A friend just sent me a text telling me of her friend in the UK whose son was just diagnosed with Type 1 diabetes.
He’s 11. If he is a wizard he’ll be heading off to Hogwarts in a month and no doubt Madam Pomfrey would fix him right up. Perhaps there is a potion similar to Skele-Gro that can be used to grow new beta cells.
The text from my dear friend regarding her friends sweet boy is just one of three I’ve received in the last few months. I’ve connected via the phone with the other two moms but since this friend of a friend is in the UK, phone calls are more costly so I told my friend I’d write this post so she could share it (my friend asked if she could share my blog with her friend). I haven’t written in some time so my recent posts may not make sense or be relevant to a newly diagnosed family.
Why didn’t I write ‘a parent of a newly diagnosed child?’
Because honestly when a child is diagnosed it is a family affair. I mean no disrespect to those living with diabetes, I’m not suggesting those of us with fully functioning pancreases will ever truly understand all that it is to live with diabetes. We won’t. Just like those who have diabetes that don’t have children with diabetes may never truly understand us. The best we can do is be empathetic and try our best to be supportive of each other.
Crap I’ve already digressed and now the new parent is wondering when the bloody hell I will get to the point.
So here goes, if you are a parent, grandparent, family friend, or sibling of a recently diagnosed child, I am sorry you have reason to read this.
There will be many well-meaning folks that will do their best to console you. They will say things like:
“At least it’s not cancer” Yes, cancer is bad. Very bad. And yes at least diabetes is not cancer, but right now diabetes is a huge scary monster that has, in your mind, stolen your healthy child. Thus, unless the folks who say ‘at least it’s not cancer’ have had cancer, lost someone to cancer, have diabetes, or love someone with diabetes, they don’t understand the difficulties of a lifetime diagnosis but they mean well.
“It could be worse” Things can always be worse so this phrase can be used for anything. Stubbed your toe, could be worse, could have whacked your balls on the corner of the table as you tripped, thank goodness it was just your toe. Still your toe hurts and knowing it could be worse doesn’t make you feel better. Again, well-meaning people say stupid things because they don’t know what else to say.
“Oh my granny had diabetes, lost her leg, she did.” People say this in an attempt at empathy. They are trying to connect to you. They are trying to say they understand. They do not know that when a person with diabetes or a parent of a child with diabetes hears of amputations, complications or death due to diabetes we immediately think of how that could happen to the ones we love, or themselves if they have diabetes. Of course pwd/cwd (people with diabetes/children with diabetes) and those who love them don’t need or want these reminders. That B roll is often played in our minds. Thankfully it becomes a re-run that we skip over as we watch those we love with diabetes thrive.
You will also get a lot of questions and you will get the same questions repeatedly from family and friends for the first bit after diagnosis and it will be both annoying and comforting. Annoying because you are answering the same questions again and again but from different folks. Comforting because those that ask questions care about you and your child and that will let you know you have support. Just keep in mind it is a new person asking each time unless you have some self-absorbed neighbor that asks the questions but only as a courtesy before they start telling you about their most recent colonoscopy. You know the type – the type that just wait for their turn to talk. You should totally toilet paper that neighbor’s house, but then you’d have to listen to them whine about how their house was toilet papered. (If there is no such thing as toilet papering a home in the UK – it is when full rolls of toilet tissue are tossed up and around trees and shrubs in the garden.)
This is already excessively wordy. Here is a picture of my dog to break up the wordiness.
There are many ways to manage diabetes. There are insulin pumps that are worn 24/7/356 that infuse insulin into the body. Most types of pumps have tubbing that connects to the body via an infusion site that is moved every 3 or so days. Most newly diagnosed pwd/cwd spend at least a few months taking daily injections. This is often referred to as MDI (multiple daily injections). There would be one injection of a long acting basal insulin that helps maintain sugar shifts due to hormones and the normal functions of the body. The other daily injections are taken when the pwd/cwd eat or to correct a high blood sugar. Using an insulin pump means no long acting insulin since the insulin pump continually infuses insulin to simulate what a working pancreas would be doing and then is also used to bolus insulin at meals and to correct high blood sugars. The amounts of insulin various based on amount of carbohydrates consumed, current blood sugar, and insulin sensitivity factor.
All pwd/cwd check their blood sugar multiple times a day using a blood glucose meter. A tiny poke of the finger to draw a tiny droplet of blood and 5 seconds later a little device tells you a number. It is not a report card. It is not a good or bad number. It is a just a number. The number will help you decide how much insulin is needed or if carbohydrates are needed. I stress the not a good or bad number because small children will attach their self-worth – shoot adults occasionally attach their self-worth to that number. Imagine if 5-10 times a day you were told you were good or bad. So, it’s a number and a decision is made based on the number then the world continues to rotate on its axis.
Obviously if you are a parent of a recently diagnosed child or a recently diagnosed adult you know about bolusing insulin and checking blood sugars. I included those bits for extended family and friends who did not get a crash course about diabetes care in the hospital. But the reminder about good vs bad is for everyone.
