Welcome to the Type 1 Diabetes Club. It is a club you desparately want
out of, never wanted to belong to, and yet here you are. And, I hope this helps you get through this first month. If you are like most of us who have been initiated into this club, your world has been shattered, your mind is spinning, and you are not sure things will ever be right again. I, and many others, have made it through and I can tell you that things will be ok, but I hope this helps you make it through the first 30 days when it might be hard for you to realize that. My daughter was 7 when she was diagnosed, so a lot of my advice relates to young children being diagnosed. Some of it is applicable to families dealing with a diagnosis at any age.
So, lets get started. This is what I wish I had known.
I still remember the despair I felt sitting in the Emergency Room the night of my daughter's diagnosis. You may be feeling similar emotions, or emotions that are just as bleak but different. Anything you feel right now is normal. In general people facing the diagnosis of diabetes in their child go through denial, grief, anger, and depression. Based on my experience the phases werenʼt as orderly as the books lead you to believe. I felt as though I were in this bleak existance floating between denial and such despair.
Here are my practical recommendations for starting to heal in these first 30
1. Be kind to yourself.
2. Try to accept that this is what life has handed you, and you will define
yourself by how you handle this. And, you can handle it well.
3. Know that your child will give you strength and become your biggest
Iʼd like to share with you a poem my daughter wrote 2 days after
Diabetes makes me mad and happy
But mostly sad
How can I get through this way?
I just have to get through this day.
I hope I see the stars.
Then I want some chocolate bars.
Because sometimes the stars can make a shape like a chocolate bar.
Diabetes really hurts.
But sometimes I may burp.
I like this rhyming song.
And I like to rhyme along.
However your child chooses to express themself, you will be amazed by
how they handle this. I have been a Family Physician for many years, and
what has always overwhelmingly stricken me is that children always
handle chronic illnesses they get better than their parents. So, I feel
confident telling you that you will get strength from your child. As you
watch them learn to process and handle this you will gradually feel better.
4. Know that the beginning is the worst. The first blood sugar checks, the
first planned meals, the first shots...they are horrible. Just know they will
5. Do only the bare minimum in every other aspect of your life for the first
few weeks. Recruit help. Even if you have never asked for help before
this is the time to do it. Tell people what you need. Donʼt make them
guess or they will guess wrong.
6. Try to give yourself ten minutes a day where you take a vacation from
diabetes. This will be hard at first as it consumes you. But it is important.
For me it was reading a romance novel while I blew dry my hair. Donʼt be
surprised if you have to keep re-reading the lines, but at least go through
7. Start seeking out a support group. Go to Juvenation, this is a
Facebook equivalent for Type 1 diabetics and their families. The JDRF
has a link to pen pals you can get for your child. See if your doctorʼs
office knows of a support group. Reach out---you will feel so much better
talking to others that have been here and made it out to the other side.
8. Know that this despair and these feelings wonʼt go on forever. There
will come a day when you wake up and things arenʼt so black. You will
realize that while things are not normal, they are a new normal and they
are ok. If you donʼt start noticing that things are better after the first 30 days
talk to your doctor. You may be depressed and it will help you, your child,
and your whole family if you get help for this. It is common and it is
treatable. You are going to need to feel your best to take care of your child.
9. Get a food scale and a good one. We have one that comes with a book with every imaginable food. You enter the code for the food, weigh the food, and push carbs and it gives you the number of carbs in the food.
10. Streamline the carb counting. Here's what I mean...I learned very quickly that 84 grams of grapes=15 grams of carbs. Pick your child's favorite food and learn how many carbs are in it. Label your boxes if that helps. One of the most helpful things anyone did for me was when my mom went through our pantry and wrote on our food boxes. For example, she put 5 crackers=15 grams of carbs. She did this for almost everything in my pantry. We don't do it now as we tend to buy the same things and have learned how many crackers or how much cereal equals one carb choice, but in the beginning it made things so much easier. I found carb counting initially very overwhelming, so anything you can do to make it easier helps.
11. Know that if your child is like mine they will be STARVING in the beginning. Jessica was constantly begging for food. When we went back for our follow-up they said "Oh yeah, we forgot to mention that kids are starving when they are first put on insulin." We went through bags and bags of string cheese that first month---come up with some carb free foods that you can give your child when they are starving and have already eaten all their alloted carbs.
12. Know that your child's crying or screaming or begging when you are about to give them a shot is just their way of coping. A good friend told me "aren't you glad she has found a way to cope?" It may be unpleasant, but that is really what your child is doing. They are just coping with the shots they must now endure. And soon she or he will find a more pleasant way to cope.
13. Don't forget your non-diabetic kids. This is scary for them and they may be feeling guilty. A lot of siblings wonder why their sister or brother got diabetes, instead of them. If your child is young, make sure you tell them it is not their fault and it was nothing they did. Young children often feel responsible for things they shouldn't. Try to spend some time touching base with them and seeing how they are doing too.
14. Make sure you arm your child with knowledge. My daughter's first day back she was greeted about questions as to why she got diabetes...did she eat too much candy? There is an excellent book called "Taking Diabetes to School," that we went with our daughter to read to her class her first day back. Depending on how old your child is this is something you should consider.
15. Try to keep doing all the things your family did before. They may have to be modified, but don't let diabetes take what you and your child enjoy away from you. My husband has lived with Type 1 diabetes for over 20 years---he has traveled to desolate parts of the world, gone through medical school and residency and has also become a Family Physician, and never let diabetes stop him. Don't tell your child they can't do something because of diabetes...ask them how they will do it. We love to travel and so we planned a short weekend away soon after my daughter was diagnosed. Proving to ourselves we could successfully still travel all while managing her diabetes was a huge sense of relief. Look at what your family likes to do and make an effort to keep doing it. Diabetes can be intimidating, but don't let it win!