I remember when my daughter was clinically diagnosed with her mitochondrial disease, I processed and cried and continued on. I remember when my daughter was confirmed to have mitochondrial disease through one of the gold standard tests of the disease — I processed, I cried and continued on.
We moved this past year and with that came a change of medical professionals, schools, everything. After finally getting her settled in a new school I decided to make an appointment to address tremors that had been bothering her; I figured protection was key and I didn’t want any issues with her new class. We all drove happy-go-lucky to the office and I promised Happy Meals in 20 minutes for good behavior. Her brother was with us this time and bribery was my only chance at a smooth visit. The doctor walked in and within moments she had her previous test results out and highlighted, and was explaining to me how they proved mitochondrial disease, her complexes, and reiterated that this disease is going nowhere. I sat there trying to take it all in, but in reality found myself feeling like I had been punched in the gut again. What I thought was supposed to be a 20-minute “use these tools to help her” appointment had just become another two-hour “I have to face this, process it, cry over it and continue on” moment.
Processing took a little longer that time. I just kept playing the conversation we had over and over in my head. I even asked her is there was any way this was wrong. What I hadn’t told others was I knew there was room for slight error on the test and well, I had hoped we were part of the slight. No hesitation. No stutter. It was 100 percent assurance. “Your daughter has mitochondrial disease.” In a way, I know the fact that we accidentally stumbled into an office run by a doctor trained by one of the few world renowned mitochondrial disease clinics in the country is a blessing, but it didn’t make the third definitive time hearing her diagnosis any easier.
This past week we returned to the medical institution where my daughter receives her care. It seemed easier this time as no one was going to naysay, no one was going to confirm, no one was going to do anything other than address her symptoms or issues. What I didn’t realize was that by addressing her issues, I was being informed again, my daughter had mitochondrial disease –a life-limiting, life-changing disease. Every issue became secondary to her disease, meaning if she didn’t have it, they wouldn’t be there. Some moments I felt vindicated, as evaluations matched her complaints and my concerns. Other times, the lack of education and support of this disease was glaringly obvious. I was back to processing, crying and pushing on. And that I did, thinking it has to get easier, that I have to be close to the point where I don’t have to feel this anymore. I have to be close to the tearing up, lump in my throat, numbness in my body moments being gone. I mean, we have now had this diagnosis a few years. I continued on.
And here I am this week, sitting here, processing and crying because my daughter has mitochondrial disease. This time, it came in the form of school meetings, being called by the school clinic to come get my girl and the hardest of all — the decline in grades. I guess I somehow thought we may escape some of the learning issues some kids with “mito” can have. I should have faced the reality that I knew her brain was affected, but somehow all those positive scores the last few years had me fooled. It isn’t that I don’t realize any and all kids can have learning issues, stamina issues, fatigue issues, pain issues – trust me, I get that. But the reality is, her issues are because of a disease that has no cure. And it is in this moment that I am learning I may never fully be able to accept mitochondrial disease, and by that I mean the ever-changing nature of her condition. It is constantly shifting our “normal.” It flips the script just when we have learned all our lines; it shows up even when we think we are doing everything that has worked in the past.
Acceptance is ongoing, and whether others are able to accept a diagnosis in a moment and “move on,” it is OK that I cannot and have not. I feel that I am likely not alone in this.
So with that acknowledgement, I will just continue to process it, cry about it, and continue on because my daughter is worth it.