Before I sat down to look at the calendar last Sunday evening, I didn’t need to remind myself that we would have an incredibly full week ahead. I already knew we would. Besides the kids’ usual events and Ronan’s scheduled weekly therapies, I had my own appointments to get to starting first thing Monday morning. Knowing I couldn’t be in two places at once, my husband offered to take the morning off. Having just come home late Sunday night from being gone for 10 days on two back-to-back work trips, I welcomed the break he’d provide by getting the kids up and ready for school. I’m never up before 6am, but I was actually grateful for the few minutes of peace and quiet I got before walking out the door.
I had other places to run to after my early-morning appointment was done, so I continued on. Thanks to having that alone time, I got some Christmas shopping finished. People often ask me how I take care of everything plus myself with all that we have going on. I don’t have a perfect answer, but tell them that somehow, usually with the grace of God, things get done. I wouldn’t realize just how much I really do until a few hours later.
Midday, I received a phone call from one of Ronan’s caregivers. She never calls. Ever. We do all of our communication via text. Seeing her number flash across my screen made me think something was wrong.
Something was terribly wrong.
Ronan was at one of his therapy sessions when he began to have a problem which sounded like it might require medical attention. I was still out and couldn’t get to him quickly. But my husband could. Instead of just taking the morning off, he’d been able to take the whole day off. With him closer to Ronan than I, he met up with Ronan and his caregiver. I’m glad he could do that because things would soon go from bad to worse.
I couldn’t get to Ronan when that happened, so I met him and my husband at the ER. The team of nurses and doctors were quick to help alleviate one of the problems, but we all agreed that with all of Ronan’s existing medical issues and complications, we were in the wrong place. Ronan would need to be elsewhere with a team of pediatric specialists who could evaluate and treat him. Not wanting to waste any more time, an immediate Emergency Room-to-Emergency Room transfer was ordered.
I didn’t know it at the time, but my husband had snapped a photo, too. There’s me following the ambulance Monday night.
Our other children were home from school by then. They’d gotten dinner for themselves but needed other help while we were away. Ronan’s sister had just completed her first semester at college and could handle most of the care for the others. But each of the kids, including Fiona, would need comforting – they were just as worried about Ronan as we were. Before the transfer, I’d been keeping a small group of friends aware of the situation mainly to ask them to please pray for Ronan. The day before, I’d sent a goofy meme to them. It was such a silly message that made us all laugh. The new texts I was sending to these other moms were so much more serious in nature, so pray they did! They also, without hesitation, asked what else they could do for us. Not knowing yet that we’d be leaving the local hospital to go to a bigger hospital two hours away, I would soon lean on them for everything.
Once we arrived at the children’s hospital, we remained hopeful that whatever tests needed to be done could be done quickly. Exhausted and beyond worried, I did everything I could to give each new person we met in that ER a thorough recap of Ronan’s medical issues and care he receives. At one point, one of the new docs asked when did the current problem start. I told her a few hours ago, but I hadn’t realized it was now well past midnight. It had been such a long and stressful day, Monday had blurred into Tuesday.
Triage and the initial assessments were quick, but we would soon learn, because of the complications associated with Ronan’s existing medical issues, he would need to be admitted. And it wouldn’t just be an overnight stay. We were told to expect to be there a minimum of 48 hours. My mind raced. Two days! We hadn’t prepared to be gone more than a few hours when Ronan entered the first ER. With the need for several tests, which would have to be conducted under anesthesia, we knew that were not going back home any time soon. Even though late, I sent messages to those we were keeping informed: More prayers needed, and we will definitely need help this week.
While Ronan would soon be getting the medical help he needed, we got so much help ourselves. The nurses made sure we were okay, offered us food (we’d missed dinner), and gave us as much information as they had. Having that information helped me create a plan for the kids back home. I couldn’t be there for them or do the things I always do with them. Others could and wanted to, so after making sure someone could stay overnight with the kids and get them to school in the mornings, I worked on the next task. Someone would need to get them home in the afternoons after their activities. Fiona had grabbed dinner out for the kids the first night, but meals would be prepared and delivered by friends for the nights we would still be gone. Those who were far away kept praying and asked others to join them. Understanding that Fiona was ultimately in charge while we were away, friends and family specifically reached out to her to make sure she was doing okay. Thankfully, she was.
