Friday, March 4, 2016
Saturday, February 27, 2016
And the hits keep coming....
.....and I have no words. I will write when I can and when I find the words. Mental disease, diabetes, cancer...they all suck. That is all for now.
Sunday, February 21, 2016
Bow ties are Cool
I've been crying my eyes out. It's been a rough month. The boys have been sick quite a bit since the end of January and that has definitely taken it's toll on me, just last week Drago was battling a stomach bug. Then my sis-in-law was in the ICU and hospital for a week for DKA. Then a boy in the D.O.C. was fighting for his life after going into DKA from the stomach bug (same age as SugarBear and diagnosed for 7years I think) and lost his fight. And then the straw that broke the camels back, that made this heartbreak so unbearable, that opened the waterworks full force. I found out yesterday the boy we took home from school all last year and the year before, who transferred to a different school this year, attempted suicide by hanging. He's in a coma and his future is uncertain. What is certain is he will not be the boy we knew; the boy who wore bow ties because they are cool, who could solve a Rubix cube, who loved doing origami, who was thinking about going into criminal investigation, who always had an easy smile and a kind word is changed. He attempted to kill himself three weeks ago. I found out yesterday when I went to get my hair done by his Mom. I could tell something was going on and when I asked her she said "You don't want to know, it will ruin your day."
Parenting is so hard. I struggle to find the words. We all have this journey and some have the roughest roads through the darkest forests. I'm sitting in the dark, weeping. I weep for the young man who felt there was no other answer. I weep for the Mom who can only take one moment, one step at a time because she feels so lost. I weep for the Grandma in whose eyes I saw the heartbreak. I weep for my boys who struggle to fight to live knowing someone who gave up. I weep for my husband who interacted with this boy like a son. I weep because I love them all and my heart doesn't know what else to do.
Parenting is so hard. I struggle to find the words. We all have this journey and some have the roughest roads through the darkest forests. I'm sitting in the dark, weeping. I weep for the young man who felt there was no other answer. I weep for the Mom who can only take one moment, one step at a time because she feels so lost. I weep for the Grandma in whose eyes I saw the heartbreak. I weep for my boys who struggle to fight to live knowing someone who gave up. I weep for my husband who interacted with this boy like a son. I weep because I love them all and my heart doesn't know what else to do.
Saturday, January 30, 2016
Rays of Light
We've been lost in the woods all week, stumbling in the dark on roots and stones, the occasional Rays of light filtering through the leaves allowing us to scramble towards a path.
Both boys were diagnosed with strep on Tuesday, as was I and my hubby. We've all been sick since Monday. It has been an extremely challenging week. High blood sugars, extreme lows, trace to moderate ketones, hyper vigilance all while feeling awful. But we have one of those Rays of light in the Dexcoms, which allowed us the ability to stay on top of everything. I truly believe these devices have kept us out of the hospital. To us they are necessary for life.
The irony of being sick this past week is that the week before it was such a contrast. Sugar Bear turned 11 on the 17th and on the 18th my in-laws came in from the east coast for a week long visit. The 17th was beautiful and peaceful and everything my little homebody likes. On the 21st, hubby and I got to go out to dinner thanks to my in-laws. We so rarely get to spend time just the two of us. Before leaving I went over the safe sitter sheet with my mother-in-law and gave a crash course on using glucagon. With the Dexcom on both boys it makes these excursions less worrisome. We can still check on them with the share ap. It eases our anxiety. On Friday my stepson showed up for a visit. The boys were thrilled. On Saturday, the 23rd, we had Sugar Bear's birthday party at a laser tag place. Of the nine children (three ours) and nine adults, six are Type 1 (five children and one adult). Two of the T1 kids were buddies of Sugar Bear's from Diabetes camp. It was a wonderful party. Of course seeing three exact kits on the table really hit me. And we had some lows and highs that happened while there and lots of carb counting and different ways of dosing were noticed by my in-laws, but overall it was a great party. Immediately after the party our family with my stepson and my in-laws headed to a friend's house for some family portraits to be taken. While there, Drago did go low. And then after portraits, hubby and I got ready to go out to my work party. We were leaving the boys for a little over five hours, the longest we've been out besides while the boys were at camp. Of course as we were on our way out the door Sugar Bear's Dex was beeping that he was low. We left anyway knowing my in-laws got this. The work party was awesome and my in-laws did just fine with the boys. Of course Sugar Bear started going high before we got back and he was asleep and my mother-in-law did seem a bit stressed. Handling all the alarms and fluctuating blood sugars in both kids isn't easy. They all did great.
