For me there is a difference between feeling scared and having fear. And I don’t use the word afraid, because to me it is not the same. I don’t feel afraid, I have fear. Fear is a physical thing for me; it is a noun. That may not make sense to some of you, but for me, there is a true difference. The “scared and afraid” feelings go away with time; fear sits in my dark, deep thoughts, can raise its head without warning and stays with me. Fear sits on my chest making it hard to breathe. Fear can be paralyzing. I first met fear in Boston in the summer of 2018…
The first few months after his diagnosis were hard. Every day was different; some days were good, some not so good. He has lost 17 pounds. We focus on the type 1 diabetes; the other 2 diseases are being managed with pills. He wears a continuous glucose monitor that is inserted with a needle, into either the back of his arm or his abdomen, and stays on his body for 7-10 days at a time. This monitors his sugar levels and sounds alarms on our cell phones when he is out of the "good range". This alarm can go off at any time, multiple times, day or night. Beeping sounds if his blood sugar is too high, siren sounds if his blood sugars are too low. I can no longer turn off my phone at night. It is always by my side. At night, I run to his room to wake him, prick his fingers to test his blood and give him what his body needs (either sugar or insulin). Wait 15 minutes. Is he ok? Do I need to make another adjustment? Another 15 minutes to wait. Wait and see how his body reacts. Sleep comes and goes. During the day, the alarms sound and I watch to see if he has managed it on his own at school, or if he is struggling. If he stays high for too long, his body could produce ketones, which if not monitored will cause him to go into diabetic ketoacidosis, a fatal complication of diabetes. If he stays low for too long, he could pass out or experience seizures. We learn more and more, yet there are no patterns, no set regimen that seems to work to keep him in the "good range" on a consistent basis. Sometimes the insulin we give is too much, other times it is not enough. It doesn’t matter what he eats, or how much - every time food goes in, we have no idea how it will affect him. We try to take our best guess and then make adjustments along the way. It is frustrating, but also makes me think about how amazing our human body is! To think that those of us without diabetes get to eat whatever we want and our body makes all of these adjustments on its own - truly awesome.
He's tried to make the best of his new reality. He smiles and tries to be "normal" with his friends, but I know he is tired. And when his blood sugar is out of range, he doesn't think clearly. But he is trying; everyday he is trying. When he feels good he makes the best of that day; when he feels bad, he stays home and rests his body. He finishes his make-up work for the month of school that he missed and tells his classmates why he was beeping (continuous glucose monitor is both a blessing and a curse) and why he's now allowed to eat candy in class. He even went skiing for spring break; not as much as he would have liked, but he tried to ski everyday. We managed medications, watched his glucose levels and made adjustments. He took the ACT. I cannot think of college at this point. We are just trying to help him make it through to the end of junior year.
Word spread of his diagnosis through our family and friends. Food was dropped off and prayers were raised. My sister called from Chicago, "What can I do?" I said, "Find us a specialist. We need a second opinion,” and she did. Around the same time, my husband's aunt in Arizona called to say that a friend of hers had just visited the Joslin Diabetes Center in Boston and had an incredible meeting with doctors and learned a great deal about how to manage his type 1 diabetes. As chance would have it, one of the specialists my sister found works at Joslin. We get an appointment and book a family trip to Boston in July.
Boston. We try to do it all: the Duck Tour, Faneuil Hall Marketplace, Boston Common, Harvard, the Freedom Trail, Little Italy, and Chinatown. We smile, we laugh, we explore, and we eat. To anyone who saw us, we were a typical family enjoying a new city. But in the back of my mind, I am struggling. I cry each morning before they wake up. I hate that we are here. I cannot believe we have scheduled a family vacation around a doctor's appointment. Is this really happening?
The morning of the appointment, all five of us head to Joslin Diabetes Center. My other two sons are old enough to occupy themselves in the waiting room, while my husband and I join our son to meet the specialist. This is when it all starts getting real.
