Are you ready?
This week, I heard someone ask Shelbie if she was ready for whatever was coming her way? She nodded yes. I can't seem to get that question out of my mind. What would my answer be if the question had of been asked of me? I am afraid I would have had to say "no". I try to be prepared for 'the worst case' but when the worst case happens, I always feel blindsided. I'm not sure you can ever be prepared for all the emotion, fatigue, frustration and confusion that comes with any trial though we try to do our best. When we leave the walls of our home, we try to front our way through but that can often be quite a disconnect from the wrestling that takes place with a situation on any given day inside our home and hearts. It's just not that easy to be ready.
I guess I find some solace in remembering how I have handled the worst things that have happened so far. I always thought the worst thing I would ever have to face was being divorced; single and all alone. It felt hopeless for me to make a living and support my kids. Nearly 6 years later, I'm not the best provider financially but I have survived and aside from moments, I have done pretty good for myself, in fact I have probably surprised a few people!
Losing my job was the next worst thing I couldn't imagine surviving. Ask a few close people how I handled that news and they will tell you I did not handle that first week with much grace. It seemed impossible to handle and overwhelming to know how I could manage financially. It's been almost 18 months and I am still trudging along...albeit very tired, but still trudging.
So, now to our current situation of poor health and other personal things I haven't mentioned, it's hard to imagine being ready for anything worse though I'm pretty sure there is more to come and overcome. No one these days will escape the worst thing I'm afraid. I have learned one thing, each trial we go through, prepares us for the next one. I guess that's where the preparation lies. Whatever comes next, I have to believe I have already received all I will need to get us through.
We are anticipating a big week. I should hear on the kids' mitochondrial testing. The results have been back for nearly two weeks but the doctor has been at Hematology conferences and she said the results were very complex and wanted to spend more time before discussing them. This is week three of the IVIG infusion for Shelbie. The medication generally lasts 3 weeks so we could see a crash of the platelets this week. Her big problem the last few days has definitely been her hemoglobin. It is so low that she can hardly do a thing. One 1/2 hour outing sends her to bed for hours. Her white count is nothing to speak of either so it's been challenging. The third thing we are looking at this week is her IgG levels (immunoglobulin) If that level is low, then the option becomes to place a 'port' in Shelbie and do IVIG infusions indefinitely, maybe the rest of her life. The port would allow a less painful way to do the infusion and take blood but requires a surgery to place the catheter. Lots happening this week, should prove to be very interesting...as if we can stand anymore interest in our life! ;-)
I guess I find some solace in remembering how I have handled the worst things that have happened so far. I always thought the worst thing I would ever have to face was being divorced; single and all alone. It felt hopeless for me to make a living and support my kids. Nearly 6 years later, I'm not the best provider financially but I have survived and aside from moments, I have done pretty good for myself, in fact I have probably surprised a few people!
Losing my job was the next worst thing I couldn't imagine surviving. Ask a few close people how I handled that news and they will tell you I did not handle that first week with much grace. It seemed impossible to handle and overwhelming to know how I could manage financially. It's been almost 18 months and I am still trudging along...albeit very tired, but still trudging.
So, now to our current situation of poor health and other personal things I haven't mentioned, it's hard to imagine being ready for anything worse though I'm pretty sure there is more to come and overcome. No one these days will escape the worst thing I'm afraid. I have learned one thing, each trial we go through, prepares us for the next one. I guess that's where the preparation lies. Whatever comes next, I have to believe I have already received all I will need to get us through.
We are anticipating a big week. I should hear on the kids' mitochondrial testing. The results have been back for nearly two weeks but the doctor has been at Hematology conferences and she said the results were very complex and wanted to spend more time before discussing them. This is week three of the IVIG infusion for Shelbie. The medication generally lasts 3 weeks so we could see a crash of the platelets this week. Her big problem the last few days has definitely been her hemoglobin. It is so low that she can hardly do a thing. One 1/2 hour outing sends her to bed for hours. Her white count is nothing to speak of either so it's been challenging. The third thing we are looking at this week is her IgG levels (immunoglobulin) If that level is low, then the option becomes to place a 'port' in Shelbie and do IVIG infusions indefinitely, maybe the rest of her life. The port would allow a less painful way to do the infusion and take blood but requires a surgery to place the catheter. Lots happening this week, should prove to be very interesting...as if we can stand anymore interest in our life! ;-)
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