My stepson left Sunday afternoon.
Sunday after the party was "normal" for us but I noticed numbers on Sugar Bear seemed to be going up and then Monday both were sick. My in-laws left early Monday morning. And we were back to just the four of us struggling in our forest with not much light but at least our cups weren't empty.
Both boys were diagnosed with strep on Tuesday, as was I and my hubby. We've all been sick since Monday. It has been an extremely challenging week. High blood sugars, extreme lows, trace to moderate ketones, hyper vigilance all while feeling awful. But we have one of those Rays of light in the Dexcoms, which allowed us the ability to stay on top of everything. I truly believe these devices have kept us out of the hospital. To us they are necessary for life.
The irony of being sick this past week is that the week before it was such a contrast. Sugar Bear turned 11 on the 17th and on the 18th my in-laws came in from the east coast for a week long visit. The 17th was beautiful and peaceful and everything my little homebody likes. On the 21st, hubby and I got to go out to dinner thanks to my in-laws. We so rarely get to spend time just the two of us. Before leaving I went over the safe sitter sheet with my mother-in-law and gave a crash course on using glucagon. With the Dexcom on both boys it makes these excursions less worrisome. We can still check on them with the share ap. It eases our anxiety. On Friday my stepson showed up for a visit. The boys were thrilled. On Saturday, the 23rd, we had Sugar Bear's birthday party at a laser tag place. Of the nine children (three ours) and nine adults, six are Type 1 (five children and one adult). Two of the T1 kids were buddies of Sugar Bear's from Diabetes camp. It was a wonderful party. Of course seeing three exact kits on the table really hit me. And we had some lows and highs that happened while there and lots of carb counting and different ways of dosing were noticed by my in-laws, but overall it was a great party. Immediately after the party our family with my stepson and my in-laws headed to a friend's house for some family portraits to be taken. While there, Drago did go low. And then after portraits, hubby and I got ready to go out to my work party. We were leaving the boys for a little over five hours, the longest we've been out besides while the boys were at camp. Of course as we were on our way out the door Sugar Bear's Dex was beeping that he was low. We left anyway knowing my in-laws got this. The work party was awesome and my in-laws did just fine with the boys. Of course Sugar Bear started going high before we got back and he was asleep and my mother-in-law did seem a bit stressed. Handling all the alarms and fluctuating blood sugars in both kids isn't easy. They all did great.
My stepson left Sunday afternoon.
Sunday after the party was "normal" for us but I noticed numbers on Sugar Bear seemed to be going up and then Monday both were sick. My in-laws left early Monday morning. And we were back to just the four of us struggling in our forest with not much light but at least our cups weren't empty.
Wednesday, December 30, 2015
Easier?
The first diaversary was challenging, especially looking at the things I posted leading up to Sugar Bear's diagnosis. This year, year 2, totally different but still challenging.
I haven't written anything in months, not because I don't want to but keeping two children alive during the holidays isn't as straightforward as the rest of the year. Halloween, Thanksgiving, Christmas are all "food" celebrations. Has this journey gotten "easier"? I get asked that periodically. Not really, is how I want to honestly answer. Have you ever been told that if you put a live frog in a pot of boiling water they immediately jump out but if you put him in a cold pot of water and slowly bring it to a boil he'll stay until he dies? Yup, I think this pot of slightly warm water is soooo relaxing.
I received a Dr. Who weeping angel t-shirt for Christmas. It got me thinking. Type 1 is a lot like a weeping angel, as long as you don't blink it doesn't seem scary. I know that's a bit of a stretch but it's how my brain works. So I wore that tee under my sweater on the second diavresary of Sugar Bear's diagnosis. It made sense to me.
