Why not me?

I do not have diabetes. If given the choice, I would gladly have it rather than my almost-three year old. I would rather shoulder the burden of testing myself and injecting myself and dealing with any complications myself than thinking about and watching my little angel grow up with all the challenges that I think she will face. We are only 2 weeks into this journey and the more I read, the more vigilant I feel that I will need to be and the more I know that this can and probably will be all-consuming for me. It’s not that my “job description” just got harder that is getting to me today. It’s that HER job description got harder. I know deep down that everything happens for a reason and God has never brought anything into my life that didn’t turn out for our good. But some days it’s just a little hard to accept the long road ahead of us. I know I need to just focus on what’s ahead of me today because if I think about the future, this Mommy may fall apart a little. And that’s kinda not an option. I just wish it was me instead of her.

Hang in there, mama! I know at first it all seems so overwhelming, but it sounds like you are doing everything you can to give your daughter a GREAT life and she will benefit so much from that. Diabetes is so all-consuming, but don’t forget to take time to yourself, even if it is just a few minutes a night after she goes to bed, to decompress. And don’t forget as well that she may have diabetes, but your little girl is a child first and foremost - learn to make dealing with diabetes the new normal in her life and allow her to go on and do all the things little girls do. The best gift you can give her as she gets older is to teach her to manage her diabetes herself so it never slows her down.

We are here for you, anytime you need support! You are only two weeks in - you are doing GREAT!

Hello, Cobi, I’m sure everything seems overwhelming right now. You have come to the right place, and are one of our family now. We help and support each other here and give our love, prayers and positive thoughts. There is a pretty large group for parents of type 1 kids - click here - (you may have already discovered them) I’m sure you’ll learn a lot from them and others here. I’ve had type1 for 41 years and the past year that I’ve been on TuD has been so helpful for me. Please keep in touch.

Cobi-

I am going to keep you and your family in my prayers. I can’t imagine my 3 year old with diabetes. You’ve joined a great community and there are hundred’s of members who’s lived with diabetes since they were tots. Everyday will be a challange but like you said he’ll neve put more on you than you can bare. If you ever need help or have a question post or blog and someone will answer. It’ll get better:)

Cherise

Thanks for the supportive replies and prayers, Ladies. We had a busy day today and I was kind of worried that it wouldn’t go well. We got through it really well, though. We’re learning to adjust so that she doesn’t miss out on anything. She kicked booty in her karate class today! LOL One thing that keeps me going is remembering how she was the week before she was diagnosed. I’m just so grateful to have my active, sassy little girl back! I don’t think she’d LET me hold her back anyway so it’s good that I’m on board with letting her do all the things other little girls get to do!

I definitely will check out the parents’ group…I’m needing some moms that understand what the deal is right now since none of my friend’s kids have diabetes. They’re all very nice and supportive but they just don’t know what it’s like.

Thanks again!
Cobi

Dearest mommy:

You are a dear. You love your daugher with all your heart and probably even blame yourself somewhat that your daughter is ill. Don’t. God allowed it, you didn’t cause it. There are no words available to ease the torture of the soul that would come from my mouth. The only source I could think of is the Bible. I am not married now, I never had children, but my heart aches for you and your little one.

One thing your daughter has that I never had, is someone that can take more control at an early age. By what you do and don’t do, she will gather knowledge and make life habits. Get all the education you can so that you can pass that on to her. I wish I had someone who could prepare all my meals and watch over me. Your daughter is very fortunate!

Keep the faith and keep contact with us.

Lois La Rose
Milwaukee, WI

Hi Cobi - sorry you have to be here - but glad that you found us! This is a wonderful community and wealth of information. Those first few days, weeks even months can seem so overwhelming and mind-numbing! I remember - my dd was dx July 22, 2008. The weeks and months following were somewhat of a blur. But I blogged and tried to write a lot down and joined every community on-line that I could find. There was nothing local for us here. One that I might suggest to also check out - is www.childrenwithdiabetes.com and go to the forum boards.

As much as I did not want to hear it - I feel so fortunate now that my daughter has a condition that IS manageable - I just wish the management was not so time-consuming and didn’t require as much diligence! I have learned so much from my little girl and so much about diabetes over the past 7 months. I have seen how little it interferes with her being a little girl. (bc I try to make it the least interesting thing about her) I actually think it is on my mind more than hers most of the time. Its our normal!

