"How's Johnny's Diabetes doing?"
"Are you adjusting to diabetes yet?"
These questions, or the many variations of these questions are asked to me all the time. First I MUST say they are asked by my friends and people who CARE. Thank you! Plenty of people don't ask. Plenty of people don't know how to ask, scared to ask, or don't think its that big a deal. Thank you for caring enough to ask. I know you mean well.
Asking a mother of a toddler with type 1 "how's it going?" Is like asking a woman who is pissed, "are you okay?" She just says, "I'm fine."
My response is usually, "He's doing good."
What I can't say, because I can't bring myself to... because I know it upsets people... because if I upset people they might stop asking... because I feel weak saying it... but mostly because I am tired of crying is this.
He is three and covered in scars already.
He crys sometimes and asks me not to hurt him.
I HATE changing his pump site, but someone has to every 2-3 days.
His blood sugar is often over 400, making him feel bad.
We have to treat low blood sugars every other day or more and never for the same reason.
I got the news online that one of the other online mom's just lost their child due to low blood sugar.
He cries and tells me "I can't talk" because his BG is in the 40s and he is scared.
If he sleeps past 7am I wonder if he is alive... whats worse is if he isn't I don't want to find him so I send my husband to check. This is my biggest fear, and it comes to mind every day. And now I know 1 in 20 type 1 diabetics will die of low blood sugar.
If I wake up to use the restroom at night, I feel like a bad mom if I don't check his blood sugar.
I obsess about his weight, the carbs, and how much candy/juice he eats to treat low blood sugar. The doctor tells me he is "technically obese, but don't worry about that." I worry about it with every bite he takes.
I know more than you do about his D so please stop making helpful suggestions.
If there was a cure, even if it was with organic food, or some herb... I would know about it before you.
Its not going to get better or easier. We just are getting numb to it. It isn't going to even out on its own until he is done growing.... like in his 20s. This is my normal for the next 20 years. I can't see that far ahead so it feels like it will be my normal forever.
I let my infant daughter scream her head off while I ignore her in the other room treating a low, maybe it takes 5 minutes, maybe it takes 30. I am practically in tears listening to her.
Every day I am scared of the future, but put on a brave face.
Every day I look at my daughter and pray she doesn't get D until she is old enough to at least understand I don't want to hurt her.
But... "we are doing good," is going to be my response for a long time. We are doing good because Johnny woke up this morning. His kidneys are still working for now. He hasn't lost his eyes to D. He is in otherwise good health. He is a happy caring toddler, a wonderful big brother, and the reason I do what I do.
Thursday, August 30, 2012
Sunday, August 5, 2012
Alone In a Crowd
One of the many things I LOVE about living in Texas (insert sarcastic tone here) is the beautiful weather we get during the summer. I mean who doesn't love 109 degrees and humid? It might as well be snowing or pouring rain because this mama does not go outside when it is that hot. Does my 3 year old understand this? No. This year I decided I could not handle another stir crazy summer because I don't want to leave the house. Plus, this is our first summer with T1D in our lives and part of me wanted to "prove" (I don't know to who) that he could still be just as active as any other toddler. So we enrolled JJ for 3 classes a week at an indoor, aka air conditioned, facility for sports, gymnastics and martial arts. Yay me, I'm super mom again... right?
A few days ago was his weekly Martial Arts class. Martial Arts for 3 year olds is 1 part the cute outfits, 1 part learning to focus and avoid distractions, and 3 parts running around an obstacle course with a few stations for kicks and punching. At least that's what I see while watching from the "parent area" behind the glass. This particular morning was hard for us to get out of the house on time. I almost didn't go, but I forced it because the week prior we missed a class for this reason and I didn't want to fall into that routine. So we hurry out the door, and I didn't nurse Jocelyn as completely as I normally would. However, I brought a bottle of pumped milk and figured she would be fine. Its about a 20 minute drive to the gym and typically she falls asleep on the way and stays sleeping until we get home... but not this week.
