One Week at Camp
Today we picked our gal up from camp. She slept over for almost an entire week. We never thought sleep away camp was possible. It’s a wonderful special needs camp with amazing staff, stunning opportunities for independence, and freedom to relish every moment of summer in the woods and near the water. Experiences I certainly took for granted when I was a young camper, long before our introduction to rare diseases and epilepsy.
This camp has bunks, bugs, races, and fresh air. Everything camp should be and modified for kids who get around differently. The campers are remarkable, the medical staff and counselors are exceptional. We trust this team of people beyond measure.
I share this week’s experience because people who aren’t in the trenches might forget what a heavy, collective effort it takes to ensure the special needs community experiences one week like our kiddo did; a week of camp… Well, in our case six days, but we’ll call it a week.
On day three of seven Susannah had a cluster of seizures, one lasting seven minutes. I received a call and the ambulance was en route to the ER with our daughter bumping around inside. I met them there. This is a familiar event for us — it happens. We were just praying it wouldn’t happen during her one week at camp. A full week which she has been looking forward to all year and talking about for months, possibly the highlight of her year. When that phone rang I knew exactly what was on the other end, and we were heartbroken. Heartbroken because Susannah would likely be sent home and robbed of her full week — a week she was so proud to tackle, and the first time she was away from home. Ever.
Because of an army of people her heart didn’t break that day in the ER, neither did her bones as they sometimes do.
She was able to go back to camp the next day. She went back to camp holding her head high and smiling because of the rare community we are blessed to have: passionate physicians, scientists, supportive friends, family, and everlasting advocacy. We are forever grateful for her week at camp, and for the army which made it happen.
Many might not truly know what it takes to give a child like Susannah the bliss and pride that comes along with finishing a week of camp; to accomplish a mission despite myriad unfair medical mountains she climbs every day of here life. So I thought I would try to articulate that support system which often goes unrecognized.
Our girl was devastated and crying when I sprinted into the ER. Not devastated by seizures, those passed an hour ago with rescue meds, oxygen, and hugs (none bigger than the bear hug I wrapped her in). She was crying because, in her heart, Susannah knew this awful epilepsy might rob her of even another piece of life: camp. She knew, after this trip to the ER, she would likely be unable to finish her week of camp. One week. She was on a mission. She never let go of hope for that one week. She’s tough as nails, but that week was disappearing in front of her postictal, tear-filled eyes.
Susannah’s week was saved by an army.
You might not know, but this army is as rare as our monogenetic disease. We should all know who they are. Our family, and so many others are epically thankful for this army. These passionate fighters with huge hearts make up an army which didn’t stop marching until our little girl experienced the utter joy every kid has the right to feel: a week of summer camp. Just one week. “Oh please let her feel that accomplishment” played on repeat in my head.
One full week. Here is a list of the relentlessly rare soldiers who worked to give Susannah that feeling; the pride of one week.
Her camp nurses: These compassionate nurses — the saints who rode in the ambulance with her, soothed her when she didn’t have the normal crew of mom and dad co-piloting, and who reassured Susannah without a doubt that she was surrounded by love and protection. One nurse (who Suzy jokingly nicknamed “funny chicken”) called me from the ambulance stayed with me until I was double parked in front of the ER. These nurses didn’t go anywhere until Susannah’s tears became smiles and celebrations. I was prepared to take my heartbroken daughter home without her sacred experience of one week at camp. Without the pride of independence she looked forward to all year — without the week she would hold in her heart forever.
Her amazing physician, Dr. Bain: It was a weekend. We were hours away from home and the familiar walls of our New York City hospital. Suzy’s neurologist (who is truly extended family to us) spent precious time speaking with the camp nurse, methodically going over details of Susannah’s seizure. How long? What exactly was her body doing? What are the similarities between this event and past events? What could have been a trigger? A long distance neurological deep-dive. Susannah’s champion-physician spoke with ER doctors and staff to care for us thorough evaluations, examinations, and scans. She spoke with more nurses, camp administration, us (parents), her colleagues at home, and I’m sure many others. We put the phone next to Susannah’s ear so Dr. Bain could hear that relieving giggle. This incredible doctor spent weekend hours away from her family to make a thorough and informed recommendation with Susannah’s safety and care paramount. A recommendation which fully considered her health and her happiness. A recommendation which gave Susannah the freedom every kid deserves to have in the summertime: camp.
