What an absolute whirlwind and nightmare - to some extent - of a week. But throughout it all God remains in control. Sure, I may be angry about some things and think it unfair that our family now has to run uphill while others get to run downhill, but I still trust God's goodness and faithfulness.
One thing that I've learned/been reminded of is that it is much easier to come to grips with my own mortality and frailty than it is that of my children. Nothing is more gut wrenching than having to see your child lying in a hospital bed hooked up to monitors. The good news is that we have a treatable chronic condition (Type 1 diabetes), but treating it requires poking her with needles multiple times a day. And as you can imagine, that makes her scream loudly and makes me feel like an awful parent.
Wednesday was a normal day for us. Take E to school in the morning, a full day of work, pick the girls up, head to church for dinner and programming, and bed at the end. I knew that there was a doctor's appointment the next morning, but did not think much of it. My wife had recognized some classic signs of diabetes in just 3 days, and I was praying that that would not be the answer.
Thursday started the same. Let E sleep a bit longer to get some rest, get her up and ready for school, and take her. I then headed to Belding to meet with staff there, with a meeting that ran long. I left that meeting to attend a monthly leadership meeting, when my wife called with the diagnosis: Type 1 diabetes. And she mentioned that they had to go to the emergency room immediately because the pediatrician's office could not read the blood glucose levels because they exceeded their glucometer's range. I stopped by work, told my assistant, general counsel, and my boss - the C.O.O - that I was leaving for the day and that my daughter was in the ER. My wife told me to stop home to change clothing, and I was so very much relieved to set eyes on my little one, sitting in her chair in the van. At that point the intangible and subconscious risk and fear of losing her dissipated. I grabbed her stuffed puppy whom I kept in my car (I did not have the heart to return it to the store despite instructions to do so) for her morning trip to school. After quickly changing, we then headed to the ER at the Children's Hospital.
Thankfully the Children's Hospital is nothing like a typical hospital; and this includes the ER. There was a complimentary valet service that parked the van for us; we were immediately placed in an examination room; within 10 minutes we had a suite and a team of professionals working on our baby. They explain everything in advance and promise that there will be no surprises, which helped to set my girl at ease somewhat. The IV that they had to run was a non-issue because they use a topical numbing agent. Her blood glucose there exceeded their glucometer's range, so they had to send blood to a specialist. Meanwhile, we waited, looked at books, watched movies, and E got to play with her new puppy, whom she named "Brownie." The hospital staff included a woman whose job it is to facilitate things for kids and help them feel comfortable. This included a promise of a toy, at which E beamed and immediately asked for a puppy. Given the choice between a black one and brown one, she chose the latter and immediately named it Brownie.
My daughter has a lot of pluck and fight in her. When it was announced that they had to give her insulin via a shot in the stomach, I swear it took 4 of them to restrain her: a nurse, the resident doctor, an orderly, and another nurse. She was screaming, panting, sweating, and doing everything she could to fight having to have an injection in her stomach. All I could do, while holding back tears, was to stroke her face and tell her that everything would be okay - they were trying to help her, and her mommy and daddy would not let anybody hurt her.
Eventually we were discharged around 3:00 or so and given instructions to show up at the specialist's office the next morning at 0800. We stopped by my in-laws to pick up the 2-year-old, headed home, had some lunch and tried to settle in for a bit to restore some semblance of normalcy, had some home-made pea soup, got the girls to bed, read what we could on Diabetes and wrote up questions, and retired, exhausted, for the night. I had to deliver one of my wife's bills by 5:30, stopped by the office to chance my office status on my email, and then hunted for a movie that E wanted because she did not finish it at the children's hospital: Curious George. On this point I will note that I adore the fact that she enjoys such simple things and is in no hurry to discard the show for others. I eventually found the movie at Barnes & Noble, but only after a trip to Meijer, a phone call to another Meijer, and stopping by Best Buy. And I question whether Will Ferrell's involvement as voice for the Man in Yellow really led to increased sales - I find his involvement annoying at best. Had it been Tom Cruise I would have likely passed on the movie for something else.
I woke up, made breakfast for E: eggs, cheese, a few berries, and milk. We prepared for another day with medical people. Friday would entail more than 6 hours, multiple finger pricks, and a few insulin injections. There was the standard evaluation, meeting with the doctor for some time, and lots of time with a dietician and social worker. We had to practice insulin injections on some fake skin, and had to do the finger pricking. We also received what was dubbed "a master's level course education in a matter of a few hours" regarding carb counting, blood glucose monitoring, how the two types of insulin work, prescriptions, medical equipment, blah, blah, blah. At one point, despite my fear of needles and in order to show that that the glucometer was not scary, I offered E to prick my finger. It was not that bad, but I cannot say that I would welcome it 4-6 times a day. My wife also submitted to the same thing. We received what may have been a standard pep talk before leaving: you're doing a great job, you're asking great questions, this will not define her but will be part of who she is, this will not limit her options in life in any significant way. At some point we were sent home, feeling more frightened than brand new parents with a tiny newborn leaving the hospital. We are now tasked with being our daughter's pancreas, and I don't have many qualifications for the position but for necessity.
We gave her a late lunch, but first had to check BG levels and give insulin for the carbs in her meal before she could eat. I then left for her school to pick up homework. It turns out that another little girl there who is just a little bit older than E also has the same condition. So the school staff, including E's teacher, have a few years of experience with this. Then it was a trip to the store to pick up some supplies for school - juice boxes, candy, other things in case her blood sugar was too low - and finding out that the doctor had not sent over prescriptions to the pharmacy. I returned home and my wife accompanied E to a birthday party (now sans the sleepover part for E) while I did something that I cannot recall while my youngest was resting. I took my youngest with me to the pharmacy three times to pick up the prescriptions (not ready the first time, so told to come back in an hour; not ready when we came back, so told to come back in 15-30 minutes; finally ready but some items were declined by our insurance company while the overall co-pay was $300); we also picked up dinner and got gas. BG testing and giving insulin did not go much better than earlier, but we go it done. We then enjoyed our pizza-movie night, allowing E to pick the movie. Of course it was her new monkey movie.
Saturday was a bit better, but I came to realize that I was laboring under a terrible misunderstanding of the insulin scale and the correction dose. Had we needed to give a correction dose, I very well may have killed my daughter by giving her too much insulin. Thankfully her BG has always been within range and we have not had to do any corrections. So all we are doing right now is giving insulin to offset the carbs in her diet. But this now requires counting every carb, measuring portions, and calculating exactly how much to give her. Amazingly, our pancreases automatically beta cells that produce the insulin that is needed to process glucose. Without insulin, glucose cannot leave the blood stream and enter cells to provide nutrients. And effectively the cells will starve, but the body will first start cannibalizing fat cells to try to get the energy it needs. The result of high blood glucose levels is ketone acidosis,
It is now my task to take closer care of my little girl, while helping her to educate herself. And all the while I am now praying for a cure to this stupid disease. Apparently they cured it in rats years ago but the cure did not translate over to humans. So here's praying for a way to increase beta cell production, or to regenerate beta cells, or to stop the body from attacking and killing the beta cells, or to protect the beta cells from the body's auto-immune system.
All I know is that this is quite an unexpected turn in our life journey, but we will continue walking together, encouraging and taking care of one another, and entrusting God with our safekeeping.