The Making/Breaking of a Rare Mother's Heart

Let's start at the beginning of my rare journey, and the making of a rare mother's heart.....

Fall of 2015 was when pieces were starting to not fit right. Our son had been diagnosed with asthma, anxiety and ADHD and was on medications for all three. This kid was an athlete, he was born to move and move with a purpose. At this time he was the top cross country runner in his middle school and one of the top soccer defenders on the top team in the club that is known for having the most scholarship players in the state we lived in. He was an average student, who had a rough transition to middle school, as in our town set of railroad tracks divided who went to which middle school and most of his elementary school friends went to a different school from him. So, his sports were pretty much what he lived for at 12 - he was good at them and that was where he had a good group of friends. If you asked him then what he would do after high school - it was most likely - go to college and play soccer and figure out what else from there.

When he played soccer, this kid played his heart out. As a club player he would often have multiple games and between games we would many times find him literally sleep on the grass. He had always had bad asthma and doctors told us that his lung functioning was at less than 50% and that he was working three times as hard to keep up with everyone else on the field. He was not growing as fast as his peers (everyone grows at different rates, right?) so they were getting bigger and he was being forced to just move his smaller frame faster. That fall we were noticing that he was having a hard time just getting going fast. In gym class when he ran has mile his time was a minute longer the first time, we attributed it to a bad day - everyone has those right? He was slowly losing playing time on the field as he just could not keep up anymore. He used his frustration as motivation and would come home after multiple games and practice more. Next mile test in gym class his time went up about another minute. Something was going on....Were ADHD medicationss impacting him?

Meanwhile, teachers were getting frustrated because our son was not paying attention in class. As mom, I was doing a lot of work in the background to keep him on track with assignments while doing both cross country and soccer. Please keep in mind, being in both was completely his choice, we were never parents to push. Cross country had finished and we were just left with soccer, but the ride to and from soccer was a good 45 minutes out to practices three times a week - he was now falling asleep a lot of time on those rides home - even though that was the only time he really had with his two best friends. Doctors began adjusting ADHD meds, and maybe anxiety meds (details are blurred on that eight years later). By late November we had a new issue - nausea an vomiting, but curiously it was just in the morning and afternoon and evenings he felt great. It seemed that his anxiety had gotten worse to all around him.

One of my worst mom moments (in hindsight) was the first Saturday in December 2015. We probably had to leave for Saturday practices by 6:15am given the distance and picking up the other boys. We arrived at the facility in time for the boys to change into cleats and warm up. In this particular facility I could sit upstairs and have coffee while I watched practice. As I walked to get my coffee, before my son could even make it downstairs I heard him scream "MOM!" - he had run to a garbage can and was throwing up there. Another dad beat me over to him - we got him cleaned up and he went down stairs, sent me a text saying he didn't know if he could practice. Warning: this is where my heart still breaks at my momming....I told him he needed to get out on that soccer field or make a decision that he wasn't playing soccer anymore. He complained of seeing black dots. I told him that I understood anxiety and I had it too and either he had to face it and get out on the field or accept that playing soccer was too much for him and leave the team. I told him I was not going to continue getting up at the break of dawn and driving him and his friends (we did carpool - I was not always driving) all around to play if he could not handle it. Now, I am normally a very compassionate and patient person, but we had been dealing with "anxiety" a few times a week for school and now soccer - I was frustrated and mad. Well, he went out on the field, took a few more breaks than the others, but made it through the practice.

Between then and the next notable date was more of the same. He went to school, got sick, they sent him home and we would try again the next day (or two days depending on when he threw up based on school sick rules). He would complain again of the black dots and sometimes have to sit down. I was working with his pediatrician on adjusting anxiety medications and I believe at this point we had him off of ADHD meds. He was miserable with every aspect of life, I was showing more compassion than that day at practice, but I felt I was losing my youngest son to anxiety and he was losing so much of his life every day to it.

December 13, 2015 - there was a big Sunday night NFL game for our team and I made a whole bunch of food for everyone to enjoy - including spicy chicken wings and chips and salsa. He ate, ate everything and ate a lot - no stomach issues. The next morning he gets up to get ready for school and I was determined to make it a good day and have him have something good to start his day. So I made scrambled eggs and toast - within minutes everything he ate was all over the carpet - he was sick without warning everywhere. He was crying that he could not try school (there were days I had pushed to work through the "anxiety" so it would not control him). I promised my baby right then and there that we would get answers that day.

I called the pediatrician, who somehow got us in immediately. He saw his blood pressure (which I both wish I knew and am thankful I don't know) and sent us stat to the children's hospital near us - with orders for a brain CT (remember the black dots). My husband met us there and we watched our son go through all kinds of testing, including ophthalmology, blood test, neurology, etc... The good news was that the head CT was all clear. The blood tests were not as good, looking back and understanding them a lot more - they were a mess. His kidney numbers were all over the place, his electrolytes were messed up, pretty much every lab on the metabolic panel was way off. Was I relieved that this was not "just anxiety"? Maybe a little, but now I was worried about so much more. No one had clear answers, but were admitted with the thought that this was some kind of endocrine issue that would need more investigation.

There will be some who read this that do not share my faith, and I respect you, but please respect mine - with this story especially. When he was admitted the attending doctor was clearly placed there by God. This doctor was only there for the first couple hours of our 4 day stay, but what he did and how he helped me, as a scared mom will never be forgotten. As the nurses were getting our son comfortable the doctor spoke with me. He explained that the labs were concerning and were leading them in the direction of looking at a specific endocrine disorder called Addison's Disease and that more testing was needed to confirm this. The testing would be done the next day. He then went on to tell me that it is uncommon, but his wife had it and that she lives a normal and complete life as an adult. And at that moment, I felt a sense of peace for the first time in probably weeks for his future. I had gone from thinking his life could be destroyed by anxiety or that could lead to other more severe mental health issues, to being so terrified of that CT scan, to being unsure of what to even be afraid of and just wanting answers. This man gave me a glimpse of hope for my son, for his future...