Last Monday my world came to a screeching halt. The busyness that had consumed my life simply stopped, and suddenly, there was nothing. For months my every day included appointments and phone calls with doctors, therapists, teachers, and insurance. As a veteran special needs parent, managing chaos is something I have grown to be very good at, and to some extent, something that I thrive on. I am the one who always knows exactly what to do. Formulating a plan of action is as second nature to me as brushing my teeth, and maintaining status quo even in a crisis is my specialty. But, on Monday, the chaos dissipated like a fog, and with it went the resolve I wear like a suit of armor.
Twice this summer, my fifteen year old son was hospitalized with pancreatitis. I was shocked and confused by the first bought, but when the second one hit less than three months after the first, I was determined to find the cause. There had to be some bug or some fluky thing that had cropped up and needed dealing with. During the hospital stay he was tested for everything under the sun, and nothing showed up. I was convinced he would be one of those poor individuals that just never knows why their pancreas occasionally gets mad at them. I was already preparing my son to watch for early signs and symptoms of pancreatitis so that we could be more proactive if and when a future attack happened. Having a plan is calming, and I had my plan in place. I was good.
Mayo Clinic has something called The Patient Online Portal which holds all patient records including lab tests within minutes of them being entered. This is empowering to a special needs parent, as we no longer have to wait for a phone call or an appointment with a doctor to get our child’s results. So of course I spent most of last Monday morning sitting in a waiting room while my son was being seen by numerous clinicians scouring his online portal account. I was so sure that the lab tests would all come back normal, and we would never have a clear reason for the flare ups. I liked the idea of it being a weird viral thing, especially because of the severity of what we could be facing. I was prepared for not knowing. What I was not prepared for was a positive sweat test and Cystic Fibrosis. While my son was in getting his pancreatic MRI, I sat in a waiting room and cried. My world, the chaos, the noise, all came to a screeching halt. I called my husband and told him the news – deafening silence.
I collected myself, and got through the rest of the appointments. That night, as my husband and I tried to come up with a way to explain this news to our son, the doctor called with more news – pancreatic divisum and unfavorable “changes’ to his kidneys showed on the MRI. The doctor quietly explained the litany of appointments we would be attending in the near future, as I sat with the phone in my hands, completely numb.
With extreme caution and gentleness, we explained everything to our son. All the while explaining all the positives that we had in our midst, hoping that if I said them out loud enough times, I could eventually believe them. We spent the next few hours reciting the same story to the rest of our family – one by one. With each retelling, the truth of the situation became more and more real. My son has Cystic Fibrosis. My son has Cystic Fibrosis. My son has Cystic Fibrosis.
When you find yourself in a moment, and your world is standing still, it is okay to just breathe. What does that mean? It means, Just Breathe. Give yourself time. Feel. Be sad. Be angry. Cry. Give yourself grace to ride the emotional roller coaster, because it isn’t going away.
Don’t Fear Anger. Let it do it’s Job.
I was so very angry. I was angry at the doctor for telling me things I did not want to hear. I was angry at every doctor who had ever seen my son previously and missed the Cystic Fibrosis. I was angry at people who seemed happy or content with life. I wasn’t angry with them per se. I was angry at happiness itself, because joy had somehow abandoned me. I could not see a joyous future, and truth be told, I needed my anger. My anger gave me the strength to move forward with my daily tasks and responsibilities. Even when life is standing still for you, it is still moving forward, and my kids still expected breakfast, clean clothes, and homework help. They still deserved a functioning mom, even if that meant I was going through the motions. Anger helped me do this. It gave me the energy to pull off the covers and get out of bed. Anger has its place, so don’t forget to use it when you need.
Crying is a Therapy all it’s Own.
Over the last week I have shed thousands of tears. Tears of anger. Tears of the lost normal I had grown accustomed to. Tears of fear over what our new normal will become. Tears for my son, my husband, my other children, and parents and husband’s parents. As I went along with my daily tasks, tears would simply hit me out of no where. I spent quite a bit of time in bathrooms crying. It still hits me. But with each tear comes relief, the world doesn’t look as gloomy, and life begins to move forward again. There truly is nothing quite as therapeutic as a “good cry” or twenty. Whatever gets the job done.
Give Yourself Some Space
I am very fortunate that we did not have a list of activities planned last week, because I would have needed to cancel all of them without feeling guilty in the least. I was in no position to see anyone or really talk to anyone. The anger I was using to fuel my daily activities was also very close the the surface and my tongue. Just like fire has its place, so does anger, but if either is kept unchecked, they will destroy everything in their paths.
Well meaning people would say things that would instantly make me hot. Then other well meaning people would say the exact same thing, and I would be comforted. Seems crazy as I write that, but it’s true. And, it had nothing to do with who said what or what was said. I was on that roller coaster of emotions and truly wasn’t rational. Sometimes space is necessary, and it is okay to make room in your life for that emotional roller coaster ride, at least for the short term. It may be that a mental health sick day from work is in order, and if so, do not feel guilty. Believe me, people will understand. And, if they don’t, they have no business in your life anyway.
I am happy to report that this week things look and feel a lot better. The tears have mostly dried up, and the emotional roller coaster seems to have ended, at least for now. I am not saying that everything is fine, because it isn’t. I will never be fine with my son’s diagnosis, but at least I can now see light. We have a path in place, and have found the beginnings of a new normal that isn’t as scary as I had imagined. So if you find your world has come to a screeching halt, remember, Just Breathe!