Good luck and ((hugs)) - post often, ask lots of questions, check out the book - Using Insulin - by John Walsh.

We’ve all been where you are . . .You doing a FANTASTIC job!

Vicki

Thanks, Vicki…

That actually is my goal: to have it be on my mind more than it is hers. I can’t imagine that there will be a time when it won’t have to be on MY mind at least but, while she’s little and not managing it on her own, I’d like her to just be able to BE. We’ve got her birthday and 3 of her friend’s birthdays this month complete with class parties (we go to a Mommy and Me class) and private birthday parties so I’m going to get a crash course in how to let her do whatever everybody else is doing but safely for her! Luckily she’s honeymooning so it’s not that hard to manage her numbers right now. I’m grateful for that!

Cobi

Cobi, There is a member here, Lorraine, who has a darling little boy, Caleb, with t1. She has made some excellent videos of Caleb testing his blood, using his pod, and one I really found inspirational, getting his first blood draw.

This didn’t happen for a reason- there is no good reason for your child to suffer or for you to suffer even more through observing her struggle. It is just an unfortunate but all too common consequence of how our bodies work, or fail to work, as the case here may be.

There is nothing good about getting Type 1 diabetes. You certainly can make the most out of it, and use it to forge relationships and self-discipline, but non-diabetics can do that too without worrying about their blood sugar.

You already have the perfect and necessary “one day at a time” attitude. It will be difficult to maintain that perspective over the long-term, and dealing with Type 1 does not get easier over time. But at least you are already engaging the mindset that works best, so you know what to fall back on when things get rough. And you have come to the right place for community support- this is hands-down the best diabetes-focused social networking site out there.

I feel I would be doing you a disservice if I did not mention that there are quite a few clinical trials for “just diagnosed” Type 1 diabetics that may be able to improve your child’s health. Many of them require that the child be diagnosed within the last 3-6 months, so you may need to move quickly.

Good luck! I, like probably everyone here, am ready to support you and your child in any way possible through this medium.

Given the challenge that you are facing, I think that you are off to a great start!

You will find your routine. Diabetes is always time-consuming, but with experiences our habits seem less overbearing (and you can actually live a normal life too!!). Really.

When I was diagnosed, I had a dream and plan to move to Eastern Europe. After the diagnosis, I was told (by some very loving friends and family) that I should throw that dream out the window. I didn’t. And I’m sure glad that I didn’t. Five years later, I’m still living here. Now with my Hungarian husband. Diabetes always meant extra planning and being prepared. But it does not mean that you need to let go of your dreams.

Your daughter will dream big dreams. Then she will live them. Someday she will look back on all the things that you do for her now and feel what an amazing love that is!

Feel free to come here to share on the frustrating days (they will come) and at moments of joy (they will too…). Because we know that good blood sugars are a reason to dance; and other times you just need to vent!! We’re here!

Hello Cobi:

Diabetes is a tough disease, but moms and kids are tougher. I know you can do it.

I know I would flip if my sons had the disease, so I have spnet a long time thinking about it. I do have some suggestions, first get into some trials. Anything you can do in the trails will give you a source of accomplishing things. That is a survival tactic for both of you.

Second and this is my typical thing to say consider a therapist for you. That will give your daughter a chance to see it is ok to talk to others about your feelings. When she is a teenager she will need that talk therapy.

Finally, easier said than done, Let her take as much responsibility as possible. Kids who are hounded and not given per mission to fail tend ot grow up to be adults who do fail. sometimes you have to suck up the obvious in favor of letting her grow. I knwo that is an awful scary thought right now.

Keep going youa re doing a wonderful job. In admitting you are ill rpepared, you have taken the first step to being prepared.

Good Luck Cobi

Hi Cobi,
I have just read all the responses you have gotten and am so proud to be a part of our family. I am so glad you found us. You are doing a wonderful job of handling things. You have all your priorities straight. You may not think you have it all down right but you do. I cannot imagine what goes on it your mind when you put her down for the night. But I am with you. We all are. When you need those arms around you just think of us. When you need those encouraging words come back and read again what is here When you are scared come back again. There is always someone awake no matter what time it is anywhere. We ALWAYS give each other loving support no matter what. You can ALWAYS count on us. We are here for you Cobi. And we will help you walk through anything. Big, warm. loving hugs to you., peace and prayers to go with you, and a strong loving family to always be there for you. That is what we are and now you and your daughter are a part of us too.
My best to you.

