Today, we welcome Sylvia White from Memphis, TN, who is not only a D-Mom, but also a certified diabetes educator (CDE) and insulin pump trainer (first for Medtronic and now for Tandem Diabetes), plus a registered dietician and licensed counselor. She's also a D-blogger, offering education and support to our online community at her Parenting Diabetes blog.
With 10 years of T1D under her belt from all these angles, we're honored to have Sylvia share her great sentiments for parents of newly-diagnosed kids here at the 'Mine:
A Letter to New T1D Parents, by Sylvia White
Two of my three children are living with type 1 diabetes, and they have recently had their 10-year “Dia-versary.” For those not familiar with the term, it is an anniversary of the diagnosis of diabetes. It isn’t something we necessarily celebrated, but thinking about it made me reflect on how much we have learned and how far we have come over the past decade.
Having a child diagnosed with type 1 is a scary and emotional time. I’ve been there twice, and it doesn’t get easier the second time. At the end of 2006, my husband and I were finally getting comfortable with caring for our 12-year-old son who was diagnosed that previous February, when our 6-year-old daughter was diagnosed.
Once again we were thrown into the abyss of feeling shocked, worried, and overwhelmed.
My children were diagnosed at very different ages emotionally and developmentally. At 12 years old, Josh was able to mostly take care of himself with our help. Sara, on the other hand, was in kindergarten and needed much more hands-on care.
I remember the night I checked Sara’s blood sugar with Josh’s meter when she was showing signs of diabetes. Unfortunately, the meter read 354. I still remember that first number from 10 years ago. I remember walking back downstairs and crying most of the night. I knew what the number meant and all it entailed. The next day started the whirlwind of care.
I had so many racing thoughts that first night keeping me awake. How would I care for a little 6-year-old? How can a girl wear a pump when she likes to wear dresses? How bad would she fight while we gave her shots? How would she be able to go play with friends? How would her school care for her? Diabetes has so many worries.
These were questions I didn’t think as much about with Josh -- because from the start he was able to give his own injections, count his own carbs, check his blood sugar, and go to friends and know how to take care of himself. He had even gone to a non-diabetes summer camp that previous summer after his diagnosis and did a great job of caring for himself.
I had worries with Josh too of course, but different ones. I worried about his future, if he could still do what he wanted to, could he still play soccer and baseball, would he get complications from diabetes? I worried more about his future, whereas with Sara I worried more about immediate care.
When children are first diagnosed, parents are exhausted, running off little sleep and raw emotions with no light at the end of the tunnel. They are in education overload, having to learn so many things to take care of their child and keep them alive. They frequently get no breaks because there are usually few people who can take over care for a child with diabetes. Even having a night out with a sitter is difficult.
I want to express that things do get better, and families develop a new normal -- one where we become new members of the Diabetes Community, even though we hate the reason we have to join.
I have gone on to become a Certified Diabetes Educator and an insulin pump trainer, finding purpose for this awful diabetes disease in helping new families cope and learn. My favorite part of my job is listening to parents and their worries, and letting them know through my experiences that things will be all right.
Recently, I was training a 3-year-old patient’s mother on her CGM. She had so many worries and questions about her child. I enjoyed my time connecting to her and helping her know that things will get easier as her daughter gets older. These are a few of the frequent questions I hear:
Will I ever get some sleep?
Yes, especially with the new continuous glucose monitoring systems that alert when blood sugars are too high or low. You will learn when you need to set an alarm to get up and check your child’s blood sugar, and when you are confident to sleep through the night without getting up and they will be all right. You will find someone who can help care for your child overnight and your child will get older and be able to care for him or herself.
Does it ever get easier?
Yes, I know it is overwhelming now and it seems like you cannot understand carb-counting, estimating doses, remembering how to treat highs or lows, or know what to do about ketones, but as you gain experience, it will all become second nature. You will even be able to do things like change an insulin pump in the car riding down the road. You can also talk someone caring for your child through every step including screens on an insulin pump. Time really does make it easier.
