New to the life of diabetes! (LONG)

Type 1 and LADA Parents of Children with Type 1 Diabetes
1

Hi everyone!

My name is Karen and I am the mom to a newly diagnosed type 1 diabetes 12 year old boy. What one may not so easily anticipate is the proverbial axe falling on a loved one while you stand helplessly by wishing it could be you instead of them but knowing full well that you do not get to make that choice. And so it was when I learned that my son had type 1 diabetes. To say I was blind sided would be grossly understating the situation. He wasn't sick. He was happy. Active. Excelling in school. Upon dismissal of this wishful thinking we were fast tracked into the surreal world of endocrinologists with a blur of doctor appointments, lab tests, needles, pharmacies, carb counting, finger pokes, blood checks, injections 4 times a day, a whole complex and somewhat intimidating array of goods and services designed to provide insulin by an injection since my sons pancreas was failing him. This is what they called our "new normal" -- a polite way of saying your life has been hijacked.

At first I was numb. I wanted a do over. I didn't sign up for this and really wanted to withdraw from my family being a contestant. Each morning I would wake up and realize the reality and then cry. Then I would put my big girl face on and start the day off. Fixing my son breakfast, counting the carbs, checking his blood and giving him insulin for the amount of carbs he was about to take in with his breakfast. It seemed like I would no sooner get this done and it was time for lunch and it all started over with counting, checking and injections. At this point I would feel exhausted and my life felt robbed. But before I could take any time to soak any of this it, it would be dinner time. Yep, counting, checking and injecting. Then throw into it all the feelings of being scared, worried and sad.
For days I felt this sense of guilt going through me. How could I have the nerve to feel the way I was feeling when it was my son who had to check his blood and inject insulin into his young body? Was I being selfish? I threw myself head first into everything. Reading every article I could find. Reading message board after message board. Reaching out to anyone who could give me any information I needed to know.
Fast forward to almost a month into this new life we have. While I feel somewhat less overwhelmed, I still wake up feeling like a 400 pound man is sitting on my chest. As I walk down the stairs each morning, I have to stop for a moment and take a deep sigh before jumping into my, our new life.
I know all of you have felt the feelings I am experiencing now and I know that eventually this will all seem second nature to me. It will always be work, but with less of the overwhelming feelings I feel now.
Where is everyone from? I am in Michigan. Troy, Michigan to be exact.

2

Karen,

Welcome to the family! It’s the kind of family that you never hope to join, but you are so grateful to be a part of! My son was diagnosed in February (a month before his 4th birthday) but then a week later my boss’s son was diagnosed at the age of 12, so your experience is probably much closer to theirs. When Aust was first diagnosed I used to HATE it when people would tell me that it would get better. I didn’t want to hear that!! I wanted to know that I was going to survive that next meal, that day. But now we are in 9 months and it has gotten a little bit better. It will always be a challenge, it will always be a scare, I will always wish that it could just go away. Allow yourself to feel however you feel, and just do the best you can. Our kids are so much stronger than we think, and this process opens your eyes to that. We have 2 daughters (one older and one younger than Aust).
I like how you said your life had been hijacked- how true!!
Take care of yourself and each other.
Sending hugs from Utah!!
Lisa

3

Karen,

I know your pain, I know your burden, I know your anxiety, I know your stress. I carry it all too. Our son was diagnosed in February of 2010, a month before his 13th birthday.
You can read his diagnosis story here

There is a huge online community of parents coping with this and without them I am not sure I would be ok. And I am more than ok now. Are you on facebook by chance? If you are willing I could friend you and set you with an amazing group of people. There is also a blog world that has helped me so much. You have a gift with words- have you thought about blogging? It is a huge relief for me.

Our son also participated in a clinical trial that had to be done it the first three months of diagnosis. It has made a huge difference in our sons management and blood sugars. It has helped him immensely. A trial isn’t for everyone, but if you are interested in more information let me know.

The other thing that has helped so much is Tanner getting a pump. I know you are so new to everything, but it helped Tanner with his low blood sugars and gave him some freedom. The first months are so hard, you remember vividly what life was like before diagnosis. The ease, the freedom, the lack of stress. You can email me personally anytime. aprildurham5@gmail.com

One of my favorite quotes.
“You don’t know how strong you are, until strong is all you can be.” Thanks for reaching out- it is hard and emotional. Let us be here for you.

