I hate cleaning toilets. I hate it. I have four boys, ‘nuff said. Their bathroom is reminiscent of urinal meets boys locker room. Probably because my little diabetics wake up throughout the night to pee, and are seriously not in the moment enough to aim properly. It’s a battle I am yet to win, and a Dirty Job Mike Rowe has yet to accept.
So I was cleaning the toilet the other day and had somewhat of an epiphany.
Mundane, arduous tasks are not mundane and arduous when done with the right perspective.
Bear with me here…
As much as I hate cleaning the toilet, (Oh, I loathe it…) yesterday, it was OK. I was happy to. Not that I have come accustomed to the accostment of my five senses…it’s just that I was appreciative of my calling as a mother. I was appreciative that I could clean the toilet, and that I was doing our family a service. (A thankless and cruelly repetitive service, but a service none the less.)
I know…Meri is going to her special place again…but it’s important to note that I came upon this change of perspective after hearing of the untimely death of a close friend last week. His unexpected passing shook my soul to the core. When something like that smacks you out of nowhere, it wakes you up. I was wandering aimlessly in my self-absorbed fog, and now it has lifted. I see things clearer now. I am blessed…so ridiculously overwhelmingly blessed. I have a frustrating life for sure, but this life is so precious.
Perspective. Do you believe in an afterlife? I do. If you do, than it is reasonable to think that our time here on earth is a dot on the big canvas of “life.” If you are one that goes one step further, and believes we are here for a purpose, is that purpose to give up to the fog, or is it to rise above? A diabetic life can suck you into a black hole, a place where we forget to look up and see the beautiful life directly in front of us. The fog, the tsunami, it is all looming this time of year. But for me, for now, the storm clouds are clearing and the sun is shining on my face.
Bring on the toilets...
And as a wise songstress once sang…”Tomorrow’s another day, and I’m thirsty anyway, so bring on the rain!”
Wednesday, August 26, 2009
Tuesday, August 25, 2009
See Meri
Wednesday, August 19, 2009
A Charlie Brown Day
Picture Charlie Brown...He's got his eye on the football. He is full of optimism and hope. He is sure that this time he will kick that ball to the moon. Holding the ball is Lucy, she is grinning, she is reassuring. She prompts him, "Come on Charlie Brown, you can do it!" And Charlie Brown believes. He runs. He runs as fast as his blessed little legs will take him. Then, with all the force he can muster he takes his leg back to kick....and then Lucy, she snatches that ball away and poor Charlie Brown is left on his back, humiliated.
Picture Meri...she's got her eye on having the best first day of school ever. She is full of optimism and hope. She is sure she will kick that ball to the moon. Holding the ball is the BiG D. He is smiling that stupid grin, he is reassuring. He prompts her, "Come on Meri, we're friends now, you know I won't let you down, you can do it!" And Meri believes. She prepares. She is READY. She runs. She blows full force into a day believing with all her heart that this time she is so prepared that she will kick that ball. SHE WILL KICK THAT BALL'S ARSE! And just as her day begins, the Big D snatches that ball away and Meri is left flat on her back, humiliated.
Today was the big day, the first day of school. I got up early. I showered before I got the boys up. All their clothes were laid out the night before. All their backpacks were ready, lined up at the door. I was ready. I woke up the older three boys. They were eager to start the first day of school. But hold it! What is this?! L won't get out of bed. He is crying, he says he is never getting up. I check his blood sugar and WHAT THE.....??????? He was 469! He needs a new set and there is no time. I gave him a shot and he finally got up 20 minutes before it was time to go. He had his cereal, got dressed and we flew out the door.
Luckily, L's first day of Kindergarten was only 2 hours and I was supposed to attend with him. We had a nice morning together until the parents were to meet in the school garden for 30 minutes while the little ones went outside to play and learn the rules of the playground. I checked Luke's sugar, 155, with a smidgen on board. He'll be fine...Came back from the garden meeting and the kids were walking in from the fun and met on the rug for circle. But what is this? L is not participating. They are supposed to follow her, she is teaching them sign language and he is not signing along. They line up to leave and I wait outside, ready to hug him and congratulate him on his first day. "L! L honey! I'm over here!" He just stared ahead and didn't look at me. I put my arm around him. "Mama, I'm low." Checked his sugar and he was 50. In less than 40 minutes he had dropped 105 pts.
I get home and 1 hour later comes a call from B. Hysterical and crying. He told me his best friends said they didn't like him anymore and that they never want to play with him again. He yelled at them and threatened to hit them. He was on his way to the principals office. My 7 year old son got sent to the Principal's office on the first day of school. I have never had a son sent to the principals office, ever. He did not check his sugar before lunch, and he was higher than normal. (Not that it makes what he did OK.) The thing is, B is the most laid back, happy, nicest kid in the world. And also, we are not a hitting family. The boys very very rarely hit each other, and when they do they get a huge lecture that goes something like, "If you get to hit, your brothers get to hit and Mom and Dad get to hit too. So are we a hitting family or not?" And we are not. Why does he explode at school? Why is he so sensitive there and here at home he has no fear. I know the first day is overwhelming, but it's so Jekyll and Hyde.
Then I got home at 2:30 and filled 4 big packets of emergency forms and registrations for 2 hours. My husband ran to get the scientific calculator and the Spanish to English dictionary that my 9th grader HAD to have at school tomorrow. B had swimming at 4:30. L had soccer at 5:00. J and M had scouts at 7:00. In between we had dinner at my in laws. Turkey and Mashed potatoes. Comfort food! God bless my mother in law! I had two helpings and didn't even care I was blowing my diet.
So, now I am home, regrouping.
I cried 3 times today. Tomorrow I am aiming for 1. A girl's gotta have goals. And as for Big D. I'm not even aiming for the ball tomorrow...I'm aiming for him.
Monday, August 17, 2009
Fighting the Funk
When it rains, it pours.
Why isn’t it ever just one? One diabetic that is out of whack. Why is it that all three of my diabetics need basal adjustments just a couple days before school starts? Why is it that B is waking up in the 60’s every morning no matter what I do? (Sigh) CURSE THESE DIABETES INIGMAS!
I’m riding a low, and I am constantly asking myself why I feel this way. Am I overwhelmed? I don’t think so. Am I over my head? Maybe. Is being over my head the same thing as being overwhelmed, and I’m just in denial? I think mostly it’s that old diabetic adage (that probably goes something like…,) “The minute you got it figured out, the very next minute diabetes kicks you in the arse.”
