UPSIDE DOWN WORLD
So much has happened since my last post. It all started when my mom started falling apart in August of last year. I wrote a short post on that, but the breakdown is my mom flatlined on us, and they sent her home without knowing what was wrong with her. Many Dr. appts later and a trip to Baylor in January....they still don't know! I see her growing weaker every day even tho' she tries to put on a good front that she is ok....I KNOW better...and the worry and fear I see in my Daddy's eyes only confirms what I already know. UNLESS THEY CAN FIGURE OUT WHAT IS WRONG WITH HER SOON, SHE WON'T BE WITH US MUCH LONGER.
In early December, Samantha's new Dr. tells us that she not only has Angelman Syndrome, but also West Syndrome AND a clinical diagnosis of CP. That doesn't change anything with her as far as how much we love her or will continue to make sure she has the best quality of life we can achieve for her, but the big blow to my equilibrium is the fact that is cuts her life expectancy WAY down! 61% of children with West Syndrome die at or before the age of 10. Close to 90% don't make it past age 20. Sammi just turned 7. She is my first grand child. She is beautiful. She is precious to me. She is so very special, and I can NOT cope even with the THOUGHT of losing her at an early age!
In mid-December, my daughter, Melissa, found out she was VERY unexpectedly pregnant again. All children are a gift from God, and Melissa is my only shot at having grandchildren, so having another grandbaby doesn't upset me at all. However, Melissa has fibromyalgia, and her body has enough problems on a day to day basis, so I am very worried that carrying this baby is going to be real hard on her body.
In late December, my husband, Tony (who very seldom ever gets sick) gets sick with a stomach virus and goes to the Dr. The Dr. asks a lot of questions, sends him for some further testing, and we find out he has colon CANCER. Surgery is performed on January 10th and they think they got it all, but it is stage 3 cancer because it was found in his lymph nodes also. He had a porta-a-cath surgically inserted into his chest yesterday, and his chemo treatments start on the 12th of February. Six months worth of chemo is what he has to look forward to. In the mean time, he has to go on long-term disability from work, which will cut his paycheck down to 60%. Of all the things, that is probably his biggest worry, but I feel like it is the least of mine.
I know in my head that things could be much, much worse....but my heart is screaming ENOUGH!!!!!! I am ready for Calgon to "TAKE ME AWAY!", But instead, I will gather up and hide my shattered emotions, pull myself up by my bootstraps, get a grip, and try to deal with things one day at a time...one hour at a time....one minute at a time, if I have to.
And I DO have to, because my whole world has been turned upside down. All I can say is that it is a GOOD thing that I am anchored in CHRIST, because I am losing my grip on the people I hold dearest in my heart, and yet again, my faith is God is the only thing that is going to help me get through these crises.
To anyone who reads this.....prayer is ALWAYS appreciated.
In early December, Samantha's new Dr. tells us that she not only has Angelman Syndrome, but also West Syndrome AND a clinical diagnosis of CP. That doesn't change anything with her as far as how much we love her or will continue to make sure she has the best quality of life we can achieve for her, but the big blow to my equilibrium is the fact that is cuts her life expectancy WAY down! 61% of children with West Syndrome die at or before the age of 10. Close to 90% don't make it past age 20. Sammi just turned 7. She is my first grand child. She is beautiful. She is precious to me. She is so very special, and I can NOT cope even with the THOUGHT of losing her at an early age!
In mid-December, my daughter, Melissa, found out she was VERY unexpectedly pregnant again. All children are a gift from God, and Melissa is my only shot at having grandchildren, so having another grandbaby doesn't upset me at all. However, Melissa has fibromyalgia, and her body has enough problems on a day to day basis, so I am very worried that carrying this baby is going to be real hard on her body.
In late December, my husband, Tony (who very seldom ever gets sick) gets sick with a stomach virus and goes to the Dr. The Dr. asks a lot of questions, sends him for some further testing, and we find out he has colon CANCER. Surgery is performed on January 10th and they think they got it all, but it is stage 3 cancer because it was found in his lymph nodes also. He had a porta-a-cath surgically inserted into his chest yesterday, and his chemo treatments start on the 12th of February. Six months worth of chemo is what he has to look forward to. In the mean time, he has to go on long-term disability from work, which will cut his paycheck down to 60%. Of all the things, that is probably his biggest worry, but I feel like it is the least of mine.
I know in my head that things could be much, much worse....but my heart is screaming ENOUGH!!!!!! I am ready for Calgon to "TAKE ME AWAY!", But instead, I will gather up and hide my shattered emotions, pull myself up by my bootstraps, get a grip, and try to deal with things one day at a time...one hour at a time....one minute at a time, if I have to.
And I DO have to, because my whole world has been turned upside down. All I can say is that it is a GOOD thing that I am anchored in CHRIST, because I am losing my grip on the people I hold dearest in my heart, and yet again, my faith is God is the only thing that is going to help me get through these crises.
To anyone who reads this.....prayer is ALWAYS appreciated.
posted by brenda at 11:16 PM
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