It has been five months since I’ve even looked at my blog. I even forgot the password to sign in. This is not a bad thing though. Because, in the meantime we have been living and coping.
Blaine is halfway through 5th grade and Aislin through 3rd. Blaine’s elementary career is dashing to an end. As I read through my entries I wrote shortly after his diagnosis I realize I have more answers and more coping skills. I also have the experience to draw on which I desperately needed in the beginning- ironic, right? The lows we saw before- in the 30’s or 40’s rarely happen. The lows still happen, it’s just more in the 50-70 range. There are still highs that happen, in fact, we had our highest high the other week- 539! Yikes!
We are learning that his leg is a very hit or miss spot for injections. More often than not, when he’s had insulin and has an unexpected high, it is because he did the injection in his thigh. I don’t think there is enough fat there.
Little questions that I had before, like do we take the diabetes bag into Kroger, are now answered and just second nature (yes, we take the bag everywhere, you can’t leave insulin in the car, and it’s just best to be prepared). Over the summer I’d get upset over numbers like 229, but now he can be 400 and I just calmly say “Hmm. I guess the insulin leaked out or we miscalculated.” We correct and move on. Being high for a few hours is not ideal, but we are checking on a regular basis, so any highs are caught and corrected in a timely manner.
Blaine is doing great. They are times when he doesn’t feel like checking his BG, but he still checks. He doesn’t complain about the time spent out of class or the headaches from being high, or shakiness from being low. Sadly, a part of me knows that it is because this is his normal. He just knows that this is how life is for him, I’m not sure he remembers what it felt like prior.
He is loving tennis! He plays three to four times a week. Right now he has clinics two days after school, a private lesson on the weekend and he has played some matches. In fact, the other day he won his first match! It was a freezing cold day. They played in 36 degree weather. It was a doubles match. I could tell he was nervous in the beginning. Two of his peers were there watching and I think it was throwing him off. He finally settled in and did awesome! His serves were consistent and his returns looked great. We were so proud. I felt like telling diabetes “take that!”
He’s been working with a great coach for his private lessons- Coach Luis, from Argentina. Blaine is not one to talk on the phone or even return a text message. After that match he requested my phone to call Coach Luis. He called the coach and told him he won, right there in the parking lot. I had to fight back tears I was so proud of him. More than feeling proud that he won, that I felt grateful. Grateful that we found a sport he likes, a coach he connected with, and that diabetes is cooperating with us.
At the end of this month we have track sign ups. He had to quit last year because we just weren’t ready. I had no idea how his blood sugar would respond to exercise and I couldn’t be there to run along with him because I had Aislin with me. This year they’ve both agreed to do track again. I feel more relaxed and I think we can handle it.
I feel like we are just living again. I still have moments, and I’m sure I always will. This is still a loss for us. A loss of the life we had before, but I know there are worse things. For the most part I can truly say life is good. If anything this had made us live in the moment even more, and be grateful for each normal day.
Saturday, January 18, 2014
Friday, September 6, 2013
One month of school down, Six months of Diabetes down
The kids and I have completed one month of school. We are finding a good rhythm, thanks to our kitchen being 98% complete, and to having an after-school nanny. Both kids, and I, really became accustomed to the convenience of them riding the bus home from school last year. This year school start times moved up by an hour, which moved the time they got home to an hour earlier. There is just no way for me to get home in time to get them off the bus.
There is an afterschool program at school that they could do, but honestly, they just want to get home after school, and so do I. Also, I didn’t feel super-confident with the diabetes management in the after school program, especially due to Blaine tending to run low in the afternoons. Thankfully, we have a sitter who has been getting them off the bus, taking the dogs out, getting snacks and homework going and helping with little things like the dishwasher or laundry. This has allowed me to do my errands after school or work a little later if needed. Fingers crossed that this continues to work!
Blaine is enjoying his tennis clinics and lessons. He didn’t feel ready for a match this month, but hopefully by October he will be. Aislin is getting ready for her first football game this weekend and is still doing tumble every other week. She is determined to get her front walk over soon. They are both just growing up and maturing so much. It seems to happen every school year. This past week, Aislin has gotten herself completely ready for bed and gone to sleep early, by her own choice, every night. Sometimes I miss the fact that she doesn’t ask me to read with her, or lay with her as she falls asleep.
