You know, it's funny...(not funny "haha"), that my child had cancer. That's not a typo...she does NOT have cancer, she HAD it. Be warned , these thoughts came to me around 2am this morning while caring for her here in the hospital. I think of my spirituality as an onion. Yes, I know for you Shrek fans out there this may shound familiar. Nothing like exhaustion to make you think of spirituality and Shrek at the same time.
When we first learned Bela was sick we were told that "it's amazing what you can get used to." After the shock of the news of her having Leukemia wore off, we got used to the waiting...then she kept getting sicker and sicker, we didn't like it, but it wasn't so shocking anymore. Then she started getting "better". Diahrea, vominting, fevers and a feeding tube became just part of our lives. When we first started on this journey, I have to admit, I was on the very outermost layer of the spiritual onion.
Of course, when tragedy struck, I quickly upgraded to the inner most circle of trust within my relationship with God. As Bela started to get better, looking back I realize that I prayed less, read my Bible less, and just accepted as"normal" whatever would happen to her as a result of her chemo. Then she would go back into the hospital after being home for two weeks and we'd start all over again. ";Please God just let her live, "I'd beg" . Back to the center ring of the onion. But really, should we ever get "used to" our trials? Should we only be at "the center of the spiritual onion" when someone we love is suffering or on their death bed?
I realized for many of you out there I'm "preaching to the choir". Why is that? How in the world can I be toward the outer ring because "oh, Bela's fine..she just has a little infection...blood in the stool, no immune system at all, in isolation..." and I spend less time praying and studying the Bible. Only when she can't sleep at night, she's fussy, has fevers, oxygen...the "really bad stuff" she had at the beginning...I'm comparing...Our trials become leveled..."Well, she's sick in a hopsital bed with Leukemia, but she's not as bad as she was 5 months ago!!! She'll be fiiiiiiiiine".
I am reminded everyday that there are some families who are not rejoicing over the healing of their child right now. There are two patients that I know of that may have to be transfered to the PICU, which means the child has digressed to such a critical state that the doctors on this floor cannot do anything more for him/her at this point.
Bela had to go to the PICU twice, the first time for just a couple of days, but the second time for one week. Praise God that He healed her. I don't ever want to forget how close we came to losing her. I've learned that every day is a gift. We don't ever want to be further from God just because everything is "hunky dory".
But what about those families who's children aren't healed? For whom there is no miracle? Is it just the way of life, as it has been for centuries? How do those families reconcile their child's death with their faith? I don't know. I've not been in that situation. I don't have an answer, but all I can say is that
I am so grateful to God for healing Bela and that she gets better everyday. However, I know we came so close to that not being our reality and am humbled that only by His grace.
Bela will receive her 3rd(?) platelet transfusion today of this round. I've lost count of how many blood and platelet transfusions she's had since August. They, and their donors, literally have saved her life. I wish I could meet each of her donors and at least give them a huge hug and my words of gratitude.
She is recovering from a C-diff infection and a cold. The C-diff causes her to have lots of loose stools, resulting in tears in the skin in her diaper area, which leads to bleeding in the stools. The doctors aren't worried, it's all part of having c-diff. She is eating and sleeping and playing well. Seems like her blood counts are starting to make their upward trend. She also has a bad "ringworm" like rash on her face and the anti-fungal cream isn't working. Hopefully today we find out if there's another couse of action the doctors can take to cure it.
Thanks again to everyone for all of their prayers!!! Your encouragment and love has gotten us through this.
May we all always stay only closest to the centermost ring of the onion.
When we first learned Bela was sick we were told that "it's amazing what you can get used to." After the shock of the news of her having Leukemia wore off, we got used to the waiting...then she kept getting sicker and sicker, we didn't like it, but it wasn't so shocking anymore. Then she started getting "better". Diahrea, vominting, fevers and a feeding tube became just part of our lives. When we first started on this journey, I have to admit, I was on the very outermost layer of the spiritual onion.
Of course, when tragedy struck, I quickly upgraded to the inner most circle of trust within my relationship with God. As Bela started to get better, looking back I realize that I prayed less, read my Bible less, and just accepted as"normal" whatever would happen to her as a result of her chemo. Then she would go back into the hospital after being home for two weeks and we'd start all over again. ";Please God just let her live, "I'd beg" . Back to the center ring of the onion. But really, should we ever get "used to" our trials? Should we only be at "the center of the spiritual onion" when someone we love is suffering or on their death bed?
I realized for many of you out there I'm "preaching to the choir". Why is that? How in the world can I be toward the outer ring because "oh, Bela's fine..she just has a little infection...blood in the stool, no immune system at all, in isolation..." and I spend less time praying and studying the Bible. Only when she can't sleep at night, she's fussy, has fevers, oxygen...the "really bad stuff" she had at the beginning...I'm comparing...Our trials become leveled..."Well, she's sick in a hopsital bed with Leukemia, but she's not as bad as she was 5 months ago!!! She'll be fiiiiiiiiine".
I am reminded everyday that there are some families who are not rejoicing over the healing of their child right now. There are two patients that I know of that may have to be transfered to the PICU, which means the child has digressed to such a critical state that the doctors on this floor cannot do anything more for him/her at this point.
Bela had to go to the PICU twice, the first time for just a couple of days, but the second time for one week. Praise God that He healed her. I don't ever want to forget how close we came to losing her. I've learned that every day is a gift. We don't ever want to be further from God just because everything is "hunky dory".
But what about those families who's children aren't healed? For whom there is no miracle? Is it just the way of life, as it has been for centuries? How do those families reconcile their child's death with their faith? I don't know. I've not been in that situation. I don't have an answer, but all I can say is that
I am so grateful to God for healing Bela and that she gets better everyday. However, I know we came so close to that not being our reality and am humbled that only by His grace.
Bela will receive her 3rd(?) platelet transfusion today of this round. I've lost count of how many blood and platelet transfusions she's had since August. They, and their donors, literally have saved her life. I wish I could meet each of her donors and at least give them a huge hug and my words of gratitude.
She is recovering from a C-diff infection and a cold. The C-diff causes her to have lots of loose stools, resulting in tears in the skin in her diaper area, which leads to bleeding in the stools. The doctors aren't worried, it's all part of having c-diff. She is eating and sleeping and playing well. Seems like her blood counts are starting to make their upward trend. She also has a bad "ringworm" like rash on her face and the anti-fungal cream isn't working. Hopefully today we find out if there's another couse of action the doctors can take to cure it.
Thanks again to everyone for all of their prayers!!! Your encouragment and love has gotten us through this.
May we all always stay only closest to the centermost ring of the onion.
Laura, such an amazing post, full of utter honesty and truth we can ALL relate to! Our trials and attitude are all relative but in each one we always have a choice:draw near to God and devour the WORD or not, and especially when we're in the 'home stretch'! That seems to be a basic human response when things start looking up or going very well! But it would be wonderful if we could keep that fountain flowing all the time. That is actually a goal of mine this year-to not draw back! We are so very happy and grateful to God He has healed Bela and done wonderful miracles for her!
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