I just need to express myself in a environment where I don’t feel judged and tudiabetes is that place.
On Monday I diagnosed my daughter with type 1 diabetes, she’s been drinking lots and her nappy has been overflowing, I done a few tests and they where high so I rushed her to A&E where it was confirmed.
I am so proud of her she’s only 2 and she’s so brave that’s why I call her my little firecracker. It’s made our bond even stronger but I feel so alone, everyone is saying how lucky she is to have someone like me who understands, who can help and guide her. I don’t mind that’s my rule as a mother but if nobody else even wants to try and get the hang of it all am I not going to get exhausted.
When she was healthy I can honestly say there was only one person who ever babysat her but now it’s all going to be on me. I love my girls more then anything in the world but I do need support as well. I don’t know it all and I can’t be strong for all of us.
That’s a tough spot to be in on so many levels, @Osob, my heart goes out to you! Often people don’t know there’s another side to the things they say that are meant to “help.” “Isn’t it great you know how to do all this” isn’t much help if it implies “I’m so glad I don’t have to.” It’s good that you understand what’s bothering you and that you are having a go at expressing it here. Working it through with people like us, who do understand what’s involved, is a good step toward finding a way to articulate it to those others in your life as well–your spouse? your own parents?–whom you should be able to rely on to help with this. Families exist so that they can take on these kinds of challenges together; it shouldn’t all rest on you!
@Osob, I’m sorry and I’m sure it is hard. My heart goes out to you. Although there is never a good time for a diabetes diagnoses, fortunately there never been a better time to be diagnosed. Today the knowledge and the technology is so much better then when we were all diagnosed, but I know it will still be hard.
A Type 1 diagnosis for a child is a baptism of fire for the family-- especially the parents. You want to protect your children, but there’s nothing you can do to protect a child from Type 1. You MIGHT give someone a chance to keep Type 2 at bay, but there’s no guarantee there, either.
Of the myriad of things to look out for, I would encourage you to keep an eye out for how this affects you emotionally. It’s entirely understandable to experience the gamut of emotions and you need a safety valve and/ or person to talk to (in person if possible) as you deal with this new reality.
One thing that will help you is the people here. I find all of them to be sympathetic and helpful. We, or someone we love, have this second job that sucks and it is often invisible to the world. Our knowledge and experience is vast and wide-ranging. I personally hope to help others avoid some of the mistakes I have made.
The weirdest thing about Type 1 is that everyone who has it has their own unique flavor of it. So, we will offer advice, but some of it will be helpful and some of it will be useless-- and it will almost never be because it is BAD. It just doesn’t work for you.
We all want the grace that comes from people respecting our decisions, so we offer that grace to others as well.
I will also say that a truism of those who do well is that they don’t take it personally when their constant companion is uncooperative and they work not to be perfect (ain’t gonna happen) but to do their best.
So, while Type 1 may not often be forgiving, leave yourself the space to be forgiving to yourself. Welcome!
Hello @Osob and welcome to the Tudiabetes forum. I’m a T1 myself, and was dx’d (diagnosed) at age 11 - so I was learning to manage it myself from the start. Along with my parents - who went thru what you’re going thru. Do NOT let yourself get overwhelmed - you need to find some adult support that you can turn to for help, even if only for moral support. Your daughter’s docs should have some 24 hr support provisions for technical issues - if only a phone contact. Talk to them about it.
Another source on the technical level - get the book Think Like A Pancreas, by Gary Scheiner. He’s a CDE (Certified Diabetes Educator) and a T1 himself - his book is written in layman’s terms, and outlines everything you need to know, and covers just about everything you’ll need to deal with.
Good Luck, and hang in there - you can get thru this. BUT… be prepared to be involved in this with her for the rest of your life. Both of my parents were always asking me about it throughout their lies. A few days before she died, my mom was asking me about my BG levels and if I was still careful about the insulin doses I was taking and so on. Apparently, once we become parents, those habits never end.
And BTW - anyone who judges you is too ignorant to waste any time worrying about… just move on.
I am sorry that you feel so alone (not completely, since you are part of Tudiabetes).
I had my daughter very late in life. I quit my career to stay home with her. I immediately joined a Moms Club group. I met some pretty fantastic women. We met at local parks just for an hour or two or sometimes at our homes. We talked, complained, shared ideas and watched our kids (there was always a toddler dashing off while his mother was tending to an infant). Sixteen years later, and I am still friends with these women.
Find a group to join or a toddler-mommy class. My daughter later attended a cooperative preschool that required the parents to work at the school under the certified teacher’s direction. This might work for you. You can supervise your daughter’s medical care while she is learning and exploring and you can socialize with adults.
As time goes by you will find another friend or family member who will take the time to learn how to care for your daughter’s diabetes. Right now, it probably frightens them.
@Osob, I am so sorry for her diagnosis. Seeing a child diagnosed for such a sickness is such a terrible pain for the parents. It took me a long time to accept my boy’s diagnosis.
I know how hard this must feel right now. I know, from experience, that it is possible to train babysitters to care for children with diabetes – it’s just harder. Do you mean to say that your extended family is totally unwilling to care for the child ever? My wife and I don’t have any extended family where we live. The two have us have been able to take care of our child together – but it would be very difficult if we weren’t able to spell each other.