April Durham

PS I live in a town called Petaluma Ca 45 min north of San Francisco.

4

What you are feeling is totally normal! My 4 year old daughter was diagnosed September 5, 2009 (she was 3 at the time). I promise you it will get better, things will become routine and carb counting will be second nature.



In many ways I still feel the same as you - I think I always will - in the sense that I want a do-over. Like you, we were blindsided and it still seems impossible that our children could have this condition. I won’t say tears never come to my eyes, but it is more the idea that my daughter could have this condition that upsets me. Because while of course there are (really) bad days, most days are good and normal and happy. We try not to have the diabetes factor into any decisions we make for our family (not always easy, but we try).



The good news is that my daughter and so many kids diagnosed DO NOT LET IT AFFECT THEIR LIVES AT ALL!! My daughter is the same spunky, smart, funny and sweet girl she always was and always will be. Your son is the same person as well. Diabetes will not stop your son from doing ANYTHING he wants to do. A huge thing that worked for us was going on an insulin pump (we are on the Omnipod). She went on the pump in January and it has made a tremendous difference in her life. As close to “normal” as we’re ever going to get at least with the currect technology that is out there. It’s probably too early for your son to be on the pump but it’s something to think about for the future if he chooses.



Hang in there and know that every parent on these boards feels the same as you…and it will be ok…



I have learned so much from the parents and people here. It has been a huge comfort to me to know so many others feel the same way and life with T1 is still a great, happy life, just with a little extra work.



We are in Rhode Island, by the way :slight_smile:



Hang in there!

5

Hi, I´m 37years old 4 kids mom from Finland. My son was diagnosted diabetic 1 when he was nearly six years old. he was healthy looking, school was just started, energy filled boy and then it came…needles, carbs counting etc etc - you know.
It takes nearly one year before I notice that diabetes isn´t illness anymore it is only one of my lovely boys feature in this life and we manage with it - he manage with it.
now he is almost 11 years old and he take care of his diabetes himself reaaly great, he counts carbs, take blodtests and tells me how much insulin he will take and how much carbs he´ll eat…I just say “ok” . He got insulinpump two years ago and it helps really much but still I remember those first days, first weeks…first year when I feel like machine - counting machine and fear inside me what may happen if…
you can write me if you want, I´ll write back, email kasalaink@gmail.com (it´s different than my account here but it´s my email)
I wish you power, light and love, Maarit

6

Hey Jerodsmom! Welcome!



The way you describe your feelings and experience sounds ridiculously familiar. My son was diagnosed at 3.5… a spry, rough-housing, physically outrageous little dude. All this stuff happens very suddenly and very rapidly for most of us… it certainly did for us as well.



Tyler is 5 now and doing very well on his pump… his A1C has slowly dropped since we starting pumping about 16-17 months ago and he’s now right at 7. His moods are pretty consistent and we know him well enough now to be able to fairly reliably predict when a mood is just a bad 5-year-old mood or an indication of a low or a high.



Daily life with Ty is kind-of like this: There are days when you ALMOST don’t remember that he has diabetes… except for regular testing and use of the pump… those days are pretty golden… when his BGs stay between 100 and 200 all day and he’s a normal little boy for all intents and purposes… and there are days when I literally scream “I HATE DIABETES!!” and I’ll cry… because his keytones are high, he keeps puking, his bg keeps bouncing up and down… he’s within a couple tests of needing to go back to the hospital…



Most of the days fall somewhere in-between… but the vast majority lean closer to the “comfortable” side… and it does get easier. It does become more normal… more routine.



The only times anymore that I feel like we’re not routine is when he needs a set change at 3am… or sick days which are FORTUNATELY very rare for us… or an unexplainable low happens… wherein as an analytical man I spend the next 2 hours analyzing all our steps over the last 24 hours until I figure out why it happened.



