I'm feeling alone today. My husband was home but there was more to pick up when I tidied the house. Every time he turned the corner, I was back in charge of everybody. This didn't feel like a break or extra help, it felt like more work.
I took my baby and middle daughter for a walk this afternoon. I made a commitment to myself to walk everyday. walking gives me time to think or brood or pray. I was thinking about how someone I know, recently inherited a lot of money. I thought what if we inherited a lot of money? We could pay off our debt, enroll our child in the school we want her to go to, put some in savings, build the extra bedroom we want. It would be nice to have some sense of peace in our lives.
God has provided for us. We did inherit some money out of the blue awhile ago. We did pay some debt down and put some in savings. but its never enough. we always could use more.
Before all of this happened with our youngest daughter and her diagnosis, I was trying to decide what I wanted to do for my career. I have an undergraduate degree in Comparative Religious Studies and Anthropology. I loved to travel and learn about other cultures. This is what led us to India years ago. Then Our oldest daughter started to have trouble in school when we enrolled her upon our return to America. She was so smart, but not keeping up. This led me to a long search for answers and more questions as to how to help kids succeed in school when they learn differently. This led to my master's degree in Special Education. Now I was a stay at home mom. something I had always wanted to be. I had desperately prayed for my children. But I found myself still wanting to return to an academic world. I tossed around ideas of graduate school. But never sure of how to narrow my interests. so as I type my blog, I think I have finally found a great outlet for myself to be able to write all the essays that have been sitting inside me for years.
Friends of mine have talked about their prayer closets. A place to hide away by yourself and pour your heart out to God. In our small house, there are not many places to hide away in. I find I do my best thinking in the shower. I cry out to God in there drowned out by the loud roar of the water. God has spoken to me through analogies, people, and dreams. I constantly seek his guidance.
It's 9:43 pm and I feel like our days are just too short. We are to seek God's priorities for each day and only do those, but even with just home management, here I am late finally taking time for myself. This is a season, I know, but I need more breaks.
Then I had the thought today, what if when my diabetic daughter is 35 and is careless and doesn't monitor her sugar levels and what if something bad happened? A friend told us how they knew someone that passed away because they didn't manage their diabetes well. How will I be able to let go and trust her to take care of herself so that this disease doesn't became fatal?
I still feel like not a lot of people understand what it is to live a new life like this. We, in this club, know how horrendous it can be. But other well wishers have already faded off into the wood work. I feel like saying "But we are still going through a lot! We still need help too! " But no one hears. well some do. I can't look a gift horse in the mouth, but I find myself getting jealous when I see someone else in need and they get help offered left and right and I feel like we are already forgotten.
I feel like I'm whining and complaining. I guess I am. I am. I still feel so burdened. I feel like Moses telling God that I have a speech impediment. I'm not the one to give a speech, let alone talk to the king! I'm not the guy for the job. That's me. I want the job but I don't want the job. It's so much responsibility.
I'm actually taking our sweetie for a speech assessment tomorrow. We had been concerned about her speech development for about a year now and are finally able to get her formally assessed. Again, it feels like it pails in comparison to diabetes. but it is still important.
new hat for tomorrow. my special ed hat. no I don't see social awkwardness but she is speech delayed. but interestingly enough, since she is being treated for diabetes now, she is talking a lot more. she is definitely feeling better and maybe has more to say.
She is only three. what else does she want to say?
She loves to play with her dolls and organize her toys. She loves to sit with paper and have us draw our family out one by one and then cut them out into little paper dolls. She started this in the hospital. all over the hospital tray attached to the bed she had a mama doll, and a daddy doll, and the sister dolls and brother doll, and baby doll. We then made beds for each of them. Her whole family was with her in her hospital bed while she was probably bewildered and maybe even terrified as to what was happening and what was wrong with her body.
So I think what she would say is that family is the most important thing to her. Not how much she eats or what new toys she has or who stops by. As long as her family is intact and here and taking care of her, she is happy. that's what she needs.
thanks for the reminder.
no more whine, just bread. or wine and bread. today was communion at church but I was in the nursery with our baby. but communion is remembering when Jesus shed his blood for us. Our focus needs to be what he did for us so that we might do for others in return. I need to remember that God CHOSE me to lead my children and take good care of them. This is a big responsibility but he knew I could do this with his help.
My heart is always broken for children. When I taught, I was the great Shepherd for all of the lost children.
so enough about me. I need to focus on him and allow him to equip me for this job and lead my sweetie where he wants her to go. and yes, she is learning the words now to tell me.
But really, we need to just listen.