Why is B waking up low every morning?
Why is L going low before lunch all of a sudden?
Why is J going low after dinner every night?
Why? Why? Why? Why?
I’ll roll back the basal rates, but these lows are coming out of nowhere. No changes have been made to make them happen. They haven’t happened all summer. Why the week before school?
Why does diabetes hate me? I play nice. I appreciate that my children lead semi-normal lives. I appreciate that I wouldn’t trade our disease with someone else’s. I appreciate the blessings in our lives.
You know what the crazy part is? I made an oath, (see a couple posts ago,) not to get overwhelmed this year with the Diabetes Blues. I promised myself a new outlook and I have adopted it with open arms. I am hardly nervous of school starting, because I know it will all work out.
So why the pity party? Why? Why? Why? Why?
I so need to get out of this funk! It is ridiculous! It is silly! It is pathetic! (If I scream it loud enough will my brain listen?)
I can do this…I just needed to get it out of my brain and down on (virtual) paper... Admitting I feel like I’m in the crapper is the first step…now onto the next step! No idea what the next step is…but I’m going to call it progress just wanting to know what it is.
Why isn’t it ever just one? One diabetic that is out of whack. Why is it that all three of my diabetics need basal adjustments just a couple days before school starts? Why is it that B is waking up in the 60’s every morning no matter what I do? (Sigh) CURSE THESE DIABETES INIGMAS!
I’m riding a low, and I am constantly asking myself why I feel this way. Am I overwhelmed? I don’t think so. Am I over my head? Maybe. Is being over my head the same thing as being overwhelmed, and I’m just in denial? I think mostly it’s that old diabetic adage (that probably goes something like…,) “The minute you got it figured out, the very next minute diabetes kicks you in the arse.”
Why is B waking up low every morning?
Why is L going low before lunch all of a sudden?
Why is J going low after dinner every night?
Why? Why? Why? Why?
I’ll roll back the basal rates, but these lows are coming out of nowhere. No changes have been made to make them happen. They haven’t happened all summer. Why the week before school?
Why does diabetes hate me? I play nice. I appreciate that my children lead semi-normal lives. I appreciate that I wouldn’t trade our disease with someone else’s. I appreciate the blessings in our lives.
You know what the crazy part is? I made an oath, (see a couple posts ago,) not to get overwhelmed this year with the Diabetes Blues. I promised myself a new outlook and I have adopted it with open arms. I am hardly nervous of school starting, because I know it will all work out.
So why the pity party? Why? Why? Why? Why?
I so need to get out of this funk! It is ridiculous! It is silly! It is pathetic! (If I scream it loud enough will my brain listen?)
I can do this…I just needed to get it out of my brain and down on (virtual) paper... Admitting I feel like I’m in the crapper is the first step…now onto the next step! No idea what the next step is…but I’m going to call it progress just wanting to know what it is.
Friday, August 14, 2009
And that’s not all…!!!
Thanks to all my blog world friends for your gracious and supportive comments in regards to Lawton. To be honest, I don’t think I would have been so nice. If I were in your situation my comment would have read, “NO FAIR! I‘M TOTALLY NOT READING YOUR BLOG ANYMORE UNTIL I GET ONE!!!!” But, because all of you have such nice manners, I thought I should respond in kind with answers to your questions about Lawton.
I was asked if Lawton goes to school with the boys. The Dogs4Diabetics rules state a child must be 12 years old to handle a dog in public. J will be 12 in November and will be able to take Lawton if he wishes. My quandary is, if J takes Lawton to school EVERY day, Lawton may become more attached to J than the other boys, and may decide to alert only on him. Also, L will be home at 12:00 and I will need Lawton around for him. (He’s my youngest and most unpredictable.) We have decided that Lawton will go to school with J when he has a bad night of lows or highs, on a day where I am not sure what his blood sugars will do. Also, I need Lawton on alert at night. He usually sleeps while the boys are at school, this way he is not so out of it at night when I really need him. I don’t know what I’ll do when the boys get older. I am hoping to send Lawton to college with J. Hopefully D4D will take pity on me and offer me two more dogs.
Another question was, does D4D give dogs to people out of state? Sadly, no. They only work with people who live in the area so they can attend the weekly classes in Concord. The good news is that they are hoping to expand soon, throughout the United States and up into Canada. Right now they are focusing on getting the program just right so that the new programs will have the best possible plan to follow.
Lastly, how does Lawton alert? Lawton came to us with a long strap that was hanging down from his collar called a bringsle. When he alerted he was supposed to put this strap in his mouth to alert us. Lawton on the other hand had other ideas. When he alerts he sits directly in front of me and sits. He cocks his ears and stares at me intensely and then yawns. If the child that is going low is in the room he will glance at them and then back to me. If I ignore him he will put his head on my lap. Unfortunately, all Lawton cares about is his treat, so he rarely lets me know which one is going low. He alerts, watches me check the boys and then runs to the fridge to get his treat. It's all a game to him. With more training he will let me know which one is in need, but actually more often than not, it is more than one boy who is dropping. (If I over bolus for a food, they usually all eat the same thing, hence they all get too much insulin and they all go low.)
Also, a request for pictures…
Oh yeah! He is very handsome. When he is out in public and we give him commands we call him Lawton, but at home we call him Lala. He likes to sleep on our feet, he sits with his head on the bottom of my bed every morning until I get up and feed him, and he sometimes gets bad gas. Fortunately, that's the worst of it. He really is a perfect dog.
I was asked if Lawton goes to school with the boys. The Dogs4Diabetics rules state a child must be 12 years old to handle a dog in public. J will be 12 in November and will be able to take Lawton if he wishes. My quandary is, if J takes Lawton to school EVERY day, Lawton may become more attached to J than the other boys, and may decide to alert only on him. Also, L will be home at 12:00 and I will need Lawton around for him. (He’s my youngest and most unpredictable.) We have decided that Lawton will go to school with J when he has a bad night of lows or highs, on a day where I am not sure what his blood sugars will do. Also, I need Lawton on alert at night. He usually sleeps while the boys are at school, this way he is not so out of it at night when I really need him. I don’t know what I’ll do when the boys get older. I am hoping to send Lawton to college with J. Hopefully D4D will take pity on me and offer me two more dogs.