God’s mercy and grace gets us through and strengthens us and Tyler. He’s a tough little man… I know that God chose him to have diabetes over some other kid because he knew that Tyler would be the kind of guy who can handle it. He’s already proven to us that he can. He makes my heart shine with proudness every time someone tries to give him something and he proactively asks “Is that sugar free?!”… and he he doesn’t even cry or pout when they say “no” and he won’t eat it. What a gift we have in him.



oh yeah… I definitely wish he didn’t have to have diabetes… but now that it’s been over 1.5 … I can’t imagine a life without it anymore.



You’re in good company here. Stick around and read for a while… you’re far from alone!



-Chris

Denver, CO

7

Hi, we are from Florida. I have a 4yr old girl diagnosed at 13 months. You cannot imagine what is pricking and inyecting at least 6 times a day or more a tiny little baby…but I have to tell you things get better. She is on the pump now and although I still have to prick her all the time I don’t need to inject her, I just change her site every 3 days. SHe’s much more stable and feels much better since going on the pump.

Still diabetes is hard, they have to go through so much…my girl is much more mature than any other girl her age.

As a parent I totally understand you, I myself have days when I am so tired I can barely stand up. I go to sleep at 12 after checking her, wake up at 3:00 am to check her again and at 6:30 to make breakfast, take my son to school and start they day. It is a lot of work, and although at first it’s overwhelming then you do it mechanically.

Seeing her everyday, seeing how she grows, smiles, runs, plays, dances, and seeing her A1C stable -so she lowers her risks for the future- it’s my reward and I’ll keep doing whatever I need to do to keep it that way. She’s my little doll and as a mom I feel it’s my responsability to teach her, help her and I even cry with her when we need to. We’ll go through this together until a cure is found.,

8

Hi Karen,

We can so relate to your story as we have all experienced exactly what you are going through. My daughter was diagnosed on Sept 30, 2009 which was just a few days before her 12th birthday. We are from Williamsburg, Virginia. Without question, the first few months are overwhelming. Eventually you will know the majority of carbs by memory and a pump significantly reduces the stress of day to day management.

What we have discovered is that our daughter can still do everything that she loves to do. One of her passions is tennis and she continues to progress well in her development. Her big adjustment during physical activity is learning to test and test and then test but it has not hindered her matches. She has also performed very well in school. We are fortunate to have an outstanding school nurse with whom we have formed a great partnership. We have made a point of sitting down with every teacher to discuss the issues that our daughter faces on a day to day basis. This has proven to be very useful since there is another type 1 in my daughter’s grade and my daughter seems to feel the impact of high or low Blood Sugars much more severely than her fellow student.

Please know that we are here to help you in anyway that we can. I am very grateful for the close relation that we have developed with other parents of type 1 children. Those relationships really do help.

Larry

9

hi jerodsmom



your comments sum up my feelings fairly well. Our little man was diagnosed in May this year. He is 6 and very much like your own boy was (and is) enjoying having a great upbringing in Ireland. I was deeply upset when we discovered Fionn has diabetes.Its been so difficult to see a little part of my sons childhood disappear. We’ve been doing the same as you described, reading up on the condition and looking at all the best options that are available for him to manage his condition. The one big difference that I feel gives me more hope than anything else with diabetes today is that the internet is linking all our individual battles and experiences into a strong closely knit dynamic problem solving community. I am fully convinced that this will provide us all with the elements to solve each problem we are faced with in the best possible way.

10

Karen,
We have all been there, and many of us still are! we are 1 year into our first diagnosis and 2 weeks into our second. There are definitly moments when i am not sure that i can even put one foot infront of the other, and my vision goes blurry and i am sure that some sick cosmic joke has been played on me because how could 2 of my beautiful daughters have diabetes when we did everything right, and we have no family history (isn’t diabetes genetic? ha ha, try explaining that to the 95% with no family history). i will say that it does get better, but it isn’t ever “normal”, instead you get the new normal. Math becomes second nature, and you grow your “diabetes brain”. Much of the first year is trial and error (and the errors can be scary, or at least frustrating!), but you learn your child better than you ever thought possible. you will learn what is best for your child and family. we are still shots, there isn’t a pump out there that meets the needs of my girls, yet (please hurry solo and jewelpump!) but even with that my girls live very normal lives. they are extremely active, and super competetive swimmers. they are smart and funny, and still the people that they want to be. we made a promise to them that we would make diabetes fit their lifestyles, and not their lifestyles fit their diabetes, and we have done that.

