Normalize
J has been taking MEAD tests daily now. Last week when we thought his voltage was coming down from 70 mv (the ideal healing range for the body), we thought we were on our way home, but he had an even higher MEAD reading on Monday at 73 mv. It then dipped down on Tuesday to 60, and now today went back up to 73.5 mv. Dr. Tennant has said that he has never seen a patient go over 70, so once again, J continues to set records and make the JIMSTRONG presence known. The daily MEAD readings seem like things are up and down, but we are waiting for Dr. T to input them into graphs and charts. The charts give us the ability to really see the whole picture of what J's body is really doing. Then, when we meet with Dr. T tomorrow, he can make a good decision whether to continue on with treatment on Monday or send us home. I don't know what I am leaning towards. I really want to be done with treatment and go home, but at the same time I want to know that J's body is really done healing and don't want to quit prematurely.
Texas has been really good to us. We honestly have not met one mean person here. It is beyond the "aloha spirit" here. People have gone out of their way to take care of us, give us directions or be so gracious and hospitable. The weather has been pretty tolerable in the high 70's and 80 degrees. Today, it went back down to the 65 degrees, so we bundled back up!
The Mavericks game was awesome. We had great seats in the bottom section, so we could see the enormity of the NBA players, both in the physical and the sensational. Nowitzki and Dampier are BIG boys! Mavs won 105 to 103 beating the Knicks in the last few minutes. The last few minutes were so exciting with everyone on their feet! It was surreal and a wonderful gift to have been there. Thank you, Mark Cuban!
A BIG shout out to the parentals here in Texas! My parents have been incredible. They have been the full time caretakers of all of us. My dad wakes up super early, so when the kids hear him out in the living room, they sneak out of bed (letting me sleep for one more hour) every morning. My dad also takes the kids to the playground everyday, that is right outside our back door, and runs them around. My mom has been cooking all the meals...breakfast, lunch, dinner and snacks inbetween. She has been making the most incredible, allergy free, organic, free range meals. J has gained 10 lbs in this past month and the kids have literally sprouted before our eyes. They have been cooking, cleaning, nannying, shopping, errand running and being emotional supports to us as well. On Saturdays, when we don't have to get up early for treatment, I actually get to sleep in. When I slept in until 10am, I realized it is the first time, since being pregnant five years ago, that I have been able to sleep in! Sleep is a beautiful thing. My sister and her husband are continuing to take care of both our households along with theirs back in Hawaii. So, we are VERY blessed to have so much help and physical support through all of this.
So, as great as Texas is, we are ready to head back home. I say I want our life back, but I am not sure how that will really happen. I feel like what we are returning to is unknown and will be very new in an old way. I am sure in going back to our house, our routine, etc...parts of it will feel familiar, yet part of me doesn't really know what the big picture of our lives will look like. Will our lives be "our" lives again, and in the same way? I don't think that is possible. And, I am waiting to just feel normal again. I don't know if returning to Hawaii will bring that feeling back or not, but just to feel normal again. To be thinking about the small, daily things, and not the life altering things would be a start.
For those of you who do not know, our daughter has severe, life threatening food allergies. She is allergic to wheat, gluten, eggs, dairy, all nuts, soy, beef, oats, sesame seeds and dust mites. Her symptoms range from immediate hives with contact, to eczema, to anaphylaxsis shock with ingestion. For instance, if you eat a sandwich and then touch her, she will immediately break out in hives where she was touched. We also have had several ER trips with her even when she was very young due to things she has accidentally eaten. Just to go out to eat a restaurant, we have to call ahead to find out what they cook with, how they cook, and if they use nuts. When we arrive, we have to wipe down everything she could come in contact with, put on a homeade chair covering, and dress her in long sleeves and long pants, and bring our own food for her. We have gotten glares and odd stares from other people thinking we are germaphobes or that I am just a neurotic mom! After four and a half years, our family and friends just know to wash their hands, when they come in the door, before touching our kids or anything in our house. And, it is just normal for us to wash hands after we eat anything, cover our airlines seats when we travel, and use separate pots and pans for cooking. Our life has just normalized in this way. It doesn't even feel like effort any more. But, our life has not just normalized in our physical routines, but emotionally too. It took awhile to get past all the emotions of how our tiny baby girl could have been dealt such a life of suffering. And, to get past the daily fears that if she accidentally ingested something with milk or eggs in it she could die. Now, we hardly think about her allergies on a daily basis...we just work within our system of safety. To outsiders, our life probably seems so restricted, but it has become normal to us.