Another question was, does D4D give dogs to people out of state? Sadly, no. They only work with people who live in the area so they can attend the weekly classes in Concord. The good news is that they are hoping to expand soon, throughout the United States and up into Canada. Right now they are focusing on getting the program just right so that the new programs will have the best possible plan to follow.
Lastly, how does Lawton alert? Lawton came to us with a long strap that was hanging down from his collar called a bringsle. When he alerted he was supposed to put this strap in his mouth to alert us. Lawton on the other hand had other ideas. When he alerts he sits directly in front of me and sits. He cocks his ears and stares at me intensely and then yawns. If the child that is going low is in the room he will glance at them and then back to me. If I ignore him he will put his head on my lap. Unfortunately, all Lawton cares about is his treat, so he rarely lets me know which one is going low. He alerts, watches me check the boys and then runs to the fridge to get his treat. It's all a game to him. With more training he will let me know which one is in need, but actually more often than not, it is more than one boy who is dropping. (If I over bolus for a food, they usually all eat the same thing, hence they all get too much insulin and they all go low.)
Also, a request for pictures…
Oh yeah! He is very handsome. When he is out in public and we give him commands we call him Lawton, but at home we call him Lala. He likes to sleep on our feet, he sits with his head on the bottom of my bed every morning until I get up and feed him, and he sometimes gets bad gas. Fortunately, that's the worst of it. He really is a perfect dog.
Thursday, August 13, 2009
Introducing..."The Dog Lady."
I don’t exactly know why I haven’t written about this before. I think it’s because I didn’t want to be known as “the dog lady,” but leaving out this huge part of my life any longer seems dishonest, so I’m coming right out with it.
We have a diabetic service dog, and he is the most amazing animal on God’s green earth.
There, I said it. I have a secret weapon, a cheat sheet if you will, and he has completely changed our lives.
I applied for the Dogs4Diabetics program on a whim 2 ½ years ago, during Christmas. It is based in Concord, California about an hour and a half from where we live. I knew there was a long waiting list, but hey, I had 2 diabetics at the time, that had to count for something. Miraculously we heard back right away. A few more applications and a few months later we were in.
The expectation of the program was that we were to attend the training meetings every Tuesday night and the first Sunday of every month until they found the right dog for our family. Generally it took from 6 months to 2 years to be placed with a dog. During our training period we would work extensively with service dogs and learn how to properly handle them.
Dogs4Diabetics was founded by a Type 1 man who is a higher up for Guide Dogs for the Blind. While he was on a business trip, a dog he was traveling with woke him up from a severe low in his hotel room. Shortly after, he began working with dogs that for various reasons did not make the guide dog program, and career changed them as a medical alert dog for diabetics. Part of the training included hiding a small swath that was rubbed with the scent of a diabetic going low. They would hide the swath and the dogs would get a treat if they found it. Once the dog recognized the scent, it was fairly easy to apply it to a human, because when we go low our entire body exudes the scent. It is a very powerful scent to a dog.
B was diagnosed a few months after we started the program. B adjusted beautifully to his new life, especially due to the fact that this dog we were working so hard to get would indeed be his too. I on the other hand spiraled into a deep depression. It lasted almost 5 months, 3 diabetics, school starting, diabetic dog training…it was too much diabetes. It was about 10 months after we started the program that I considered stopping. I was too overwhelmed and tired. I knew it would take a super special dog to be able to work with my family and I was losing hope. Just then they handed us the leash of a beautiful yellow lab named Lawton. They said, “We want you to work only with this guy for a little while, let’s see if there is chemistry” They had us train with him for a few months and one day we received an email that we would be able to take him home and see if he would be the right fit for our family.
FEAR- we could take him home on a trial basis, what if he didn’t alert? What if it didn’t work out? The boys would be DEVESTATED!
Lawton came home with us in March of 2008. He woke me up the first night he was with us to alert us on a low. We graduated from the program in October 2008 and Lawton is now part of the family. He goes everywhere with us. In public, when he has his jacket on, he is the perfect dog; Head down and very serious. At home is his a goofball, leaping around the house like Bambi and taunting the boys with his toys. For the boys, he takes away all that is bad about Diabetes. In public and at school they happily answer questions about what Lawton does and are very proud they we are a family worthy of Lawton’s love.
And for me, Lawton has changed everything. For the first time in 10 years, I can sleep. He wakes me if there is a problem and alerts a couple times a day. He catches lows that I NEVER would have dreamed of, and better yet he often alerts me when the boys are dropping, before they hit the scary number. He has put the boys in a box of how they are supposed to smell, and if they go too low, or even too high, he alerts. He is my miracle. I still do all the work, I don’t check the kids less because he is here and night time checks are still a must. But, I for sure have a back up and a piece of mind that was not there before. He alerts me to about 95% of the boys lows.
Dogs4Diabetics is a non-profit. We were asked to pay a small application fee, (I don’t remember, I think it was $50.) and we were asked to buy a couple books, a treat bag, and a doggy first aid kit. We were not asked to pay a penny more for Lawton. He is easily worth $50,000 and he was just given to us. They also gave us his bed, bowls, flea and heartworm meds for the first few months, and toys. The people behind the program only want the best dog for your family and are very careful who they partner you up with. Many of them worked full time for years without pay to get this program off the ground.
I am in debt to the wonderful people at D4D. I wish I could clone Lawton and send a copy of him out to every diabetic in the world.
There you go, I am not super woman. I have serious help. Between Lawton (who alerted us 5 times yesterday,) my husband’s parents (who feed us 3 times a week,) my parents (who have us over every Friday,) and my sister in law (who happily babysits my 4 boys and the dog anytime,) I am spoiled rotten.
We have a diabetic service dog, and he is the most amazing animal on God’s green earth.
There, I said it. I have a secret weapon, a cheat sheet if you will, and he has completely changed our lives.
I applied for the Dogs4Diabetics program on a whim 2 ½ years ago, during Christmas. It is based in Concord, California about an hour and a half from where we live. I knew there was a long waiting list, but hey, I had 2 diabetics at the time, that had to count for something. Miraculously we heard back right away. A few more applications and a few months later we were in.