Knowing they were in good hand, I could worry less about my other children at home. They let us know that while they missed Ronan terribly, they told us that they were okay each time we could text, call and facetime with them. I could see their concern during those facetime calls, but they were only upbeat and their typical silly selves when they saw Ronan on the screen. He showed that he missed them and loved them by blowing kisses when he saw them smile at him. Nurses and medical techs who overheard the sibling antics gushed at the attention Ronan was getting, “You have such a nice family. Ronan’s a lucky kid.”
With their focus fully on Ronan, the team of compassionate caregivers and medical staff assigned to his care exceeded our expectations. I lost count of how many we’d encountered, but over the course of the two days he was admitted, at least 30 people personally evaluated, managed, and executed multiple tests and procedures for my son. That constant, direct care helped ease our minds. They collaborated and kept us informed of everything as things were happening throughout the stay. Best of all, they were able to determine what the major issue was that brought us to them, which meant that they could send us home with a treatment plan!
Upon our departure, we were complimented for how quickly my husband knew to get help, for how involved in our son’s case we were, for how much we knew about those other complicated conditions Ronan has, and for how pro-active we were when we spoke up about our concerns. Being able to speak up and join in on the many conversations the medical team helped the staff know how to approach Ronan. Familiar enough with patients with regressive non-verbal autism, they had thought about different tactics not just for Ronan but for themselves also. They recognized and worked through his disability to safely draw blood and to keep the IV in. They thought out how to prep Ronan for scary situations (like that IV placement and having to go under anesthesia) by explaining what was going to happen next and asking if he needed extra time before something was going to happen. They thanked us for sharing resources like using a countdown to give Ronan an idea of how long something yucky would last. They also thanked us for the simple qwerty-keyboard picture that Ronan uses for communication. In a complex world, sometimes it’s the simple things that bring people together.
The people we met during this emergency could not have more professional and—important to us—more open to hearing our story without a layer of “well, we’re the experts and know better.” They truly accepted that, as Ronan’s parents we knew him better than anyone else. In the midst of our worry, it was a comfort to hear them compliment Ronan who was very aware that something was wrong with him; who knew all these people wanted to work with him, to care for him, to make this very uncomfortable and scary place a safe place for him. Seeing him come in sad and scared, then watching him be able to leave, not just with a solid treatment plan but also with a sense of peace was a great gift for us.
And the cherry on the cake was hearing staff say, “He’s been the perfect patient; and you two have been the perfect parents.”
While we were there, we realized that despite the most unfortunate situations we’ve experienced with the vaccine injury, there are other families who have far fewer resources than we’ve been able to secure. Some children at the hospital didn’t have both parents at their beside like Ronan did. One young child didn’t have either parent present to help but would have to completely rely on the nursing and hospital staff post-op. As much as we’d gone through together in those 3 days that Ronan was admitted, other children and their families were going through worse.
Right after the nurse team thanked us for being the perfect parents, we immediately thanked the staff we were blessed to have. I hadn’t planned on meeting any of them, but the staff there, as well as our wonderful friends back home, made the hospital stay a success. It was very nice to meet the incredibly kind nurses, but we joked that we hoped to never have to see each other again.
I haven’t been able to catch up on everything I had planned to do when I walked out the door early Monday morning. I know I’ll have the chance to catch up with everything at some point, but today, I’m going to sit down with a cup of coffee and thank God that Ronan’s doing better. He’s still got a long road ahead, but he’s back to his happy self. It’ll take time for his new treatment plan to really kick in, so we’ll do what we have always done for Ronan – we’ll try, try again. And if things don’t work out, because sometimes that happens, we’ll try to help him once more.
Cathy Jameson is a Contributing Editor for Age of Autism.