This week we had Blaine’s endocrinologist appointment. I was holding my breath and bracing for a higher a1c. The last one was 7% (which is an average BG of 150 over the past 3 months). This time it was 6.8%! I was so excited. I know that some extreme lows may have contributed to the a1c, but I was still happy. We had our first good appointment. I’ve not been thrilled with the doctor we saw last time and was braced for feeling like crap when we left the appointment, but this was not to be the case. This appointment was great.
I can’t remember the name of the women we saw, but this is what I do remember. She smiled, she listened, she paraphrased back what we said to make sure she understood us, she took her time with us, and for the first time ever she said to both of us, “Blaine you look great! You are a healthy and strong boy that will live to be 100 with no complications!” I wanted to cry when she said this. I realize she has no idea if what she said was true. She has no idea how long he will live. But, she was going off the fact that each day we are choosing to be present and manage this blasted disease. She gave me hope that if we continue on this track there is no reason to believe that Blaine won’t have these things.
I was so encouraged. Not simply because of his numbers, but because of the human interaction from the appointment. It made me think, in my profession, do I give other parents hope? Sometimes, no, a lot of times, I am working with frustrated parents, teachers and children. I have no idea what parents think when they hear that their child has a learning disability, ADHD or autism. I hope that I am able to give the slightest bit of hope or comfort to these parents. I now realize that it can make a world of difference.
There is an afterschool program at school that they could do, but honestly, they just want to get home after school, and so do I. Also, I didn’t feel super-confident with the diabetes management in the after school program, especially due to Blaine tending to run low in the afternoons. Thankfully, we have a sitter who has been getting them off the bus, taking the dogs out, getting snacks and homework going and helping with little things like the dishwasher or laundry. This has allowed me to do my errands after school or work a little later if needed. Fingers crossed that this continues to work!
Blaine is enjoying his tennis clinics and lessons. He didn’t feel ready for a match this month, but hopefully by October he will be. Aislin is getting ready for her first football game this weekend and is still doing tumble every other week. She is determined to get her front walk over soon. They are both just growing up and maturing so much. It seems to happen every school year. This past week, Aislin has gotten herself completely ready for bed and gone to sleep early, by her own choice, every night. Sometimes I miss the fact that she doesn’t ask me to read with her, or lay with her as she falls asleep.
This week we had Blaine’s endocrinologist appointment. I was holding my breath and bracing for a higher a1c. The last one was 7% (which is an average BG of 150 over the past 3 months). This time it was 6.8%! I was so excited. I know that some extreme lows may have contributed to the a1c, but I was still happy. We had our first good appointment. I’ve not been thrilled with the doctor we saw last time and was braced for feeling like crap when we left the appointment, but this was not to be the case. This appointment was great.
I can’t remember the name of the women we saw, but this is what I do remember. She smiled, she listened, she paraphrased back what we said to make sure she understood us, she took her time with us, and for the first time ever she said to both of us, “Blaine you look great! You are a healthy and strong boy that will live to be 100 with no complications!” I wanted to cry when she said this. I realize she has no idea if what she said was true. She has no idea how long he will live. But, she was going off the fact that each day we are choosing to be present and manage this blasted disease. She gave me hope that if we continue on this track there is no reason to believe that Blaine won’t have these things.
I was so encouraged. Not simply because of his numbers, but because of the human interaction from the appointment. It made me think, in my profession, do I give other parents hope? Sometimes, no, a lot of times, I am working with frustrated parents, teachers and children. I have no idea what parents think when they hear that their child has a learning disability, ADHD or autism. I hope that I am able to give the slightest bit of hope or comfort to these parents. I now realize that it can make a world of difference.
Friday, August 16, 2013
Streakers, 504 plans and Lows
Every new school year, or start of a new calendar year, I have good intentions to record our family history somehow, yet my thousands of pictures on the iphone are really the only consistent documentation. Nonetheless, I’ll give it a go again this school year.
