I Should Not Have to Prove to Others My Daughter Has a Rare Disease

Just over 15 months ago my world stood still. I was out in the living room playing with the kids when my cell rang. I went to the bedroom and sat with my back leaning on the bed and answered the call from a number I was more than familiar with. I had no idea about the conversation that was about to happen.

I listened to every question asked and the concerns expressed as tears ran down my face; my throat closed. I thought I was going to vomit. I was being accused of causing my daughter’s health issues, her new diagnosis and her symptoms were being questioned. This was not a stranger or a medical professional, it came from a group of women whom I thought were my friends. I sat stunned. The words “mandatory reporter” and “department of Children and Families” (DCF) rang in my ears.

I knew these women. I knew without a doubt this was not a real concern; this felt vindictive. They believed they knew better than me, I had no “proof,” and I was an unstable person.

I sat and cried and shook with my entire being. I didn’t have anything to hide about my daughter and never hesitated to answer questions. I am usually loud and pushy, but I felt no need to defend myself in this situation. I had done nothing to harm my daughter.

After deleting any trace of these women from my life and my presence in any social media platform, I had to tell my husband of the situation my openness and honesty put our family in. We sat and talked about the real possibility that DCF may show up as I had heard the horror stories of other families with undiagnosed children. He was mad at the situation and it reinforced his idea that I am too trusting.

Within minutes, I was dismissed by people I considered friends. People I had spent time with and with whom I spoke with often and had planted roots with… or so I thought. I was being talked about and judged and tore down as a monster. I hesitated to trust anyone from that moment on. My world changed.

For days I cried and questioned and worried. I went over every moment with my child and medical professional. I wondered if I had shared too much, whined more than most. Had I pushed too hard or imagined what was happening with our daughter? I mean, I did have doctors write possible diagnoses on paper, and there were genetic tests that supported questioned diseases, but nonetheless, I now wondered if her issues were my fault. I pulled my circle as tight as I could and relied only on a select few. Each doctor appointment I stepped into shortly after the accusations I met with hesitance; I wonder if they, too, thought I had caused my daughter’s hypoglycemia, her episodes, her temperature instability, her tremors, her exhaustion and her “less than” quality of life.

It was not until standing there with one of her physicians joking about what had happened that she reiterated that neither her nor any of the other physicians would have ever taken those concerns and doubts seriously. She assured me if we ever had to face anyone or battle over how we care for our daughter, they had our back. Medically speaking, she reinforced I could not have caused her issues and symptoms.

With hesitation and worry, life continued as it does. I did not open up to anyone or answer questions. I only spoke to family in regards to her good days and bad. I shared appointments or labs that indicated what might be happening in her body with only those close. I didn’t want to spread awareness. I hung up the shirts that screamed she was our superhero. I stopped writing, blogging, sharing photos. I watched friendships and people change as I couldn’t be the person I used to be. I cried and worried in only the company of myself. The shower and bedroom became my refuge. I had officially joined the ranks of the accused, and it had shattered my outgoing and too honest personality.

 

We moved to a new town, and within the town I started noticing others catching on to my daughter’s needs and problems. I had women insist I take a moment of peace as they merely sat outside the car to keep an eye on my daughter so I didn’t break further than I already had. I openly and honestly spoke of her health and her symptoms. I let others know when we were headed to doctor appointments and even asked one to attend one with me; I ended up cancelling as the fear crept back in. Was I trusting too much, too fast? Was I going to fear every knock at the door again?

Ping.

I sat there  again, same bed, different phone, months and months later. It was around 9:30 am. I am used to this alert as I purposely signed up for a shopper site to try and get some summer steals. I wasn’t prepared for the actual email that was waiting for me: test results.

My daughter had been in the hospital a few months back in a last ditch effort to confirm what she had been previously diagnosed with: mitochondrial disease. Her previous diagnosis was based on interpretation of genetic results, symptom lists, lab results, previous hospitalizations and overall smart experienced physicians. But for me, those still left me with moments of “what if” or “but” when speaking with the next physician or accepting the reality of our situation. Or quite frankly because I am mom and hold out hope.

In black and white was my “proof.” Lab results spelled out her deficiencies and mitochondrial disease.

Oh, this moment was too familiar: tears, tight throat and the thought that I was going to vomit. But this time also a bit of relief. Relief that the diagnosis journey was over without a doubt. Relief that we never had to walk into another physician and explain how or why she was diagnosed. Relief that her current mito experts may be able to help her better now that they know specifically what is not working in her body. Relief that it would never matter again who questioned what in regards  to her and her care.

And I admit I had a mixed moment of, “here is your proof,” mixed with a few expletives toward those who accused me of harming my child. Until it hit me that more than anything, anything in this world, I wish I didn’t sit there staring at those results.

I had been so strong for the past four years, but there it was in its ugly glory,”proof” that my daughter does indeed have a life altering, and more often than not, life limiting incurable disease.

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