"My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak and slow to become angry, for man's anger does not bring about the righteous life that God desires. Therefore get rid of all moral filth and the evil that is so prevalent and humbly accept the word planted in you, which can save you." James 1:19-21
Our sweetie pies
Sunday, March 6, 2011
Saturday, March 5, 2011
corned beef and phone lines
We had to run to costco tonight to return a corned beef brisket. why you ask? well...last night we (my teenage cohort and myself) came in with several bags of groceries and miscellaneous items from costco. we took turns bringing in the items with my husband. Then we all sat down or disappeared down the hallway to finish different tasks for the night.
Later I went back into the kitchen and realized that the milk, soymilk, and cheese were all left out on the kitchen table. I found room in the refrigerator and put them away. Then I sat down and watched some more of American Idol.
Fast forward to 7 am. I'm fixing a bowl of cereal for one of the kids and one of them brings me a grocery bag that was sitting on the floor next to our small coffee table. "what's this?", they ask. "well, I don't know," I say, "Let's see."
do you need help guessing? It was the corned beef that my mom had bought for us, for a nice dinner one night. As I looked at the package, I thought to myself, "I was unaware it didn't need to be refrigerated."
and now fast forward to our last minute drive to Costco to try to exchange our meat. My husband had just gotten home from work and costco was to close in half an hour. It cost $13.00. and why wouldn't they take it back? They take anything back. I'm an executive member. I have a black membership card.
I wait in the return line. I am holding my brisket concealed in a Gap store bag. receipt in one hand. black membership card in the other.
It's my turn for my return. "Hi, I need to return this brisket, it was left out on accident and I would just like to trade it for a new one." The Costco employee says, "That's not our problem, why should we take it back?" I say, "But that's $13.00. I'm gonna have to throw it away." She says, "so will we." "Okay, but I paid $13 for it (actually my mom did) and I would like a new one." She says, "alright, I'll do it, this time, but we don't have to, it's not our fault." "Alright, thank you. " I say. she says, "I'll put down another reason though, I can't say you just left it out and now you want a new one." "okay", I say, "thank you."
and then I proceed with cash in hand, down the aisle to retrieve my new corned beef brisket for $13.00.
My mom and daughter say, "how did they agree to take it back?"
I say, "I just told them that they needed to take it back, it cost me $13.00".
It's all about confidence, persistence and staying calm.
Similar situation with the phone company happened today too.
Yesterday, a very nice gentleman came to figure out what was wrong with our internet connection. the connection had been unreliable for several days now. If I unplugged our modem and plugged it back in and then restarted our computer, we would have internet access. then suddenly we wouldn't. So this gentleman began looking around at our phone wires outside of the house and soon declared that in fact it was not an internet connection problem, it was a phone problem. He said "have you had a dial tone recently?" I said "I don't know?" That's how often I use our home phone. That's why no one has called in a few days. He said "you don't have phone service, your wire is bad." So he began to tell me that more worker guys as my kids would say, would need to come to our home later today and replace wires outside that are underground. This may take a while and you may not have service for a few days.
The good news was, when he showed up at my house at 1230 pm, he greeted me with "hello, and I want to apologize for being late." He had just gotten my service order at 12 pm and then realized that I had been told by the phone company that a service technician would be at my home between the hours of 8 am and 12 pm. Had I waited with baited breath? no. But did I tell him, my disappointment that he was late? yes. He said that whatever the cost for fixing my phone problems today, would be free because he was late. fantastic! I welcomed him in.
So, after many hours of his first diagnosis and new workers arriving and working on my side yard and parking strip, our phone and internet service was declared good and in working order. and free. for the repairs, that is. we waved to them as they drove off in the sunset.
Fast forward to 10 pm as my husband leans over his shoulder while working on the computer and says, "did the phone company fix our internet problem today? It's not working"
so we make another phone call to the phone company and wait.
this morning, I have a new gentleman show up at my door. He was on time. He was not apologetic. I do not welcome him in. He goes to look at the wires outside and concludes that everything is working fine. I inform him that in fact, no it is not because we did not have internet service again last night. He runs a test and shows me that yes, indeed it is working. okay, then. He leaves me his cell phone number in case I have a problem later.
well after he leaves and I sit down at the computer again, there is no internet service. the game: marco, polo. comes to mind. I find the gentleman's cell phone number again and call him and inform him that no, indeed, we do not have service again. He comes back over. He runs some more tests and decided he needs to check the kitchen phone jack. As he is unscrewing the plate, he leans over his shoulder and says to me,"now you don't have the maintenance plan, do you?" "This is an indoor job and will cost you." That's what he thinks. I have my golden ticket from nice gentleman A from yesterday. "oh no", I explain. "the nice gentleman from yesterday, told me that whatever the problem, my service call would be free, because he was late, yesterday." This new worker B, kindly informs me, "that was yesterday, today is today. there will be a charge for this." again, I reiterate to the new gentleman that no, the other worker, gave me his word and this is free.