Pretty much as soon as we get to the gym and Johnny joins his class my little Honey wakes up. She is not happy. I get a couple looks from other parents that say, "Oh, I've been there. It's fine." I pick her up. She is not happy. I do the jiggle the baby while trying to sit in my chair thing, she is not happy. I get more comments about "remembering those days," and "she is so precious." Again, more sympathy and understanding from the group of parents, which is really nice because I start to worry that my crying baby bothers them like it bothers me. I stand up and walk with her... nope didn't work. I sit down and try the bottle, I try it holding her in various positions, I try the pacifier, I finally resort to the standing bounce and half squat thing... nope. One woman offered to try the bottle for me as sometimes babies wont take a bottle from Mama, I declined but thought it was so nice to offer. 30 minutes have passed at this point. So I do what I know will work, but I hate to do. I buckle her back into the car seat and I become her human swing. If you have never done this before, it sounds easy. If you have... then you know better. To swing a car seat you have to lean over just enough to have the car seat swing past you legs with out hitting them, but not too far or you will fall over. Back pain is guaranteed, but its better than the screaming baby. This has now prompted a few DADS to smile at me, because lets be honest ladies... this is Dad's job. 15 minutes later and I feel she is a sleep enough that is now safe for me to stop being a swing and put her down. Whew! I am a sweaty mess from my 45 minute work out. I sit, blot off my sweat and reflect on how nice everyone was to me. Texas is great in that way. I grew up in CA, and I am positive I would not have had that kind of support from total strangers in the area of southern California that I am from. Class is almost over. I pack up the bottle, the pacifiers, and all the other Jocelyn goodies I had out. I get out Johnny's dexcom (its out of range when he is in class so it doesn't give a number) and his testing kit. When he comes out of class I have him sit and drink his "bubble juice" aka diluted carb free flavored carbonated water, and I test him. He keeps asking to get in the car. Jocelyn is stirring again now. I wait for the number, formulating a plan to get to the car, turn on the air, give him a snack and go home. I just need to know this number and have his dexcom connect so I can decide how much of his snack I should give him insulin for. After exercise he doesn't need insulin for every carb like he would before exercise. Tick tock... 5 seconds always takes forever to pass when I am in a hurry. Then it beeps and gives me the number I need to move on.
45
(Insert the F word here) For my non D friends. If you check your blood sugar in the morning after not eating for 12 hours you will most likely be in the 70s give or take 10. Below 80 and I feel shaky and anxious. 45 is beyond low for any one with a normally functioning pancreas. I've never been that low to tell you what it feels like, but this is what I read online:
Symptoms of hypoglycemia may include:
He was 185 and rising 45 minutes ago. Class has never caused him to go this low! Why this time?
Whatever, we move on. I have learned asking why is pointless. I hand him the 15 carb apple juice. The other day I let him have 17 carbs with out insulin to see how much it would bring him up and he went up about 200 points. So if D played by the laws of Math we should see him at 245 after some time as passed. I am now actually sweating. My adrenaline kicks in when I see numbers that low and I can't help but sweat. The parents are all clearing out, they get to leave. They don't have to check their kids blood every time they go somewhere to make sure it is at a safe level to take a 30 minute car ride. I feel that envious feeling I am ashamed to feel.
After 15 minutes, Jocelyn is awake, not crying but fussing. I am kneeling on the ground in front of Johnny sitting in his chair. I poke him again, I squeeze out the drop I need, I test him again, I wait for the number... I am almost sure it will be at least 100. We can get in the car, Jocelyn will fall back asleep, I can give Johnny his snack and if he is high when we get home I will correct him then. I have a plan... I always have a plan. The meter beeps and gives me the number.