my biggest piece of advice is, when things get hard, or your sons diabetes starts causing complications with something that he loves, push through, there is always a way to make it work. It took 9 months before we got my 1st daughter on the right meds. I then did get a “do-over”, but not the one i wanted. When our second daughter was diagnosed, i knew exactly what to do and skipped all the trial and error, we went straight to the regiment that we knew would work. That is when i really realized how far we had come. I am sure that we drove the staff batty in the hospital, because i ended up challenging a lot of what was “standard for new onset”. I knew from our first diagnosis what would work, and what wouldn’t. we were lucky to have a doctors staff that was more than willing to defer to my “expert opinion”. there were quite a few computer overrides that had to happen though!

you are right that worst part is not being able to do anything, and feeling helpless. i remember walking around the hospital with our first diagnosis and looking at kids who had just undergone major surgery, and thinking how lucky those parents were because their child could be “fixed”. i no longer feel that way. When our second daughter was diagnosed, we knew before she was “clinical”. we got to watch as her pancreas failed her, and she got more and more tired, but her blood sugars hadn’t yet climbed high enough, her pancreas continued to try to do its job, but could keep up. It was awful to be told that we just had to wait, because we didn’t want to risk doing greater damage by interceding too soon. it was a relief when we finally saw BG numbers consitantly over 200, and we had passed the “threshold”. we were finally able to give her pancreas the help that it needed, and we caught her before the dreaded DKA started.

I now know that my kids are still whole, and diabetes is becoming more and more of an “invisible disease”. in many ways my girls are better people because of what they deal with. they can be much more compassionate. My other 2 non d’s have benefited as well. My 5 year old was asking people when they trick or treated if they knew how many carbs were in the candy because she wanted to make things easier for her sisters!

On the flip side i am not sure if the pain ever really goes away. i hate that my kids have been robbed of some of their innocence. no 7 year old should be made to face their own mortality, kids are supposed to be invinicible right? But i am also trying to let that go, my daughter who was just diagnosed says that she still feels “normal” despite all the finger pokes, and injections. She is a little suprised to learn that she is still who she was, just with a little extra.

you are definitely not alone, we are 2 more in Seattle, Washington

11

Thank you very much Lisa! Hugs are nice!

12

Thanks so much April. The pump sounds great, but my sons doctor likes to wait until a year after diagnosed to start that. For now, with how much tweeking they are doing with his insulin and carb ratios, its probably best for now.

13

Thanks for the encouragment! I am okay with a new normal, just not very patient in getting to that point!

14

Thank you Maarit. My son is doing really well at taking care of this on his own. We do require one of us (my husband or myself) to recheck all his figures and insulin drawn, but he is a trooper and I am proud of him for handling this so much better then me (although he doesnt realize that I am not handling it well). I am looking forward to the insulin pump because it truly sounds like it gives you a little bit of normal back in your life.

15

Thanks for the welcome Chris. I love the proudness in your words that you have for your little guy. My son came home from school yesterday and was being silly talking in a silly voice. He said to me, I was so thirsty today, you would think I had diabetes or something. It made me laugh.

16

Until a cure is found! God I hope that happens. That would be lovely!

Can I ask…is it her age that causes you to check her at 3am each night? We were told after they saw our readings for 2 weeks that we could stop the 2am readings unless we had a low or high that day.

17

Thank you. It is nice to have found a group that seems positive and encouraging. Some of the places I visited on line were only making me sad.

18

Thank you! I am trying to hard to not let any of my sons youth years be taken from him and its hard because right now I wish I could just keep him at my side day and night. Everytime he asks to go do something with his friends, my heart beats faster. I have to take a breath and remember that he is still my responsible 12 year old boy that he was before October 6th.

19

I have a friend who also has 2 daughters who are both type 1. My son has a friend who is a twin and he has type 1 and his sister does not, but I guess the odds are pretty high that she could end up with it as well.

Thanks for the welcome! I am looking forward to learning and leaning!

20

April,

I am on facebook.

I have a blog that I have had for 3 years now, but its private. Just my own little escape where I can complain about my in-laws and not worry any of them will see it lol!

Karen