As long as I live, I will never forget the utter despair or the sickening feeling that consumed me the day that our lives changed forever. Even now, reliving it through these words has my stomach in knots. As hard I as I try, I don’t know if I will ever accurately be able to put to words the way it feels to have everything ripped away in a split second by three letters. It’s a devastation I would not wish on my worst enemy.
As I mentioned, the physical therapist, Jann, at Landon’s school had arranged for her and Landon’s teacher, Miss Iverson, to come over to our apartment to talk about what she thought may be going on with Landon. As soon as they walked in the door, I could feel it. This was serious. Landon’s teacher was a very sweet young woman, not much older than me. I’ll never forget the look on her face. She looked at me with eyes full of sympathy, and appeared to be very nervous and on the brink of tears.
They came into the living room and sat down. Jann (PT) had some papers in her hand. She handed them to me and asked me to look at the pictures on the page. I had to do a double take….the little boy on the paper could have been Landon’s long lost twin. The resemblance was uncanny. I then noticed that website in the upper corner of the paper had been scribbled over with a permanent marker, along with every mention of the name of this disorder.
Much of the actual conversation was a blur. I truly believe my mind, in an attempt to protect me from the pain, has blocked part of that day out. I do remember Jan telling me that she stumbled across this disorder completely by fate. She said she was normally an early to bed person, but decided one night to turn on the news at bedtime and there was a story about a little boy who had “this disorder” and he looked very much like Landon. After doing some research, his symptoms fit and that’s when she asked for the photos. She said that the people at special education had not wanted her to come to me, as they were not doctors and it was not their place. In good conscience, she could not stay silent. She knew I had been searching for answers and that special education was willing to chalk Landon’s issues up to “poor parenting.” She said as soon as she saw the videotape of Landon’s intake assessment at SE that she knew he was suffering from a syndrome and parenting was NOT the issue.
She said she didn’t not want me to know the name of the syndrome until she had a chance to talk to Landon’s doctor (with my permission of course) and didn’t want me googling anything until we saw the doctor. She did tell me that this condition was genetic and a test could be performed to determine if Landon was suffering from it. I do remember very clearly, however, that when I heard the word “genetic” I began to panic. Immediately I looked over to my 6 month old son, sleeping peacefully in his swing and everything began to spin. The tears came, and I began to feel sick. Jan could see on my face where my mind was going and threw her arms around me, telling me not to go there, as we didn’t even know if this was the correct syndrome. But I knew. I knew in my gut that this was the answer. Landon’s teacher never said a word. I could see that she was having an extremely difficult time holding back her own tears. I can’t imagine what that must have been like for her, going to a student’s house and having to give them news that would change their lives forever. I am sure that day is burned into her memory as well.
Without giving much more information, Jann and Miss Iverson handed me the pictures. Jan told me that after she talked with Dr. Bittner and got her opinion, we would go more into detail about the syndrome and what it all meant. As soon as the door closed, I began to scour the papers she left for any hint as to what this syndrome was called. Most things had been blacked out, but one mention had been missed by the marker. This would be the first time I saw those three letters that changed everything: MPS. I immediately began googling. There didn’t appear to be a ton of information, but I found the MPS Society’s website and began reading. As soon as I pulled up the fact sheet on San Filippo Syndrome, which was type 3, I became sick. This was it. This was what Landon was suffering from, I had no doubt. And then I saw it. No treatment, No cure, Terminal.
I went numb, and things are fuzzy after that. I remember calling my mom and my sister, I remember crying and praying that I was dreaming, but the rest of that day has been erased from my mind. The thing that I wish could be erased, is unfortunately is burned into my memory forever. That feeling. That sick, hopeless feeling in the pit of my stomach. I feel it now. I still cry, every time I allow myself to think about that day. With three little letters, my whole world fell apart. The future and all the promise it once held was ripped away with one click of the mouse. There would be no first kiss, no prom, no graduation, no wedding…there would be nothing. Every dream I had for my son would now never be a reality. I remember wishing the earth would open and just swallow me up. That raw pain was so all consuming and I really didn’t know how I would ever pick myself up off that coach and keep going.
The next several months would be spent learning about and coming to grip with our new reality and the road to official diagnosis. I didn’t know it at the time, but this day was just the beginning of what would be more than a year of things spiraling out control, in all aspects of our lives.