Will he/she be able to do all a normal child does?
Yes, my son played soccer and baseball. He went to college 14 hours away from home, and even did a study abroad for three months will no problems. My daughter has done gymnastics, soccer and tennis. She goes on weekend trips with church groups and friends, goes on vacations with friends, drives, and plans on going off to college and becoming a doctor. Your child will not be held back due to diabetes, life just takes extra care and planning.
Here are some tips that have made mine and other parents’ lives with diabetes easier:
IT'S OK TO GRIEVE
You may go through the stages of grief and that is normal. You are grieving the loss of a healthy and carefree child. You are grieving the loss of a life without counting carbs and giving shots. I went through anger, shock, bargaining with God, and doing all I could to find research trials to find a way to “cure Josh” even though there are currently no cures.
Don’t be afraid to feel or express your feelings about this disease. Not only does this disease change your child’s life, it changes yours. It changes many things you do, causing you to rethink so many things that you may have hardly given a thought to. Things like Halloween, school parties, sleepover parties, vacations, and so many other things are affected by diabetes.
Get educated. The key to feeling more comfortable with diabetes is learning all you can about caring for your child. Read books, go to seminars, JDRF gatherings, and anything you can find. Send your child to diabetes camp where you can get a break but your child can learn all about caring for him or herself.
Keep current on the new technology, research and trials, and make an education appointment yearly with your CDE to see if there are new things you need to know and to reassess where your child is developmentally and if things have changed due to age.
Find a good diabetes team. This is a top-notch priority. Find an endocrinologist you can relate to and one that has an approach you are comfortable with. If a treatment like an insulin pump is important to you and your endo doesn’t approve of it, seek out other opinions.
Your treatment team should consist of an endocrinologist, a CDE, a registered dietitian that is competent in children with diabetes, and sometimes a mental health professional. They are all there to help you, so reach out and make appointments when you need them, not just in the beginning. Sometimes a yearly CDE appointment is great to review where you are, any changes, and any new helpful tips.
DON'T STRESS THE NUMBERS
Try not to focus on the numbers. Do not label numbers as bad. Everyone gets some high numbers. The goal is treat it and learn from it. Why is it high? Is it a mixed dose, miscalculating a dose or carbs, sickness, stress, growth spurts? There are so many things that will cause a high or low number. Don’t let your child feel bad or as if he/she is to blame for a "bad" number. Just treat and learn.
Remember to have a life with your child that is not all about diabetes. Some days I feel like my conversations are all about the numbers, whether they bolused, what the blood sugars were at school, whether they changed out their infusion sets. Be sure to have other conversations and routines that have nothing to do with diabetes. Your child is so much more than just diabetes.
YOU ARE NOT ALONE
Find some support. Frequently parents of children with diabetes feel very alone. Due to rarity of the disease, sometimes families know no one else with diabetes. Reach out to a local JDRF group, join online diabetes groups, and Facebook groups for parents of children with diabetes. Send your child to a diabetes camp where they can meet many others with diabetes and make friends for life.
THE FUTURE IS BRIGHT
Trust the rest of us who have been there. Things will get better and your child will have a bright future. Your child can still do anything (s)he wanted to do without diabetes, except drive commercial trucks, fly commercial planes, and join the military, just with some precautions.
In time, you will one day hand off your responsibilities to your child, and he or she will fly. Our goal is to teach them to care for themselves. There will come a day when all that is taking so much of your emotional energy and time will be second nature and quick. And there will come a day when they have left the nest and you hope you have taught them to take care of themselves.
Above all, don’t fear the future, or what it holds for your child and family.
Do the very best you can to learn and take care of your child, teach your child as they age how to take care of himself, get good support, and look ahead with hope! Great diabetes research is going on and there are exciting new things coming and a bright future for people with diabetes.
Hang in there, you can do this! And when you need help, just ask! There are lots of us who know what you are going through and are here to help and be supportive.
Thanks for sharing, Sylvia, and for the strong encouragement -- definitely solid advice for new D-parents in our Diabetes Community!