I wrote this a month ago.
For the past couple weeks, I looked forward to meeting with the palliative care team to discuss pain management for Carter. For almost a year, his pain has progressively gotten worse and GI function has waxed and waned. Back and forth for months with GI and neurology making med changes and maxing out dosages. The advice to continue with motrin and tylenol has become a joke and no longer works at all. All benign forms of pain management exhausted and beginning to fail. I expected to be given easy answers and an effective pain med. My expectations unrealistic in all of my innocent ignorance. I sat in the small room with Carter at my side and facing 2 doctors and a social worker as they all looked at us with concerned and caring eyes. The ICU doctor explained to me that they looked through Carter’s medical records and his low GI function gives them concerns as far as pain meds, because all that is left, are Opiates. Opiates will definitely help minimize pain, but will also add to Carter’s already slow and declining motility which can lead to worse constipation, poor intake and loss of weight. This could potentially cut Carter’s already shorter life span in half. If all testing and trial & error proves nothing or finds no fixes, we are left with the choice of quality of life over quantity. Those ultimately, at one point or another in Carter’s life, will be our choices. Mitochondrial Disease does not relent, it doesn’t vanish. It can’t be outgrown or cured. The reality is that is progresses; a reality that may already be in the works. Doctors are baffled and confused as to why Carter’s pain is progressing and GI function is declining. The only thing they understand is what history has proven; Mito sucks. As I listened over the next hour and a half to the tests we can run and the steps we can take before making the big decision, I cried. I cried and cried and cried. I couldn’t push them back; my super hero cape folded and hidden in Carter’s backpack. My courage and strength being tested at it’s full capacity. I felt my heart cracking and threatening to shatter. I looked at Carter’s face and he smiled at me. He didn’t look scared or worried. He was comforting me, even if he didn’t realize he was. He was telling me he was okay. I asked many questions, I’m sure many were irrational and silly. But I had to know what they thought. Would Carter live a long life? Would he be okay? Would any of the possibly findings be fixable? All of the answers were similar to what we have become accustomed to hearing over the last 4.5 years. There is little to no fix and the chances of us outliving Carter are significant. Significant?! A word that can mean so much. Carter has been a significant child; a miracle that has changed us and our entire family. Carter came into this world like a burst of sunshine and energy. It still kills us that life has turned out this way for our son. 5 years ago, I was only 8 weeks or so pregnant and dreaming of Carter’s future and all that we would teach him and share with him. I looked forward to hearing his first words, throwing many birthday parties with his favorite themes, seeing him walk across a stage for graduation, marrying the love of his life and meeting my grandchildren someday. All things that still pain me greatly when I think how different his life has turned out. Those are all things we are and will be robbed of in Carter’s life. Instead of making decisions on birthday themes and which friends to invite…we will be making decisions about pain management; quality of life or quantity. What kinds of choices are those?! It’s so unfair and devastating. Once I got home, I finally found the strength to call and explain what we had been told to our closes family and friends. Josh and I discussed our options and what the doctors said as much as we could both handle while we watched Carter fall asleep last night. We both laid with him and kissed his innocent, sweet face as we both cried and mourned the changes that are coming. We still hope that something will change and we can prolong these choices; hope we will always have. We both agreed that we will do whatever we can for Carter; no matter how hard the choices are as long as it means his life is good. For us, comfort and happiness are top priority, even if that means we have less years with Carter. We would rather he has a few great years, than 10 painful, unbearable years. Words that no parent should ever have to say or contemplate. I wouldn’t change a second of Carter’s life and I have zero regrets. He is the biggest and best miracle that has ever been so graciously put into my life. And as his advocate and mother, I will make choices that are best for him even if it breaks every piece of my heart. All of the crying left Josh and I exhausted last night and surprisingly, we slept hard. We both feel stronger today. We are ready to fight. Phone calls have been made to Carter’s main doctors to find out where to go from here. I am strong and ready to FIGHT! I will never give up.