Just keep swimming.
Just keep swimming.
Just Keep swimming
Those words run through my head every day as I care for my medically complex child. Over the past five years, I have learned to tread water, swim laps, and sometimes I stop swimming. There are some periods when I can’t physically move, and I feel like I am drowning in sadness, anger, and grief. I wish I could keep swimming in those moments, but my arms are heavy, my legs are weighted down, and my lungs have filled with water.
Every time we see a doctor, I have to hold my breath because I fear new diagnosis being added to his chart. His chart is already so thick, and he sees more doctors than I ever knew existed. I find myself putting off making appointments sometimes because I just don’t want to know what is going to be wrong next. The irrational part of all of this is that in my gut I always know that something is wrong with him before the doctors ever identify it by name. Typically, I’ve already read about the disorder or disease before a doctor ever brings up the issue. The only time I was ever surprised by a diagnosis was when they found calcification on his mitral valves.
I remember grieving deeply after the diagnosis of his heart condition. The realization that his ribs would be broken open to repair his heart tore me up at night. Grief caused me to sink into such a funk that I left my job, and became his stay at home mom. Eventually, I moved forward, and we got used to his new routine of appointments at the heart clinic.
I found a way to keep swimming.
Then there was the day he was diagnosed with Autism. Even though that one didn’t surprise me, I still had a complete out of body experience. My entire body felt numb. When I sat in a room, I felt as though I was a million miles away from anyone near me. For months I felt utterly swallowed by the diagnosis, the therapy, and adjusting to his new norm.
Recently, I began to climb out of that darkness, and I was starting to feel hopeful for our future. Therapy was working well, and we were learning how to manage my son’s behaviors, help him cope emotionally, and what strategies to use to help with transitions. Developmentally he has been doing fantastic. He’s learning so much each day, is excited to learn the preschool curriculum I teach him at home, and he’s eager to share his knowledge with everyone we meet.
Things for a second felt good.
I knew it was all too good to be true.
I just started swimming again. The water was getting rocky, and I knew another storm was on the horizon.
Despite the thriving development, he’s continued to struggle with feeding, digestion, and excess gas build up in his body. Daily he complains of stomach aches, too much gas in his stomach, or he has reflux that stops him in his tracks. His head shakes violently as he tries to play, I hear food move up and down the esophagus, and I try to alleviate the pressure by venting his g-tube. We changed from a synthetic formula to real food, and everything seemed to be improving. His stomach remained wildly extended, and his gas was always excessive.
He needed to be seen by his Gastroenterologist, and I knew the appointment would not just be status quo. I had researched different disorders that impact the stomach and digestion. I knew that the symptoms he was having were likely due to Gastroparesis, but I didn’t want to add another diagnosis to our chart. I just wanted to pretend for a moment that we had fixed the issue with his diet.
I left the appointment with additional tests scheduled. There were discussions about treatment options for the disorder, but it didn’t matter grief already swallowed me whole. I drove home almost numb to the idea of another diagnosis.
How is it possible for one child to have so many affected systems?
Here we are adding another severe condition to our list. I found it hard to breathe. I tried my best to resume business as usual and stick to my commitments. Again, I sat in a room full of people, and I was trapped inside my brain fearing the worst and praying for a miracle. My stomach began to tighten into knots, and I fell asleep feeling nauseated and exhausted. As the sun rose, my stomach was still as tight as a knot, my body had hot flashes, and I had entirely succumbed to the stress of the new diagnosis.
I stopped swimming, and this time I feel like I might be drowning.
I realized that no matter how hard most of us in this community try to fake it and keep a happy face it’s a losing battle. Sometimes the stress and fear for our children’s futures all becomes too much. Emotional pain manifests into physical illness. Our hearts that are slowly breaking with each diagnosis start to break down our immune systems. We stop dead in our tracks sick from worry, sick from despair, sick from grief, and physically sick from the strength it takes to keep going. There will be days like this in all of our journies. Days where we need to pause, turn off our thoughts and fears, and just allow our bodies to recover from the shock of the new diagnosis.
There are days where we just don’t have the fight to swim – and that’s ok.
Most of us know we have to be strong, and there is no option but to keep going for our children. We all eventually stand up and dust ourselves off from the debris. We put on our big-girl or big-boy pants, and we bravely keep on fighting for our children. However, I need to remind myself and even others that it is ok to be in shock. When grief hits your heart, listen to what your body is telling you. If you need to rest, lay in your bed with a hot cup of tea and garbage television and relax. If you need to vomit to rid your stomach of the nauseated feeling, vomit until you feel like you can breathe again. Your body is telling you that you need to stop, you need to listen, and you need to process the news.
Take that time to listen to yourself, be kind to your heart, and remember that even though today is difficult, you will find a way tomorrow to just keep swimming.