56
45 pisses me off, but 56 after all of this effort just sinks my heart. We can't leave yet. I give him the package of skittles. I can feel people looking at us with out making eye contact. It is weird. My mind plays internal dialog like, "Why is that overweight mom, giving her husky boy skittles at the gym? Doesn't she know she is going to make him fat like her? That poor kid, I would never give my kid candy after exercising." Johnny eats his skittles and asks for more juice. I only have 1 box left and nothing carb free. I don't want to give him more juice because I KNOW the 15 carbs of skittles will be enough. I look around and see a water fountain down the hall. It is just too far away to leave Johnny and Jocelyn to go fill his sippy, but I can't pack everything up and take both of them either. It would take me just as long to pack up and get to the fountain as it will to wait until I can test him again. I still feel everyone looking at me, not saying anything. We are the elephant in the room. I decide, I am going to ask someone to fill his sippy at the fountain for me. I look around, not standing up because I am on the floor rocking Jocelyn to keep her from screaming. No one will make eye contact. Its a loud gym, I would have to yell to get attention at this point. People are walking by, looking at Johnny and quickly looking away. Even his instructors who KNOW he is diabetic just turn and go the other way. I am making them uncomfortable. Where are all those helpful supportive people now? At least 5 complete strangers would have helped me with a crying baby, but now that my son is in real danger I can't even get anyone's attention. 15 minutes go by, I test, he is 110. We pack up and leave.
On the way home I had a good cry. I felt so alone with so much on my shoulders. I couldn't wait to get home and tell someone who would understand. Someone who has been there, someone who has felt that anxiety of is 45 going to get better or worse? Do I have the glucagon shot? I was so eager to get home and share this with the women whom I have never met but mean so much to me. The Diabetic Online Community "DOC" means more to me than I ever thought it would. I think I even bashed them early into our Journey. I felt I wouldn't become one of those worried moms, and I would rise above it. But everyone needs a place to feel safe, and to feel understood and these moms (and a few dads) provide that place for me.
So even though I was too busy to actually share this story with them when I got home, knowing I could and that they would all understand made me feel so much better.
To those of you (and you know who you are) who are always there for me, riding this T1D ride with me, laughing with me, and crying with me. Thank you! I may not know your face, but I know you, I know your kids, I know which of you will be in tears by now, lol. Thank you for reminding me that I am never going to be alone.
A few days ago was his weekly Martial Arts class. Martial Arts for 3 year olds is 1 part the cute outfits, 1 part learning to focus and avoid distractions, and 3 parts running around an obstacle course with a few stations for kicks and punching. At least that's what I see while watching from the "parent area" behind the glass. This particular morning was hard for us to get out of the house on time. I almost didn't go, but I forced it because the week prior we missed a class for this reason and I didn't want to fall into that routine. So we hurry out the door, and I didn't nurse Jocelyn as completely as I normally would. However, I brought a bottle of pumped milk and figured she would be fine. Its about a 20 minute drive to the gym and typically she falls asleep on the way and stays sleeping until we get home... but not this week.
Pretty much as soon as we get to the gym and Johnny joins his class my little Honey wakes up. She is not happy. I get a couple looks from other parents that say, "Oh, I've been there. It's fine." I pick her up. She is not happy. I do the jiggle the baby while trying to sit in my chair thing, she is not happy. I get more comments about "remembering those days," and "she is so precious." Again, more sympathy and understanding from the group of parents, which is really nice because I start to worry that my crying baby bothers them like it bothers me. I stand up and walk with her... nope didn't work. I sit down and try the bottle, I try it holding her in various positions, I try the pacifier, I finally resort to the standing bounce and half squat thing... nope. One woman offered to try the bottle for me as sometimes babies wont take a bottle from Mama, I declined but thought it was so nice to offer. 30 minutes have passed at this point. So I do what I know will work, but I hate to do. I buckle her back into the car seat and I become her human swing. If you have never done this before, it sounds easy. If you have... then you know better. To swing a car seat you have to lean over just enough to have the car seat swing past you legs with out hitting them, but not too far or you will fall over. Back pain is guaranteed, but its better than the screaming baby. This has now prompted a few DADS to smile at me, because lets be honest ladies... this is Dad's job. 15 minutes later and I feel she is a sleep enough that is now safe for me to stop being a swing and put her down. Whew! I am a sweaty mess from my 45 minute work out. I sit, blot off my sweat and reflect on how nice everyone was to me. Texas is great in that way. I grew up in CA, and I am positive I would not have had that kind of support from total strangers in the area of southern California that I am from. Class is almost over. I pack up the bottle, the pacifiers, and all the other Jocelyn goodies I had out. I get out Johnny's dexcom (its out of range when he is in class so it doesn't give a number) and his testing kit. When he comes out of class I have him sit and drink his "bubble juice" aka diluted carb free flavored carbonated water, and I test him. He keeps asking to get in the car. Jocelyn is stirring again now. I wait for the number, formulating a plan to get to the car, turn on the air, give him a snack and go home. I just need to know this number and have his dexcom connect so I can decide how much of his snack I should give him insulin for. After exercise he doesn't need insulin for every carb like he would before exercise. Tick tock... 5 seconds always takes forever to pass when I am in a hurry. Then it beeps and gives me the number I need to move on.