So, one way or another, I feel that it is pretty important for you to have at least another person who can take on your little girl to relay you at least some of the time (hopefully more). I really hope you will be able to make it happen!
On another topic – toddlers are harder to control than adults. It would be very helpful if you are able to communicate with parents of other toddlers and get their advice.
I grieve for your child’s diagnosis, and for the pain you must be feeling. Cheering for you - your friend Michel.
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I’m so sorry to hear about your daughter’s diagnosis. Kudos to you for catching it so early. I imagine the signs were obvious to you and it was heartbreaking to see them.
I can see how the people around you will assume this is relatively easy for you to handle and as @DrBB says, gives THEM comfort that this is something they don’t have to get involved in. I heard a lot of the same comments just because of my personality, and I had no experience whatsoever with diabetes. If people are making those assumptions about me, even easier to make them with you, someone who’s been living w it already.
I was just talking about this the other day - how no one in my family made an effort to really help me. They saw me as a strong person and that I was taking care of Caleb, and to them, that looked great. I’m still bitter that people took the easy way out. I understand how they were able to say, “she’s handling it.” It’s the way people cope themselves. It’s taught me to offer more specific help for others when I can. Rather than say, “Let me know what I can do to help,” I try to think of something I can do to help and offer that thing, or just do it.
I know when I offer general help, I mean it, and I believe others do as well. The intention is there. Are the people who are saying how lucky your daughter is people who you believe would help you if they knew how? If I had to do it all over again, I would identify some people and ask them to help me and tell them what that meant. That I needed a break from the 24/7 of unrelenting and unforgiving care that diabetes requires. That once every week or two weeks or whatever, could you please take care of my child which requires x, y and z so I can do whatever might be useful to do without having to think about diabetes for a couple of hours.
What @Lorraine said! When you need a break (and you do or will), you need somebody to help you. My wife and I went through something similar, when all of our friends said how lucky our son was to have parents like us, and then wouldn’t let our son go to their house because they didn’t want the responsibility. At the time we felt so overwhelmed by the whole thing.
My recommendation is that as soon as you can, develop a simple caregiver’s instruction manual (i.e. check bg at the following times), when bg is above a threshold do the following…And then train someone to help you, so you can get a break from time to time. Even if all it says, is when bg is above a threshold to call you, that is better than nothing.
Thank you all I just feel like when she was healthy and well nobody really bothered to really help and now all that comments are just so isolating.
When I had children I didn’t think it would be so lonely and now my daughter is ill I feel like it’s even more lonely but we are slowly getting there and have hope for th future.
Her diabetic team all seem lovely, straightforward and helpful so I am sure I can talk to them to point us in some sort of direction. Thank you
No one knows it all. We never will at least for the time being so don’t beat yourself up about it. A lot of us just have to grow into thick skin on top of all the other challenges and anxieties life throws our way. It’s a tough start but your daughter and you will find a way it just takes some adjustments in life is all. The main part I would say is take your time with the information download because it is a lot. Take the time to lover each other and never let her see that its a burden on you at her age. But eventually you will have to let her do everything on her own and grow into a strong woman. I wish you both the best of luck. You can always ask this site for questions. Tu helped me a lot when I was diagnosed. Emotionally and mentally.
Hi Osob- you are now officially your daughter’s pancreas, a job nobody would choose willingly but one that has been thrust upon you. You are lucky in one sense - there are many communities online that are full of kind people in your situation who will happily help and share. In 35 years as a t1 I never really met or spoke to a single fellow diabetic. I was fine because it was me and not my child, and I have no doubt that being a parent of a t1 is MUCH harder than being one yourself. On Facebook there are many fabulous closed groups, and even ones just for mothers like yourself. The one I frequent the most is called typeonegrit and I have met so many incredibly knowledgable people there. Another thing you might want to do is check out the YouTube channel called Diabetes University. There hours and hours worth of videos an A parent like yourself like yourself even put together a playlist for parents of newly diagnosed children. Everything there offers a somewhat alternative view to what the Ada espouses, but it is chocked full of useful info to add to your quickly growing arsenal of diabetes related knowledge.
Best of luck, you can definitely do this!
I’m so sorry Osob. You caught it early…that’s a blessing, and YES…you have each other.
Keeping you in my thoughts and prayers. It’s never easy to be a parent, especially to a child with a serious chronic condition. As you know already, it’s day by day, and at times moment by moment.
Love and baskets of hugs…linda
first off BREATHE. I am 31 my daughter is 5 she was diagnosed at 3. Im a single parent her dad isnt around at all. I have grandparents and they are 86 and 88 so they cant help much. I have an uncle and his wife but my daughter barely goes over there. Its not going to be easy but research research research. Thats what i did i knew nothing about type 1. Set a routine that can help in some way . Trust me everything will calm down but please research its made my and my daughter life easier
To Halvdan,
Great advice and you are quite right about becoming your child’s pancreas. This is exactly what it’s like with a very young child with Type 1.
Thank you
This is a challenge, Osob and you are right to come here for support. Once she gets to school age,I believe that school nurses are far better educated about Type 1 than they used to be. Right now, you need some “respite” care and wonder if your physician’s office could advise you about qualified people .