So here I sit, two years later, in my quiet before work contemplating where we've come on our journey. I'm thankful for insulin. I can't imagine how awful life was for a family before that discovery when two years would have been the max that someone would suffer with this disease. And the treatment before insulin was starvation and whiskey (to take the pain away). I count my blessings. But it doesn't mean I've made best buddies with diabetes. It doesn't mean it's any easier. It's just always "new normals". The Dexcom addition to this journey has eased anxieties, and that's wonderful but we still have worries they just don't make me cry as easily. I think I've hardened a little to the monster in the room. My family and I can have conversations of what would we do if one of the boys wasn't waking up or worse when we walk into their room. We can "joke" about highs and lows. Both boys are gaining in independence of their own care. But it's weird to ask "what is your pain level" when their Dexcom has been bumped and is hurting to gauge whether it needs to come out of their body. It's weird to constantly worry whether the sticky low they're having requires glucagon or a trip to the hospital. It's odd to be an organ for not just one child but two.
So I made my annual trip to the Children's Hospital to deliver treat bags for the kids on the third floor, treats to the doctors and nurses in the ER, the PICU, and 3rd floor as well as a special gift to the ER doctor that I consider Sugar Bear's angel. She's the one that figured out what was going on. She's the one that gave the diagnosis. She's the one that held me as I weeped. I'll never forget. Because before her we'd had two misdiagnoses that could have cost him his life. Because of her, he's here.
No, it's not easier but we know how to live and that makes it special.
I haven't written anything in months, not because I don't want to but keeping two children alive during the holidays isn't as straightforward as the rest of the year. Halloween, Thanksgiving, Christmas are all "food" celebrations. Has this journey gotten "easier"? I get asked that periodically. Not really, is how I want to honestly answer. Have you ever been told that if you put a live frog in a pot of boiling water they immediately jump out but if you put him in a cold pot of water and slowly bring it to a boil he'll stay until he dies? Yup, I think this pot of slightly warm water is soooo relaxing.
I received a Dr. Who weeping angel t-shirt for Christmas. It got me thinking. Type 1 is a lot like a weeping angel, as long as you don't blink it doesn't seem scary. I know that's a bit of a stretch but it's how my brain works. So I wore that tee under my sweater on the second diavresary of Sugar Bear's diagnosis. It made sense to me.
So here I sit, two years later, in my quiet before work contemplating where we've come on our journey. I'm thankful for insulin. I can't imagine how awful life was for a family before that discovery when two years would have been the max that someone would suffer with this disease. And the treatment before insulin was starvation and whiskey (to take the pain away). I count my blessings. But it doesn't mean I've made best buddies with diabetes. It doesn't mean it's any easier. It's just always "new normals". The Dexcom addition to this journey has eased anxieties, and that's wonderful but we still have worries they just don't make me cry as easily. I think I've hardened a little to the monster in the room. My family and I can have conversations of what would we do if one of the boys wasn't waking up or worse when we walk into their room. We can "joke" about highs and lows. Both boys are gaining in independence of their own care. But it's weird to ask "what is your pain level" when their Dexcom has been bumped and is hurting to gauge whether it needs to come out of their body. It's weird to constantly worry whether the sticky low they're having requires glucagon or a trip to the hospital. It's odd to be an organ for not just one child but two.
So I made my annual trip to the Children's Hospital to deliver treat bags for the kids on the third floor, treats to the doctors and nurses in the ER, the PICU, and 3rd floor as well as a special gift to the ER doctor that I consider Sugar Bear's angel. She's the one that figured out what was going on. She's the one that gave the diagnosis. She's the one that held me as I weeped. I'll never forget. Because before her we'd had two misdiagnoses that could have cost him his life. Because of her, he's here.
No, it's not easier but we know how to live and that makes it special.
