Parents Talking Type 1: Shannon Winston

Diabetes is a disease that affects the whole family, especially when a child is diagnosed. Parents of children diagnosed with diabetes face overwhelming, and sometimes frightening, questions like: How can I strike the balance between caring and hovering? Will my child be able to eat sweets again? How will I ever be able to let him go out on his own?

All week long, we will present stories from parents of children with diabetes, illustrating the emotions, challenges and successes each family faced upon diagnosis.

First, we’ll hear from Shannon, a mother whose courageous daughter was diagnosed with type 1 diabetes in 2011.

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Name: Shannon Winston, mother of Naima, age 4, diagnosed at age 3

Location: Baltimore, Md.

I still remember it like it was yesterday. I pinch myself, and the pain reminds me that I’m not dreaming. This is real life. My daughter has type 1 diabetes. She was diagnosed in the late summer of 2011 at age three.

It all began with Naima having accidents and having to use the restroom frequently with extreme thirst later on. I knew something was wrong. A doctor’s visit revealed something far worse than I expected: type 1 diabetes.

Diabetes has affected our family tremendously since her diagnosis. No longer can we live life carefree and in the moment. Every activity has to be meticulously planned for, to take account for meal times and injections. Eating out at restaurants was very hard in the beginning because you can’t always find carbohydrate info on websites. Now, I can pretty much look at a serving of food and estimate the carbs in it and the insulin needed for it.

Birthday parties are a pain. Naima and I have come to an agreement that she can have a cake or cupcake, but she always has to remove the frosting. It was either that or not have it at all. In the beginning, we fought about it, but now I don’t even have to tell her—she knows to take it off. Sleepovers are nonexistent because no one feels comfortable about having to stick someone else’s child with a needle. Babysitters are pretty much out the window as well. There are only three people in my life who are capable of watching her: my mom, my sister and my boyfriend.

Daycare was also an issue. I had to remove her from the center she was in when she was diagnosed because it was too big and she wasn’t able to get the attention she needed. They also ate a lot of junk food for snacks, and she felt like an outcast because she could only snack on veggies and dip. She is now at a home-based daycare where all meals are vegan and all snacks consist of fruit or veggies, so she isn’t singled out.

Naima’s diabetes isn’t a big issue with her friends. They don’t see her as “different,”; they just know she has to take shots, and sometimes they like to watch and ask questions. She is very good at explaining what diabetes is and means. I’ve always been very candid with her about everything, so she understands what’s going on in her body.

I tried to find support groups when she was first diagnosed but there are none my area. It would be nice for Naima to have at least one friend with diabetes so she will know she isn’t alone. She did participate in the Step Out: Walk to Stop Diabetes last year to raise funds for the American Diabetes Association.

Since day one, Naima has handled her diagnosis better than I could have ever imagined. She never cries about the needles. The hardest part on her is not being able to eat what she wants and when she wants. Even healthy foods like fruit have to be reserved for meal times when she gets her insulin. She loves having low blood glucose because that means she can have a snack.

At her age, she doesn’t quite understand the finality of her condition. She thinks she is just sick and will get better and not have to always take her insulin. I understand this may never happen, but I believe in the power of prayer and supernatural healing, so I allow us to keep that glimmer of hope. Hope is a beautiful thing and I don’t want to kill it for Naima. Miracles happen every day.

Diabetes is a pain and an inconvenience, but I just want to say that through it all, we are blessed

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6 Responses to Parents Talking Type 1: Shannon Winston

  1. Lauren says:

    You sound like a terrific mother. Diabetes really just means that your child, with the love and support she is getting, will never be weak, she will be the strongest girl you will ever know. I’m 24 now and was diagnosed 20 years ago. Since most of us are diagnosed at such a young age, its all we ever really know. We do feel different as we get older but there is no greener side to compare it to, which I think is probably a good thing. My only advice to mothers out there taking care of children with diabetes is to make it a point that these kids should “want” to do well rather then they “have” to do well. I remember growing up feeling like I was always in trouble because I would skip checking my glucose, eat sugar, forget boluses, etc. But, I was addicted to sports, and I think staying active always kept me healthy. Not until a few years ago, during my college days, did I start feeling the effects of running high all the time… no serious complications but harder to do day to day activities because of lack of energy. I finally got rid of that childhood/teen mindset of “i have to do this, but i dont want to, i’m irresponsible” and switched to a new mindset of “i want to” for my own health and future. I know you probably worry yourself to sleep some nights, thinking about how your kids life will be different but I really think it was probably harder on parents than it is on the kid. We don’t know whats going on other than the fact that were some cool walking science experiment! Because of the great example you are setting now, the sooner she will be taking care of herself, giving herself her own shots at sleepovers.

  2. michelle crabill says:

    i was reading your post and it’s like i was reading my own story. i am from hagerstown, md and my daughter kayley was diagnosed when she was 3. she is now four and she’s been dealing with this better than me. she doesn’t mind having her fingers poked or her shot. it’s a constant battle when it comes to her diet cause she wants to eat what she wants and when she wants. we try to make her life as normal as possible. i know what you’re going through and how hard it is. hang in there.

  3. Shannon says:

    Thanks Lauren for your comment. I definitely do make or a point to explain I her why she needs to eat right so that she will be making good choices as she grows more autonomous rather than just making her. It’s definitely a fine line at this age. Honestly the funniest part is I didn’t let her eat a lot of junk before he was diagnosed. For us “dessert” was always fruit, or some homemade healthy sweet treat rather than store brought junk. When she are junk, 9 times outta 10 it was with someone else. I’m an herbalist with my hand heavily into nutrition so I always tried to make good decisions. It just became much more a necessity than a desire after the diagnosis.

    Michele: thank you. You hang in there as well. These babies are much stronger than us. They will continue to price their strength over the years. We were blessed with a burden. They will come out Stronger because of it!

    Feel free to read a more detailed account of her diagnosis here if you’d like:
    http://herbnvision.blogspot.com/2011/09/moment-that-changed-everything.html?m=1

  4. Geraldine says:

    You and your daughter are on the right path.
    It takes time to adjust to so many changes.
    It seems that you have established a very good dialogue with her. Communication and love between you will be the best guide to help you through all the adjustments. Challenges are big but with support and understanding of those who surround her, she will be successful handling her condition as she grows more mature.
    My daughter was 14 when she was diagnosed. Yours. despite being so young, seems to have already understood a whole lot!

    Love, peace and health to you and your family,
    Geraldine

  5. Danielle says:

    My son was diagnosed 3 months ago with Type 1 diabetes. He had just turned 2. It helps me to hear other peoples stories. I am a single mother, but I am very lucky to have my parents there to help me. Right now we are the only three that check him and give him his shots. I am currently teaching my 15 yr old niece how to check and draw the insulin. She is doing a great job.!! I have to look at the positive because it is manageable and some people have things much worse, but it is still hard. He also has a learning delay so he doesnt understand. He lets me check his blood and give him shots no problem. He just watches. He is not a sweet eater but loves his bread and pasta. I keep telling myself that he will know no other way of life and pray for a cure.
    Thank you

  6. evelyn wilburn says:

    i read your story and my heart goes out to u and your daughter my son was diagnoised 11/1/2012 he is 6yrs old and it a life changing situation for me also it scary,stressful and very important because it our childs life.im gonna do everything in my power to ride this out with my son god is a good god.no matter what we can get through this .keep faith,god bless.

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