45
(Insert the F word here) For my non D friends. If you check your blood sugar in the morning after not eating for 12 hours you will most likely be in the 70s give or take 10. Below 80 and I feel shaky and anxious. 45 is beyond low for any one with a normally functioning pancreas. I've never been that low to tell you what it feels like, but this is what I read online:
Symptoms of hypoglycemia may include:
- weakness, drowsiness, confusion, hunger, and dizziness.
- paleness, headache, irritability, trembling, sweating, rapid heart beat, and a cold, clammy feeling are also signs of low blood sugar.
- loss of consciousness and coma (in severe cases)
He was 185 and rising 45 minutes ago. Class has never caused him to go this low! Why this time?
Whatever, we move on. I have learned asking why is pointless. I hand him the 15 carb apple juice. The other day I let him have 17 carbs with out insulin to see how much it would bring him up and he went up about 200 points. So if D played by the laws of Math we should see him at 245 after some time as passed. I am now actually sweating. My adrenaline kicks in when I see numbers that low and I can't help but sweat. The parents are all clearing out, they get to leave. They don't have to check their kids blood every time they go somewhere to make sure it is at a safe level to take a 30 minute car ride. I feel that envious feeling I am ashamed to feel.
After 15 minutes, Jocelyn is awake, not crying but fussing. I am kneeling on the ground in front of Johnny sitting in his chair. I poke him again, I squeeze out the drop I need, I test him again, I wait for the number... I am almost sure it will be at least 100. We can get in the car, Jocelyn will fall back asleep, I can give Johnny his snack and if he is high when we get home I will correct him then. I have a plan... I always have a plan. The meter beeps and gives me the number.
56
45 pisses me off, but 56 after all of this effort just sinks my heart. We can't leave yet. I give him the package of skittles. I can feel people looking at us with out making eye contact. It is weird. My mind plays internal dialog like, "Why is that overweight mom, giving her husky boy skittles at the gym? Doesn't she know she is going to make him fat like her? That poor kid, I would never give my kid candy after exercising." Johnny eats his skittles and asks for more juice. I only have 1 box left and nothing carb free. I don't want to give him more juice because I KNOW the 15 carbs of skittles will be enough. I look around and see a water fountain down the hall. It is just too far away to leave Johnny and Jocelyn to go fill his sippy, but I can't pack everything up and take both of them either. It would take me just as long to pack up and get to the fountain as it will to wait until I can test him again. I still feel everyone looking at me, not saying anything. We are the elephant in the room. I decide, I am going to ask someone to fill his sippy at the fountain for me. I look around, not standing up because I am on the floor rocking Jocelyn to keep her from screaming. No one will make eye contact. Its a loud gym, I would have to yell to get attention at this point. People are walking by, looking at Johnny and quickly looking away. Even his instructors who KNOW he is diabetic just turn and go the other way. I am making them uncomfortable. Where are all those helpful supportive people now? At least 5 complete strangers would have helped me with a crying baby, but now that my son is in real danger I can't even get anyone's attention. 15 minutes go by, I test, he is 110. We pack up and leave.
On the way home I had a good cry. I felt so alone with so much on my shoulders. I couldn't wait to get home and tell someone who would understand. Someone who has been there, someone who has felt that anxiety of is 45 going to get better or worse? Do I have the glucagon shot? I was so eager to get home and share this with the women whom I have never met but mean so much to me. The Diabetic Online Community "DOC" means more to me than I ever thought it would. I think I even bashed them early into our Journey. I felt I wouldn't become one of those worried moms, and I would rise above it. But everyone needs a place to feel safe, and to feel understood and these moms (and a few dads) provide that place for me.
