Fight, Flight... and Life.

We came home to the alcohol wipe wrapper still on the counter where I threw it 36 hours before and after I carefully drew just the right amount of medicine, bled the needle of air, and swabbed Owen's thigh, pinched his skin and plunged his rescue medicine into his limp body. That wrapper laying on the counter was a nauseating reminder of how close we were to the darkest place. That little white foil wrapper lay on the counter like a surrender flag. It's our final option. Inject-able steroids are the only substance on Earth that can bring him back to us when oral medications fail to stay down. It's all the fight we have to give when he has none left.

Ashton woke us up at 4:30am to tell us Owen was sick, he heard him gagging. We were skeptical that big brother was just telling us a tall tale. There were no signs Owen was sick the night before. We had a great dinner for Father’s Day- Owen ate his own dinner and part of mine, the kids were being silly and playing until almost 9pm. Nothing seemed off.  We heeded Ashton’s warning and went to check on Owen -and it was clear he wasn’t feeling well, his skin was cool and clammy. Owen wobbly walked up the stairs with me, I gave him additional oral medication, a warming rice pack, a blanket and we slept together for a few minutes on the couch and then he vomited up the medication. We cleaned him up in a warm bath and he was visibly declining by the minute- now unable to walk on his own or respond to simple questions. We gave him his emergency inject-able steroid and simultaneously called the ER to let them know we were on the way. Shelby loaded Owen into my truck. Like clockwork we entered 'Go Mode'.... There's no time for tears, no time to panic, no time to make plans, only time to act. No time to call an ambulance for Owen. In these situations an ambulance isn’t the most efficient choice- as Emergency Services don’t carry injectable steroids and getting him to the hospital as quickly as possible is priority. We don’t need to confirm tanking vital signs with EMT's who don't have the resources on board to rescue him and we don't have time to wait for a round trip to town. Shelby buckled Owen in his seat and a nanosecond we exchanged a quick "I love you" and I left with Owen on the way to the ER. We didn't need to talk about it, we’ve been here before, we know the plan. But, we knew this was worse than the other times. I drove and Shelby stayed back to make arrangements for the older kids who had not yet got out of bed.

I drove to the ER with one eye fixed on the road and the other in the rear view mirror watching for any sign of recovery. I shouted at Owen over and over again, letting him know he is going to the hospital and he needs to fight. I ask him to stay with me and let him know we still need him here. He didn't respond and his body hung limp on his seat belt.

I parked in front of the ER door, pulled Owen's body out of the truck and carried him to the door. I knocked on the door with my foot, because Owen is getting too big for me to easily carry. As soon as we get in the door we lay him on the ER bed and it's obvious how bad off he was.  His body was cold to the touch, his skin was a splotchy shade of purple next to the stark white sheet, and his breathing was shallow and rapid. Without emotion I quickly recount every second of the past hour with the ER staff to let them know how we found him, the rapid deterioration from him being semi-alert & able to stumble-walk to unconscious, what oral medications we tried, what dosages, what his temperature was, how many milligrams of steroid we injected him with, every detail of his health & observed condition in minutes, hours, and days prior. every. detail.

The ER staff begins protocol- blood pressure (dangerously low), pulse (dangerously high), blood sugar (stable)… they start fishing for a vein because he is a hard poke on a good day and finding a vein is more complicated when he is crashing….. more checks, more medication, more fluids, only marginal improvements, and then we flew out.

I got on the little plane like I was boarding a school bus. I was too numb to be scared of flying at hundreds of miles per hour in a little plane. The flight crew searched for a vein with an ultrasound machine. They carried another inject-able steroid- ready to be given at the first sign of further decline. In under 30 minutes we land in Rochester and took an ambulance to the hospital. Owen is starting to respond to questions a little bit. He is transferred to the PICU and I recount everything that happened up to that point to the doctors there. About an hour later Owen, groggy like a bear in the spring, made a joke. The nurse was helping him with his underpants. The nurse said, “let me help you with your pants.” Owen giggled and loudly told him, “I don’t have any pants on!”

Just six words from Owen, but I knew he was going to be just fine. Like his mom and dad, he has a sense of humor that knows no situational boundaries.…and just like that, recovery began. A common stomach bug (gastroenteritis) struck overnight depleted his daily medicated cortisol reserves and his body had nothing left to fight with and started to shut down. It wasn’t until we treated him with well over triple his normal dose did he start to come around. …and no. We can’t treat at higher levels every day to cover for the potential for illness- high level long term steroid use has horrible side effects, too. It’s a tightrope.

This week the whole story and every scene has been on auto loop in my head- a never ending string of thoughts at all hours of the day and night. Every now and then an old-rerun of his past crisis moments sneak in to the sequence. Then I analyze the differences, the similarities, and try to strategies a more successful path for the next one. Part of writing and recounting this event is to get it written down so I don't have to remember the agonizing details anymore, so I can forget and find it later when I'll need it.