Thank you all for the support! I really feel how strong this community is and I am glad to have found you…

I’m off to get The Tot cleaned up for bed after her “before bed time snack”…she is loving those! We’re still figuring out her insulin regimen so she’s been a little low at bed time and even a little low in the a.m. after bed time snack. :frowning:

Anywhooo…hope you all have a good night!
Cobi

Hang in there! It’s very scary for a mom. My sister was diagnosed with Diabetes 3 years before me and I would cry, saying I wish I could have it in her place, too. Later on, when I was diagnosed, I remember the worst part was telling my mom who would be heartbroken. I still remember the exact date, what I ate that morning, and my phone call (THAT GOT DISCONNECTED IN THE MIDDLE!) to my mom. She is much better now as my sister and I have learned to deal with it. As your child gets older, she’ll learn, too. Just remember, she has something that she can live with. Yes it’s terrible, but new research and products are constantly coming out. She’ll be okay!

Thanks, Kim. Intellectually, I know that she will live a full and good life. Emotionally it’s hard, as a mother, to deal with. Tonight she said “Want Mommy to tell you why you need a needle.” (She calls herself “you”). I explained as best I could and she said “No needle”. I wanted to cry. I know it’s just temporary and her understanding will increase along with her ability to take care of herself. And I really do know that she will be okay…I’m just still adjusting. Most days I’m fine…and then there are the other days.

Thanks again for the support and encouragement!

My mom has told me this countless times before. I don’t think the feeling ever goes away, since she’s been saying it since I was 4 (going on 16 years with the disease next month). It’s tough, both as a parent and for your little girl. No one should tell you different. But even though it’s tough, you as a mom feeling this way is part of what will get her through the rest of her lifetime with diabetes. Let her know as she grows up (and grows with diabetes) that she is not alone, that you are helping with the burden, that you are right there alongside her. Let her take over when she’s READY, not when everyone is pushing her. And always, always take it one day at a time. You can’t be perfect. She won’t be perfect in her management either. So give each other room to breathe, a little bit of slack, and open arms. You’ll both be fine!

By the way, I’m so much closer to my mom and so much more grateful for everything she does for me because of diabetes. If I wasn’t diabetic, there would be so many things I’d miss, including an amazingly close relationship with my mom.

Nice reply! I think you just made a lot of parents of children with diabetes feel better about what life holds for them and their kids.

Thanks for the encouragement, Nicole! My daughter already says “Want to do it by yourself” when I go to test her, not that I’m ready for her to. But I am committed to letting her do as much as is appropriate when she is ready. It’ll be a test of my control-freakishness (makin’ up words today) but it’s gotta happen sometime!

Cobi

When I originally posted this, it really WAS that her life was going to be harder than if she didn’t have diabetes that was getting to me. Today it is that my life will be harder that is getting to me. That I will worry more about her health and socialization than if she didn’t have diabetes. I feel like we are both restricted and confined and put in a box. And that is partly because I don’t know enough yet how to take care of her so that she could have a Valentine’s cookie at the play date this morning and instead had to just drink her Crystal Light that I don’t like because it has all kinds of artificial crap in it but what the hell else am I going to let her have for a “treat” since the play date was not at her freaking snack time? (How’s that for a monster run-on sentence?) Do I avoid fun things just because she won’t be able to eat the stuff they have until we are more acclimated? And all the well-meaning friends whose kids don’t have diabetes, after the crisis is over and you are home from the hospital for a while, go back to their lives and don’t want to hear about how you are “adjusting”. Or not adjusting.

I apologize for the rant but that’s just where I am today. Today I feel a complete loss of freedom for me and for her. We are ruled by time and numbers and restriction until I know more. And I HATE that she is “the kid with diabetes”. I don’t WANT her to be thought of that way. But I don’t yet know how for that not to happen.

Ah, well, thanks for reading. Time to “suck it up”, wash my face and get on with my day. I’m glad I can hold out until she’s napping or in bed to have my break-downs…she doesn’t need to see Mommy crying.