Worker B continues to lean over his shoulder and look at me, blinking, waiting to form his words to his response. I look back with informed confidence with my assurance from worker A.
Worker B finally says, "well, the ticket was closed yesterday because we thought the problem was fixed so I guess I can't charge you even if I wanted to."
like I said, this service call will be free.
Again, confidence and persistence.
with a little cockiness thrown in.
Is this how I look diabetes in the face and win this battle? with a little cockiness, stubborness, and persistence? Is this how I get through one day and start again the next day? I think becoming a mom of a child with diabetes has conversely given me an heir of entitlement. When the phone guy showed up to fix our phone line, I thought "do you really think this is important? my daughter has diabetes." I wanted to tell him how unimportant a broken phone or unreliable computer was at this stage in my life. I wanted to tell him how I barely sleep anymore because I have to check my daughter through the night and force feed her apple juice in her sleep when she drops too low. what does anything matter when your child has a chronic disease? A friend of mine that had a daughter being treated with cancer told me how she would step away from the hospital at times and look at all the families carrying on about their lives, walking to stores, fussing, or excited, driving to different places, carrying balloons, or toys, or just sitting and having ice cream together. She thought how unfair that they could carry on with their lives and she had a daughter in a hospital bed being treated for a terminal form of cancer. How can life go on when it doesn't for someone you love?
I remember that feeling the first morning I had to take a shower and get ready for the day after my dad had died. Suddenly a shower seemed so unimportant. what would I wear that day? who cares? why would I even bother to wash my hair and carry on as if this day was just like any other day in the past. It wasn't, it would never be the same. everything had changed. I remember being angry at the shower. How could something so mundane and unimportant need to be done anymore. something big just happened! who cares about a stupid shower!
that's kind of how I felt yesterday about the phone line. don't hassle me, just fix it. I have to check my daughter's blood sugar levels in half an hour. She might drop low again as she did last night. I might have to quickly give her smarties again while you look at phone wires and think that they are really important. they aren't! I wanted to scream. my daughter has diabetes!
phones and corned beef have become little problems that need to be fixed right now and no hassle involved. they are stupid little problems that don't need to be focused on or discussed or require managerial approvals for. just do it. in the great scheme of things, does it really matter? no. it doesn't.
we are all mortal and life has a greater meaning that material items. This is the lesson I have learned with my daughter's health being placed in my hands. A new facebook friend advised me among other things, "...to have a healthy respect for this disease, because it can be fatal if her insulin levels are misdosed." I know that. I can't walk away from that fact. It is a shadow that has engulfed me.
I finally asked the doctor to tell me what they didn't tell me the day they forced me to rush her to the hospital. "what would have happened?" "what could have happened?" yes, it could have been fatal, they admit to me now.
we all know that at some point we will meet mortality, but we don't want to admit it. who would? As I was reminded by my brother; my dad used to always say, "I'm going to live forever, and so far its going great!"
"And why do you worry about clothes? see how the lilies of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? So do not worry, saying, what shall we eat? or "what shall we drink?" or "what shall we wear?" For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness and all these things will be given to you as well." Matthew 6:28-33
Later I went back into the kitchen and realized that the milk, soymilk, and cheese were all left out on the kitchen table. I found room in the refrigerator and put them away. Then I sat down and watched some more of American Idol.
Fast forward to 7 am. I'm fixing a bowl of cereal for one of the kids and one of them brings me a grocery bag that was sitting on the floor next to our small coffee table. "what's this?", they ask. "well, I don't know," I say, "Let's see."
do you need help guessing? It was the corned beef that my mom had bought for us, for a nice dinner one night. As I looked at the package, I thought to myself, "I was unaware it didn't need to be refrigerated."
and now fast forward to our last minute drive to Costco to try to exchange our meat. My husband had just gotten home from work and costco was to close in half an hour. It cost $13.00. and why wouldn't they take it back? They take anything back. I'm an executive member. I have a black membership card.
I wait in the return line. I am holding my brisket concealed in a Gap store bag. receipt in one hand. black membership card in the other.
It's my turn for my return. "Hi, I need to return this brisket, it was left out on accident and I would just like to trade it for a new one." The Costco employee says, "That's not our problem, why should we take it back?" I say, "But that's $13.00. I'm gonna have to throw it away." She says, "so will we." "Okay, but I paid $13 for it (actually my mom did) and I would like a new one." She says, "alright, I'll do it, this time, but we don't have to, it's not our fault." "Alright, thank you. " I say. she says, "I'll put down another reason though, I can't say you just left it out and now you want a new one." "okay", I say, "thank you."
and then I proceed with cash in hand, down the aisle to retrieve my new corned beef brisket for $13.00.
My mom and daughter say, "how did they agree to take it back?"
I say, "I just told them that they needed to take it back, it cost me $13.00".