Have you ever had a moment when you lose your breath, and your heart is racing at the same time? Maybe you've been in a car accident? Or a near-miss accident? Maybe waiting for the results of a medical test? It's that moment when life appears to be in slow motion, but your adrenaline is at its max. As the doctor describes what has happened to my son's body, I am in that moment. I look to my husband. Silent tears are streaming down his face. I look at my son. He is stone-faced, and I want to tell the doctor to stop because I want to protect him, but I know at age 17 he needs to know what he is up against, what his life is going to be like.
We almost lost him. That is what the doctor in Boston tells us. No one told us that before. One of the hormones in his body was so dangerously high that his body wasn't producing enough saline and his organs should have shut down. He should have, could have, died. Air is gone from my lungs. Heart racing. Thankfully, his doctor in Tampa questioned and researched why his saline levels were so low and wouldn't hold steady. Thankfully, she asked for more blood work and ran more tests. Thankfully, when she got the results, she immediately called in a prescription and then called us. I won't forget that moment. I was sitting in a chair trying to relax (catnap), when she called. It was a Sunday and she was on her way to the orchestra with her husband. She said, "I've just called in a prescription and it is imperative that you go and get the medicine and give it to your son right away. Follow the directions, exactly as I have written them, and I will call you in the morning." Our son was in adrenal crisis at this time, but we didn't know. We did exactly what she told us, but we didn't know. He took 20 pills over the course of that night and he was admitted back into the hospital the next day. She saved his life.
While we are realizing all of this, the specialist is patiently and calmly teaching us. He notices our tears, offers tissues, and continues. He is drawing diagrams about the endocrine system and showing us how all three of the diseases are linked to each other. He tells us this combination is rare. Only 7,000 known cases in the U.S. Many people with Schmidt Syndrome have type 1 diabetes for a number of years, then usually the Hashimoto's disease is diagnosed in their 30's and a few years later the Addison's disease will be diagnosed. For our son, it happened all at once. The doctor has two other patients he is currently treating with the same syndrome: one is seven years old and the other is a non-verbal autistic boy. I pray for those parents.
At this point we have been with the specialist for two hours. My husband decided to leave and take our two patiently waiting sons to a chocolate store. My oldest son and I meet with more people. A nutritionist and a diabetic nurse that will be assigned to him. They take more blood. Another two hours pass. Our heads are spinning. He wasn't taking the medicine for the Addison's disease in the right way; it is a time-specific drug. It could be dangerous for him. It could be affecting his diabetes. We learn more and more.
Joslin Diabetes Center is the right place for him. This is where he needs to be. This is where he will get his medical care. We will visit every three months. As much as we appreciate all that the local doctor did for our son, she doesn't have any other patients with this syndrome. Nor do any of her partners. Every time we ask a question, she has to look up an answer. It's understandable. This is rare. But we need someone who knows what this is, who deals with it on a regular basis. The Joslin doctors will be on call for us, 24 hours a day, 7 days a week. There is an emergency protocol that has be followed exactly if he gets sick with the flu (or any virus) or if he breaks a bone. We need their support and their resources. Our son has made a good connection with this young male specialist. He wants him to be his doctor. Of course, we say. That makes sense, we say... we live in Florida. How in the hell are we going to make this work?
Back at the hotel room, our oldest son lays down on a bed and starts to fall asleep. This has been the most overwhelming day, for all of us. We haven't told the younger boys what we've learned yet; we need to process. We all need to rest.
My husband and I cannot look at each other for long. We've been friends since our freshman year of college. We can read each other with a look. If we look at each other too long, tears flow. We cannot do that now. We have to keep smiling. We have to reassure our son.
Later that afternoon we walked to the Boston Public Garden, a beautiful park in the city. Every time one of the boys is near me, I touch them. Squeeze a shoulder, tousle hair, grab an arm to hold. I need the reassurance of them. Our oldest son is smiling. He just heard that morning that he almost died, yet he is smiling, and laughing, and making jokes. They start throwing a frisbee. This is what they do. We travel with our own frisbee and take advantage of any open space wherever we are. As I sat in the grass and watched our sons, my husband leans over and says, "We will make this work." Then he pops up and grabs the frisbee flying in front of my youngest. This is what he does. He plays, and laughs, and makes jokes. Find the good. Live this adventure.