The expectation of the program was that we were to attend the training meetings every Tuesday night and the first Sunday of every month until they found the right dog for our family. Generally it took from 6 months to 2 years to be placed with a dog. During our training period we would work extensively with service dogs and learn how to properly handle them.
Dogs4Diabetics was founded by a Type 1 man who is a higher up for Guide Dogs for the Blind. While he was on a business trip, a dog he was traveling with woke him up from a severe low in his hotel room. Shortly after, he began working with dogs that for various reasons did not make the guide dog program, and career changed them as a medical alert dog for diabetics. Part of the training included hiding a small swath that was rubbed with the scent of a diabetic going low. They would hide the swath and the dogs would get a treat if they found it. Once the dog recognized the scent, it was fairly easy to apply it to a human, because when we go low our entire body exudes the scent. It is a very powerful scent to a dog.
B was diagnosed a few months after we started the program. B adjusted beautifully to his new life, especially due to the fact that this dog we were working so hard to get would indeed be his too. I on the other hand spiraled into a deep depression. It lasted almost 5 months, 3 diabetics, school starting, diabetic dog training…it was too much diabetes. It was about 10 months after we started the program that I considered stopping. I was too overwhelmed and tired. I knew it would take a super special dog to be able to work with my family and I was losing hope. Just then they handed us the leash of a beautiful yellow lab named Lawton. They said, “We want you to work only with this guy for a little while, let’s see if there is chemistry” They had us train with him for a few months and one day we received an email that we would be able to take him home and see if he would be the right fit for our family.
FEAR- we could take him home on a trial basis, what if he didn’t alert? What if it didn’t work out? The boys would be DEVESTATED!
Lawton came home with us in March of 2008. He woke me up the first night he was with us to alert us on a low. We graduated from the program in October 2008 and Lawton is now part of the family. He goes everywhere with us. In public, when he has his jacket on, he is the perfect dog; Head down and very serious. At home is his a goofball, leaping around the house like Bambi and taunting the boys with his toys. For the boys, he takes away all that is bad about Diabetes. In public and at school they happily answer questions about what Lawton does and are very proud they we are a family worthy of Lawton’s love.
And for me, Lawton has changed everything. For the first time in 10 years, I can sleep. He wakes me if there is a problem and alerts a couple times a day. He catches lows that I NEVER would have dreamed of, and better yet he often alerts me when the boys are dropping, before they hit the scary number. He has put the boys in a box of how they are supposed to smell, and if they go too low, or even too high, he alerts. He is my miracle. I still do all the work, I don’t check the kids less because he is here and night time checks are still a must. But, I for sure have a back up and a piece of mind that was not there before. He alerts me to about 95% of the boys lows.
Dogs4Diabetics is a non-profit. We were asked to pay a small application fee, (I don’t remember, I think it was $50.) and we were asked to buy a couple books, a treat bag, and a doggy first aid kit. We were not asked to pay a penny more for Lawton. He is easily worth $50,000 and he was just given to us. They also gave us his bed, bowls, flea and heartworm meds for the first few months, and toys. The people behind the program only want the best dog for your family and are very careful who they partner you up with. Many of them worked full time for years without pay to get this program off the ground.
I am in debt to the wonderful people at D4D. I wish I could clone Lawton and send a copy of him out to every diabetic in the world.
There you go, I am not super woman. I have serious help. Between Lawton (who alerted us 5 times yesterday,) my husband’s parents (who feed us 3 times a week,) my parents (who have us over every Friday,) and my sister in law (who happily babysits my 4 boys and the dog anytime,) I am spoiled rotten.
Tuesday, August 11, 2009
My Angel Story
Gosh, after my last post I feel like such a downer. There are so many good people in this world that have done so much for us!
So today I want to share a story of hope. An experience I had that helped me through one of my darkest times.
It was less than two months after J was diagnosed and I was a complete Zombie. Tired, worried, scared. It was such a hard time. J was on a “long acting” insulin, (the name of it escapes me right now.) We had to give him a “light” ½ unit twice a day. Measuring a “light” ½ unit is almost impossible in a needle, and who knows how much of it he actually got. His short acting was an insulin called Regular. It was diluted in a bottle 5 parts saline to one part insulin. He also would get very tiny amounts of this. Needless to say, we never knew what his blood sugars were going to do. His long acting did not peak in adults, but it peaked in J. His short acting would peak 2 hours after we gave it to him, so we would have to predict what he was going to eat. (Which, of course, was impossible with a 9 month old.) We were never sure when a low would occur at night, so I would check every couple hours to be sure.
There was one night in particular that was extra rough. He needed food, then extra insulin, then more food. He was extra restless and he and I cried most the night together. Each time I tried to sleep I would say a silent prayer, a prayer I had said a hundred times before, “Lord, please have the angels watch out for J while I sleep, and have them wake me if I am needed. “ That night I couldn’t help but wonder if angels were real, or a wonderful fantasy I simply hoped for. I prayed for an answer, but was left to wonder. Between my alarms and J’s crying I was woken plenty that night. I must have sung him his lullaby a dozen times. (Each of my boys had their own lullaby. J’s happened to be one I learned from a college roommate.) It goes like this:
You came from a land where all is bright
To a world half day and a world half night
To guide you by day, you have my love
To guard you by night, your friends above.
So sleep…sleep…till the darkness ends, guarded by your angel friends.
Yes sleep…sleep…till the darkness ends, guarded by your angel friends.
There is one stands softly by your bed,
and another sits close, with her hand on your head.
There’s one at the window watching for the dawn,
and one waits to wake you when the night is gone.
By morning I was exhausted and too tired to make breakfast. All I could think about was downing one of my husband’s lovely doughnuts. I packed up the boys and headed for our bakery. Before I could make it to my husband’s arms, or a doughnut for that matter, I was stopped by Alice, (Not her real name.) She was so happy to see me; she wasn’t expecting I’d be in that day. She had a dream, a vivid dream, and she knew she had to share it with me.
Alice had a brother who had passed away somewhat recently. He was a young husband and father and of course very missed. In her dream she was working the counter at the bakery as usual when she noticed that it was pitch black outside. She was confused at how she could have worked so far into the night and went into the back to get her sweater and purse and close up. While in the back she heard the bell on the bakery door ring. She ran out to tell the customer she had closed. Lo and behold it was her brother, with his finger to his lip, shushing her. In his arms was a baby, and as he got closer she realized it was J sleeping soundly. “Would you walk home with me?” She asked her brother. “Sorry sis,” he said pointing to J. “I’m on duty until morning.” And with that he gave her a wink and walked out.