Sunday, October 4, 2015
Just Weather
Our hometown JDRF walk was yesterday morning. We had a new venue. Previously it had been at a park with lots of scenery, yesterday's walk started at the ball field downtown. Drago has been not well for two months. We have a GI appointment in a couple weeks that can't come soon enough. Anyway, he missed school Thursday and Friday with more than "normal" sickness. It seems like he has a stomach bug on top of whatever else is going on. So of course he wasn't going to be participating in the walk. And then Friday Sugar Bear also wasn't feeling good. So our team dwindled down to just me. (We didn't have any family or friends signed up this time to walk with us.).
I woke yesterday morning to temps in the mid 40s, windy, overcast, and a light rain. I layered on two long sleeve shirts with a third shirt on top, our team shirt. Hoping I'd stay warm but not too warm. I headed out at 7:54am and got to the venue at 8, did I mention it was literally in my backyard. Found a parking space easily and went to the registration window to turn in one more donation to make our team total $530. My goal for the team was a thousand. It was just me and hubby fundraising. Next time I might make the VIP goal. I hope so. Every bit helps my boys, and they were in the best hands with Daddy while I weathered the walk. After registering I entered the stadium, picked up the four t-shirt tickets and went to the window to get my family their one walk shirts and to pick up the boys special blue shirts for having Type 1. And who should I see at the window? Drago's psychologist was volunteering with JDRF. It warmed my heart to see her. She has Type 1 too and has been amazing with Drago. After t-shirts I walked around and checked out the vendors and snacks. I filled my JDRF cup with half coffee and half hot chocolate, grabbed a banana and talked to the vendors. One thing I've noticed going to events like these is there is always that one question, how are you connected. Before Drago's diagnosis I was the "newly" diagnosed last year. This year there is this look that people get when they find out I have two Type 1s. It's hard to describe. It's a mix of shock, surprise, pity, and genuine concern. I had one vendor say that we were part of the "newly diagnosed" again and how rare that was. And there is always the inevitable "and how are you doing" question. And if I'm talking to a family with more than one child but only one T1 there is the fear behind the eyes that this could happen to them too. Anyway, I made my way through Lilly's, TSlim, animas ping/vibe, Omnipod, and of course Dexcom. Not a lot of new information considering we've been at this almost two years. Even though we don't pump we have been learning about them for quite some time. I also saw some Kirkland gummies which warmed my heart. Those came directly from my work, Costco. I then made my way to find a seat since it was around 8:45 and the walk would start at
9. I listened to the announcements and the gratitude for the sponsors.
And then it was time. I headed for the JDRF arch with hundreds of other people out from the sheltering roof to walk in the elements. People of all ages, babies to great grandparents. Strollers to wheelchairs. Everyone affected in some way by Type 1. Everyone wanting a cure. The first quarter of the walk was in with the buildings and the streets. A light rain falling, we made our way across the bridge of murky water to a park. The grass still green even in the dreary cloud ridden day. For me it was quiet. I could walk my own pace. I had no one to wait for, no one to catch up to. I walked hurriedly. It was cold and my thoughts were on my boys at home. In the park after we rounded the bend to come back along the river we were met with The Mile of Hope. Photos of those with Type 1 dotted the banks, and these were the ones that raised $200 by a specific date. I knew it was not everyone. But it was my boys, one of the boys Sugar Bear met at camp over the summer, newly met families because of this disease. The youngest pictured was 17 months old and the oldest was 55. This part of the walk always makes me emotional. This time I also noticed the other signs with two T1s. And the rain started to come down harder and the wind picked up and we were walking into it. At first I picked up my pace but then I came to a woman pushing a stroller. A 10 month old baby girl inside. The stroller was getting soaked. I opened my umbrella and did my best to keep the water off the stroller while talking to the woman. She wasn't the Mom, the Mom was walking behind us. She was a cousin and they had numerous family with T1. They've been walking for 12 years. They travelled five hours to support their family. Back into the buildings with the rain beating at us and then And then we were back under the roof. I was soaked. I was cold. I was contemplative. I searched out a bathroom to dry off a bit. I ran into our dietician and then one of the Moms I've met on this journey. I got the biggest, sweetest hug. I needed it. I found a seat and listened to the winners of the shirt designs. I searched out a Mom I was encouraged to meet who's daughter has been battling this disease for 7 years and is Drago's age. I was amazed at the size of her team. Hard to miss since they were all in bright yellow. She informed me that they have great support. They make the day all about her daughter. Her in-laws fly in from out of state to walk with them. It was amazing. And then I went home.
