at work and I was getting the kids ready for bed when the accident happened. Our daughter Adah was only 13 months old when she pulled an old box-style television set over on top of herself. I saw it happen from six feet away, but I wasn’t fast enough to save her. She went limp, stopped breathing and turned blue. I never thought I’d have to do CPR on someone, let alone on my own child. She responded to my emergency CPR, but clearly wasn’t okay. She was struggling for her life and had some post-traumatic seizure activity. It was the single most horrifying experience of my life.

My older son Joshua was there, too, and he kept asking what was happening, was Adah okay? I told him that she was hurt but I’d called the ambulance and she would be fine. I really thought I was lying. I thought she was dead. I thank God everyday that I was wrong.

Adah ended up being taken to the hospital in Asheville by helicopter. The chaos of the next few days seemed to drag on forever. All anyone could say was “We’ll know more tomorrow.” “We’ll know more in a few days.” We had a chaplain with us much of the time, which was comforting but also drove home how serious her condition was. She suffered serious injuries to her brain, heart and lungs.

One of the worst moments was early the next morning, when her respiratory condition deteriorated to the point of requiring intubation. She remained sedated for a week while we tried to wrap our heads around what had happened and what our “new normal” would look like. Sometimes, I felt hopeless, and the guilt from the accident was overwhelming.

We spent the next four weeks at Mission Hospital in Asheville, the nearest hospital with the capacity to care for her. Luckily Joshua was able to stay with his grandparents and maintain some semblance of normalcy.

Adah’s heart and lungs healed quickly, but we are still dealing with the effects of the traumatic brain injury (TBI). She is cognitively and developmentally normal, but the TBI affected her ability to swallow and she required a g-tube, which is a feeding tube through the wall of the abdomen and into the stomach. She also has central (TBI-related) sleep apnea.

Adah has had two MRIs, two bronchoscopies, five swallow studies, and three sleep studies so far, in addition to the surgery to place the g-tube. We eventually transferred her follow-up care from her doctors in Asheville to the Airway Center at UNC, as they are more specialized and we felt they would be better able to help us deal with her sleep apnea, specifically. Chapel Hill is a four-hour drive from our home, so we didn’t know how we would juggle all of Adah’s appointments. When the coordinator at the Airway Center told us about the Ronald McDonald House of Chapel Hill, it was like a weight had been lifted off of our shoulders.

Like many people, I had heard of the Ronald McDonald House, but didn’t really know what it did. I never thought that my family would need to use it and I could never have foreseen the impact it’s made on our lives. During Adah’s recovery process we found out that we were pregnant and were blessed with another daughter, Abigail. Life with a growing family is hectic enough without a medical crisis; I don’t think we would have been able to juggle everything without RMH.

We received our first referral to stay at the Ronald McDonald House when the doctors were planning to monitor Adah’s sleep and run tests for several days. With a baby in tow, we knew we’d need a “home base” away from the hospital. Our first night at the House, we arrived exhausted. The drive to Chapel Hill took three hours longer than expected, so when we finally arrived, no place ever looked so inviting! There was such a welcoming atmosphere and everyone was so kind, it immediately put us at ease.

For a while, our lives revolved around tube feedings and breathing treatments and appointments with doctors and physical therapists. For the first five months following her accident, Adah was not able to take any food or drink at all by mouth. She has improved dramatically with time, and quickly progressed to being able to drink thickened liquids and eat an almost-typical toddler diet, minus a few hard-to-swallow textures. As of our last trip to Chapel Hill, Adah has been cleared to drink even thin liquids–our last hurdle–as long as she uses a sippy cup to keep the flow slow. She tried chocolate milk for the first time in the RMH dining room!

It’s funny, because Adah is so normal in so many ways, and sometimes we even forget, for a moment, that she has had these struggles. Everyone who meets her is surprised to hear that she has physical challenges. We have come so far in the 18 months since the accident, we know that Adah can only improve from here!