Random Thoughts
Lately, I've really been feeling overwhelmed with all that is going on. It seems like every time we turn around, there is a new problem to deal with. I have been thinking how much easier it would be to live under a rock and not have to face people. I think that is where the biggest stress is for me.
As I'm out in the world, especially my world, I see people I know everywhere I go. There is always that inevitable question, "How are the kids doing?" That question sends my mind racing. Do I tell them how things really are or just glaze over it all and pretend like we are fine? Do they really care how we are or is it just a moment of cordial thought? I usually try to gloss things over and that works until from nowhere, a really big problem comes up and then people are left wondering what in the heck happened because I am always saying things are fine!
It gets embarrassing to have to admit what we face in any given week. People look at me with shock and awe and I hate that look, that feeling. I realized that the way I view my life and the way others view my life are two polar opposites. I see that we are dealing with a chronic disease. It is not going to go away, there is no miraculous drink, pills, potions or magic berries grown in the Amazon forest that is going to change what is happening, though there are some who believe those kinds of things exist...believe me, I've been hit up to try everything! Other people see us as a normal family with real bizarre things going on, hence, it is overwhelming and unbelievable to hear about our lives.
Looking at this in the context of 'NORMAL' then ya, we are messed up and this life of ours is CRAZY!!! Looking at it in the context of Chronic Illness then we really become quite normal. The reality is, the body that my children were given are not functioning, and are in fact deteriorating. There is going to be a breakdown of certain functions that the rest of us take for granted but it's normal in the process of disease.
I guess what I'm trying to say is, we really aren't that strange and we really are use to this crazy life. Most of those who read this blog are only catching the last 6 months of our journey and it seems out of control but this is the same journey we have been on for nearly 19 years. 19 years of this! Some years were better than others, I'll admit but really this is nothing new for us. Truthfully, it has become more complex and more organs suffer and I worry more about losing my kids to this disease before they can find a cure but still, it is what it has always been.
I think the more I can remember this concept, the more comfortable I will feel sharing our life with others in public. I hope others we meet along the way will not be so scared of us and so overwhelmed with our story. It's our normal! I have more thoughts on this and will post as I sort them all out. For now, it's time to take Shelbie to the hospital. She just had a bleeding episode and petichae is showing up...praying her platelets haven't crashed already! sigh.....
As I'm out in the world, especially my world, I see people I know everywhere I go. There is always that inevitable question, "How are the kids doing?" That question sends my mind racing. Do I tell them how things really are or just glaze over it all and pretend like we are fine? Do they really care how we are or is it just a moment of cordial thought? I usually try to gloss things over and that works until from nowhere, a really big problem comes up and then people are left wondering what in the heck happened because I am always saying things are fine!
It gets embarrassing to have to admit what we face in any given week. People look at me with shock and awe and I hate that look, that feeling. I realized that the way I view my life and the way others view my life are two polar opposites. I see that we are dealing with a chronic disease. It is not going to go away, there is no miraculous drink, pills, potions or magic berries grown in the Amazon forest that is going to change what is happening, though there are some who believe those kinds of things exist...believe me, I've been hit up to try everything! Other people see us as a normal family with real bizarre things going on, hence, it is overwhelming and unbelievable to hear about our lives.
Looking at this in the context of 'NORMAL' then ya, we are messed up and this life of ours is CRAZY!!! Looking at it in the context of Chronic Illness then we really become quite normal. The reality is, the body that my children were given are not functioning, and are in fact deteriorating. There is going to be a breakdown of certain functions that the rest of us take for granted but it's normal in the process of disease.
I guess what I'm trying to say is, we really aren't that strange and we really are use to this crazy life. Most of those who read this blog are only catching the last 6 months of our journey and it seems out of control but this is the same journey we have been on for nearly 19 years. 19 years of this! Some years were better than others, I'll admit but really this is nothing new for us. Truthfully, it has become more complex and more organs suffer and I worry more about losing my kids to this disease before they can find a cure but still, it is what it has always been.
I think the more I can remember this concept, the more comfortable I will feel sharing our life with others in public. I hope others we meet along the way will not be so scared of us and so overwhelmed with our story. It's our normal! I have more thoughts on this and will post as I sort them all out. For now, it's time to take Shelbie to the hospital. She just had a bleeding episode and petichae is showing up...praying her platelets haven't crashed already! sigh.....
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