Below are a list of insulin pump manufacturers if you are interested in learning more about insulin pumps. There is also a link to the Dexcom page. The Dexcom is a continuous glucose monitor. It monitors blood sugars 24/7 for the length of time it is worn. My 3 cwd use the Dexcom G5. They typically wear each sensor or 14-21 days (per manufacturer it is only approved to be worn 7 days but very few people follow that). My two boys use the Animas Ping insulin pumps. My daughter uses the Tandem T:Slim. We have never tried the Omnipod insulin pump. Yes they are listed in order of our preference although Animas and Tandem are equal in my preference. Animas, Tandem, and Medtronic all offer an integrated pump (Continuous glucose monitor data can be seen on pump screen) but our family choses not to use integrated pumps since CGM technology advances faster than pumps and we like to be able to use the most recent CGM tech. Also the Enlite CGM that is used with the Medtronic pump is substantially inferior to Dexcom technology per user experience and data submitted to FDA. There will be a new Tandem pump released by year-end and if I understand things right it will be able to be updated with new CGM tech as it comes out.
None of my kids use Animas anymore, in fact Animas sold out to Medtronic and in Sept of 2019 will stop all manufacturing of Animas pump supplies which has forced users to stock pile supplies and will eventually force users to purchase a new pump or use multiple daily injections.
All of my kids have upgraded to Tandem X2 insulin pump with dexcom integrated with the pump.
2/3 of my kids use Dexcom G6 with Basal IQ which helps reduce the frequency of dangerous low blood sugars.
My youngest is still using Dexcom G5 since he dislikes change and we have a number of sensors and transmitters in our closet so he is just working though those before he switches to G6.
Continuous Glucose Monitor: Dexcom
I know much of this seems overwhelming and the pump/CGM stuff may be too much to think about right now.
If you or your child was diagnosed recently know that there is a grieving process.
Receiving a diabetes diagnosis is hugely life changing. As a parent I have received 3 such diagnosis. Each time my reaction has been different in some ways but the same in many others. Each time I have had to allow myself to grieve for the future I had pictured for my kids. I do believe my kids can do everything people without diabetes can do but they will always have to do so much more along side it. So I grieve for their loss of freedom and their loss of completely carefree days and nights. People with diabetes climb mountains, compete in professional and olympic sports, race cars, become rock stars and actors, serve in public office, are school teachers, truck drivers, doctors, nurses, mail carriers, and more. You or your child should never consider the possibility that you/they couldn’t be anything they want to be.
There will be sleepless nights when diabetes behaves badly with high or low blood sugars and as a parent you stay up or set an alarm to check your child’s blood sugar while he sleeps. I strongly suggest sharing this responsibility with a spouse. I took on all diabetes care myself when my youngest (first one) was diagnosed since I wasn’t working outside the home. Sleep deprivation is a bitch. It causes weight gain and can lead to depression. Share the responsibility and take care of yourself or you will be of no use to your child or anyone else.
I feel like I’ve rambled on far too long.
Again I am sorry you have reason to be reading this.
I would like to tell you it gets easier.
It doesn’t. But, you get stronger. Your child gets stronger.
A side effect of diabetes in children is they (the children) often grow up faster. Facing ones own mortality can do that. To reduce the negative side effects of diabetes I encourage you to keep doing everything you were doing before. It means more planning and it likely means trusting others (after a thorough tutorial) to care for your child. Make diabetes second or even third to everything else. Say good morning and hello before asking for a number. Focus on saying yes to as much as you would have said yes to before the diagnosis.
In case you missed it in my profile. I am not a doctor or medical professional. I am a mom of three children with diabetes. My youngest was diagnosed at age 2 in 2007. My oldest was diagnosed 2 years later at age 9 and my middle child was diagnosed 4 years after that at age 11. Don’t worry – multiples is rare. We are just special. I am not an expert at anything. I have not always followed the advice I’ve shared. I only can share it now because I learned the hard way what didn’t work.
My last piece of advice is to find others like you. If you are a parent find other parents. If you are a newly diagnosed adult find other adults with diabetes. Online connections count. You can always find me via my Stick With It Sugar Facebook page and you are always welcome to email me through this blog. I will do my best to answer questions or connect you with smarter people that can answer questions I can’t answer.
To quote Christopher Robin (AA Milne)
“You are braver than you believe, stronger than you seem, and smarter than you think.”
7 thoughts on “Dear Newly Diagnosed,”
Well done… If only everyone could receive advice like this upon diagnosis.
You’re good people, Tina.
Thanks Jo. I do wish someone had given me similar advice regarding the well meaning stupid people. I spent a number of years getting frustrated with well meaning people. I also wish someone would have slapped some sense into me when I insisted that I do it all. It wasn’t fair to me or to Chad. He didn’t learn and I have spent a number of the last nearly 10 years in a state of exhaustion. now the kids don’t trust Chad to make decisions or help them. Live and learn right. Thanks again.
could have whacked your balls…
You are so funny!
I love your dog.
whacking ones balls is not a laughing matter. Well it is but not for the one whose balls were whacked. 🙂
Parents of children with diabetes are the true heroes of the diabetes community.
I referred your blog to the TUDiabetes.org blog page for the week of August 1, 2016.
What would someone newly diagnose like to know that you now know? Dear newly diagnosed me; It’s going to suck today… and it’s going to suck tomorrow.
I’m also sorry I didn’t see your comment sooner. I don’t know what is going on but I get about 35 spam comments a day and I can’t stop it or sift through them fast enough.
I hope you do have some days that don’t suck as much as others.
I can’t truly understand what it is to have diabetes and I try to empathize as much as I can. I am really quite sorry things are difficult for you.