First- to address the Streaker. I’ve worked in several different elementary schools within my county. Each building has its own vibe, made up by the neighborhoods that it serves and the faculty and staff that work there. One of my schools has a high energy atmosphere based on the components listed above. There is never a dull day at this school. We started this year off with a woman running frantically into the front office, within the first week, demanding to run back and check on a child that she knew was wounded, bleeding, and in need of her help at our school. We have many eyes on children as they enter the school. No staff saw a bleeding or wounded child enter the building. Our principal was able to contain her in his office, get a copy of her ID and keep her from leaving until the police arrived. Turns out she’s a regular. The police escorted her out of the school and allowed her to drive herself home. So, where’s the streaking part? She turned up a few days later in a swim and tennis neighborhood, streaking. To be fair it was a hot day, and all the kids were now in school…maybe she just wanted a quick dip in the pool?
The 504 plans: I have sat in many meetings these past two weeks where I was part of a committee determining 504 eligibility and getting plans in place for children at school. This is my first school year sitting at the same table, but now as a parent with a child who has health needs of his own. I’ve always advocated for children, but now I feel that role more deeply, as my child is one of the children who needs accommodations. It scares me a little as I learn of new and growing illnesses in childhood. Why are so many children being diagnosed with life-threatening allergies? Are there environmental triggers, is it because of genetically modified foods, why so many autoimmune conditions? I empathize with parents who must entrust a school system to keep their child alive during the day. This statement may seem extreme, but it’s really not. Not when you are made aware of the medical needs of so many children.
Finally, the lows. Aislin is cheering again for her third year. Her first year of cheering, I was one of the coaches. That was a tough job. I wish I could say that I enjoyed every moment of being out there with my daughter, and watching her do something that I loved doing at one time in my life. But, honestly, I was working at three different elementary schools, commuting 30 minutes each way, and had a spouse who commuted, worked and traveled, and a son who was playing baseball at the time. I did not enjoy it. It was one more thing that stressed me out. Coaching 6-7 year olds after they’ve been in school all day, and after I’ve been in meetings or putting children through batteries of psychoeducational testing, felt like herding cats.
This year, at the first practice I was approached and told that because they had so many cheerleaders, they wanted to create at third squad, rather than two big squads. They asked if I’d coach again. I hate to say no. If I can find a way to say yes to most things, I’ll say yes. I deliberated on it for an hour. I just couldn’t say yes. Aislin’s cheer practice time, twice a week for two hours, is my time with Blaine. He’s not playing football, and that was my planned time to go to the jogging track with him. I can’t leave him home for two hours and I definitely was not going to make him sit at Aislin’s practice for two hours while I coached.
I know Aislin would have loved for me to coach, but now is not the time. Sometimes with diabetes it’s hard to have set plans and I’m learning to be okay with that. Yesterday was Aislin’s practice. I came home and made sure everyone did homework, had snacks, took the dogs out and were ready to go. I had told Blaine that we would be doing the track while she practiced. I knew he wasn’t thrilled, but he was going along with it.
As soon as we got in the car he said he felt low. He checked. He was 39. This is only the second time we’ve seen a number in 30s register on his monitor. While trying to park in the madhouse of a parking lot, I was also trying to keep a close eye on Blaine to make sure he had a juice, granola bar and sugar tablets. We got Aislin safely to her practice and decided to get our groceries first. The plan had been, walk, groceries, unload groceries at home and then get Aislin. We obviously had to adjust that plan.
We went through Kroger gathering what we needed. Blaine seemed completely fine. We got everything home and quickly unloaded and then rushed back to the track. I estimated that we could still get in a mile and a half before practice ended. As we were stepping on the track to start a very fast paced walk, we decided to do a quick BG check. He was 79. Forget it. There was no way we were going to force a bunch of juice just so we could exercise. We decided to head back to the car, have some more juice and then just watch the rest of Aislin’s practice.
I know that watching a cheer practice was the last thing Blaine wanted to do, and honestly, my heart was set on getting in a few miles for my exercise. But, this is life. I know that right now I’m modeling for Blaine how to handle these things. I tried very hard not to appear frustrated or disappointed, but Blaine still apologized to me. I told him it wasn’t his fault in anyway. These things happen. We deal with them and move on. There will be other days for me to get my walks in, just as there will be other days that he’s about to go and do something important, but he’ll have to take a few minutes to get his BG back on track. We’re learning to cope, and maybe learning to be a little more flexible with life than we would have learned to be otherwise, had diabetes never entered our family.
