We get settled back into our little cold room and another Sally comes in. She is a Diabetes Nurse Educator and her job is to cram as much information into my blurring whirling brain about diabetes as possible so I can go home later and take care of my little girl. I think again “I’m tired of thinking about this. There’s just too much to think about. God, if we give her this for a couple of days can you just ‘fix’ it and make a miracle happen so we don’t have to do this forever?”
Sugar Bug has had just about enough for one day, and she reminds me again that we haven’t eaten anything since 9:30 that morning. We snuggle up close and I whisper in her ear “I’m really hungry too.”
It’s now about 2:30. It seems my phone keeps ringing today, too. I’m glad to have it so I can keep people informed with what’s going on. At the same time the realization the many interruptions from it are keeping us in the office longer and delaying our exit. Sally is very patient with these interruptions, especially after I explain that my two older kids are home, and babysitting Peaky when I should have been. She quietly reminds me that phones are supposed to be turned off in the office, but says she understands given the circumstances.
We take a break while Sally gets some more results or papers or supplies– or something. I try to call my mother. I need her to pick up Sweet Pea for basketball practice. She’s not home, and I leave a message to have her call me back. My brain is reeling, and I can’t remember if she was supposed to go for her next chemo treatment today or not. I try my sister to find out if she knows where Mum is; she’s out to lunch with one of my aunts. Now I have to track down my aunt because Mum doesn’t have a cell phone. “Who knows her number? Who knows her number? Grandma and Grandpa!”
I love them. I love to talk with them; but they are 86 years old and Grandpa can’t hear much so I’d have to speak up to be heard. I’m breaking the phone rules already, and now I have to raise my voice and everyone within a three room radius will know. I don’t want to call, too, because I know it can’t be a long call, and I’d rather spend half an hour chatting up their routine and doctors appointments and who came to visit last night. That, and I don’t want to lie if they ask if anything is new or if they ask after the kids and family or how things are going. All this races through my mind in about 2 seconds, and I call them and hope for the best.
The call was brief, they didn’t ask a lot of questions and I apologize for not being able to stay on the line and chat, and explain what I need and why I called. I have my aunt’s cell number. I call her next, and she answers with an expected ‘how did you get this number?’ tone. I fill her in with the details of how I got her number, ask after Mum’s whereabouts and find out she’s been dropped off to home already. SIGH, I just missed her.
My attention goes back to Sally, who’s now back. She has a tackle box of stuff with her–really, it’s a tackle box. She opened it up and started laying things on the examination table. I knew all of these things would be part of our daily lives, but there was so much of it and I tell myself to ignore my empty stomach and focus my attention on what’s going to happen next because my daughter’s health depended on it. She begins with the testing meter and a brief overview of how it works: bottle codes must match, “piano keys” side of test strip goes in, lancet goes here and this is how to change them. Sugar Bug starts to cry again. (This needle fear is going to get very tiresome and exasperating very soon. She’s just going to have to get used to it.) We get another finger poke done and her results are over 340 mg/dL.
My phone rings; it’s Mum. We talk for just over 2 minutes. In that time I skirt the details of where I am and what’s going on, and only say we’re going to be here for a bit yet and wonder if she can go pick up Sweet Pea for practice. She says she’s feeling really quite good today, which is why she went to lunch and would be able to help out. I give the details of ‘when and where’, thank her and hope she doesn’t hear the weariness in my voice and start to worry. She knows me so well, I’d have a hard time trying to hide it from her. I am so grateful she doesn’t press for more answers.
I make a quick call to Sonny Boy to let him know that his Grandma was coming to pick up his sister for practice and ask that he not say anything about what is going on because I hadn’t told her anything yet. He asks how much longer we’re going to be at the doctor’s. I repeat his question out loud so Sally can hear, and glance up to her so she knew I was asking her as well. “Another hour, hour and a half,” she says. I relay that to my son. Holy cow! is what we’re both thinking. That call is done, and hopefully we can finish without anymore interruptions.
I can now turn my attention back to Sally. It’s now 2:45 PM.
