Almost 14 horrific years....

Fourteen painful years, who would have thought that the human mind could survive such a loss, the tragic loss of a child, yet empires continue to be built. Yesterday, my therapist asked me to speak of the details from the very beginning of Evan’s Journey. The tears flowed profusely as the emotions were overwhelming, as I recalled those early months. I decided that I would go back and read through the CaringBridge journals so that I can actually recall the sorted details of the journey. Many of which I'm sure that I have suppressed and likely need to be dealt with. As we looked back in the months before Evan’s diagnosis, we knew from about August of 2006 that Evan started to not feel well. I have a picture in particular from our very first cruise together, and last as a family, when we were on a boat and he was sitting under a counter looking very unhappy. It is now that I know that he was suffering head pain, as his brain had started demyelinating due to this horrific genetic metabolic condition that I unknowingly gave to my son. Not that I could have done anything about it at that point in time as we did not have newborn screening as we now do today to alert us, but we were simply victims of circumstance at the time, and as the months went on the disease began to ravage his brain and steal his very life from us. Over these few months, my typically happy-go-lucky joyful boy had more bouts of unhappiness, again not being able to put my finger on what was going on, and of course his being unable to vocalize what was going on as well.. In January, I made a decision to leave the Catholic school we had been at for years due to an issue with the administration, and both Evan and Alaina had to be tested for their new school. Even in January his brain was still working perfectly well and scored normally on all of the testing that was necessary to place them in the appropriate groups in school. We had no idea what was the come. On March 18th, Evan had what we thought was a very severe migraine, as we have migraines in the family and it looked very similar to what I personally and others had experienced. As a paranoid / proactive individual, I did ask the pediatrician for a MRI and he suggested that we see a neurologist and allow him to lead the way with testing.The neurology appointment was not for 2 months. Around the same time we had parent-teacher conferences and it was then that we started to see what was happening in real life due to the demyelination of Evans' brain. As we looked at his work, we could see that all of a sudden he was unable to form normal sentences and his handwriting began to look illegible. In the ALD world, we know this is the classic sign of disease progression. In normal society, it was simply a young boy who perhaps had ADHD and was not focusing. Time went very quickly over the next 6 weeks where I was trying to set up appointments, get him neuropsych testing to evaluate his ADHD, dealing with additional headaches on occasion, but lots of normal life as well that helped to quell huge concerns. That was until April 30th. Our lives were crazy, busy, wonderful, joyful, and I would not have wanted it any other way. Part of our everyday life was running up to Irvine for swim practice and then to water polo every weekday afternoon. The kids would do homework in the car and have snacks, and as one group might be in the water, that would give me an opportunity to spend time with the other, particularly Evan, as he was a rambunctious boy who loved to play. In the back of my Yukon XL I had a big duffle bag full of toy options, which still sits in my house today waiting for the opportunity to share all of those items with his nieces and nephews. Whether we were hitting baseballs, throwing footballs, playing frisbee golf or tennis, I enjoyed every minute of activity that Evan brought to my life, perhaps knowing that I would only have him for a short. It's funny thinking back on it, because I always had two thousand things going on and not necessarily every moment to spend with the kids, but I really have no memory of not wanting to play with Evan each and every time he asked me to, and always making the time to do so. I don't know if it was on this particular day, but I can remember sitting in the car with Evan working on math with him and unlike my other kids or even Evan, he struggled with a concept that he could not understand no matter how I tried to explain it to him. I think it was at this moment in time that I really knew we were in trouble. And I seem to recall calling Mark about it with significant concern. As usual, when the kids were all in the water, I would run to the grocery store or run errands, and it was at this point that I got a phone call at the grocery store that Evan was not feeling well. When I got to the pool deck he was laying on the cement with a towel wrapped around him and a coach comforting him. I was weeks out of shoulder surgery and was not able to carry him, so a coach did it for me. My goal was to get him in the car, gather the other kids, drop Derek at Water Polo practice and head home. As soon as we got in the car he began to vomit and I believe had a seizure at the same time. Of course we're in a moment of panic, Derek hopped in the backseat as I requested, to help him, and as I'm driving down the freeway I called 911 with it ringing incessantly and no answer ever. It was that point in time I pulled up to the next pool deck and had Coach Jeff hop in the car with us as I drove crazed to Mission hospital just a few minutes away. As a 40-something year-old woman I had been to the ER multiple times in my lifetime, but never when they took your child from your arms and rushed him immediately to the back to evaluate him. But I remember very clearly was him laying on that hospital gurney looking incredibly frail and in a ball after the severe stress that the seizure caused to his sweet young brain. I don't remember any details, other than going with him to get a scan of his brain. I remember at one point in time being in the waiting room, though I don't know why I wasn't with Evan, as Mark was up at USC with Mary at a water polo banquet.What I do recall is how so many people I knew had gathered in a short period of time because of sweet Evan. While I didn't know it at the time, the emergency room doctor found a heart for Evan. For years I would get an email telling of his meeting Evan that day and following our journey and the impact it had made on him. At some point late in the evening we were told that we needed to be transferred to CHOC in Orange. They would not allow me to be in the back of the ambulance with Evan, and I remember sitting in the front seat continuing to try to look back to see what was happening, not knowing if my son was even going to survive the night, for what was the longest ride of my life. At that point Mark and Mary had definitely made their way back to Orange County, Mark must have taken the kids, and the groceries that were in the back of the vehicle, home, and Mary followed in the Yukon behind me. We were admitted to the ICU where Evan quickly stabilized, thank God, and then moved down to a bed in a room that we shared with another child in trauma. The only thing I remember that night was learning that the young man had broken his neck jumping on a trampoline.