It's all about confidence, persistence and staying calm.
Similar situation with the phone company happened today too.
Yesterday, a very nice gentleman came to figure out what was wrong with our internet connection. the connection had been unreliable for several days now. If I unplugged our modem and plugged it back in and then restarted our computer, we would have internet access. then suddenly we wouldn't. So this gentleman began looking around at our phone wires outside of the house and soon declared that in fact it was not an internet connection problem, it was a phone problem. He said "have you had a dial tone recently?" I said "I don't know?" That's how often I use our home phone. That's why no one has called in a few days. He said "you don't have phone service, your wire is bad." So he began to tell me that more worker guys as my kids would say, would need to come to our home later today and replace wires outside that are underground. This may take a while and you may not have service for a few days.
The good news was, when he showed up at my house at 1230 pm, he greeted me with "hello, and I want to apologize for being late." He had just gotten my service order at 12 pm and then realized that I had been told by the phone company that a service technician would be at my home between the hours of 8 am and 12 pm. Had I waited with baited breath? no. But did I tell him, my disappointment that he was late? yes. He said that whatever the cost for fixing my phone problems today, would be free because he was late. fantastic! I welcomed him in.
So, after many hours of his first diagnosis and new workers arriving and working on my side yard and parking strip, our phone and internet service was declared good and in working order. and free. for the repairs, that is. we waved to them as they drove off in the sunset.
Fast forward to 10 pm as my husband leans over his shoulder while working on the computer and says, "did the phone company fix our internet problem today? It's not working"
so we make another phone call to the phone company and wait.
this morning, I have a new gentleman show up at my door. He was on time. He was not apologetic. I do not welcome him in. He goes to look at the wires outside and concludes that everything is working fine. I inform him that in fact, no it is not because we did not have internet service again last night. He runs a test and shows me that yes, indeed it is working. okay, then. He leaves me his cell phone number in case I have a problem later.
well after he leaves and I sit down at the computer again, there is no internet service. the game: marco, polo. comes to mind. I find the gentleman's cell phone number again and call him and inform him that no, indeed, we do not have service again. He comes back over. He runs some more tests and decided he needs to check the kitchen phone jack. As he is unscrewing the plate, he leans over his shoulder and says to me,"now you don't have the maintenance plan, do you?" "This is an indoor job and will cost you." That's what he thinks. I have my golden ticket from nice gentleman A from yesterday. "oh no", I explain. "the nice gentleman from yesterday, told me that whatever the problem, my service call would be free, because he was late, yesterday." This new worker B, kindly informs me, "that was yesterday, today is today. there will be a charge for this." again, I reiterate to the new gentleman that no, the other worker, gave me his word and this is free.
Worker B continues to lean over his shoulder and look at me, blinking, waiting to form his words to his response. I look back with informed confidence with my assurance from worker A.
Worker B finally says, "well, the ticket was closed yesterday because we thought the problem was fixed so I guess I can't charge you even if I wanted to."
like I said, this service call will be free.
Again, confidence and persistence.
with a little cockiness thrown in.
Is this how I look diabetes in the face and win this battle? with a little cockiness, stubborness, and persistence? Is this how I get through one day and start again the next day? I think becoming a mom of a child with diabetes has conversely given me an heir of entitlement. When the phone guy showed up to fix our phone line, I thought "do you really think this is important? my daughter has diabetes." I wanted to tell him how unimportant a broken phone or unreliable computer was at this stage in my life. I wanted to tell him how I barely sleep anymore because I have to check my daughter through the night and force feed her apple juice in her sleep when she drops too low. what does anything matter when your child has a chronic disease? A friend of mine that had a daughter being treated with cancer told me how she would step away from the hospital at times and look at all the families carrying on about their lives, walking to stores, fussing, or excited, driving to different places, carrying balloons, or toys, or just sitting and having ice cream together. She thought how unfair that they could carry on with their lives and she had a daughter in a hospital bed being treated for a terminal form of cancer. How can life go on when it doesn't for someone you love?
I remember that feeling the first morning I had to take a shower and get ready for the day after my dad had died. Suddenly a shower seemed so unimportant. what would I wear that day? who cares? why would I even bother to wash my hair and carry on as if this day was just like any other day in the past. It wasn't, it would never be the same. everything had changed. I remember being angry at the shower. How could something so mundane and unimportant need to be done anymore. something big just happened! who cares about a stupid shower!
that's kind of how I felt yesterday about the phone line. don't hassle me, just fix it. I have to check my daughter's blood sugar levels in half an hour. She might drop low again as she did last night. I might have to quickly give her smarties again while you look at phone wires and think that they are really important. they aren't! I wanted to scream. my daughter has diabetes!
phones and corned beef have become little problems that need to be fixed right now and no hassle involved. they are stupid little problems that don't need to be focused on or discussed or require managerial approvals for. just do it. in the great scheme of things, does it really matter? no. it doesn't.
we are all mortal and life has a greater meaning that material items. This is the lesson I have learned with my daughter's health being placed in my hands. A new facebook friend advised me among other things, "...to have a healthy respect for this disease, because it can be fatal if her insulin levels are misdosed." I know that. I can't walk away from that fact. It is a shadow that has engulfed me.
