Archive for the ‘Diabetes’ Category

Food Battles

Dear Reader,

Do you ever have food battles with your child? Well, as a parent of a child with type 1 diabetes, can I just say “don’t”? I have observed other parents, good parents, friends and relatives, cajoling their little ones into eating. It is a painful process. I had the opportunity to observe such a battle once again last night. The little girl is sweet and yes she wasn’t eating well. But she was distracted by us, the guests, and trying to get attention. The parent would have done better to leave it alone. She is a healthy little girl and missing one meal would not have been a horrible thing.

Also, she is 2 and a half.  When my oldest daughter was 2 and  a half we were rejoicing that we no longer had to have very many food battles because she had an insulin pump and was no longer on the dreaded NPH insulin. On NPH he had to eat a certain number of carbs at certain meals. This started at age 19 months when she was diagnosed with type 1. Have you ever tried to get a 1-year-old to eat what they need to? Maybe you have. But have you ever done it because they really need to? Because their blood sugar will go low and they will feel awful and get weak and sweaty and shaky and tired and maybe pass out or have a seizure if they don’t eat enough potatoes? It is not fun. I remember we would always tell my daughter to take daddy-sized bites, as in “That’s not a daddy-sized bite! That was just an itty bitty baby bite. Let me see you take a big daddy-sized bite!” In that awful sing-songy voice we adults use with really little ones (why do we do that?!).

So when eating was no longer a matter of heading off low blood sugars and all they involve, when we could match the insulin to the food to the girl, instead of forcing the girl to eat the food to match the pre-bolused insulin, well, we gave up food battles. And I am happy to say I just didn’t have any more food battles in me to waste on my other children. That nine months of a toddler on NPH took them all out of me.

So, please, if it is not  a matter of imminent health issues, let the food battle go, parents. Your child we be okay if she eats a little less broccoli tonight.

Nebby

People Watching at the Children’s Hospital

Dear Reader,

My son who has had daily headaches for six months now finally went to see a new neurologist this week. This was an appointment we had made 6 or 8 weeks ago and had been anxiously awaiting. The appointment was at 8:30 am and near the big city (Boston) so we left really early to avoid traffic. Which of course meant that we had oodles of time to waste before my son’s appointment. But we had brought books so he and I settled down in chairs near the entrance to wait for a while.

Now I should say that this facility, while affiliated with a major Children’s Hospital is not actually a hospital but a satellite clinic. It does contain lots of different doctors from lots of specialties though.

The first sorts of people to come in were employees scurrying off to their offices. And then slowly patients and their parents began to enter. Some were confident and clearly knew where they were going. They did not seem stressed or overly hurried and presumably appointments here were a regular part of their routine.

And then there were the parents who looked overwhelmed. They looked around a lot more and more often than not stopped by the information desk for directions. Many were pushing strollers or carriages. And I wondered what sorts of specialists all these tiny people were seeing today.

And I remembered what it was like for us when one of our children got their first serious illness. My daughter was only 19 months old when she was diagnosed with type 1 diabetes. I think we probably looked way more overwhelmed than most of these parents when we went to her first appointments after being released from the hospital.

But now I don’t feel sorry for us anymore. Even though the words “pediatric neurologist” just seem like they shouldn’t have to exist, we have come to terms with our children’s health issues. Not to say that we are happy with them but that initial shock has worn off. It is cliché to say “I don’t care if it is a boy or a girl so long as her or she is healthy.” But what about if he or she isn’t healthy? What then? Is it still okay? How do you deal with it? Maybe others are not phased by such things but for me a big part of my daughter;s diagnosis was just coming to terms with the fact that my child had a chronic illness, something that will not go away.

And now, it is kind of okay. Not that I wouldn’t do away with the medical conditions if I could. Not that they aren’t bad. But I can accept the fact that my kids aren’t physically perfect. That’s not so important anymore.

I hope also those other rushed parents, particularly the ones with baby carriers, feel the same way.

Nebby

Diabetes Wisdom from a Nine-Year-Old

Dear Reader,

My 9yo cwd (child with type 1 diabetes) asks to have her blood sugar checked  a lot. The other week she said to me in a very accusatory tone, “Mommy, you haven’t check me in three hours!” Today she said, “It seems like you haven’t checked me in a while.” I responded that yes I had checked her and hour and  half ago and added, “You really don’t need to be checked that often. In theory you should be able to go three hours without being checked.” To which she replied, “Mommy, I am me, not a theory.” Sometimes I wish her doctors got that. The theories are nice, but sometimes real life doesn’t fit them.