First- to address the Streaker. I’ve worked in several different elementary schools within my county. Each building has its own vibe, made up by the neighborhoods that it serves and the faculty and staff that work there. One of my schools has a high energy atmosphere based on the components listed above. There is never a dull day at this school. We started this year off with a woman running frantically into the front office, within the first week, demanding to run back and check on a child that she knew was wounded, bleeding, and in need of her help at our school. We have many eyes on children as they enter the school. No staff saw a bleeding or wounded child enter the building. Our principal was able to contain her in his office, get a copy of her ID and keep her from leaving until the police arrived. Turns out she’s a regular. The police escorted her out of the school and allowed her to drive herself home. So, where’s the streaking part? She turned up a few days later in a swim and tennis neighborhood, streaking. To be fair it was a hot day, and all the kids were now in school…maybe she just wanted a quick dip in the pool?
The 504 plans: I have sat in many meetings these past two weeks where I was part of a committee determining 504 eligibility and getting plans in place for children at school. This is my first school year sitting at the same table, but now as a parent with a child who has health needs of his own. I’ve always advocated for children, but now I feel that role more deeply, as my child is one of the children who needs accommodations. It scares me a little as I learn of new and growing illnesses in childhood. Why are so many children being diagnosed with life-threatening allergies? Are there environmental triggers, is it because of genetically modified foods, why so many autoimmune conditions? I empathize with parents who must entrust a school system to keep their child alive during the day. This statement may seem extreme, but it’s really not. Not when you are made aware of the medical needs of so many children.
Finally, the lows. Aislin is cheering again for her third year. Her first year of cheering, I was one of the coaches. That was a tough job. I wish I could say that I enjoyed every moment of being out there with my daughter, and watching her do something that I loved doing at one time in my life. But, honestly, I was working at three different elementary schools, commuting 30 minutes each way, and had a spouse who commuted, worked and traveled, and a son who was playing baseball at the time. I did not enjoy it. It was one more thing that stressed me out. Coaching 6-7 year olds after they’ve been in school all day, and after I’ve been in meetings or putting children through batteries of psychoeducational testing, felt like herding cats.
This year, at the first practice I was approached and told that because they had so many cheerleaders, they wanted to create at third squad, rather than two big squads. They asked if I’d coach again. I hate to say no. If I can find a way to say yes to most things, I’ll say yes. I deliberated on it for an hour. I just couldn’t say yes. Aislin’s cheer practice time, twice a week for two hours, is my time with Blaine. He’s not playing football, and that was my planned time to go to the jogging track with him. I can’t leave him home for two hours and I definitely was not going to make him sit at Aislin’s practice for two hours while I coached.
I know Aislin would have loved for me to coach, but now is not the time. Sometimes with diabetes it’s hard to have set plans and I’m learning to be okay with that. Yesterday was Aislin’s practice. I came home and made sure everyone did homework, had snacks, took the dogs out and were ready to go. I had told Blaine that we would be doing the track while she practiced. I knew he wasn’t thrilled, but he was going along with it.
As soon as we got in the car he said he felt low. He checked. He was 39. This is only the second time we’ve seen a number in 30s register on his monitor. While trying to park in the madhouse of a parking lot, I was also trying to keep a close eye on Blaine to make sure he had a juice, granola bar and sugar tablets. We got Aislin safely to her practice and decided to get our groceries first. The plan had been, walk, groceries, unload groceries at home and then get Aislin. We obviously had to adjust that plan.
We went through Kroger gathering what we needed. Blaine seemed completely fine. We got everything home and quickly unloaded and then rushed back to the track. I estimated that we could still get in a mile and a half before practice ended. As we were stepping on the track to start a very fast paced walk, we decided to do a quick BG check. He was 79. Forget it. There was no way we were going to force a bunch of juice just so we could exercise. We decided to head back to the car, have some more juice and then just watch the rest of Aislin’s practice.
I know that watching a cheer practice was the last thing Blaine wanted to do, and honestly, my heart was set on getting in a few miles for my exercise. But, this is life. I know that right now I’m modeling for Blaine how to handle these things. I tried very hard not to appear frustrated or disappointed, but Blaine still apologized to me. I told him it wasn’t his fault in anyway. These things happen. We deal with them and move on. There will be other days for me to get my walks in, just as there will be other days that he’s about to go and do something important, but he’ll have to take a few minutes to get his BG back on track. We’re learning to cope, and maybe learning to be a little more flexible with life than we would have learned to be otherwise, had diabetes never entered our family.
