What happens next?
Last night, I got to thinking about the road we have been on the last 18 years. Sam and I went to the pool last night late. As I sat in the hot tub and watched him splashing, diving and swimming as fast as he could from one end of the pool to the other, I was amazed that this little guy so much smaller than his chronological age, who has had more challenges and struggles in 12 years than my 41 years could have so much energy at 10:00 at night. It's hard to believe that he suffers from bone marrow failure, it's hard to believe that there is some uninvited guest messing with his body that seems so strong.
I remember clearly that day 14 years ago when we headed down to Salt Lake for yet another doctor visit. The situation was strange. Shelbie was being sent to University of Utah to see an immunologist and Spencer was seeing a gastroenterologist at Primary Children's. Their visits were only 20 minutes apart which meant I stayed with one and my husband went with the other. This is where it all officially started. Ya, there had been plenty of hospital stays, doctor visits, rides in ambulances, even several resuscitations but no one could figure out what was happening.
Again, I sat in the waiting room with my two little kids, Shelbie 4 and Spencer 2 at my feet and couldn't imagine that there could be anything wrong with them. They were happy, they played, they smiled. I somehow felt that all the weird illnesses, infections and weight loss would stop on command just because a guy in some lab declared that all results were negative.
The results were not normal. I can't forget when the GI doc said that there were only two diseases to cause pancreatic insufficiency cystic fibrosis and shwachman diamond syndrome. We had already done all the cf testing and it was negative. She said, "Your children have Shwachmand Diamond Syndrome." I couldn't believe her. We left with a description of what our life would become. Bone marrow biopsies, pancreatic insufficiency, failure to thrive, recurrent illness, learning disabilities and the list went on. I read this with a firm belief that there had been a mistake yet it all sounded so familiar. It was as if they were writing about my kids!
It feels a little like deja vu. I have tried to avoid the internet. You know me, searching to learn all I can about diseases doctors think we have. Mitochondrial disease is not one I want my kids to have, like I have a choice. The more I read, the more it speaks of my kids. The more pieces begin to fall into place and explain all the strange things that have happened especially lately like total failure of Spencer's gallbladder, Sam's intessception last year, Shelbie's memory loss, bone and muscle pain. It's hard to wait for our pending bone marrow biopsies. It's hard not to think of how the kids will be challenged in the days, weeks, months and years to come. It's all really hard but then, I experience moments of clarity like today as I listened to conference and was spiritually fed to keep my faith strong and trust in the Lord. Despite how hard things are, I get excited to think about all that God is going to accomplish in our lives. I can't wait to see what happens next!
I remember clearly that day 14 years ago when we headed down to Salt Lake for yet another doctor visit. The situation was strange. Shelbie was being sent to University of Utah to see an immunologist and Spencer was seeing a gastroenterologist at Primary Children's. Their visits were only 20 minutes apart which meant I stayed with one and my husband went with the other. This is where it all officially started. Ya, there had been plenty of hospital stays, doctor visits, rides in ambulances, even several resuscitations but no one could figure out what was happening.
Again, I sat in the waiting room with my two little kids, Shelbie 4 and Spencer 2 at my feet and couldn't imagine that there could be anything wrong with them. They were happy, they played, they smiled. I somehow felt that all the weird illnesses, infections and weight loss would stop on command just because a guy in some lab declared that all results were negative.
The results were not normal. I can't forget when the GI doc said that there were only two diseases to cause pancreatic insufficiency cystic fibrosis and shwachman diamond syndrome. We had already done all the cf testing and it was negative. She said, "Your children have Shwachmand Diamond Syndrome." I couldn't believe her. We left with a description of what our life would become. Bone marrow biopsies, pancreatic insufficiency, failure to thrive, recurrent illness, learning disabilities and the list went on. I read this with a firm belief that there had been a mistake yet it all sounded so familiar. It was as if they were writing about my kids!
It feels a little like deja vu. I have tried to avoid the internet. You know me, searching to learn all I can about diseases doctors think we have. Mitochondrial disease is not one I want my kids to have, like I have a choice. The more I read, the more it speaks of my kids. The more pieces begin to fall into place and explain all the strange things that have happened especially lately like total failure of Spencer's gallbladder, Sam's intessception last year, Shelbie's memory loss, bone and muscle pain. It's hard to wait for our pending bone marrow biopsies. It's hard not to think of how the kids will be challenged in the days, weeks, months and years to come. It's all really hard but then, I experience moments of clarity like today as I listened to conference and was spiritually fed to keep my faith strong and trust in the Lord. Despite how hard things are, I get excited to think about all that God is going to accomplish in our lives. I can't wait to see what happens next!
Comments
Post a Comment