Nebby

Doctors and Chronic Illness

Dear Reader,

A recent issue of Consumer Reports focused on doctors, what to look for in them, how to communicate with them, how people feel about theirs. One interesting statistic struck me: for those with chronic pain, only 53% (versus 79% overall) of patients said their doctor helped minimize their pain, and only 31% were highly satisfied with their doctor.  To which their expert made the astonishing conclusion, “‘For patients with chronic conditions, medical science can’t necessarily take away all of their suffering.'”

This strikes me as one of those “well, duh” statements. As a society, we have put our faith in medical science and its practitioners. But more and more lately, I feel like I and those I know are running up against the limits of it. Medicine has not nor will it ever be able to cure all of our diseases. There have been some wiped out. Others, like my daughter’s Type 1 Diabetes, can be treated and managed. The story of the discovery of insulin is a miraculous one in which children slowly wasting away were brought back from the brink of death. It is a heart-wrencher. I highly recommend reading it.

But for every great success, there are also other diseases which still plague us. And many which are becoming more prevalent despite our best efforts. To paraphrase Jesus (is that allowed?), “The sick will always be with us.”

Many people seem to be able to go a long time with the realization that all their aches and pains cannot be cured. But eventually, I think we all face it. Those dealing with chronic diseases and pain on a daily basis are well aware that their doctors cannot do everything or sometimes even much for them. We still look for answers and I don’t think that is a bad thing. But we need to acknowledge that our human wisdom is limited. There is only One who can take away all pain. And He will, but maybe not in this life.

Nebby

Dealing with Children’s Chronic Illnesses

Dear Reader,

Seven years ago my daughter was diagnosed with type 1 diabetes. It is a life-long, incurable, potentially fatal illness that requires fairly intensive management. When she was diagnosed, it took us by surprise. We had no clue she was very sick and were pretty much thrown into the deep end (see some of her diagnosis story here).  But in the midst of that, I did not doubt that God was still controlling our lives, even that this disease was His work, and that He would use it for our good. And I can see how He has done so.

Now we find ourselves faced with possibly another chronic illness and it has come about in a much more subtle (sneaky if you ask me) way. My ten-year old son has had a headache for six weeks now. Over the summer, he had one for four weeks which then cleared up on its own. In between there were a number of shorter term headaches. We are seeing a neurologist about it who says they are probably migraines. We go back to him in a few weeks. But in the meantime, this everyday headache thing is getting pretty wearying. It is not a serious condition in the way diabetes is. It does not have long-term consequences that I know of (other than continuing headaches). But it still feels burdensome. I think in some ways because it did sneak up on us (a headache here, a headache there and before you know it everywhere a headache headache e-i-e-i-o), I feel less prepared for it.

Since my daughter’s diagnosis seven years ago, I never viewed us as safe from such things. But when I pictured us getting a new chronic illness, I always imagined a second child getting diabetes. Or maybe something that commonly comes with diabetes like celiac disease. I just didn’t picture something completely different like headaches.  

Maybe that seems silly of me but think of it this way: I have always said that my dd’s diagnosis was like our own personal September 11th in that it did not make us vulnerable but it showed us our vulnerabilities. And ever since the real 9/11 we as a country have been preparing for another attack by airplane. But what if the attack comes some other way, by ships or trucks or something else we can’t imagine? This is how I feel personally. I learned “we are vulnerable.” And I began preparing myself mentally for another attack. But I only imagined an attack similar to what we had already experienced. I was not prepared for something different. So I guess I never really learned my lesson as I should have. What I really thought was “we are vulnerable to attack by diabetes or maybe another related auto-immune disease.” But I should have just learned “we are vulnerable.”

But I should close on a positive note because even though I am frustrated and feel out of control, I know that God is in control. We may be weak vulnerable people but we have a mighty God who is on our side.

Nebby

Parenting Lessons Learned from Diabetes

Dear Reader,

My daughter has type 1 diabetes (bear with me here; my main point is not about diabetes but parenting in general). Mostly it is a manageable disease (though very intensive). But it can be fatal. Thanks to the internet, one can find a lot of support from other parents of cwds (children with diabetes). But one also hears all the horrible stories of kids who die from this disease.  The instinct when this news comes down the pike, it so ask what happened. We want to know all the gritty details. We want to know what went wrong. This can all seem very harsh, especially to the parents that have lost their child. But I think it is a reaction that comes from fear. We want to know that the other parents did something horribly wrong that we would never do so that we can then say that will not happen to my child. Unfortunately, this is not always the case. There are parents who do not care for their child’s disease well. Sometimes there may be real fault there. But the truth is it is also possible to do all the right things and still have it all go wrong. There is just too much that is uncontrollable. And sometimes maybe there are little wrong things that are not done deliberately or from a lack of care but just because we are fallible, imperfect, and often very tired people.