Sunday, August 11, 2013
First Week Back- Success!
The kids had their first days back at school. I now have a 3rd
and 5th grader. We had a very smooth first week, despite having no
kitchen and having to use all paper products! I just keep reminding myself that
it is temporary…
I am working out of two elementary schools this year which
is going to be great. One of my schools I’ve had for several years now and the
other I had last year. Last school year I had three elementary schools and it
was hectic to say the least, especially when in March Blaine was diagnosed.
This year I have two schools and I was able to pick up where I left off in May. I’m feeling very organized (at school, not home: no kitchen!) and ready to tackle this school year.
Aislin has Blaine’s 3rd grade teacher, which she
and I were both thrilled about, and Blaine seems to really like all three of
his teachers this year. There is a new school nurse who has been awesome. She
was a pediatric nurse prior and her communication with us has been excellent. The
fact that she was so willing to jump on BlueLoop through www.mycareconnect.com was a hint that
she would be on top of things.
Aislin’s cheer practice started this week and Blaine had his first tennis clinic. We are getting a feel for the rhythm this school year will bring. I’m hoping it’s a good one!
 |
| Blaine -5th grade, Aislin- 3rd grade |
Aislin’s cheer practice started this week and Blaine had his first tennis clinic. We are getting a feel for the rhythm this school year will bring. I’m hoping it’s a good one!
Friday, August 9, 2013
I'd choose to live
Blaine is our resident history buff. He has loved learning about historical facts
for as long as I can remember. A lot of history can be fairly violent in my
opinion, however, it is not unusual for Blaine to read a book on Viking torture
devices before going to bed. He is now reading the Hunger Game series for the
third time (I read them first before I agreed to let him read them). Yes, they
are violent, but they have opened the way for discussions of what living in a
totalitarian government system would be like, leading us to conversations of
what life may be like in places like North Korea. Later I’m sure it will lead
to conversations about human rights.
When Blaine was four years old, my aunt gave him a dream catcher to hang in his room. It’s been hanging on his mirror for six years now. Coincidence or not, he hasn’t had a nightmare that he can remember since. Maybe that’s why he can read such disturbing books before bed. On the other hand, Aislin would be traumatized by reading about a dog being temporarily separated from its family and would insist on sleeping in my bed all night. She will have to be 18 before she can read the Hunger Games, if ever!
The other day, out of the blue, Blaine asked an interesting question.
Blaine: “Mom, if you knew, before birth that you would die a horrible death, would you still choose to be born?”
Me: “Wow, I have no idea. What would you choose?”
Blaine: “I’d choose to be born anyway, even if I died a horrendous death.”
Me: “Well, that’s a pretty optimistic view point from a pessimist!”
Blaine: “Yeah, I know.”
I don’t know why he thought of that question, but I thought his answer was interesting. He’d choose to live anyway.
Sometimes I think about friends and people that have been in my life that died before their time. For one year I worked and a speech and language pathologist on a preschool assessment team. For one year we had lunch together nearly every day. We talked about our families; we laughed together and shared the stress of being a working mother with children and a life outside of work. At the end of that school year she was in a fatal car wreck. She and her youngest son died in that wreck, while her husband and oldest son lived. There is not a day that I don’t think of her. If I’d known I’d only have one year to get to know her and enjoy her presence, I’d choose to spend that time with her, all over again. None of us know how long we have, but we can chose how we focus our energy on the time that we do have.
Hearing Blaine say he’d chose to live anyway makes me so proud. It comforts me on the days that I still want to scream, shout or sit down and cry. It wills me to keep going. I pray he will keep this veiwpoint in the years ahead. It scares me when I hear other parents talk about diabetes-burnout, but for now, all we can do is choose to climb the mountain and live each day.
When Blaine was four years old, my aunt gave him a dream catcher to hang in his room. It’s been hanging on his mirror for six years now. Coincidence or not, he hasn’t had a nightmare that he can remember since. Maybe that’s why he can read such disturbing books before bed. On the other hand, Aislin would be traumatized by reading about a dog being temporarily separated from its family and would insist on sleeping in my bed all night. She will have to be 18 before she can read the Hunger Games, if ever!
The other day, out of the blue, Blaine asked an interesting question.