And as I sit there, I know we will be ok. We have to be. But my head is swirling. I have done more research since his initial diagnosis. I know that 25% of those diagnosed with one autoimmune disease, will likely get another. Once you have two, the likelihood of getting another autoimmune disease increases. What happens when you have three? Well, I haven't found a direct answer on that one. I guess it's too rare? But I see the blood work they request and I look at the results. I know the doctors have been watching.
I truly believe that there is only so much worry and fear the human body can handle in a short amount of time. I know that if I am going to hold myself together for the rest of this trip, I need to let go of that worry for right now. Let the doctors watch and trust their guidance. Pray for strength. Ignore the fear. For right now, I need to enjoy this moment. I take a deep breath. The sun is shining on our faces, as all four of my boys are throwing a frisbee in the beautiful Boston Public Garden. I love hearing them tease and laugh. For now, just enjoy.
My mind wanders a bit as I watch them. Years ago, about a year after our youngest son was born, I wanted to have another child. My pregnancies and births were not easy, so my husband wasn't as eager. Every few months, I would say, "Come on, let's try for a girl", and he would smile and respond, "We are holding at three." It became our joke. As the years, passed, I would ask, but always the same response, "holding at three!" Then when my youngest turned 7, the tables turned. He started to ask and my response was "holding at three!" The boys were 12, 10, and 7. I was moving on and did not want to go back to the baby stages!
The frisbee flies over my head and I snap out of my daydream. What was that about, anyway? My oldest is about to turn 18, the middle is 16, and the "baby" just turned 13. We are moving into a new phase of life: the high school and college years are ahead of us. I am the executive director of a non-profit and my husband owns a real estate investment company. Our life is full, busy, and somewhat hectic. This diagnosis is crazy. How did this happen? From the flu and a mysterious virus? He could have died. That’s what the doctor said. And now, my son has to be vigilant, we need to be vigilant, with his medications. He cannot miss a dose. Ever. Fatal consequences. That's what the doctor said. And what if he gets another autoimmune disease? What then? I'm starting to tear up. They are laughing and enjoying the moment and I am tearing up. Stop. Take a breath. For now, be in this moment. Enjoy the sun, the flowers, the blue sky.
They all start walking towards me. They are probably hungry again. As I wipe away the tears, my husband reaches for my hand and gives me a quizzical look. I shake my head and smile. Time for some ice cream.
It wasn’t until the plane ride home that my emotions overtook me again. I couldn’t stop the tears. They just flowed. And I couldn’t stop hearing the doctor’s words, over and over again. We almost lost him. We could have lost him. This new life is hard. What will he do if he gets another autoimmune disease? Will he ever be able to manage this on his own? He has the typical teenage-boy brain and forgets things on a regular basis. He cannot miss a dose of this medication. Ever. Deep breaths. Do not think about college. Don’t go down that path. Not yet. Fear settles in. It just sits there in my chest. My brain is swirling; it does that a lot these days. Work stuff. Family stuff. Normal life stuff. Three disease stuff. Then it hits me. “Holding at three”. Three autoimmune diseases. That’s it, no more. Focus on that. Another deep breath. It’s going to be fine because it has to be. He is smiling. Just watching him makes my heart swell larger than I thought possible. Look at our family of five. Find the strength we all need. Push the fear aside. It feels like a physical action - push the fear aside. For now, we are holding at three and it's okay.
I hope you never feel this type of fear, but if you do, I hope you find some way to push it aside. I hope you are able to find your breath. I hope you find some words that give you comfort, to help you get through those moments when fear sits with you, consumes you. I still struggle. Just when I think fear has left me, it comes back. It sits on my chest, and pulls me under. I keep looking for peace. I try to search for the good in every moment. Every day, I try.
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