I finally asked the doctor to tell me what they didn't tell me the day they forced me to rush her to the hospital. "what would have happened?" "what could have happened?" yes, it could have been fatal, they admit to me now.
we all know that at some point we will meet mortality, but we don't want to admit it. who would? As I was reminded by my brother; my dad used to always say, "I'm going to live forever, and so far its going great!"
"And why do you worry about clothes? see how the lilies of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? So do not worry, saying, what shall we eat? or "what shall we drink?" or "what shall we wear?" For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness and all these things will be given to you as well." Matthew 6:28-33
Thursday, March 3, 2011
the honeymoon
The honeymoon. the doctor keeps referring to THE Honeymoon.
Honeymoons are supposed to be happy, a celebration, a fun time. this is not fun. nor a celebration. I see the honeymoon title as an oxymoron. a dark, sad, time. It's like an iniation into a secret, dark, club. it's the remaining time of being normal into being not normal ever again. It's like a vampire in one of Anne Rice's novels. New vampires are created when an established vampire bites a human. then the vampire has the human drink the vampires blood. the vampire's blood mixes with the humans blood and the human slowly becomes a vampire. there is a waiting period where the vampire Lestat describes it as "the body slowly dying" then the new vampire wakes up in a sense and is completely vampire and has to learn how to live again.
kind of graphic description but very accurate. Her body is slowly dying and killing itself of producing its own insulin. as the body sputters and recognizes that it can still make insulin, it suddenly does and then conflicts with the manufactured insulin. this creates sudden lows in the newly diabetic child because its suddenly too much insulin for the body. its like the body desperately clinging to life, trying not to give up the fight. but the sad reality is by introducing the manufactured insulin, the natural insulin becomes a nusiance, a problem, because it throws off our medical intervention. so we are waiting for her body to use up its last attempts to survive on its own, to become 100% manufactured insulin dependent.
how is this a honeymoon?
its a sad sad thing.
her little body is trying to fight and work properly and yet we already know the end result. like in the titanic. trapped in a room that is slowly filling with water. you might find a chair to stand on as the room fills with water, but eventually you will still drown. that's the honeymoon period. if we didn't have medical intervention, this is when the doctors would say "you have about this many months left to live." "this is your honeymoon" enjoy it. when your honeymoon is over, you will be dead. but in reality, probably sooner because as we found, with only 20 % of her insulin making cells left, she already was dying.
I know this is harsh and morbid. but this is the sad reality I carry with me when I try to just go buy groceries or try to buy a coffee. I don't feel normal anymore. I don't feel carefree anymore. I feel like a doctor on call already. everytime I leave the house, I get a phone call or a text and either have to coach my husband as how to handle the situation or call the doctor myself. As I was typing my last entry "yesterday" I had a call from my husband that she had dropped from 376 at 6:10 pm to 79 by 7:30 pm. what should he do? I told him to call the doctor. that was a drastic drop. She advised give her carbs now to bring her back up. and then I needed to call her back in an hour to get new instructions for tommorow. I did call her back in between these two blogs and I was given several details and changes to make for tommorow. I wrote several notes on the back of an old calendar page in my mom's kitchen. I can't ever walk away from this burden and heartache I carry now. I just sit in silence, shaking my head in disbelief. How can this be real?
I miss my dad so much. I wish he were here to comfort me and listen. He used to always be in the room right down the hall from where I am typing now. He would sit and journal his thoughts on an old typewriter everynight, prior to blogs. He would be hearbroken by the fact that it touched such a precious little delicate child such as her. This isn't an adult that can understand. this is an innocent little child that trusts me to keep her safe. How did I do that? I couldn't protect her from this and she got it. Just like when my other daughter broke her leg when she was three. I dropped her off at school that morning. and that evening we greeted her in recovery in a full body cast from a freak break to her femur bone off the play structure at school.
Even though I did nothing wrong. I feel responsible. I am their mother. I'm supposed to be trustworthy. If I say they will be okay, they are supposed to be.
I know there are so many stories mothers carry of tragedies that befall their children. I know I'm not alone. But this is my story and I strive hard. I want the very best for my kids. of course, we all say we do too. but I, as a teacher, saw many kids that weren't given what they deserved. I saw parents that didn't care and didn't live upto their responsibilities. I mentored their kids to make up for what they didn't do.