Well there you go…my perfectly lovely, and perfectly true, angel story. I know it is sometimes so lonely to be the mother of a diabetic. We aim for perfection and feel as though the world is on our shoulders. The thing is, I feel really strongly that if we try to be perfect we will always fail. We weren’t made to be perfect, just human. All we can do is TRY our very best, LOVE our very best, HOPE our very best, and ENDURE our very best. God will make up the rest.
So today I want to share a story of hope. An experience I had that helped me through one of my darkest times.
It was less than two months after J was diagnosed and I was a complete Zombie. Tired, worried, scared. It was such a hard time. J was on a “long acting” insulin, (the name of it escapes me right now.) We had to give him a “light” ½ unit twice a day. Measuring a “light” ½ unit is almost impossible in a needle, and who knows how much of it he actually got. His short acting was an insulin called Regular. It was diluted in a bottle 5 parts saline to one part insulin. He also would get very tiny amounts of this. Needless to say, we never knew what his blood sugars were going to do. His long acting did not peak in adults, but it peaked in J. His short acting would peak 2 hours after we gave it to him, so we would have to predict what he was going to eat. (Which, of course, was impossible with a 9 month old.) We were never sure when a low would occur at night, so I would check every couple hours to be sure.
There was one night in particular that was extra rough. He needed food, then extra insulin, then more food. He was extra restless and he and I cried most the night together. Each time I tried to sleep I would say a silent prayer, a prayer I had said a hundred times before, “Lord, please have the angels watch out for J while I sleep, and have them wake me if I am needed. “ That night I couldn’t help but wonder if angels were real, or a wonderful fantasy I simply hoped for. I prayed for an answer, but was left to wonder. Between my alarms and J’s crying I was woken plenty that night. I must have sung him his lullaby a dozen times. (Each of my boys had their own lullaby. J’s happened to be one I learned from a college roommate.) It goes like this:
You came from a land where all is bright
To a world half day and a world half night
To guide you by day, you have my love
To guard you by night, your friends above.
So sleep…sleep…till the darkness ends, guarded by your angel friends.
Yes sleep…sleep…till the darkness ends, guarded by your angel friends.
There is one stands softly by your bed,
and another sits close, with her hand on your head.
There’s one at the window watching for the dawn,
and one waits to wake you when the night is gone.
By morning I was exhausted and too tired to make breakfast. All I could think about was downing one of my husband’s lovely doughnuts. I packed up the boys and headed for our bakery. Before I could make it to my husband’s arms, or a doughnut for that matter, I was stopped by Alice, (Not her real name.) She was so happy to see me; she wasn’t expecting I’d be in that day. She had a dream, a vivid dream, and she knew she had to share it with me.
Alice had a brother who had passed away somewhat recently. He was a young husband and father and of course very missed. In her dream she was working the counter at the bakery as usual when she noticed that it was pitch black outside. She was confused at how she could have worked so far into the night and went into the back to get her sweater and purse and close up. While in the back she heard the bell on the bakery door ring. She ran out to tell the customer she had closed. Lo and behold it was her brother, with his finger to his lip, shushing her. In his arms was a baby, and as he got closer she realized it was J sleeping soundly. “Would you walk home with me?” She asked her brother. “Sorry sis,” he said pointing to J. “I’m on duty until morning.” And with that he gave her a wink and walked out.
Well there you go…my perfectly lovely, and perfectly true, angel story. I know it is sometimes so lonely to be the mother of a diabetic. We aim for perfection and feel as though the world is on our shoulders. The thing is, I feel really strongly that if we try to be perfect we will always fail. We weren’t made to be perfect, just human. All we can do is TRY our very best, LOVE our very best, HOPE our very best, and ENDURE our very best. God will make up the rest.
Saturday, August 8, 2009
Our 11th Anniversary...Woo...Hoo... :(
So many. So many babies being diagnosed. It is breaking my heart. It’s hard enough to have a child diagnosed, but a baby with Type 1 is just a different world. They cannot communicate to you and tell you how they feel. They can be incredibly hungry from a low and all they can do is cry. They can have an awful headache from a high, and all they can do is cry. It is sometimes such an impossible situation.
I was there. 11 years ago today J was diagnosed at the tender age of 8 months. The helicopter took him away and my husband and I followed it in the car to the hospital. When we finally got there he was laying in a hospital bed, swallowed up by the enormity of it all. He was wide awake when I walked into his private ICU room. He looked at me and said his first word, Mama… his little voice cracking from dryness. We met with the endocrinologist on call and he gave us our first lesson on diabetes. He said, “Having a baby with diabetes is like asking you to run a marathon you haven’t trained for…uphill.” But in the same breath, he promised us the world. He said there would probably be a cure in 5-10 years, that J would lead a normal life, and that we would leave the hospital EXPERTS on diabetes with complete instructions on how to care for J. The catch was, after this on call endo left, another endo never came calling, and this hospital had dealt very little with type 1, much less a baby.
We were put in the hands of a nutritionist who knew diabetes mostly from a Type 2 perspective. For the purpose of this post, I’ll call her Wacko. She immediately commanded me to give J half of the formula I was feeding him at the time, and more meat. Lots of jars of plain meat. HELLO! J hated meat jars of baby food. (Don’t all babies?) She forbade me to feed him fruit jars and said vegetables were fine, as long as he had a shot after each jar. The woman really was a wacko. You can’t tell a baby, “Hey honey, you are going to eat half as much as you were before, and meat galore!” I think it is a good time to note as well that J, because of the ketoacidosis, was about 15 pounds when first brought in. The last thing he needed was less formula. To top it off, Wacko the Nutritionist actually yelled at me twice. Once because she came in and J had only eaten half of his jar of meat. (The kid was gagging for goodness sake!) And another time because I was feeding him his formula a half an hour earlier then she had scheduled. (Reality check, babies make their own schedules.)
