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 Week Back- Success!

The kids had their first days back at school. I now have a 3^rd and 5^th 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…


Blaine -5th grade, Aislin- 3rd grade

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 3^rd 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!

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.

End of a Honeymoon

This may possibly be the end of the honey moon phase.

I must say using www.mycareconnect.com has been amazing. These moms are brilliant! They saw the need to be in the loop about their daughters health needs and made a tool to do just that. Then they decided to share this tool, free of charge, for others to use for their benefit. This year Blaine’s school nurse is also linked in to this tool. She, Brent and I can input information each time Blaine checks his BG, has carbs or insulin. We can add notes for one another to see and his doctors can see the information as soon as it is added. We use this tool daily! I have the app on my iphone and Blaine has it on his ipod (although he has not used it yet). We are able to communicate with his doctors and make adjustments to food and correction ratios as needed without calling or waiting for our every 3 month endocrinologist appointment.

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.