So even though I was too busy to actually share this story with them when I got home, knowing I could and that they would all understand made me feel so much better.
To those of you (and you know who you are) who are always there for me, riding this T1D ride with me, laughing with me, and crying with me. Thank you! I may not know your face, but I know you, I know your kids, I know which of you will be in tears by now, lol. Thank you for reminding me that I am never going to be alone.
The Bionic Boy
Johnny has officially been pumping insulin for 4 weeks! We are really happy with the results and learning new things about Type 1 Diabetes, about managing his BG with a pump, and about continuing to live as close to how we would have been with out D in our lives. We have a lot more highs and lows than we used to but, I can see reasons and trends and we CAN fix most of them, but we are making small changes so it is a slow process.
For the few days leading up to Johnny switching from MDI (Multiple Daily Injections) to Pumping I was wondering if I was going to change my mind about the whole thing. Every time I thought about seeing him "hooked up" to the pump I would cry, a lot. I don't talk about it much because I feel I am not allowed to be weak when it is really Johnny, not me, that has to go through this forever. Let me explain. I still struggle with March 7th. You see... March 7th 2012 was the last day my son didn't have an illness. Of course he did actually have it but it was March 7th that it was diagnosed, given a name, and put into our reality. When I look around my house, there are 18 framed pictures just downstairs of this sweet boy. I am that mom! I would have prints of every event done and hang them up. But I haven't done that since his diagnosis. His 3rd birthday party was just 3 weeks later, and now 4 months after that and I still haven't had a single print made of it. Part of me doesn't want to take down the pictures of him when he was still "perfect." I want to hold on to that baby. So as far as pumping goes... I knew that the day we started pumping, July 9th would feel similar. From that day on I would not see my baby with out a tube connecting him to a pump. The thought of him coming downstairs last Christmas morning with out a pump connected to him, and knowing that will be the last Christmas I see him with out one eats away at me. I think of swim parties, and Halloween costumes, and so many other times when I know that PUMP will be there like a constant reminder and announcement to others of his Diabetes. It doesn't matter how much it helps him, I am mourning the loss of the boy with out on.
But now 4 weeks later. It bothers me so much less. And mostly because he doesn't care at all.
I now present to you The Bionic Boy, with a better control of his blood glucose!
For the few days leading up to Johnny switching from MDI (Multiple Daily Injections) to Pumping I was wondering if I was going to change my mind about the whole thing. Every time I thought about seeing him "hooked up" to the pump I would cry, a lot. I don't talk about it much because I feel I am not allowed to be weak when it is really Johnny, not me, that has to go through this forever. Let me explain. I still struggle with March 7th. You see... March 7th 2012 was the last day my son didn't have an illness. Of course he did actually have it but it was March 7th that it was diagnosed, given a name, and put into our reality. When I look around my house, there are 18 framed pictures just downstairs of this sweet boy. I am that mom! I would have prints of every event done and hang them up. But I haven't done that since his diagnosis. His 3rd birthday party was just 3 weeks later, and now 4 months after that and I still haven't had a single print made of it. Part of me doesn't want to take down the pictures of him when he was still "perfect." I want to hold on to that baby. So as far as pumping goes... I knew that the day we started pumping, July 9th would feel similar. From that day on I would not see my baby with out a tube connecting him to a pump. The thought of him coming downstairs last Christmas morning with out a pump connected to him, and knowing that will be the last Christmas I see him with out one eats away at me. I think of swim parties, and Halloween costumes, and so many other times when I know that PUMP will be there like a constant reminder and announcement to others of his Diabetes. It doesn't matter how much it helps him, I am mourning the loss of the boy with out on.
But now 4 weeks later. It bothers me so much less. And mostly because he doesn't care at all.
I now present to you The Bionic Boy, with a better control of his blood glucose!
 |
| Device on his arm is his Dexcom sensor. It is wireless and comunicates with the reciever to tell us if his BG is going up or down. The belt he wears holds his insulin pump. You can see a small tube coming down from his belt to the blue clip on his thigh. That is clipped into the adhesive area where a small canula is inserted under the skin. So he can unclip the tube and take a bath with out wearing the pump, and with out needing to reinsert the canula. |
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