Yet my children have still suffered.
Right before my daughter had broken her leg, we read a devotional about a lizard that lost its tail and how God designed lizards to be able to lose their tails to stay safe and how God does amazing things to help his creations survive. we didn't know at that time what we were to go through.
right before our youngest daughter was diagnosed with diabetes, she had been walking around the house saying "ou ch" "ou ch" she was practicing her "ch" sound. I thought, interesting. days later, diagnosed.
God speaks to us. He does promise to take care of us. He loves our children even more than we do. God warned me through the devotional and our youngest one's practicing of her new word of what was to come. It's not coincidence. it's purposeful. when my dad died. God warned me over and over that week he was going to die. He knew it and he was reassuring me that it was his plan, his timing, what was to come. God will speak to us. we need to pay attention and listen.
This is how we survive. this is how life becomes full of meaning and not just random bad things we are surviving through.
I praise God for yesterday, today, and tommorow. I am heartbroken but reassured. I follow God's plans wether I like them or not. Because he knows where he is leading me and I'm sure it will be a fantastic ending.
so for now, we deal with our daughter's lows and highs. She had two big lows again today. sudden drop to 50 at lunch and 79 tonight I already mentioned. I follow directions and just go through the motions and stay calm. just like we need to do in life.
Just follow directions. whether we like it or not. God's plans are always better than ours.
Lord, I continue to pray for your blessings and encouragement in this tough adjustment time. Amen.
Honeymoons are supposed to be happy, a celebration, a fun time. this is not fun. nor a celebration. I see the honeymoon title as an oxymoron. a dark, sad, time. It's like an iniation into a secret, dark, club. it's the remaining time of being normal into being not normal ever again. It's like a vampire in one of Anne Rice's novels. New vampires are created when an established vampire bites a human. then the vampire has the human drink the vampires blood. the vampire's blood mixes with the humans blood and the human slowly becomes a vampire. there is a waiting period where the vampire Lestat describes it as "the body slowly dying" then the new vampire wakes up in a sense and is completely vampire and has to learn how to live again.
kind of graphic description but very accurate. Her body is slowly dying and killing itself of producing its own insulin. as the body sputters and recognizes that it can still make insulin, it suddenly does and then conflicts with the manufactured insulin. this creates sudden lows in the newly diabetic child because its suddenly too much insulin for the body. its like the body desperately clinging to life, trying not to give up the fight. but the sad reality is by introducing the manufactured insulin, the natural insulin becomes a nusiance, a problem, because it throws off our medical intervention. so we are waiting for her body to use up its last attempts to survive on its own, to become 100% manufactured insulin dependent.
how is this a honeymoon?
its a sad sad thing.
her little body is trying to fight and work properly and yet we already know the end result. like in the titanic. trapped in a room that is slowly filling with water. you might find a chair to stand on as the room fills with water, but eventually you will still drown. that's the honeymoon period. if we didn't have medical intervention, this is when the doctors would say "you have about this many months left to live." "this is your honeymoon" enjoy it. when your honeymoon is over, you will be dead. but in reality, probably sooner because as we found, with only 20 % of her insulin making cells left, she already was dying.
I know this is harsh and morbid. but this is the sad reality I carry with me when I try to just go buy groceries or try to buy a coffee. I don't feel normal anymore. I don't feel carefree anymore. I feel like a doctor on call already. everytime I leave the house, I get a phone call or a text and either have to coach my husband as how to handle the situation or call the doctor myself. As I was typing my last entry "yesterday" I had a call from my husband that she had dropped from 376 at 6:10 pm to 79 by 7:30 pm. what should he do? I told him to call the doctor. that was a drastic drop. She advised give her carbs now to bring her back up. and then I needed to call her back in an hour to get new instructions for tommorow. I did call her back in between these two blogs and I was given several details and changes to make for tommorow. I wrote several notes on the back of an old calendar page in my mom's kitchen. I can't ever walk away from this burden and heartache I carry now. I just sit in silence, shaking my head in disbelief. How can this be real?
I miss my dad so much. I wish he were here to comfort me and listen. He used to always be in the room right down the hall from where I am typing now. He would sit and journal his thoughts on an old typewriter everynight, prior to blogs. He would be hearbroken by the fact that it touched such a precious little delicate child such as her. This isn't an adult that can understand. this is an innocent little child that trusts me to keep her safe. How did I do that? I couldn't protect her from this and she got it. Just like when my other daughter broke her leg when she was three. I dropped her off at school that morning. and that evening we greeted her in recovery in a full body cast from a freak break to her femur bone off the play structure at school.
Even though I did nothing wrong. I feel responsible. I am their mother. I'm supposed to be trustworthy. If I say they will be okay, they are supposed to be.
