Taking Care of a Child with Diabetes

Dear Reader,

This is another post replaying something I had written earlier. The following are answers to questions for a series we did in our adult Sunday school class at our previous church. The class was on people’s vocations. A couple of different people would go every week and answer the same questions about their vocation (their calling or job, what they do with their lives). I don’t have the questions anymore but here are my answers. I chose to focus specifically on caring for a child with diabetes because just being a homeschool mom of multiple kids was not unique in our church and I didn’t feel I could give any more insight on that than any others could. So here are the answers I gave, hopefully not too confusing outside the context of the original questions:

  • As others have said when they shared, I would say that my vocation has changed over time (and I expect it to change again as my children grow and leave home).  The most obvious way my responsibilities have changed is that we now have 4 and not just one child which obviously is more work. The responsibilities also change as the children get older and need fewer diapers changed but ask more interesting questions, come up with new sins (not new, of course, but new to them), and learn to out-logic me. We have also added homeschooling which is work but is also more intellectually stimulating than dealing with a newborn. The biggest change, however, has been Sparrow’s diagnosis with Type 1, or Juvenile, Diabetes. This has added immense new burdens, both physical and psychological. Because there are others who can talk about parenting and homeschooling, I am going to spend most of my time talking about living with a child with a chronic illness. This takes up much of our time and resources. Type 1 is an auto-immune disease in which the body has killed off the insulin-producing cells in the pancreas. It can’t get better (the body won’t regenerate these cells) and it can’t get worse in the sense that all the insulin-producing cells are already dead; they can’t get deader. But it can lead to many short and long-term complications. To try and delay these we must do what her pancreas would have done. We must now check Sparrow’s blood sugar which we do upwards of 10 times a day, both day and night, including at least one blood sugar check in the middle of the night every night but often more. We have to count every carb she eats so we can give her the appropriate amount of insulin. At this point, we do not regularly give her shots as we did for the first 9 months after her diagnosis, but we deliver her insulin through a pump. [Updated to say she is actually no longer on the pump but back on shots but that is the subject of another post.] The pump site, a long needle that goes in her bum or belly, must be changed every 3 days. The pump itself is basically a calculator and delivery system but all the numbers it uses—how much insulin she needs for a certain number of grams of carbs for instance—must be input by us. These ratios are constantly changing and so we are constantly reevaluating what she needs. If we err on the side of too little insulin, her blood sugar will be too high. She will feel bad and these highs over time lead to the complications one typically associates with diabetes-loss of sensation in the extremities, blindness, and kidney disease. If she were to not get insulin for any length of time, her body would become toxic (as it was when she was diagnosed) and she would die within probably a matter of days. At times when she was been disconnected from her pump for an hour for swimming, we have seen that even this brief lapse in insulin has made her feel bad. On the other hand, if she gets too much insulin, her blood sugar will go too low. This deprives the brain of the glucose it needs to operate and again she will feel bad and she may become unconscious, have a seizure, or suffer brain damage or even death. These effects could happen within a matter of hours. This is why we never go a night without checking her. While the dangers of her dying in her sleep are small, they are real. (The danger is greater at night because we are not observing her then and may not catch a low as quickly.) And so we are left to find a balance between these two extremes. There are many variables that affect Sparrow’s blood sugar which we simply cannot control. When she gets sick, her numbers may either go high or low. Stomach bugs, of which she has had two so far this winter, are particularly dangerous. Stress will make her go high as will growth spurts. Exercise usually makes her go low but sometimes high. Different foods will affect her in different ways. Twenty grams worth of crackers has a different effect than 20g or pizza or birthday cake. The details are endless and take up much of our physical time and mental energy.
  • I can’t imagine dealing with Sparrow’s diabetes without faith in God, though I have met numerous people who are attempting to. There are four key beliefs that I think help me keep my sanity.

Firstly, that God is in control of Sparrow’s blood sugars. Parents of children with diabetes are often a mess of anxieties and fears. You start with a traumatic event—the diagnosis of a child with a chronic, life-threatening illness– and then you tell them that to preserve their child’s life and health they must control something which ultimately they cannot control because the variables are too great. Obviously, the greatest comfort is that what we cannot control, God can and does control. I think a fair number of people get to this point, but I also think one must take it a step further. While I have confidence that God is in control and hears my prayers, I have no assurance that He will answer them and preserve her life. We must be willing to accept that whatever happens, even if He should take her (as indeed He may take any child though we are not so conscious of it), God is still in control.

Secondly, I believe that this disease comes from His hand. I have been told, even by Reformed Christians, since Sparrow’s diagnosis that He did not will this disease for her and that it does not come from His hand. I find no comfort in this position. While I cannot explain how a good God wills evil, I would not be much comforted if I did not believe that this disease also comes from His hand. Diabetes is no doubt a result of the Fall but just as God used Joseph’s exile for the good of his family so I see already some good effects from the diabetes in the friendships I have with other parents of children with diabetes whom I would not have known otherwise, in the reliance it causes us to have on Him, and in the patience and compassion it breeds in our children.

Thirdly, as this disease comes from God, I view it as one more thing God has given my husband and I stewardship over for a time. Obviously, this is a responsibility we will pass on to her at some point, but she is not old enough yet. We strive to control her blood sugars so that we can leave her in the best possible health when it is her turn to take over, knowing all the time that there is much we can’t control. But as with all things God gives us stewardship over, we must do our best work, however imperfect, and leave the rest up to Him.

Fourthly, we know that there will be an end to this disease. One of the hardest things I see others struggling with is that they have no hope of this ever ending but we know that there will be no disease in the next life.

Type 1 Diabetes also has its own culture. There are lots of advocacy groups and I have met many other parents of children with this disease (mainly through the internet though many I have then met in person). Most of these people are not Christian and even those who are do not necessarily view things the way I do. They are an anxious group of people (14% nervous wrecks, 30% very worried, 40% more worried than pre-diagnosis), overwhelmed by circumstances for which they have no context, and often angry as well (15% very angry; 15% not angry at all). [Sorry, I no longer know where I got these #s but I suspect it was from a poll on childrenwithdiabetes.com.]

Without a hope beyond this life, they place all their hopes in a medical cure. Indeed the words hope and faith are used frequently. Their “hope” is in a cure for their child’s disease in this lifetime and their “faith” is in the researchers searching for such a cure. While a cure would be nice, their hope and faith are unfounded in that they do not rest on the promises of God. On the other hand, we know that Sparrow will be free of diabetes. Our hope is not a fervent wish but an assurance that in the next life there will be no disease. One obvious point of contention is the issue of embryonic stem-cell research. It is one avenue which is being pursued for Type 1 and to say that one is opposed to it to these people is tantamount to saying you do not wish their child to be cured.

There is also a lot of talk about the fairness of this disease striking innocent children, and many of them are quite young as Sparrow was at diagnosis. The parents themselves become angry—at God, fate, the government, drug companies, and themselves. Without a Christian worldview that explains disease as part of a fallen world, they are left looking for someone or something to blame.

The passage which is most helpful is Phil. 4:6-7: “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, make your requests known to God that the peace of God which transcends all understanding may guard your hearts and minds in Christ Jesus.”

Nebby

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