Unfortunately, our only education was a book Wacko gave me. She said I couldn’t leave the hospital until I read the first 7 chapters and that there would be a test. (Liar! She never even looked to see if I opened the book.) J was there about a week and then they just sent us home. No sliding scale and absolutely no idea what we were doing. I asked the nurse how we were supposed to know how much insulin to give him and she said, “Call your pediatrician.” Our one saving grace was the social worker. She pulled us aside before we left and confided in us she was just filling in here and that UCSF was much better equipped to help us with J. She promised to try to get approval from our insurance to move us there. One week of 5 phone calls a day to J’s pediatrician, and Ryan and I were about to lose it. My sweet pediatrician was Indian with a very thick accent. It was so hard to understand what he was saying and he freely admitted to us that he was guessing and we needed a specialist. Then the call came, UCSF was approved, and our life changed…for the better.
They said, “Forget everything they have told you. Your baby eats what he wants, when he wants, and we will make the insulin work around that.” AHHH, nirvana! They had a full diabetic friendly team at our beckon call, and they had worked with a few other babies before. They immediately changed both the long and the short acting insulin and we left that office on a high from relief.
What is the moral of the story? It is okay to go endo shopping. It is okay to look around and find someone who you trust. Yes, 11 years ago our new endo fell into our laps and that was nothing less than a miracle. One of the biggest lessons I have learned over the last 11 years is we need to fight for what is best for our children. You are not stuck with what you are given. And if your doctor says something you are not sure about, it is ok to speak up and say, “Whoa! Why are you doing this? Why is this change being made?” My endo freely admits that I know what is going on better than she, and before she makes changes she asks me what I think. Yes, she knows more than I do, but I am included. If I think a change needs to be made, and she doesn’t, she EXPLAINS why. If you do not have a voice… talk to your doctors and tell them how you feel. If that doesn’t work, go shopping for a new one.
You will meet many doctors, regular doctors and specialists, that have no idea what to do with your child. Speak up. When your child is in the ER with an ear infection and they want to take away your insulin control of your child, and you don’t want them to, don’t let them! They have NO IDEA! I will check my child’s sugar; I will give him his insulin. I have taught many nurses in my day how to use a glucometer. Case and point: J had the stomach flu when he was 3 and ended up in the ER because he couldn’t keep anything down. He needed fluid through an IV. When he was admitted I told them, “He needs insulin now, he has ketones.” They told me, he didn’t need insulin, only fluids. They said the fluids will dilute the sugar and he’ll be fine. I put my foot down, “Uh, no, he needs fluids and insulin.” They came back with a syringe with 10 units of insulin in it, the nurse was just about to give it to him when I jumped up and said, “What is in that syringe?” When she told me they almost had to call security. J had never had more than 3 units of insulin in his life. They finally got hold of my endo and were told, step back, you hydrate him and Mom will take care of the diabetes.
Okay, disclaimer. Yes, listen to your doctor, but if another doctor wants to take over, make sure they talk to your endo first. I am not advocating doing your own thing no matter what the doc says… I am advocating communication. And of course, don’t quit an endo until you have interviewed and found someone better qualified and who has agreed to take you on.
As mothers of diabetics we need to take ownership of the fact that we live and breathe these children’s insulin and carb intakes. We can’t let anyone take us out of the picture.
I don’t know where this is all coming from, but I just feel like it had to be said. God bless all of you mothers, with Type 1 babies, and with Type 1 children. It’s not easy, but with each day we grow stronger. I used to hate it when people would say how strong I am, but you know what…I am strong, I am surviving, and I am stronger today than I was 11 years ago.
I don’t know how this soap box suddenly appeared, but I am stepping off now.
Does anyone know of a support group for people who don’t know how to write short posts?
I was there. 11 years ago today J was diagnosed at the tender age of 8 months. The helicopter took him away and my husband and I followed it in the car to the hospital. When we finally got there he was laying in a hospital bed, swallowed up by the enormity of it all. He was wide awake when I walked into his private ICU room. He looked at me and said his first word, Mama… his little voice cracking from dryness. We met with the endocrinologist on call and he gave us our first lesson on diabetes. He said, “Having a baby with diabetes is like asking you to run a marathon you haven’t trained for…uphill.” But in the same breath, he promised us the world. He said there would probably be a cure in 5-10 years, that J would lead a normal life, and that we would leave the hospital EXPERTS on diabetes with complete instructions on how to care for J. The catch was, after this on call endo left, another endo never came calling, and this hospital had dealt very little with type 1, much less a baby.
We were put in the hands of a nutritionist who knew diabetes mostly from a Type 2 perspective. For the purpose of this post, I’ll call her Wacko. She immediately commanded me to give J half of the formula I was feeding him at the time, and more meat. Lots of jars of plain meat. HELLO! J hated meat jars of baby food. (Don’t all babies?) She forbade me to feed him fruit jars and said vegetables were fine, as long as he had a shot after each jar. The woman really was a wacko. You can’t tell a baby, “Hey honey, you are going to eat half as much as you were before, and meat galore!” I think it is a good time to note as well that J, because of the ketoacidosis, was about 15 pounds when first brought in. The last thing he needed was less formula. To top it off, Wacko the Nutritionist actually yelled at me twice. Once because she came in and J had only eaten half of his jar of meat. (The kid was gagging for goodness sake!) And another time because I was feeding him his formula a half an hour earlier then she had scheduled. (Reality check, babies make their own schedules.)
Unfortunately, our only education was a book Wacko gave me. She said I couldn’t leave the hospital until I read the first 7 chapters and that there would be a test. (Liar! She never even looked to see if I opened the book.) J was there about a week and then they just sent us home. No sliding scale and absolutely no idea what we were doing. I asked the nurse how we were supposed to know how much insulin to give him and she said, “Call your pediatrician.” Our one saving grace was the social worker. She pulled us aside before we left and confided in us she was just filling in here and that UCSF was much better equipped to help us with J. She promised to try to get approval from our insurance to move us there. One week of 5 phone calls a day to J’s pediatrician, and Ryan and I were about to lose it. My sweet pediatrician was Indian with a very thick accent. It was so hard to understand what he was saying and he freely admitted to us that he was guessing and we needed a specialist. Then the call came, UCSF was approved, and our life changed…for the better.
They said, “Forget everything they have told you. Your baby eats what he wants, when he wants, and we will make the insulin work around that.” AHHH, nirvana! They had a full diabetic friendly team at our beckon call, and they had worked with a few other babies before. They immediately changed both the long and the short acting insulin and we left that office on a high from relief.