First responders: The EMTs who responded to camp’s 911 call and brought her to the ER didn’t leave until those tears were gone. Then all of a sudden they disappeared. Duty called. A fleeting “Stay safe out there” and they were off to save lives.
Camp administration: They could have said no but they said yes. The dialogue and teamwork between camp administration, camp nurses, ER nurses, ER doctors, and a final decision by Susannah’s doctor empowered them to say what each so desperately wanted to scream out loud: “yes Susannah can return!” 24 hours at home with dad and she could go right back to her bunk in the woods. She could finish out her week of flags, talent shows, new friends, the ever-present smell of sunscreen and those delicious chicken nuggets that every adult remembers from camp dining halls.
Family and friends: My wife and son were in another state. They traveled to see family and celebrate our aunt’s birthday. I stayed back, close to camp for the week. Susannah’s mom and brother are two of the three most remarkable humans I know. With equal measure of love, fear, and tears, they were hurting. They needed support. We are lucky to have strong, loving family and friends. Support which results in an enigmatic sense that everything will be ok. And it was. I recognize not everybody has that, and I’m extremely thankful.
Advocates: After I dropped Susannah off from her 24 hour furlough I took a breath. I was overwhelmed. Connecting with advocates (even a short email) who I know and love put me back on track. Never underestimate the power of advocacy. Advocates know what to say and when to say it. Advocates and friends know when to check in. We are fortunate to have fierce advocates and loyal friends on speed dial. Nothing is more important than community. We are extremely thankful for ours; a community which grows stronger with every newly diagnosed family.
Neighbors: Among other things, I’m a firefighter in our hometown. In our particular neighborhood, most houses are filled with families of firefighters, police officers, and other first responders. Never underestimate the safety of coming home to neighbors who always answer the call.
People who create medicine and the gift of hope: Susannah’s life is different today because of the n-Lorem Foundation. This is a team of empathic, compassionate scientists and friends who make medicine for children who would otherwise be left behind; rare children like our daughter. Susannah benefits from a personalized, experimental treatment developed by n-Lorem and the countless collaborators who work to make this medicine and every milliliter of hope that accompanies each dose. We are blessed and our gratitude is immense. This treatment is hope for the future of many. In the past Susannah never would have this week at camp. The devastation, isolation, and hopelessness we felt before treatment was catastrophic. Life is still a tricky journey through rare and uncharted waters of her brutal disease, but the trajectory of KIF1A and an uncertain future has changed. Before this treatment Susannah’s day would end around 1:00pm. She would shut down, too tired to move, let alone finish a day of school. She hit a wall of fatigue and disappeared into her world of pain, silence and epilepsy. Now she has fuel in her ten-year-old tank, participates in conversation, and blows bubbles. She has the strength to joyfully complete a full day of camp. A week of camp. Because of exquisite science and generous teams, Susannah can eat those chicken nuggets without severe tremors in her hands and an adult to feed her. Today our daughter can describe a sunset in her own way. She makes it through days and watches the colors of summer suns as they fall asleep. She’s losing her vision, but she sees the sunset with friends by her side at camp.
Susannah: Nobody, not even I, can describe the strength, determination, grit, and everlasting love inside her heart… So I won’t even try.
Today we picked Susannah up from her last day of camp. She made it through one week. She accomplished her mission.
Susannah teaches me profound lessons every minute of every day. Today she reminded me to relish every moment. She reminded me to think one week at a time and that anything is possible. Many might not realize the army it takes; the number of people we rely on to make life beautiful for our kids, and beautiful can mean many different things. For Susannah beautiful meant one week of camp this summer.
The list above, in no particular order, accounts for approximately one-hundred people. It took at least one-hundred people to make sure Susannah won a battle. One-hundred people to turn tears into magic smiles with jokes in her eyes. It took an army to give Susannah one week of camp.
We’re so thankful.