I know there are so many stories mothers carry of tragedies that befall their children. I know I'm not alone. But this is my story and I strive hard. I want the very best for my kids. of course, we all say we do too. but I, as a teacher, saw many kids that weren't given what they deserved. I saw parents that didn't care and didn't live upto their responsibilities. I mentored their kids to make up for what they didn't do.
Yet my children have still suffered.
Right before my daughter had broken her leg, we read a devotional about a lizard that lost its tail and how God designed lizards to be able to lose their tails to stay safe and how God does amazing things to help his creations survive. we didn't know at that time what we were to go through.
right before our youngest daughter was diagnosed with diabetes, she had been walking around the house saying "ou ch" "ou ch" she was practicing her "ch" sound. I thought, interesting. days later, diagnosed.
God speaks to us. He does promise to take care of us. He loves our children even more than we do. God warned me through the devotional and our youngest one's practicing of her new word of what was to come. It's not coincidence. it's purposeful. when my dad died. God warned me over and over that week he was going to die. He knew it and he was reassuring me that it was his plan, his timing, what was to come. God will speak to us. we need to pay attention and listen.
This is how we survive. this is how life becomes full of meaning and not just random bad things we are surviving through.
I praise God for yesterday, today, and tommorow. I am heartbroken but reassured. I follow God's plans wether I like them or not. Because he knows where he is leading me and I'm sure it will be a fantastic ending.
so for now, we deal with our daughter's lows and highs. She had two big lows again today. sudden drop to 50 at lunch and 79 tonight I already mentioned. I follow directions and just go through the motions and stay calm. just like we need to do in life.
Just follow directions. whether we like it or not. God's plans are always better than ours.
Lord, I continue to pray for your blessings and encouragement in this tough adjustment time. Amen.
yesterday
My internet service went down last night. I came home from a quick trip to the local coffee house for a fresh vanilla latte and scone. my sweetie was okay and in fact her levels were a little high. so I had given husband instructions and called the doctor, waiting for a reply. I was thinking she needed a little more insulin if anything since her levels were a little high at bedtime. well doctor hadn't called back yet and I needed my latte.
My oldest daughter jumped in the car with me. she welcomed an opportunity to leave the house too and the sound of a fresh coffee enticed her. she, however, is someone who does not need any extra caffeine. when I go to lay down to watch tv at night, waiting for midnight for our little one's blood check, I ask my oldest daughter to wake me up, if I dose off. She will always be awake at midnight guaranteed. her internal clock needs to be set back a few hours. when she was five, we traveled to India with her. On the flight from Thailand to India, we flew fours, from midnight to four a.m. almost everyone was asleep in the plane, except for my five year old daughter, who stayed up to watch the in flight movie, Madeline. She finally fell asleep at 6 a.m. when we arrived at our hotel.
so anyways, my daughter and I headed out to get coffee. for myself to make it through the rest of the night and have a half hour outside of the house and for her to guarantee she wouldn't have to waste anytime sleeping at all that night.
so while we were driving, we were discussing school, boys, movies, food, etc. we used to spend our evenings when all the little kids were finally asleep, watching movies together or American Idol. so I suggested, "let's watch Julie and Julia, when we get back home!" I love that movie. I love Julia Child, Paris, and writing. of course, we have seen this movie several times and teenage daughter groaned at the idea again. she suggested some other movies. well, I pondered.
we got our coffees. she tried a chai cocoa for the first time. it was good. I had my standard vanilla latte. I decided to detour at In n Out for a burger to go with my latte. yes, weird. but I thought I could save my latte for dessert and eat the burger now.
we then headed back home. My husband was heading out to meet someone, so we needed to hurry back. when I got to the front door, the porch light was off and the door was locked. Both unintentional or maybe intentional but not user friendly to someone who lives there. so while I was trying to unlock the door, I tipped my burger and fries (yes fries too, thought I could leave that fattening detail out) all over the dark porch. argh!!
so I gathered up what I could in the dark, husband finally opened door and my quick outing was quickly forgotten. I was now upset and headed to my room.
husband left to meet his friend. when I came back out to living room, my daughter had put in "julie and Julia" and lined the remotes up next to my coffee sitting on the footstool next to the couch. Her way of trying to cheer me up. It worked. so I watched my movie as I formulated my new blog ideas to type when show was done.
When I finally headed over to computer and began to log in...our internet was not working! NOOO!!! what will I do??? no facebook, blogging, twitter, banking, shopping?? well I tried jiggling this and restarting that to no avail. I texted my brother as my cell phone works independently from the computer and said simply, "help!" He is our tech guy.
silence
what do I do now?
so I had to sleep with my thoughts to myself last night.
so if I could have told you about my day yesterday, I would have told you that it was a good day. so thank you for your prayers.