I was thinking that the reason I can't normalize is because with cancer there is a fatality factor, but then I realized with food allergies that same factor exists. I had to get over the fear that if something was eaten by mistake, we could lose our little girl. I remember crying over her in her bed, while she was sleeping one night, and realizing that as much as I love her, GOD loves her even more. And, as much as, I her parent, wants to protect her...GOD is her parent too and how much more can he protect her. So, I surrendered my lack of trust to Him, and things normalized from there over time. Her body is still trying to heal, but my heart made leaps and bounds from that night. I guess, I am trying to do that with J as well. I guess, normalizing will come as we begin to break away from all of this...and once again, I find myself surrendering.
Team JIMSTRONG Contributors
Blake Inouye
Betty Winand
Texas has been really good to us. We honestly have not met one mean person here. It is beyond the "aloha spirit" here. People have gone out of their way to take care of us, give us directions or be so gracious and hospitable. The weather has been pretty tolerable in the high 70's and 80 degrees. Today, it went back down to the 65 degrees, so we bundled back up!
The Mavericks game was awesome. We had great seats in the bottom section, so we could see the enormity of the NBA players, both in the physical and the sensational. Nowitzki and Dampier are BIG boys! Mavs won 105 to 103 beating the Knicks in the last few minutes. The last few minutes were so exciting with everyone on their feet! It was surreal and a wonderful gift to have been there. Thank you, Mark Cuban!
A BIG shout out to the parentals here in Texas! My parents have been incredible. They have been the full time caretakers of all of us. My dad wakes up super early, so when the kids hear him out in the living room, they sneak out of bed (letting me sleep for one more hour) every morning. My dad also takes the kids to the playground everyday, that is right outside our back door, and runs them around. My mom has been cooking all the meals...breakfast, lunch, dinner and snacks inbetween. She has been making the most incredible, allergy free, organic, free range meals. J has gained 10 lbs in this past month and the kids have literally sprouted before our eyes. They have been cooking, cleaning, nannying, shopping, errand running and being emotional supports to us as well. On Saturdays, when we don't have to get up early for treatment, I actually get to sleep in. When I slept in until 10am, I realized it is the first time, since being pregnant five years ago, that I have been able to sleep in! Sleep is a beautiful thing. My sister and her husband are continuing to take care of both our households along with theirs back in Hawaii. So, we are VERY blessed to have so much help and physical support through all of this.So, as great as Texas is, we are ready to head back home. I say I want our life back, but I am not sure how that will really happen. I feel like what we are returning to is unknown and will be very new in an old way. I am sure in going back to our house, our routine, etc...parts of it will feel familiar, yet part of me doesn't really know what the big picture of our lives will look like. Will our lives be "our" lives again, and in the same way? I don't think that is possible. And, I am waiting to just feel normal again. I don't know if returning to Hawaii will bring that feeling back or not, but just to feel normal again. To be thinking about the small, daily things, and not the life altering things would be a start.
For those of you who do not know, our daughter has severe, life threatening food allergies. She is allergic to wheat, gluten, eggs, dairy, all nuts, soy, beef, oats, sesame seeds and dust mites. Her symptoms range from immediate hives with contact, to eczema, to anaphylaxsis shock with ingestion. For instance, if you eat a sandwich and then touch her, she will immediately break out in hives where she was touched. We also have had several ER trips with her even when she was very young due to things she has accidentally eaten. Just to go out to eat a restaurant, we have to call ahead to find out what they cook with, how they cook, and if they use nuts. When we arrive, we have to wipe down everything she could come in contact with, put on a homeade chair covering, and dress her in long sleeves and long pants, and bring our own food for her. We have gotten glares and odd stares from other people thinking we are germaphobes or that I am just a neurotic mom! After four and a half years, our family and friends just know to wash their hands, when they come in the door, before touching our kids or anything in our house. And, it is just normal for us to wash hands after we eat anything, cover our airlines seats when we travel, and use separate pots and pans for cooking. Our life has just normalized in this way. It doesn't even feel like effort any more. But, our life has not just normalized in our physical routines, but emotionally too. It took awhile to get past all the emotions of how our tiny baby girl could have been dealt such a life of suffering. And, to get past the daily fears that if she accidentally ingested something with milk or eggs in it she could die. Now, we hardly think about her allergies on a daily basis...we just work within our system of safety. To outsiders, our life probably seems so restricted, but it has become normal to us.
I was thinking that the reason I can't normalize is because with cancer there is a fatality factor, but then I realized with food allergies that same factor exists. I had to get over the fear that if something was eaten by mistake, we could lose our little girl. I remember crying over her in her bed, while she was sleeping one night, and realizing that as much as I love her, GOD loves her even more. And, as much as, I her parent, wants to protect her...GOD is her parent too and how much more can he protect her. So, I surrendered my lack of trust to Him, and things normalized from there over time. Her body is still trying to heal, but my heart made leaps and bounds from that night. I guess, I am trying to do that with J as well. I guess, normalizing will come as we begin to break away from all of this...and once again, I find myself surrendering.
Team JIMSTRONG Contributors
Blake Inouye
Betty Winand
posted by GODisgood at 10:23 PM
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