Breathing
Thank goodness for internet support groups! I sent a ranting, rambling, sad and depressing message to the email support group for Shwachman's that I belong to over the weekend. I got a lot of supportive messages but one message really saved my life.
The day after the kids' bone marrow biopsies, we met another SDS family in the waiting room while we were waiting to start Shelbie's infusion. Their son had just completed his biopsy. His mom emailed me tonight to let me know that our doctor has been gone on vacation this past week and won't be back until next week! She was also concerned about her son's results and after going through a few nurses and some red tape, was able to get another doctor to sign off on the results and send her hard copies and turns out his news wasn't as good as they were hoping for.
It brings me a little relief, a little breathing room to know that she is out of town but it doesn't make this waiting any easier. I find that I can become very selfish when I'm waiting for test results like this. I forget that doctors have a family, spouses, a life outside of the hospital and I am not the center of their Universe. I know...it sounds very shallow but that's how I feel sometimes. I just wonder if they have ever been the parent of a sick child or in my case, sick children who worry all the day long about the damage done everyday by a disease that no one can seem to slow down or stop. Waiting 6 weeks or more for results is kind of unfair and compound that with a virus that won't go away and we are...well, going NUTS!
We made it through the weekend but it was busy and tiring. I always think I am handling things okay until I start having wacky dreams and that's how I know the stress is getting to me. Last night, I had a dream that my hair just started dropping out in big patches. I looked up the meaning of that and it means that I am dealing with situations that are completely out of my control! Wow...pretty accurate! I found myself, throughout the day getting all choked up and emotional just out of the blue. When I think about living through more and more years of declining health in my kids, it becomes more overwhelming than it use to be. I always thought things would get easier as they got older but boy was I wrong!
Even though this is my blog, my thoughts, I still feel bad for being a downer lately and feel like I need to apologize. I am still not feeling 100% so that makes it even more difficult to handle little setbacks like we've experienced this week. On a happier note...We get to see Spencer tomorrow!!! I can hardly wait! I've missed that boy of mine! He has been vacationing up in Canada with his friend's family and has been gone over a week! I can hardly wait to give him a big hug and kiss. That will for sure cheer us all up.
The day after the kids' bone marrow biopsies, we met another SDS family in the waiting room while we were waiting to start Shelbie's infusion. Their son had just completed his biopsy. His mom emailed me tonight to let me know that our doctor has been gone on vacation this past week and won't be back until next week! She was also concerned about her son's results and after going through a few nurses and some red tape, was able to get another doctor to sign off on the results and send her hard copies and turns out his news wasn't as good as they were hoping for.
It brings me a little relief, a little breathing room to know that she is out of town but it doesn't make this waiting any easier. I find that I can become very selfish when I'm waiting for test results like this. I forget that doctors have a family, spouses, a life outside of the hospital and I am not the center of their Universe. I know...it sounds very shallow but that's how I feel sometimes. I just wonder if they have ever been the parent of a sick child or in my case, sick children who worry all the day long about the damage done everyday by a disease that no one can seem to slow down or stop. Waiting 6 weeks or more for results is kind of unfair and compound that with a virus that won't go away and we are...well, going NUTS!
We made it through the weekend but it was busy and tiring. I always think I am handling things okay until I start having wacky dreams and that's how I know the stress is getting to me. Last night, I had a dream that my hair just started dropping out in big patches. I looked up the meaning of that and it means that I am dealing with situations that are completely out of my control! Wow...pretty accurate! I found myself, throughout the day getting all choked up and emotional just out of the blue. When I think about living through more and more years of declining health in my kids, it becomes more overwhelming than it use to be. I always thought things would get easier as they got older but boy was I wrong!
Even though this is my blog, my thoughts, I still feel bad for being a downer lately and feel like I need to apologize. I am still not feeling 100% so that makes it even more difficult to handle little setbacks like we've experienced this week. On a happier note...We get to see Spencer tomorrow!!! I can hardly wait! I've missed that boy of mine! He has been vacationing up in Canada with his friend's family and has been gone over a week! I can hardly wait to give him a big hug and kiss. That will for sure cheer us all up.
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