What if I don't make the Cheer-leading squad?
This has not been a fun week at all. I would say I wish it was over but then it would just be another week so I'm trying to just...Count it all JOY; my new mantra for the year.
I have been thinking about all the ways my life is different from the mom- next- door, figuratively speaking of course. The 'mom-next-door' hears her daughter say, "What if I don't make the cheer-leading squad?" or from her son, "What if I don't make the baseball team?" ya know, the normal, day to day worries a teenager has.
I was gone yesterday from mid afternoon until later in the evening tending to a friend who had to be transported to the hospital via ambulance. I had to wait there until someone from the family was able to get there. When I got home, Sam had just gotten home from his gymnastics class and he was in rough shape.
Mitochondrial disease causes high lactate levels and all three of the kids have what is called Clonus. It's a neurological disease that starts in the brain but shows up in the lower limbs. When they flex their leg or their foot, the brain doesn't tell the muscle to contract properly so you end up with these jerking, spastic motions. Most people don't notice it on most days but they have these little muscle "seizures" that contract and tense their muscles about 5-7 per minute all day, every day.
So, because Sam over did it at the gym, he was having one monster episode of clonus. He could barely walk without his gait being jerky and terrifyingly visual. I tried to get it on video but it I couldn't get a clear picture. Of all the kids, he has the highest levels of lactate and it can be very serious. I think probably his levels went up yesterday because of the exertion, but I'm not doctor and at 9:30 at night, I didn't have one at my disposal. He was freaking out just a bit. "Mom", he said,"What if I don't get better and can't walk normal again?" You don't hear that everyday.
Then, Spencer came home shortly after Sam was resting and calm. He had been at his friend's house where they had an alternative medicine guy up there working on their family. He knows Spencer and was asking about his health. Spencer explained the Cytomegalovirus and the fact that his white count has been really high. Thanks to this guy, he told Spencer that it means his body is fighting a horrible infection and he's losing.
He also told him it could be leukemia. Hey thanks mister...that was helpful information.
So the first thing Spencer says is, "Mom, what if I have leukemia? Can we move my bone marrow biopsy date up? I don't think we should be waiting another month. Something's wrong with me!"
Ahhhh.....breathing, breathing...."Yes Spencer, something is wrong with you but you don't have leukemia. You have Shwachman Diamond Syndrome and Mitochondrial disease remember? You do have an infection and yes your white count is abnormally high but it's coming down and your infection seems to be going dormant. You are okay. You will be okay and the bone marrow biopsies will come soon enough."
Last night, I just wished the questions were easy like making the sports team, asking a girl out, but they are never quite that easy. It's okay. After some good long talks, everyone had a better perspective and we are rolling along today.
I hate the hard questions but I love them too. We communicate better than we probably would if we were normal. I have great moments that I can connect with my kids and that is a good feeling at the end of a very long day. They are going to be okay...but I am ready for a new week.
I have been thinking about all the ways my life is different from the mom- next- door, figuratively speaking of course. The 'mom-next-door' hears her daughter say, "What if I don't make the cheer-leading squad?" or from her son, "What if I don't make the baseball team?" ya know, the normal, day to day worries a teenager has.
I was gone yesterday from mid afternoon until later in the evening tending to a friend who had to be transported to the hospital via ambulance. I had to wait there until someone from the family was able to get there. When I got home, Sam had just gotten home from his gymnastics class and he was in rough shape.
Mitochondrial disease causes high lactate levels and all three of the kids have what is called Clonus. It's a neurological disease that starts in the brain but shows up in the lower limbs. When they flex their leg or their foot, the brain doesn't tell the muscle to contract properly so you end up with these jerking, spastic motions. Most people don't notice it on most days but they have these little muscle "seizures" that contract and tense their muscles about 5-7 per minute all day, every day.
So, because Sam over did it at the gym, he was having one monster episode of clonus. He could barely walk without his gait being jerky and terrifyingly visual. I tried to get it on video but it I couldn't get a clear picture. Of all the kids, he has the highest levels of lactate and it can be very serious. I think probably his levels went up yesterday because of the exertion, but I'm not doctor and at 9:30 at night, I didn't have one at my disposal. He was freaking out just a bit. "Mom", he said,"What if I don't get better and can't walk normal again?" You don't hear that everyday.
Then, Spencer came home shortly after Sam was resting and calm. He had been at his friend's house where they had an alternative medicine guy up there working on their family. He knows Spencer and was asking about his health. Spencer explained the Cytomegalovirus and the fact that his white count has been really high. Thanks to this guy, he told Spencer that it means his body is fighting a horrible infection and he's losing.
He also told him it could be leukemia. Hey thanks mister...that was helpful information.
So the first thing Spencer says is, "Mom, what if I have leukemia? Can we move my bone marrow biopsy date up? I don't think we should be waiting another month. Something's wrong with me!"
Ahhhh.....breathing, breathing...."Yes Spencer, something is wrong with you but you don't have leukemia. You have Shwachman Diamond Syndrome and Mitochondrial disease remember? You do have an infection and yes your white count is abnormally high but it's coming down and your infection seems to be going dormant. You are okay. You will be okay and the bone marrow biopsies will come soon enough."
Last night, I just wished the questions were easy like making the sports team, asking a girl out, but they are never quite that easy. It's okay. After some good long talks, everyone had a better perspective and we are rolling along today.
I hate the hard questions but I love them too. We communicate better than we probably would if we were normal. I have great moments that I can connect with my kids and that is a good feeling at the end of a very long day. They are going to be okay...but I am ready for a new week.
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