Diabetes: It’s Our Thing Now
As a regular reader of A Mom in Red High Heels you may have noticed the posts stopped updating on Wednesday. On Wednesday, February 3, 2010, our lives changed forever. My five-year-old daughter was diagnosed with Type 1 Diabetes. Her sweet little body no longer produces insulin on it’s own and she will be insulin dependent for the rest of her life, or until they find a cure.
If you follow me on Facebook or Twitter, you have seen my updates as my family has begun a new journey in learning exactly what Type 1 Diabetes is, how to treat her, what to feed her and when. For this generally unorganized mind, it has been extremely overwhelming to learn how I will now be living by charts, carb counts, blood sugar levels and doing all things possible to keep her stable and healthy. We stayed 3 nights in the hospital getting her levels stable while doing classes with an diabetic educator and dietitian. My husband and I practiced giving shots on each other (wish I had a camera to capture that huge grin on my daughter’s face during the practice time!), we practiced carb counting and learning what to do if her blood sugar levels go too high or too low. My mind is swirling with information. My stomach is in knots every time we check her levels. My thoughts wander to, “what can she eat today?”. Tonight is our first night home.
No mother wants to hear that her child has a life-long disease but as my friend, who just had a health scare in her own daughter’s life this past year, simply stated, “It’s her thing”. It’s our thing. Diabetes is our “thing” now. There is no wishing, no wondering how and why. It is what it is and we move on, learning and living the best we can. I know it will get easier, more routine and somehow just become a natural part of our days. I also know that there will be days I cry, we cry- together. But in the midst of it all, I felt more love and support from friends, readers, strangers than any other time in my life. With that kind of support, how can we not make it to tomorrow?
I just want to send my many thanks out to everyone who prayed, sent best wishes, tips and even offered to connect me with some great resources and people who have lived the experience themselves. I’m honored that you have my family in your thoughts and prayers and am thanking God for each and everyone of you. Thank you!
Today I feel inadequate to share any information about diabetes (I’m still reading the manual given to us at the hospital!) but as I learn valuable information, I will share. With Type 1 Diabetes increasing in youth in the USA, each year, more than 13,000 young people are diagnosed with it, I think it’s a topic that needs discussion, awareness and fundraising, as I understand a cure is close.
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I know this is going to be quite an adjustment for your family because diabetes happens to be a tough disease to manage but a lot of people do it and there is a lot of information available.
Making choices for your family is important but I would suggest reaching out to other diabetic parents online and perusing online communities and the JDRF has great resources as well.
I would say good luck in this journey you are embarking on and welcome to the club.
Ronald Gregory
Love to you and your family.
Here for you…whatever you need. With the Lord’s help…you will make it through. I have total faith in Him, in you and in our little Tana.
love you,
Christine
I found this post through my google alerts. My daughter was dx’d at age 6 in March 2008, I know only too well how you are feeling right now. I won’t say it will get better (no one wants to hear that when it feels like your world has crashed around you)… but the numbness does subside and you will develop your new normal and learn to live your lives with it and not around it.
I do want to share with you my sanity saver. We are a military family living in a small town. It was especially hard being so far away from family and friends… it was honestly the first time I hated the military, but then I discovered this group, six months into our dx http://www.type1parents.org/ there is a wealth of information and laughter to share with these people. I invite you to come poke around and ask any questions you need, we’ve all been there and our policy is that no question is a dumb question, so please ask away when you need to do so. I just wish I had found them sooner.
I’m so sorry you had to join this club, my heart aches for you all, but please know that you are not alone and there are those of us out there who “get it” and we are walking along side you in this battle, willing and ready to listen.
Dearest Tammy and Family,
I wish you only the very best in the changes that have entered into your lives and that the love and support you recieve will give you the strength to prevail..
All our love,
Lebec and family
Hi Tammy,
No, you’re thing is being a great mother who does what she has to do for her family. You are an inspiration to so many women out there. Now, you have the opportunity to share this as well. Your platform will allow you to spread the word about this disease to millions. But don’t worry about that right now; you just be mommy.
I will do some research and post about what I learn. After all, health and wellness is my thing! As you said to me when we first met.
Love,
Kellie
Thinking you of you and your family. I missed the FB updates and tweets or I would’ve chimed in earlier with my prayers. Here to help if there’s any way I can!
Thanks so much for the supportive words everyone! xoxox!
Andrea, thank you for the link and encouragement. I will check out the site, for sure!! I totally agree with you that over the past 4 days, I’ve actually gotten mad when people tell me “it’s a totally controllable disease” or “at least it’s something you can manage”…Yes, it is but in the pain and frustrations of the moment, all I really want to hear is, “We love and support you and are here to help”. Thanks for understanding!
I can certainly understand your feelings, at almost 2 years later it still stings, especially when asked by a PA (while taking my child in for tamiflu for “suspected” h1n1) if her diabetes was controlled… I told her that she was a growing child and that, in diabetes, there is no such thing as control, we manage it as best we can.
A common misunderstanding for newbies (myself included, as I’m standing in the easter candy aisle the Friday before Easter after we left the hospital having my own little breakdown reading the labels on what to put in her basket) was that you have to change your way of eating, not so, the only difference is that you have to match the carbs up with insulin. Of course, we did make a few changes… diet sodas, sugar free jam and sugar free syrup (we like log cabin or eggo best), we always ate sugarfree gum. All the other sugar free stuff *ick* Something else that helps us is to carb factor… we’re not all gung-ho like a lot of people I chat with, but we do find it so much easier to weigh certain things (milk, fruit, etc)
I hope you can access my email via the comments, if you need anything, just send me a note.