All this I was thinking of this weekend in a different context. I think we have similar reactions when we see another’s child go morally astray. This could be the Christian parent whose child leaves their faith or it could be any parent whose child takes what they consider a wrong road. When I hear that someone’s child has drifted spiritually, I have the same instinct to ask what went wrong. Maybe they didn’t homeschool. Maybe they didn’t make church a priority. The list goes on and on. And as with the diabetes example, there can be real wrong things a parent can do. But the truth is also that even if we do all the right things, there are still no guarantees. We cannot control our children’s hearts any more than we can control their blood sugars. And we will all do little wrong things along the way. None of us is perfect. The best we can do is avoid the wrong things we can, persevere, and pray. The results are in the hands of the Lord.

Nebby

Giving Us What We Can Handle

Dear Reader,

You often hear people say that God will not give us more than we can handle. I assume this is based on 1 Corinthians 10:13: “There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it.” (KJV; I don’t usually use or quote the KJV but it came up first so there you go. A couple of haths every now and then are good for one I suppose.) Usually I would argue that this verse is taken out of context. I have probably already done so at least once in this blog. The verse does seem to be saying that God will not put us in a  situation where we can do nothing but sin. But too often it is taken to mean that God will not give us troubles beyond what we think we can handle which is usually not a very high bar.

But this week, I am grateful that when one area gets tough, God sometimes gives me a break in another. This week the things on ym mind have been a very annoying woodpecker who is destroying the side of our house (very minor in the scale of things I know) and my ten-year-old’s headaches. Or perhaps I should say headache because it is one headache that he has had for four and  half weeks now. Yesterday it was worse than it had been in quite a while. Today it is better than it has been in quite a while. Which is why I find myself able to sit back and be philosophical about it. But back to my point, with these other worries, my eight-year-old’s diabetes has been pretty easy this week. She is in one of those all-too-short periods when the numbers just seem to be good. I am sure growth hormones and things will kick in soon and send them wacky again. But for this week I am just really glad that I didn’t have to think about the diabetes stuff too much.

I can think of another time when I remember thinking that God was sparing me more burdens than I could handle. It was in about January or February of 2004. My oldest was 3. My second was 1, almost 2, and had had type 1 diabetes for about 3 months. And my third child was 3 months old (do you note the timing there?). Life was crazy stressful. I was adjusting to the new baby (comparatively easy) and the new chronic illness (which took months or even years to settle down to something like normal). And then the cat got sick. I don’t remember what his symptoms were but when we took him to the vet, they ran standard tests and among other things, his blood sugar was high. They said it could be just from whatever infection he had or he could have diabetes (type 2 for cats; I asked). Now I know some people  would just not keep an animal with diabetes. But how could we say no, this disease is a deal-breaker when our child has it (type 1 and 2 are different diseases I know but they do have the same name)? I couldn’t very well give away or put to sleep my cat because of this. And yet I didn’t feel I could handle one more thing on my plate right then. And maybe God knew I couldn’t either because when the cat was retested, his blood sugar was fine. It was just the infection.

So sometimes maybe God is just being a merciful father and knows when we need a break from things. And that’s enough for this week.

Nebby

When Defenders Attack

Dear Reader,

I have been thinking lately about what happens when our God-given defenders turn against us. I have seen this in three areas lately.

The first is my daughter’s type 1 diabetes. Type 1 is an auto-immune disease which means that her immune system, instead of spending its time attacking nasty germs like it was designed to, got bored and decided to attack the beta cells in her pancreas instead. Without those cells, her body makes no insulin hence the diabetes.

This same daughter has another overactive part, her conscience. A conscience, like an immune system, is designed for out good. Its job is to turn us from the evil and help us choose the good. But just like an immune system, it can sometimes go wrong. Too often our consciences fail to act. We dull them over time and they no longer are able to recognize any enemies. Or we train them wrongly and they attack friends and allow enemies in. An immune system needs to be trained over time. After battling one enemy, it learns that enemy and can fight it more effectively the next time. Consciences also need training. But when it comes to our moral compasses, I think adults often have worse consciences than children. It is sad to say but over time I think we tend to only confuse our consciences and not to refine them as God intended. Children see the world in black and white. Adults often see only grey.