I showed the boys all the goodies I picked up at the walk. Sugar Bear immediately put on his sunglasses. Sunglasses on a raining, overcast, stormy day. Both were excited about the gummies and fig bars I'd snatched for them. I don't think I was home more than 15 minutes before Drago threw up. Poor boy. And then I was on the phone with the endocrinologist formulating a plan to make it okay through this storm. One step at a time. Warm and dry I shrugged my shoulders and willingly walked back into it.
I woke yesterday morning to temps in the mid 40s, windy, overcast, and a light rain. I layered on two long sleeve shirts with a third shirt on top, our team shirt. Hoping I'd stay warm but not too warm. I headed out at 7:54am and got to the venue at 8, did I mention it was literally in my backyard. Found a parking space easily and went to the registration window to turn in one more donation to make our team total $530. My goal for the team was a thousand. It was just me and hubby fundraising. Next time I might make the VIP goal. I hope so. Every bit helps my boys, and they were in the best hands with Daddy while I weathered the walk. After registering I entered the stadium, picked up the four t-shirt tickets and went to the window to get my family their one walk shirts and to pick up the boys special blue shirts for having Type 1. And who should I see at the window? Drago's psychologist was volunteering with JDRF. It warmed my heart to see her. She has Type 1 too and has been amazing with Drago. After t-shirts I walked around and checked out the vendors and snacks. I filled my JDRF cup with half coffee and half hot chocolate, grabbed a banana and talked to the vendors. One thing I've noticed going to events like these is there is always that one question, how are you connected. Before Drago's diagnosis I was the "newly" diagnosed last year. This year there is this look that people get when they find out I have two Type 1s. It's hard to describe. It's a mix of shock, surprise, pity, and genuine concern. I had one vendor say that we were part of the "newly diagnosed" again and how rare that was. And there is always the inevitable "and how are you doing" question. And if I'm talking to a family with more than one child but only one T1 there is the fear behind the eyes that this could happen to them too. Anyway, I made my way through Lilly's, TSlim, animas ping/vibe, Omnipod, and of course Dexcom. Not a lot of new information considering we've been at this almost two years. Even though we don't pump we have been learning about them for quite some time. I also saw some Kirkland gummies which warmed my heart. Those came directly from my work, Costco. I then made my way to find a seat since it was around 8:45 and the walk would start at
9. I listened to the announcements and the gratitude for the sponsors.
And then it was time. I headed for the JDRF arch with hundreds of other people out from the sheltering roof to walk in the elements. People of all ages, babies to great grandparents. Strollers to wheelchairs. Everyone affected in some way by Type 1. Everyone wanting a cure. The first quarter of the walk was in with the buildings and the streets. A light rain falling, we made our way across the bridge of murky water to a park. The grass still green even in the dreary cloud ridden day. For me it was quiet. I could walk my own pace. I had no one to wait for, no one to catch up to. I walked hurriedly. It was cold and my thoughts were on my boys at home. In the park after we rounded the bend to come back along the river we were met with The Mile of Hope. Photos of those with Type 1 dotted the banks, and these were the ones that raised $200 by a specific date. I knew it was not everyone. But it was my boys, one of the boys Sugar Bear met at camp over the summer, newly met families because of this disease. The youngest pictured was 17 months old and the oldest was 55. This part of the walk always makes me emotional. This time I also noticed the other signs with two T1s. And the rain started to come down harder and the wind picked up and we were walking into it. At first I picked up my pace but then I came to a woman pushing a stroller. A 10 month old baby girl inside. The stroller was getting soaked. I opened my umbrella and did my best to keep the water off the stroller while talking to the woman. She wasn't the Mom, the Mom was walking behind us. She was a cousin and they had numerous family with T1. They've been walking for 12 years. They travelled five hours to support their family. Back into the buildings with the rain beating at us and then And then we were back under the roof. I was soaked. I was cold. I was contemplative. I searched out a bathroom to dry off a bit. I ran into our dietician and then one of the Moms I've met on this journey. I got the biggest, sweetest hug. I needed it. I found a seat and listened to the winners of the shirt designs. I searched out a Mom I was encouraged to meet who's daughter has been battling this disease for 7 years and is Drago's age. I was amazed at the size of her team. Hard to miss since they were all in bright yellow. She informed me that they have great support. They make the day all about her daughter. Her in-laws fly in from out of state to walk with them. It was amazing. And then I went home.