Much love to you, your attitude is great and will carry you and your family through. As a diabetic I will say that as common as the advice not to change your eating habits is given, it is best to modify. Insulin damage is built up over time. Diabetes exists because some function is broken. Matching insulin is like a band-aid, a needed band-aid you are grateful for, but if you do not lower carbs and choose sugars with slower spikes it is all for naught. At some point way down the line the insulin will not be able to keep up with your eating. You will be able to eat pretty normally though, that is very true. It is a harder road at first with Type 1 and a child, but 5 is a perfect age to instill good nutrition choices which will help. Your attitude is amazing – you and your family can do this.
Anon:
You do not specify if you live with Type 1 or Type 2 diabetes (but, reading between the lines, I am guessing type 2). Please know that the ONLY difference for a child with type 1 and a child without type 1 diabetes is the no longer functioning pancreas. Insulin is not a bandaid, it is life support. And just because a type 1 person has an alternate way of recieving their insulin does not mean that they are not a child first.
Low carb diets do not work for children with type 1. Carbs are necessary for proper and healthy growth.
Yes, different carbs absorb at different rates. But it is not about living in depreivation. As is true with someone without diabetes, it is about everything in moderation and balance. They can eat anything a non-diabetic can eat, it just needs to be counted and dosed for accordingly. There is just a lot more thinking involved.
Most important to remember, “child first, diabetes second”. Diabetes cannot be allowed to rule your life, it has to be incorporated into it.
I am so very sorry to hear about your daughter’s diagnosis. I’ve included my blog about living with T1. My sweet 6 year old boy has been living with it for 2.5 years. Please email me if you want to ‘talk.’ Read the blog too, it is really helpful for people new to our world.
Good luck,
Leslie
I am sorry for another post but I could not let this go by without comment:
Insulin damage is built up over time.
Insulin is a hormone. The damage comes from not enough insulin, the damage comes from long term levels of high blood sugar.
~*~
Adding a couple more resources:
Think Like a Pancreas by Gary Scheiner
T1Demystified: http://www.type1demystified.org/
a blog by written by my friend. She eloquently puts into words the thoughts and feelings of many parents.
SixUntilMe: http://sixuntilme.com/
I read this blog also, Kerri shares herself, thoughts, feelings, frustrations with such candidness and humour. I read her because it allows me a glimpse inside my daughter’s head… and it reminds me that it’s going to be ok.
~*~
There is going to be a lot of unsolicited advice thrown upon you… mine included.
I should have included my blog in my comment in case you don’t get it at registration. http://www.type1demystified.org
Leslie
To jump into the conversation, as new parents to this disease, our first goal is of course, our daughters long term health. As we investigate and learn more about the diet, we want to be as natural as possible, skipping the “sugar substitutes” when possible.
I don’t see how giving her “sugar-free”, which is basically chemicals, is a good option. A lot of sugar-free options are high in sugar alcohol, which is hard on her digestive system. We aim to give her as many whole foods as possible, not processed foods, because that’s actually how EVERYONE should eat for optimal health.
Yes, carbs are super important, especially for a growing child. But quality carbs, low sugar cereal, whole grain, bread, brown rice instead of white are the carbs of choice for our entire family.
Any great cook book referrals would be appreciated. I’m sure I can find them online, just have not gotten that far yet
She especially enjoys baking so I’d love to find some great recipes for her to enjoy.
Thanks for the conversation and references everyone! Keep them coming.
Hi Tammy,
Good for you for trying to eat healthy, that’s the way to go in my opinion. I cook dinner every night, bake homemade goods and all that. Sparkspeople.com helps with calculating carbs in homemade stuff. You put ingredients in the recipe calculator and there you go. I don’t deny my son anything, but this is because I know he is eating well most of the time. He eats the same way as his sister without D. Treats are treats, food is food. Keep it healthy and you will do great!
Leslie
If anything I’ve learned in all of this, it is that there is no one right way to do things. Just like we all have different parenting skills that work for us as an individual family; the same goes with diabetes. It is so individualized and during our stay at diagnosis, the most frustrating part to me what that there were no concrete answers. I still struggle with that at times, I hate the gray areas.
We choose certain sugar free items, as we feel it is best for her then the alternative. If we go to McDonalds, we’d rather her have diet soda vs. the high amount of empty carbs in a regular soda. It’s what works for us and you’ll find your own groove as well.
I just didn’t want you to think that you have to change your entire eating routine to accommodate diabetes. That’s great if that’s something you want to do as a family anyways. I was more aware of what we ate and made it a priority to become more balanced in our meals. Something I’ve learned from my friends at the website in my first comment is to ask myself if I were to take diabetes out of the picture, would I still think that way. I apply it to so many decisions… like when she first wanted to spend the night at a friend’s house… I was terrified and I wanted to say no… But I let her and she did great. She continues to amaze me all the time.
I’m sorry to learn of your daughter’s diagnosis, but thank you so much for addressing it in your blog with such positivity and strength.
Been following your updates on twitter, Tammy. Praying for you…and your brave little girl.
Oh wow. I’m so sorry to hear this Tammy. Much love and prayers for you and your family.
Hi, Tammy,
A quick note to tell you that along with your friends and family, strangers (such as myself) are wishing you all the best. Positive thoughts, love and light are being sent your way as you fight.