In my daughter’s case though, her conscience seems to naturally tend to be overactive (as too her immune system). It accuses her concerning things which are not sin. And even when something is sinful, it causes her to dwell on it rather to accept forgiveness and move on.  Though perhaps a rarer condition than the underactive conscience, the overactive one is also not glorifying to God. It also fails to understand His law correctly, saying sin where there is no sin. And more importantly, it continues to condemn when there is no enemy left to be defeated, when we should be rejoicing in God’s grace instead.

The last defender I have seen attack is one of the saddest. It is a different sort of situation. The father and husband of a family I know has not only left his family but done so in a very hurtful way. And continues to be hurtful in his interactions with his former wife in particular. Our God is particularly on the side of widows and orphans and calls us to help them and defend their cause. Yet in this case (and I am sure it is not unique) the one who had the primary responsibility for their care not only is not caring for them but is actually hurting them. His behavior has caused me to think and others to comment to me that he seems to have no conscience, no moral compass for even the most basic human standards like caring for his children.

What is the conclusion from all this? Better a faulty immune system than a faulty conscience. And that we need to be deliberate in training ourselves, learning the will of God, not allowing ourselves to continue in little sins which dull the conscience and lead to bigger ones, and accepting forgiveness as well, not allowing our consciences to continue to condemn us when the price has already been paid.

Nebby

When I Most Hate Diabetes

Dear Reader,

I actually wrote this post a month or two ago but it still holds true. Since then diabetes has actually turned 7. We didn’t have cake but diabetes did get to choose what to have for dinner (pancakes; always a dinner and not a breakfast food around here because that many carbs don’t work well in the AM and cake on top of it seemed like a bit much). Diabetes also got  a small present–a kit for making pompom bugs. And now, without further ado, here is the actual post . . .

I most hate diabetes on Sabbath mornings. I don’t think there is a single Sunday morning worship service when I haven’t checked my dd’s blood sugar. And she has had this disease for almost 7 years!! How many services is that? Today was particularly bad. Her bg was 400 before we left for service. I know that was due to a high carb breakfast and not pre-bolusing. Her numbers during service were actually not bad. They ranged from 175 to 225 or so. A little high but way better than 400. But she felt bad the whole time. So she kept signaling me and I kept checking. Now, being distracted during service is not new to me. I have 4 kids now ages 10 through 5. They mostly sit well through service but that hasn’t been the case for very long. If it weren’t for D, I still would have had plenty of distraction in the past 7 years. It is the nature of the distraction I think. That this evil thing is interfering with our worship. That my dd almost never seems to just feel well for an hour and   a half on Sunday mornings. Plenty of other times she has been places for that length of time and not had to check herself at all. Her art class comes to mind. She goes through many art classes without checking and is just fine. But worship seems to bring out the bad numbers. I hate it for myself but I hate it more for her. Is she going to come to associate worship with feeling bad? She needs to worship too. Will she ever be able to just do that without diabetes interrupting life? The only up side I can think of is that diabetes is I guess doing part of what it is supposed to do–making us long for that time and place when all disease and sorrow will be wiped away. Maybe that is why it bothers me so much. Sunday worship is supposed to be a little taste of what waits us in eternity but instead it ends up as a reminder of the infirmities of this life.

Nebby

Sleep-Deprivation

Dear Reader,

My normal is to get up at least once a night to check my dd’s blood sugar. I had been getting a good stretch where the once a night was enough. But since Saturday, I have had to get up twice a night. I am feeling the effects of it. It is amazing how profound and yet subtle they are. If you are not thinking about it (which is easy to do when you are sleep-deprived), they can really sneak up on you. Given that I go through my life never getting an excess of sleep, here is what I feel after just a few nights of even less than normal:

-lack of energy. I had to clean today because we were having people over for dinner and I could really feel that I just don’t have as much energy as normal.

-crankiness. Am I tired or are my kids just way more irritating than they were last week?

-forgetfulness. Wait what is this post about?

-inability to concentrate.

-bad decision making. I can tell that I am cutting corners. The irony is that this affects my diabetes care too. And yet I will never get back to just getting up once a night if I don’t make good decisions that allow me to get more sleep.

-loss of will-power, especially when it comes to snacking (or not snacking)

There are probably more I am not thinking of right now. The point is I can notice these changes in myself after just a few days of less sleep than normal. And I wonder about the long-term consequences of even getting up once a night.

On the other hand, I know that I am making a choice to get up. Not every parent of a cwd (child with diabetes) does night checks. Those of us that do feel they are essential to our child’s health and, frankly, their life. But I do understand that it is a choice. And as tired as I am today, it is a trade-off I am willing to make.

Nebby

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