Blaine: “Mom, if you knew, before birth that you would die a horrible death, would you still choose to be born?”
Me: “Wow, I have no idea. What would you choose?”
Blaine: “I’d choose to be born anyway, even if I died a horrendous death.”
Me: “Well, that’s a pretty optimistic view point from a pessimist!”
Blaine: “Yeah, I know.”
I don’t know why he thought of that question, but I thought his answer was interesting. He’d choose to live anyway.
Sometimes I think about friends and people that have been in my life that died before their time. For one year I worked and a speech and language pathologist on a preschool assessment team. For one year we had lunch together nearly every day. We talked about our families; we laughed together and shared the stress of being a working mother with children and a life outside of work. At the end of that school year she was in a fatal car wreck. She and her youngest son died in that wreck, while her husband and oldest son lived. There is not a day that I don’t think of her. If I’d known I’d only have one year to get to know her and enjoy her presence, I’d choose to spend that time with her, all over again. None of us know how long we have, but we can chose how we focus our energy on the time that we do have.
Hearing Blaine say he’d chose to live anyway makes me so proud. It comforts me on the days that I still want to scream, shout or sit down and cry. It wills me to keep going. I pray he will keep this veiwpoint in the years ahead. It scares me when I hear other parents talk about diabetes-burnout, but for now, all we can do is choose to climb the mountain and live each day.
Tuesday, August 6, 2013
End of a Honeymoon
This may possibly be the end of the honey moon phase.
This tool also provides very nice graphs and charts, like the above. This bar graph shows the average daily total of Blaine’s fast acting insulin (Humalog) and slow acting insulin (Lantus) by week. Jumping from an average of 14 units of fast acting daily to 35 may just indicate that his pancreas is no longer dumping its own insulin into the mix! We’ve seen numbers like 317 (three times the normal limit of BG) to 37 (1/3 of the normal BG) in the same day. Definitely some adjusting of food ratios and corrections factors is going on in our house! All you can do is actively monitor and problem solve. There are no vacations from diabetes, that’s for sure. I am very appreciative of these innovative mothers who have made our daily management a bit more bearable.
Friday, July 26, 2013
Climbing the Mountain, Each Day
What is it like to live with diabetes? When we were first
told that Blaine had diabetes I thought foremost that I was glad it wasn’t
cancer. Secondly, I thought that I would
need to get over my needle phobia quickly. Then lastly, I thought that it would
be as simple as doing a few shots a day.
While diabetes can be managed by insulin, and while my son will stay alive with this medical intervention, it is a far cry from being simple.
Living with diabetes, is dealing with diabetes. It is making the choice that each day you will be present and take part in the active management of diabetes. It is anything but simple. There are no days off with diabetes. It is an ever present disease that demands to be managed, some days it seems hour by hour. It is a chronic illness.
Recently there were a few days that Blaine remained in the 200s, no matter what we did. During this time as I was trying to determine what I must be doing wrong, I had this vision of us climbing a mountain.
I could see us climbing this mountain at all times of the day. We were climbing as the air was crisp and chilly, while the sun was rising. I could feel us climbing in the middle of the day as the sun bore down on us and we were tired, thirsty and out of breath. Then I could see us climbing still as the sun was setting and we were hungry and shaky. I could feel us climbing and willing ourselves to keep moving throughout the uncertainty of dark nights on this strange mountain. We were climbing this mountain that I never could get a good glimpse of the top. All of my energy was focused on climbing upward and encouraging Blaine to keep climbing with me. While we climbed I’d see other kids Blaine’s age skip, jog or run past us. They laughed and ran upwards without looking back while Blaine and I grabbed onto boulders to pull ourselves upwards with bloody fingers and distant looks in our eyes.
But I knew what would be on the other side.
I knew that if we could just get to the other side, Blaine would have all the things that his peers would have on the other side. The things that they would have without the battle of the climb: their eyesight, their kidneys functioning properly, their heart functioning and no nerve damage. These were the things Blaine could have too, if only we decide to climb the mountain every day.
While many days the mountain is every present and every inch of the climb can be felt, there are some days where rest can be found. Those precious days when his blood sugars stay in range. These are the days that he feels great. He is a funny child with a quick mind and great sense of humor. He is articulate and determined. Whether he is determined to lobby for a pet pig (which has been going on for nearly a year, although he has dropped his ban on eating pork products) or to work out to doing 150 pushups and sit-ups each day. These are the days when I don’t feel the climb.