What is the moral of the story? It is okay to go endo shopping. It is okay to look around and find someone who you trust. Yes, 11 years ago our new endo fell into our laps and that was nothing less than a miracle. One of the biggest lessons I have learned over the last 11 years is we need to fight for what is best for our children. You are not stuck with what you are given. And if your doctor says something you are not sure about, it is ok to speak up and say, “Whoa! Why are you doing this? Why is this change being made?” My endo freely admits that I know what is going on better than she, and before she makes changes she asks me what I think. Yes, she knows more than I do, but I am included. If I think a change needs to be made, and she doesn’t, she EXPLAINS why. If you do not have a voice… talk to your doctors and tell them how you feel. If that doesn’t work, go shopping for a new one.
You will meet many doctors, regular doctors and specialists, that have no idea what to do with your child. Speak up. When your child is in the ER with an ear infection and they want to take away your insulin control of your child, and you don’t want them to, don’t let them! They have NO IDEA! I will check my child’s sugar; I will give him his insulin. I have taught many nurses in my day how to use a glucometer. Case and point: J had the stomach flu when he was 3 and ended up in the ER because he couldn’t keep anything down. He needed fluid through an IV. When he was admitted I told them, “He needs insulin now, he has ketones.” They told me, he didn’t need insulin, only fluids. They said the fluids will dilute the sugar and he’ll be fine. I put my foot down, “Uh, no, he needs fluids and insulin.” They came back with a syringe with 10 units of insulin in it, the nurse was just about to give it to him when I jumped up and said, “What is in that syringe?” When she told me they almost had to call security. J had never had more than 3 units of insulin in his life. They finally got hold of my endo and were told, step back, you hydrate him and Mom will take care of the diabetes.
Okay, disclaimer. Yes, listen to your doctor, but if another doctor wants to take over, make sure they talk to your endo first. I am not advocating doing your own thing no matter what the doc says… I am advocating communication. And of course, don’t quit an endo until you have interviewed and found someone better qualified and who has agreed to take you on.
As mothers of diabetics we need to take ownership of the fact that we live and breathe these children’s insulin and carb intakes. We can’t let anyone take us out of the picture.
I don’t know where this is all coming from, but I just feel like it had to be said. God bless all of you mothers, with Type 1 babies, and with Type 1 children. It’s not easy, but with each day we grow stronger. I used to hate it when people would say how strong I am, but you know what…I am strong, I am surviving, and I am stronger today than I was 11 years ago.
I don’t know how this soap box suddenly appeared, but I am stepping off now.
Does anyone know of a support group for people who don’t know how to write short posts?
Thursday, August 6, 2009
Endo Endo Bo Bendo...
Endo endo bo bendo, Banana fanna fo fendo, fe fi fo mendo….endo!
The Name Game! Come on, you’ve heard of it before! It makes everything sound so much nicer.
Needles needles bo beedles, banana fanna fo feedles, me my mo meedles…needles!
Maybe. Maybe I am crazy…
Yesterday was the big day…Our Endo appointment in San Francisco. I bathed the kids, made an early lunch and packed up J, B , L and the dog and headed out for the hour drive. My sweet sister in law came along to help keep the kids corralled. She is always there for me and I appreciate and love her more than she’ll ever know…but don’t be fooled by her sweet smile and helpful attitude…my sweet SIL comes with a catch. She doesn’t let me worry out loud. I began to talk about all the things I did wrong last month, and what the Endo was going to say… because I already knew…and she cut me off mid sentence and THREW our family motto in my face. “You get what you get and you don’t throw a fit.” I tried a couple more times to lament and she wouldn’t have any of it. “Meri, they love you there, they never say anything bad to you, and it will be fine!” So I changed the subject and we meandered our way through the freeway.
When we got to the tunnel, I held my breath and made my customary wish…”Please let their A1C’s be lower than I think they are.” (HEY! Don’t knock it ‘till you’ve tried it!) We hit stopped traffic right before the Golden Gate Bridge because some insane people were parachuting next to the bridge to promote a cell phone company. Then we went up Divisidero street, (which scares the pants off me when I drive it because it is as steep as Mt Everest,) we passed the Walgreens my sister in law made an emergency run into when L peed his pants a couple years ago, and then made it to the Medical Building with 10 minutes to spare.
I should probably confess that I know that my sweet SIL is right; they do love me at the endo. Partly because J was my doctors first endo patient as a Fellow, partly because I have three diabetics and they feel sorry for me, and partly because we are usually on the same page and agree on most everything. Sometimes I feel like they see how fragile I am, so they sugar coat everything so that I won’t crack and have a breakdown in their office. I made a mental note yesterday to tell them to give it to me straight… how bad of a mom am I really? But in my heart I knew they would NEVER make me feel bad, no matter how hard I prodded. Going to my endo is always like having a family reunion. My endo always comes out to hug us before our appointment. (We’ve known each other 11 years and in that time she met her husband, married him and had two kids.) The nurses, the nutritionists, the social workers and receptionists all gathers round and chat. We talk about how big the kids have grown and reminisce. They take in each boy one at a time and do their work so they don’t mix them up, (which has happened before,) and then we meet with our team of people.
So then the big announcement…L’s A1C is 7.1 (I’ll take it!) J’s A1C is 7.2 (SOLD!) B’s A1C was 7.9…..GONG!!!!!!!!!!!!!Bad mom!!!!BAD MOM ALERT!!!!
WAIT! Rewind a little…not bad mom because of the number…it is what it is and it’s really fine to me, I know B needed changes and I will move forward with our changes and improve it….It is just…
7.1 and 7.2 are here………………………………………………………………………………………and 7.9 is over here.
Fast forward to my dream/nightmare last night when B asked me, “Mom, why don’t you love me as much as J and L? Why do they have better numbers than me?” (Reminder, he didn’t really say that, it was a dream,) but the sick self deprecating hallucination stayed with me this morning. So, I made B his favorite breakfast, hugged him a few extra times and now I plan to let it go.
Guilt guilt bo built, banana fanna fo filt, me my mo milt…Guilt!
The Name Game! Come on, you’ve heard of it before! It makes everything sound so much nicer.
Needles needles bo beedles, banana fanna fo feedles, me my mo meedles…needles!
