So I have to step outside of telling the story for a minute and jump into real time.
As some of you know, yesterday I was enjoying the day, celebrating my brother’s birthday with him in Miami Beach. I had come to Florida to speak at an internal conference of Shire HGT, the pharmaceutical company that makes Case’s Elaprase drug, as well as the intrathecal idursulfase that he is receiving in the clinical trial. After the conference, I met up with my brother to walk around Miami Beach, talk, and just enjoy the weather and the scenery.
Chris (my husband) called at one point and started the conversation with the words, “I have bad news.”
Whoa. Never the statement you want to hear. Wisely, he quickly told me the news, which was that our son Tyson had had another seizure, while at school.
Just this past November, Tyson had been seizure-free for one year. If you aren’t familiar with his background, Tyson had his first seizure in January 2009. It was not a “normal” seizure, if those exist. He had not been feeling well and then all of a sudden he went limp, his eyes rolled back, and his tongue hung out. He did not convulse. We later learned these are called absence or complex partial seizures. But at the time, we had no idea what they were. We had never heard of or seen a seizure that was like that. Later, I realized that my extreme fear at the time was because I thought he was having a stroke. When he was totally unresponsive, I thought that I was watching my child die.
The 911 operator suggested that it could be a seizure and I was relieved. Prior to that, I had put my finger in his mouth out of concern that he was possibly choking on something and his mouth became rigid and he almost bit my finger off! He did lose a tooth and one came loose as a result of that part of the seizure. But I digress.
When Tyson was born, we had him dedicated at church. Being incredibly thankful that we were given this child after four years of trying and having great heartache, I was extremely cognizant of the fact that this was not my child. We chose the song Offering by Third Day to express our gratefulness and dedicate his life and ours back to the Lord.
This is my offering to you Lord
This is my offering to you God
I will give you my life for it’s all I have to give
Because you gave your life for me.
When we didn’t know that Tyson was having a seizure and I felt like I might be losing him, as horrible as that feeling was, God did an incredibly gracious thing with that. He was reminding us that these children are not really ours to begin with. In a gentle way, He was preparing us to deal with Case’s diagnosis. A diagnosis that requires your brain and heart to prepare to lose your child at any time, but almost certainly, sometime in your lifetime. I am reminded of the line in the song Offering: “With all the things you have created, And still you choose to think of me.” God knew I needed preparing to deal with something like MPS.
The rubber had to meet the road. Did I really believe what I said I believed? Did I really believe that my child and I would someday go to heaven? If so, why was I in such fear of something that would take him from me? Of course, there would be the heartache of missing someone you love. But, that is what it would be – missing them for a short period of time before you would see them again.
Case was diagnosed with Hunter Syndrome in 2009 (more on that in a later post) and Tyson had a second seizure in June 2009 and a third in November 2009. He had 2 EEGs that did not enlighten us any more about why he was having seizures. But with no more seizures after that for a year, we thought we were “in the clear,” if that really exists.
Tyson was at school and started to not feel well, which we’ve discovered is his precursor for a seizure. He had been fine that morning and had not had a fever. But it came on quickly. Within an hour of him feeling a little bad and within 10 minutes of the school calling us, he had his seizure.
In the emergency room, he tested positive for the flu virus. Although he had had a flu vaccine this year, as he gets every year, he still had the flu. In prior seizures, he had had strep throat. In that interim year of no seizures, we had gotten Tyson’s tonsils removed to hopefully prevent him getting strep again (it lowers the risk about 2/3 but does not eliminate it). The enlarged tonsils had also been causing sleep apnea and frequent waking which can contribute to crossing the threshold into causing a seizure. So we thought we had lowered the seizure risk and addressed it as well as we could without having to put him on seizure medication (he had had one dose of Keppra after the second seizure and it did not go well).
So at this point, we have to accept that Tyson has a seizure disorder. Not a big deal, right? People have seizure disorders and function in normal life all the time. Yes. But sometimes, you just want one less thing to deal with, right? MPS is already a huge part of our life, our time, our energy, our emotion.
But what I have to remember is that I don’t have to “deal with it,” figure it all out, or handle it in my packaged and precise way. My call is to obedience. My call is turn the worries of the world over to my Lord, and to love my God, my family, my neighbors.
I am reminded, “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
Isn’t that the truth….
Last modified: December 31, 2017