I showed the boys all the goodies I picked up at the walk. Sugar Bear immediately put on his sunglasses. Sunglasses on a raining, overcast, stormy day. Both were excited about the gummies and fig bars I'd snatched for them. I don't think I was home more than 15 minutes before Drago threw up. Poor boy. And then I was on the phone with the endocrinologist formulating a plan to make it okay through this storm. One step at a time. Warm and dry I shrugged my shoulders and willingly walked back into it.
Friday, September 18, 2015
Life Support
I have two sons. They both are on life support. Without insulin shots they would die. With too much insulin they could die. It's a balance.
I learned recently that a teenage T1D girl died in the hospital. The doctors and nurses thought they had her stabilized. She had arrived in DKA, which can happen at anytime, due to high blood sugars and not taking her insulin. She passed away from a seizure while talking and laughing with her family. In a hospital. Surrounded by nurses and doctors.
When I used to think of life support before Type 1 entered our lives I'd see images like my Great Grandmother, in the hospital hooked up to machines. Tubes and wires everywhere. Tools to keep her alive.
Type 1s have tubes, and wires, and machines to keep them alive. My boys right now "only" have a continuous glucose monitor, Dexcom, attached to their body, but our family jokingly refers to it as going cyborg. One might try to say it's not really necessary for the life support, but they would be wrong. In the past couple of weeks it has saved us from using glucagon at least three times, two on the oldest and once for the youngest. It is a game changer.
At the endocronologist appointment yesterday we got to download the data with the boys doctor. The CGM is helping. Both boys had good A1cs. Drago's stayed the same even though he has been pretty sick the last few weeks. And Sugar Bear's went down!
Both boys had to have labs drawn. Sugar Bear's lab was to check his thyroid levels. The good news is he is fine! His levels came back to normal. But the Endo did tell us about 30% of T1s end up with thyroid disease. We'll keep monitoring. Drago's lab was for celiac. He's been having a lot of issues that point to a gastro issue. We don't have the results back on that yet.
My emotions have been all over the place. I definitely need a recharge, but it's not easy to do.
I'm just grateful every moment of every day for life support.
I learned recently that a teenage T1D girl died in the hospital. The doctors and nurses thought they had her stabilized. She had arrived in DKA, which can happen at anytime, due to high blood sugars and not taking her insulin. She passed away from a seizure while talking and laughing with her family. In a hospital. Surrounded by nurses and doctors.
When I used to think of life support before Type 1 entered our lives I'd see images like my Great Grandmother, in the hospital hooked up to machines. Tubes and wires everywhere. Tools to keep her alive.
Type 1s have tubes, and wires, and machines to keep them alive. My boys right now "only" have a continuous glucose monitor, Dexcom, attached to their body, but our family jokingly refers to it as going cyborg. One might try to say it's not really necessary for the life support, but they would be wrong. In the past couple of weeks it has saved us from using glucagon at least three times, two on the oldest and once for the youngest. It is a game changer.
At the endocronologist appointment yesterday we got to download the data with the boys doctor. The CGM is helping. Both boys had good A1cs. Drago's stayed the same even though he has been pretty sick the last few weeks. And Sugar Bear's went down!
Both boys had to have labs drawn. Sugar Bear's lab was to check his thyroid levels. The good news is he is fine! His levels came back to normal. But the Endo did tell us about 30% of T1s end up with thyroid disease. We'll keep monitoring. Drago's lab was for celiac. He's been having a lot of issues that point to a gastro issue. We don't have the results back on that yet.
My emotions have been all over the place. I definitely need a recharge, but it's not easy to do.
I'm just grateful every moment of every day for life support.
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