Be Careful What You Ask For

I sat there in the car…frozen…staring at my phone. I didn’t know how to process the information I was just given. Overwhelmed, tears fell down my face and I had to remember to breath as I suppressed the urge to cry. My son’s little voice from the back seat made it that much harder, “Mom! Who are you talking to? I’m gonna be late for school!” I swallowed and tried to take some deep breaths and steady my voice. “Well, let’s get inside then!” I said, in the peppiest voice I could muster. Once in the school, he gave me the biggest hug and told me he loved me. I had to fight the urge to grab him and tell him how sorry I was. As he walked up to his teacher he began coughing and she lovingly reminded him to cough into his elbow. The horrible bark like cough sounded painful. With the new information I had just received, I knew that it probably felt even worse than it sounded. I started to well up just hearing it. The mere thought of his little lungs sore and swollen made me feel broken. When he greeted his teacher his words pushed me over the edge, “Hi miss. I have a big cough again. I’m not sick, I promise. But I can’t stop. I’m sorry.” I quickly walked away before he could see me cry.

We all know the old adage, “Be careful what you wish for”. We have all said it or had it said to us. And it’s funny because I knew exactly what I was asking for, even praying for. It’s the same thing I ask every day, “Please let them find out what’s wrong with my boy.” Mystery GI symptoms have plagued him since birth. Years of testing has yielded dozens of normal tests results. There is nothing medically wrong with him, yet for years he has had pain, vomiting, slow physical growth and periodic internal bleeding. This year, when his bleeding increased, we became aggressive and desperate. We demanded second and third opinions and went back to the hospital every few days for two weeks. Finally, we found a GI specialist who had ideas and who didn’t seem stumped. She ordered new tests and believed everything we said. I hoped and prayed that she would find something…that she could help. So now I sit here confused and conflicted at my own feelings of devastation and guilt that hit me the minute I heard the words, “Abnormal test results”.

These are the words I’ve been fighting to hear. Desperate to hear. I have known something was wrong since the day he was born and I have begged and pleaded for help. I have demanded testing and answers because I knew that finding the cause of his distress is the key to getting him treatment. But now that I have been given what I asked for, I’m freaking out. Until now, the existence of his GI issues had not been medically confirmed. We knew something was wrong because he had symptoms. But what it was, how severe it was, and how to treat him was anyone’s guess. Now that I have confirmation, all I want to do is cry. Both tears of relief, but also sadness.

You see, I have been telling every doctor with great confidence that they are missing something. That they need to look harder. That their tests are inaccurate. That I know I’m right, and they are wrong. I have looked crazy. Overprotective. Obsessed. Arrogant. Demanding. Impatient. I was sure getting these results would make me feel vindicated and validated. It would be a bit fat I told you so. But even better, I would have answers that would lead to treatment and pain relief for my boy. This call was supposed to be exciting, relieving, validating and helpful. But in reality, I got more than I bargained for.

The truth is, while I knew I was right, I was hoping I was wrong. To learn that even medicated, his pain is immense, was more than I could take and the news completely gutted me. To hear that his “asthma” like symptoms are indeed caused by stomach acid in his lungs took my breath away. The fact that fluid and acid was pooling in his esophagus made me sad. Hearing phrases like “possible structural defect”, “dysfunctional esophagus”, “exploratory surgery” and “high risk for anesthesia” made me cry. But it was the “concern of esophageal and lung damage” that made the physically shake.

I feel guilty that I ever wished for validation that I was right. And I feel even guiltier that hearing I was right made me feel relief. I feel absolutely devastated that my brave sweet boy is in so much constant pain and I feel hope that he can finally get some relief. As his mommy, it’s my job to help him. It is my only purpose. Yet I don’t have the power to save him from his own body. I feel like I’ve failed him, but I also feel proud that I followed my instincts and fought for him.

The cold hard truth is that this is all good news. It’s information we can use to help him. Now that we know what’s wrong, the doctors can start looking for the underlying cause. While I know this is good news and a step in the right direction, it honestly feels like bad news. My heart is shredded, my soul broken and my eyes weepy. But, my head is relieved. My brain is happy to finally have choices and direction. The hubris in me does in fact feel validated. It’s an odd battle of logic and love, of compassion and resolve and of weakness and strength. I feel confused and conflicted. Scared and relieved. Happy and sad. Guilty and proud. The simultaneous polarized emotions I am experiencing makes me feel off kilter and disoriented. It’s foreign and strange and I do not like it. I know how to feel happy and I’ve learned how to deal with pain and sadness. But both at once is a wild, stomach-turning ride.

I will keep fighting. I will keep praying. I will keep loving him. But now I will have to also remember to be careful what I ask for. The answer may not be as easy to accept as I think.


5 thoughts on “Be Careful What You Ask For

  1. Goodness, what an awful situation. I hope some good can come of it and, as you said, they can at least start helping him now. Also, you should feel proud of yourself because despite almost being dismissed by medical professionals you continued to trust your mummy instinct and fought for your little boy, who sounds delightful, by the way. I know it couldn’t have been easy and you will get no joy of being right but the easier route would have been to accept their answers.


  2. Heather, You are an extraordinary parent doing everything you can for your son and he is lucky to have you. I can’t begin to imagine what my parents went through when I was diagnosed with Dystonia but I do know they dedicated their lives to making mine better, just as you have done for your son. Bless you. xxx -Pamela-


  3. I also have dystonia and also have experienced weird looks and doctors not understanding and all sorts. My honest opinion is that you should write a book. Your writing is amazing! I live in constant pain and are bedridden partially due to dystonia and partially due to other chronic illnesses. I am currently writing a book myself good luck with everything you and your family are going through


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