Sugar Bug learns she must now have her first insulin shot in the office and she panics. Sally tries to intervene and convince her to be brave and get it over with. I know my daughter, and no amount of talking is going to get her to cooperate right now. She’s terrified and it shows. Then I remember what it was like when I was facing surgery at 16 and the doctor says there’s a slim chance my thyroid goiters could be cancerous. I tried not to panic back then, be remember feeling like I could be dying and he’s just so casual about all this. I gather her up in my arms, hold a hand up to stop Sally mid-sentence and ask “Do you think you’re going to die?” Her sobs are louder, and I know the answer before she nods her head. My heart breaks, and I start to cry with her.
We recover, dry our eyes and noses and move to the insulin injection. She panics again–remember the needle phobia–starts to cry and refuses to take the injection. I make some attempts to reason with her, get her to decide to do this on her own. I don’t want to get heavy-handed and force her; that would just make tomorrow even harder for both of us to endure because her memories would be filled with anxiety and fear. I’m aiming for her memories of this as more in the ‘it’s not a big deal’ range. I don’t know how long this takes, but even Sally is losing her patience with us. She wants this done and over with so we can move on, this I can tell by the look on her face. I am forced to pull Mean Mommy out and threaten her with no computer or TV if she doesn’t just sit still and do this. She tries to push the envelope, but soon realizes I am not going to budge and relents. She is still in tears, but clutches her new bear, ‘Rufus, the Bear with Diabetes’, and lets me do this first one. I hug her tight and wipe her eyes. SIGH
We are able to get through the rest of this bit of diabetes education and learn there is still more to come. Sally wants to know if my husband is able to come the next day for us to be able to finish up. I said I’d have to call him to find out, and explain about changes in his job and say I’m not sure he could get away. The day is almost over, and I am very ready to get home. I make the call and his reply is ‘tell me where and when, and I’ll be there.’ The time: 4:07. It’s set for us to return at 9 AM for more diabetes education. This time it should only be about 2 hours. (ONLY, she says. He got off easy.)
Kristi, a Medical Social Worker, comes in next. It is her job to answer any questions we may have about how to deal with testing and what happens at school and how we make adjustments to our life in general. She uses the word normalize a lot, almost too much. “I want to help you normalize this for [Sugar Bug],” that sort of thing. She mentions a supplementary insurance program through the state. We’ll get more details the next day. She talks about the importance of communication– in our family, with the office, our diabetes team and the doctors. I’m trying to pay attention but my empty stomach is making itself known out loud now, and Sugar Bug is visibly tired. We are both spent.
Kristi doesn’t say anything else I haven’t already heard from the social workers we had to deal with during my late mother-in-law’s final weeks; except that she a big advocate of crying: “Having a really good cry can be very good for you.” This I knew, I didn’t need a social worker to tell me that. She’s very empathetic and that could be a downfall for her in her field of work. Social workers want to ‘save and help’ and sometimes people just don’t want to be saved or helped. We end up talking for just over an hour.
The second Sally comes back and starts packing things away. She double checks on my confidence level with finger pokes, testing, and calculating Sugar Bug’s carb-to-insulin ratio. I’m not feeling especially proficient, but I’ll manage. We pack up a back pack from the Juvenile Diabetes Research Foundation, her complimentary insulin/testing kit bag, our binder with a log book and calculation/conversion chart. We get instructions to call the on-call doctor at bedtime with ‘her numbers’, wake her at 2AM to do a blood sugar test, reminders about what do if this-or-that happens. We gather our things and Sally says good-bye. The lights are off behind the reception area, and most everyone has gone home already.
HOME, it sounds wonderful. Take-out is what I want for dinner. Can’t do take-out because 1) I have no money and 2) I have no clue about how to convert that into insulin units and 3) I don’t even want to try to do an injection away from home. Drat, that means I have to cook and I don’t want to because I’m so tired and hungry.
I can’t go home yet. I have one more stop to make. I look at the time on my phone and realize we have to fly to go pick up Sweet Pea from her basketball practice. It’s 5:40 PM as we pull out of the parking lot at the clinic.
We arrive at the school where practice is held and I collect my middle child. As we are walking out the doors we see it’s raining quite hard, which it wasn’t doing just a few minutes before. I take this opportunity to break the news to her and tell her that her sister has diabetes. Sweet Pea’s jaw drops in shock. I fill her in with bits of our day, and then the rain stopped as quickly as it started. We climb back into the car and head for home.