Maybe. Maybe I am crazy…
Yesterday was the big day…Our Endo appointment in San Francisco. I bathed the kids, made an early lunch and packed up J, B , L and the dog and headed out for the hour drive. My sweet sister in law came along to help keep the kids corralled. She is always there for me and I appreciate and love her more than she’ll ever know…but don’t be fooled by her sweet smile and helpful attitude…my sweet SIL comes with a catch. She doesn’t let me worry out loud. I began to talk about all the things I did wrong last month, and what the Endo was going to say… because I already knew…and she cut me off mid sentence and THREW our family motto in my face. “You get what you get and you don’t throw a fit.” I tried a couple more times to lament and she wouldn’t have any of it. “Meri, they love you there, they never say anything bad to you, and it will be fine!” So I changed the subject and we meandered our way through the freeway.
When we got to the tunnel, I held my breath and made my customary wish…”Please let their A1C’s be lower than I think they are.” (HEY! Don’t knock it ‘till you’ve tried it!) We hit stopped traffic right before the Golden Gate Bridge because some insane people were parachuting next to the bridge to promote a cell phone company. Then we went up Divisidero street, (which scares the pants off me when I drive it because it is as steep as Mt Everest,) we passed the Walgreens my sister in law made an emergency run into when L peed his pants a couple years ago, and then made it to the Medical Building with 10 minutes to spare.
I should probably confess that I know that my sweet SIL is right; they do love me at the endo. Partly because J was my doctors first endo patient as a Fellow, partly because I have three diabetics and they feel sorry for me, and partly because we are usually on the same page and agree on most everything. Sometimes I feel like they see how fragile I am, so they sugar coat everything so that I won’t crack and have a breakdown in their office. I made a mental note yesterday to tell them to give it to me straight… how bad of a mom am I really? But in my heart I knew they would NEVER make me feel bad, no matter how hard I prodded. Going to my endo is always like having a family reunion. My endo always comes out to hug us before our appointment. (We’ve known each other 11 years and in that time she met her husband, married him and had two kids.) The nurses, the nutritionists, the social workers and receptionists all gathers round and chat. We talk about how big the kids have grown and reminisce. They take in each boy one at a time and do their work so they don’t mix them up, (which has happened before,) and then we meet with our team of people.
So then the big announcement…L’s A1C is 7.1 (I’ll take it!) J’s A1C is 7.2 (SOLD!) B’s A1C was 7.9…..GONG!!!!!!!!!!!!!Bad mom!!!!BAD MOM ALERT!!!!
WAIT! Rewind a little…not bad mom because of the number…it is what it is and it’s really fine to me, I know B needed changes and I will move forward with our changes and improve it….It is just…
7.1 and 7.2 are here………………………………………………………………………………………and 7.9 is over here.
Fast forward to my dream/nightmare last night when B asked me, “Mom, why don’t you love me as much as J and L? Why do they have better numbers than me?” (Reminder, he didn’t really say that, it was a dream,) but the sick self deprecating hallucination stayed with me this morning. So, I made B his favorite breakfast, hugged him a few extra times and now I plan to let it go.
Guilt guilt bo built, banana fanna fo filt, me my mo milt…Guilt!
Saturday, August 1, 2009
Tsunami
It's coming...I can feel it. The new school year tsunami of emotion. It happens every year, and the sad part is I am aware of it. I KNOW that the depression and overwhelmingness of diabetes is coming, and I don't stop it. I see it on the horizon and I anticipate its coming and washing over me.
Shhh...do you hear it? The wave will toss my life up and down and...I will let it happen.
Or can I stop it?
Every year I spend weeks convincing the teachers that all will be okay. But you know what I have decided? I won't do it this year. I am tired of babying them and reassuring them. I am tired of going on every single field trip because, "It will make them fell better." I am tired of getting frantic calls from the office because my child is 300.
I have thought long and hard and this year I have decided I will give them only the information they NEED to know. They do not need to know that my target for the boys at school is the 100's. All they need to know is if they are under 100 they need an extra snack. Everything above it the insulin can fix. A 360 is not an emergency. My boys call me at snack and at lunch. If a number pops up in between that isn't perfect, that is okay. They are growing boys, they WILL NOT have perfect numbers everyday.
I know my boys get the best care. I know my boys a1c's have been amazing. I know that we are only doing the best we can. I won't let them get me down. They can judge me if they want...but the truth is,...(wait until you hear this epiphany,) I don't even really know that they are judging me. It has occurred to me that maybe, all this feeling like a bad mom when the school calls, is all my own heads doing. I have told them in the past that I want the boys in the low 100's. Maybe it isn't their fault they freak out when a high number pops up.
Could the tsunami originate from me? Can I stop it? Can I change my perspective this year?
I opened a fortune cookie the other day, and it may hold the answer. It said...
"We cannot direct the wind, but we can adjust the sails."
Maybe there is another way to navigate these fierce winds...maybe I can steer clear of the tsunami...It won't be easy, but I can feel my sails adjusting as I write this and it feels good.
Shhh...do you hear it? The wave will toss my life up and down and...I will let it happen.
Or can I stop it?
Every year I spend weeks convincing the teachers that all will be okay. But you know what I have decided? I won't do it this year. I am tired of babying them and reassuring them. I am tired of going on every single field trip because, "It will make them fell better." I am tired of getting frantic calls from the office because my child is 300.
I have thought long and hard and this year I have decided I will give them only the information they NEED to know. They do not need to know that my target for the boys at school is the 100's. All they need to know is if they are under 100 they need an extra snack. Everything above it the insulin can fix. A 360 is not an emergency. My boys call me at snack and at lunch. If a number pops up in between that isn't perfect, that is okay. They are growing boys, they WILL NOT have perfect numbers everyday.
I know my boys get the best care. I know my boys a1c's have been amazing. I know that we are only doing the best we can. I won't let them get me down. They can judge me if they want...but the truth is,...(wait until you hear this epiphany,) I don't even really know that they are judging me. It has occurred to me that maybe, all this feeling like a bad mom when the school calls, is all my own heads doing. I have told them in the past that I want the boys in the low 100's. Maybe it isn't their fault they freak out when a high number pops up.
Could the tsunami originate from me? Can I stop it? Can I change my perspective this year?
I opened a fortune cookie the other day, and it may hold the answer. It said...
"We cannot direct the wind, but we can adjust the sails."
Maybe there is another way to navigate these fierce winds...maybe I can steer clear of the tsunami...It won't be easy, but I can feel my sails adjusting as I write this and it feels good.