I can sit back and rest for a minute and enjoy the view. I don’t worry about his fingers becoming raw from the constant pricks. I don’t worry about his extremities becoming numb or him losing his eyesight. I feel like we can sit back and breathe in the mountain air and reflect on how far up the mountain we have climbed in these last 5 months.
These are the days when I can be thankful. I can be thankful that I still have my son. A century ago he would have been given 6-12 months to live. I would have had to watch him wither away as he lost his eye sight and kidney functions. I would have had to watch his body turn on himself and then watched him die as I stood by helpless.
To an extent I am still helpless. We are fully dependent on the insulin he receives via mail delivery to keep him alive. It is a conscious choice that must be made each day. But we have the tools to keep him alive, and if we chose to engage in the climb each day we can keep him healthy too. His risk of complications will always be there, but hopefully we can manage them by actively choosing to climb each day. No one knows how many days any of us have left. Worrying too far into the future is futile, but making active choices to prepare now for the future is key. Enjoying each moment and choosing to live each day is what is most important, we cannot let tomorrow rob us of today as long as we are doing our best each day.
While diabetes can be managed by insulin, and while my son will stay alive with this medical intervention, it is a far cry from being simple.
Living with diabetes, is dealing with diabetes. It is making the choice that each day you will be present and take part in the active management of diabetes. It is anything but simple. There are no days off with diabetes. It is an ever present disease that demands to be managed, some days it seems hour by hour. It is a chronic illness.
Recently there were a few days that Blaine remained in the 200s, no matter what we did. During this time as I was trying to determine what I must be doing wrong, I had this vision of us climbing a mountain.
I could see us climbing this mountain at all times of the day. We were climbing as the air was crisp and chilly, while the sun was rising. I could feel us climbing in the middle of the day as the sun bore down on us and we were tired, thirsty and out of breath. Then I could see us climbing still as the sun was setting and we were hungry and shaky. I could feel us climbing and willing ourselves to keep moving throughout the uncertainty of dark nights on this strange mountain. We were climbing this mountain that I never could get a good glimpse of the top. All of my energy was focused on climbing upward and encouraging Blaine to keep climbing with me. While we climbed I’d see other kids Blaine’s age skip, jog or run past us. They laughed and ran upwards without looking back while Blaine and I grabbed onto boulders to pull ourselves upwards with bloody fingers and distant looks in our eyes.
But I knew what would be on the other side.
I knew that if we could just get to the other side, Blaine would have all the things that his peers would have on the other side. The things that they would have without the battle of the climb: their eyesight, their kidneys functioning properly, their heart functioning and no nerve damage. These were the things Blaine could have too, if only we decide to climb the mountain every day.
While many days the mountain is every present and every inch of the climb can be felt, there are some days where rest can be found. Those precious days when his blood sugars stay in range. These are the days that he feels great. He is a funny child with a quick mind and great sense of humor. He is articulate and determined. Whether he is determined to lobby for a pet pig (which has been going on for nearly a year, although he has dropped his ban on eating pork products) or to work out to doing 150 pushups and sit-ups each day. These are the days when I don’t feel the climb.
I can sit back and rest for a minute and enjoy the view. I don’t worry about his fingers becoming raw from the constant pricks. I don’t worry about his extremities becoming numb or him losing his eyesight. I feel like we can sit back and breathe in the mountain air and reflect on how far up the mountain we have climbed in these last 5 months.
These are the days when I can be thankful. I can be thankful that I still have my son. A century ago he would have been given 6-12 months to live. I would have had to watch him wither away as he lost his eye sight and kidney functions. I would have had to watch his body turn on himself and then watched him die as I stood by helpless.
To an extent I am still helpless. We are fully dependent on the insulin he receives via mail delivery to keep him alive. It is a conscious choice that must be made each day. But we have the tools to keep him alive, and if we chose to engage in the climb each day we can keep him healthy too. His risk of complications will always be there, but hopefully we can manage them by actively choosing to climb each day. No one knows how many days any of us have left. Worrying too far into the future is futile, but making active choices to prepare now for the future is key. Enjoying each moment and choosing to live each day is what is most important, we cannot let tomorrow rob us of today as long as we are doing our best each day.
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