My niece and mom came over yesterday morning. My niece, who's 20, offered to clean my house for me to take some of the extra food off of my plate. she cleaned both bathrooms and vacuumed our bedrooms for us. she even swept our kitchen and living room. My mom then went and bought us lunch from the local mexican food restaurant. My niece agreed to clean again when she returns from her recent excursion to Lousiana (Hi Ashley!)
Having my house cleaned helped so much. I felt such a burden lifted. I felt like I had so many things to do that I could just never get to right now. So much of my days now are just watching the clock and counting carbs and keeping kids busy. cleaning is just not on the schedule anymore.
The other good thing about yesterday, was that our sweetie's numbers were good and fairly consistent all day. no lows. so we had a break and we all actually slept all night.
so today, my brother came over to look at our internet problem and concluded that it is actually a phone line problem. (so that's why no one called today). so the repairman is coming tommorow and tonight I am gracing my mom with my presence with teenager in tow again. (more coffee for me, none for teenager) and I shall tell you all about today in my next entry...The Honeymoon.
My oldest daughter jumped in the car with me. she welcomed an opportunity to leave the house too and the sound of a fresh coffee enticed her. she, however, is someone who does not need any extra caffeine. when I go to lay down to watch tv at night, waiting for midnight for our little one's blood check, I ask my oldest daughter to wake me up, if I dose off. She will always be awake at midnight guaranteed. her internal clock needs to be set back a few hours. when she was five, we traveled to India with her. On the flight from Thailand to India, we flew fours, from midnight to four a.m. almost everyone was asleep in the plane, except for my five year old daughter, who stayed up to watch the in flight movie, Madeline. She finally fell asleep at 6 a.m. when we arrived at our hotel.
so anyways, my daughter and I headed out to get coffee. for myself to make it through the rest of the night and have a half hour outside of the house and for her to guarantee she wouldn't have to waste anytime sleeping at all that night.
so while we were driving, we were discussing school, boys, movies, food, etc. we used to spend our evenings when all the little kids were finally asleep, watching movies together or American Idol. so I suggested, "let's watch Julie and Julia, when we get back home!" I love that movie. I love Julia Child, Paris, and writing. of course, we have seen this movie several times and teenage daughter groaned at the idea again. she suggested some other movies. well, I pondered.
we got our coffees. she tried a chai cocoa for the first time. it was good. I had my standard vanilla latte. I decided to detour at In n Out for a burger to go with my latte. yes, weird. but I thought I could save my latte for dessert and eat the burger now.
we then headed back home. My husband was heading out to meet someone, so we needed to hurry back. when I got to the front door, the porch light was off and the door was locked. Both unintentional or maybe intentional but not user friendly to someone who lives there. so while I was trying to unlock the door, I tipped my burger and fries (yes fries too, thought I could leave that fattening detail out) all over the dark porch. argh!!
so I gathered up what I could in the dark, husband finally opened door and my quick outing was quickly forgotten. I was now upset and headed to my room.
husband left to meet his friend. when I came back out to living room, my daughter had put in "julie and Julia" and lined the remotes up next to my coffee sitting on the footstool next to the couch. Her way of trying to cheer me up. It worked. so I watched my movie as I formulated my new blog ideas to type when show was done.
When I finally headed over to computer and began to log in...our internet was not working! NOOO!!! what will I do??? no facebook, blogging, twitter, banking, shopping?? well I tried jiggling this and restarting that to no avail. I texted my brother as my cell phone works independently from the computer and said simply, "help!" He is our tech guy.
silence
what do I do now?
so I had to sleep with my thoughts to myself last night.
so if I could have told you about my day yesterday, I would have told you that it was a good day. so thank you for your prayers.
My niece and mom came over yesterday morning. My niece, who's 20, offered to clean my house for me to take some of the extra food off of my plate. she cleaned both bathrooms and vacuumed our bedrooms for us. she even swept our kitchen and living room. My mom then went and bought us lunch from the local mexican food restaurant. My niece agreed to clean again when she returns from her recent excursion to Lousiana (Hi Ashley!)
Having my house cleaned helped so much. I felt such a burden lifted. I felt like I had so many things to do that I could just never get to right now. So much of my days now are just watching the clock and counting carbs and keeping kids busy. cleaning is just not on the schedule anymore.
The other good thing about yesterday, was that our sweetie's numbers were good and fairly consistent all day. no lows. so we had a break and we all actually slept all night.
so today, my brother came over to look at our internet problem and concluded that it is actually a phone line problem. (so that's why no one called today). so the repairman is coming tommorow and tonight I am gracing my mom with my presence with teenager in tow again. (more coffee for me, none for teenager) and I shall tell you all about today in my next entry...The Honeymoon.
Wednesday, March 2, 2011
photos
the little ones a few months ago
our eldest and youngest girls.I wanted to share some photos of the family...
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