Someday the next crash will come, but we won’t let Owen live in a bubble and all kids will get belly aches and sick bugs. We are committed to living each day we’re given.  For each one of us, born healthy or not- we have to realize every day is borrowed time and we don't know what random tragedy is in store for us tomorrow. Through science Owen is gifted life and we are gifted with knowing his sweet soul. Owen could live to be a healthy old man or he could be taken down by a simple stomach bug before he makes it to high school. Adrenal insufficiency is truly the Achilles heel of our fighter.  We wonder if the next crash will be worse? What if Ashton hadn’t heard Owen gagging and gasping. What if he hadn’t woke us up to alert us? What if something happens to Shelby or me.. who will take care of our children? How do you live without spending every moment managing the risk? How do I make my eyelid stop twitching- lol!

We all have a limited time to make the most of this life. Life can't be lived by managing every moment and reliving the trauma of our past. So, how do we do it? How do we move forward? We just do and life just does. Life goes back to normal and everything that happened Monday already feels like it was another lifetime ago. It’s weird. We go back to our regular life, because we refuse to be paralyzed by fear. Because adventure is out there and life is too short to shut ourselves in from the world. We take time to reflect, take a few Tylenol for the headaches & sore muscles from sleeping on hospital benches, and take away the pieces of the experience we can learn from. But we try not to look back too long, because that’s where the pain lives.  It’s almost like we live our life in an alternate universe- mixed with equal parts of joy, pain, hope, and an unwavering faith that despite all the odds- we will survive every storm. This time was close, we almost lost Owen…But, I can tell you with every fiber of my being there wasn’t a moment in that ER that I thought we would. I knew it was going to be ugly and we were dangling dangerously close to the edge, but he is so strong and stubborn and we are too. We know he will fight as hard as he can and we will fight when he can’t. Because when it’s time, we will go out of this world living- not dying. We could spend days dwelling on how close we danced to the line this time, but we won’t. We pack those thoughts up and pitch them to the curb, they're not worth more than a few days of brain space. We’re going to keep dancing everyday and just have faith and hope that this dance, that this adventure- lasts forever.

Taking Back Time: Our Bucket List Summer

Every spring for the last 8 years we have worked with many of the boys medical service providers to schedule occupational therapy, physical therapy, speech therapy, and as many of the routine and yearly specialists visits during the summer break. We have done this to ensure continuity of care, avoid excess missed school, and prevent regression of skills gained through a consistent therapy schedule. During the summers we have had the opportunity to use new and different equipment and tools to help Ashton and Owen make greater gains toward their goals. We have re-arranged work schedules, juggled child care, made hundreds of trips back and forth to appointments, and invested hundreds of hours creating fun/productive therapy sessions to achieve skills- and we've made progress! The proof is in the pudding and we have seen with our own eyes the difference the time we have dedicated to them has made, but time is a tricky friend. We exchange our time to improve their quality of life. We gain life skills, smoother walking patterns, a more sturdy gait, more clearly articulated language, more fine motor control, greater control over their emotions, and gains toward more 'normal' lives. But, no matter how much time we give- we don't get time back and we haven't yet figured out how to get more hours of of a day. It's just not how time works. Time is the most precious commodity of our earthly being.

Over the last year the dial has been turned up on the number of appointments the boys require to keep their health in good shape and as we look ahead to summer 2019- we know it will likely be a challenging one, as Owen is on schedule to have his palate reconstruction/bone graft surgery then. We will need to commit a lot of extra time to preparing for the surgery and for the many followups and cares he will need after the surgery.  I know we can't turn back time, but this summer we're going to take some of it back... This summer Shelby and I have made a conscious decision to forgo all summer outpatient services for our boys. We're taking a break and we're taking back our time.

As parents of three (two with complex medical needs) we've become increasingly aware that somewhere in the midst of our demanding schedule our kids have started to grow up. This fall Ashton will be beginning his second year at the middle school, Kiera will be in 4th grade, and Owen will be in 3rd grade. Time is flying by and we need it to slow down. We need time to be a family, so we are clearing the schedules of some of the extra effort and we're committed to adding in more family fun.

I'd be lying if I said I was all 'cool' with this... I feel anxious, guilty, and excited. I feel like I'm letting down all of the special people that work so hard to help our kids achieve their goals- I hope they can understand why such an involved family is taking time off.  I feel personally guilty for squandering our time to live in the now and not actively working toward the bigger picture of achieving their goals- what if taking time off results in Ashton having a sloppier gait pattern in the fall? What if Owen doesn't practice saying S as much as he should?! I am full of guilt over those things, but the prospect of just being a family has me filled with enough excitement to counterbalance all of the guilt. I am excited to have three children who are mostly independent, who can articulate their needs, and who still have enough wonder and awe to be amazed by the kitchy-quick-stop-tourist-traps... I am excited to have three kids who love each other (most of the time) and still enjoy playing together and doing kid stuff. I am excited to feel like we can go and enjoy new places and family activities without it being 1000% stressful or feeling hurried/rushed to have a good time. We still have some appointments and specialists we HAVE to see this summer, but we aren't adding more.  When we do have to travel to appointments, we are making plans to not make the day about the appointment- it's going to be about the activity we are doing that just happens to be in the same area.  THIS summer we are taking full advantage of the spark of childhood our kids still carry and filling our buckets with memories.  We have our summer bucket list all planned out, printed out, hung on the fridge... ready, set, go make memories!