{Meet a D-Mom} Leighann of D-Mom Blog (Me!)

by Leighann on January 4, 2010

D-Mom Blog Featured D-Mom
Getting a diagnosis of Type 1 diabetes in your child can be very isolating. I know that as we sat in the hospital room 200 miles from home I wrote a blog post about what was happening. I never hit publish.

On the one hand I wanted to reach out for support from my peers, but my “peers” in the online world at the time were not parents of diabetic children. I didn’t want sympathy in those first days, but I needed someone to say they had been there and that we would make it through.

On the other hand, blogging had always been my space where my children were anonymous. I grappled with whether it was my place to tell my daughter’s story.

After all, it is her story to tell.

It wasn’t until about three months later when we had settled into a rhythm of diabetes management and I felt like we were in control (as we’d ever be) that I sat down and wrote my first post about her diagnosis on my personal blog. That first narrative, Mother’s Intuition, resounded with many parents and I received countless words of encouragement as my online community told me how they, too, are affected by diabetes.

In the following months our story unfolded and I began reading blogs written by adults with Type 1 diabetes (Six Until Me, Diabetes Mine, Lemonade Life). In the comments of these well-read and well-written blogs I began finding other parents dealing with diabetes as we are. Soon I formed a network of moms who I could e-mail or Tweet and who would respond with answers, any time of the day or night.

I want to introduce you to these parents who are champions for their kids. They are nurses, mathematicians, counselors, cooks…and I haven’t even begun describing their paid jobs!

Each Monday I hope to highlight a parent of a diabetic child, a parent who has put pen to paper (or fingers to keyboard) to share, vent, learn, and laugh on this journey.

I thought it only fair that I first answer the questions that I will be asking of others. So this week you get me!

If you would like to be a featured parent writer on “Meet a D-Mom Monday,” please let me know.

Grab a cup of Diet Swiss Miss Hot Cocoa (only 4 grams of carbs, you know) and get to know me.

I’d like to introduce you to Leighann of D-Mom Blog (me).

Tell me something about your child.

Q is one of the most outgoing people I have ever met. A teacher recently said to me, “Q has never met a stranger.” It’s true; she makes friends everywhere she goes.

She’s very theatrical, taking center stage in our living room each night, where she sings, dances, and acts. She has been taking dance classes since the age of two, including ballet, jazz, tap, and hip hop. Right now she’s in her second year of musical theater which suits her well.

She’s constantly at the table working on projects: drawing, painting, writing, cutting. She’s a creative child.

She is the proud big sister to her brother R.

How old was your child when diagnosed?

She was three, just a few months shy of turning four.

How was your child diagnosed?

Q had been sick with a typical virus and just never seemed to completely rebound. When she returned to school everyone commented that she had a growth spurt while she was out. In reflection she had lost weight: 5% of her body weight!

She was thirsty all the time, frequently getting out of bed and asking for milk, something she had never done before. If we denied her a drink, she began crying.

I thought she was “off.” She just wasn’t herself. She was moody over little things. Diabetes was in the back of my mind, but I kept thinking she would rebound.

And then she drank an entire half gallon of milk in one day. I called the pediatrician who said no child should drink that much milk in a day. I dropped off a urine sample the next morning and by that next evening we were in St. Louis being treated.

My post Mother’s Intuition tells the whole story.

How has your child’s life changed since diagnosis?

I wish I could say that her life is better because of it. When you are in the thick of it, it’s hard to see positive outcomes.

I could list all the negatives, each and every one of them.

I can say that diabetes has not taken away her positive outlook, nor dampened her outgoing personality.

What amazes me again and again is how she can take a negative, like our 400 mile round trips to the endocrinologist, and turn it into a fun adventure. The long trips suck, but we try to fit in some fun when we go.

How has your family’s life changed since diagnosis?

I have seen a counselor…need I say more? I think all marriages/families are hectic and busy, but our daughter’s diagnosis just added another stress level. Diabetes is constant and in-your-face and you never get a vacation from it.

A diagnosis like diabetes can be considered a traumatic life event and you need to go through the stages of grieving and loss. I think I have skipped over a few of the stages!

How has connecting online helped you cope with diabetes? What online resources do you use?

It took me a long time to open up and talk about it to others. I tend not to talk about the details in my daily life, but writing online has helped me to get some of it out.

Right away I found some blogs written by PWD’s. It was good to see young adults who seemed to have themselves together. It made me realize that my daughter can grow up and have a normal life.

It has been good to write about our experience, but connecting with other D-Moms on blogs and Twitter in the last six months has helped me tremendously. When we were researching pumps, I turned to these moms for real answers and good advice, rather than relying on slick brochures from the companies.

It’s good just to have people who know what you are facing and who can sympathize with you.

How do you manage diabetes?

We did multiple daily injections for the first year and a half: three mealtime injections of fast-acting insulin, plus long-lasting insulin at bedtime. The strict schedule was grueling and inflexible.

This fall we switched to the OmniPod insulin pump. I am amazed at how much less stuff we have to carry around now.

We routinely test her blood sugars 4-6 times a day. I hear of other parents who check 8-10 times, including 2 am, and I realize how frazzled we would be if we checked that often. Of course we check more frequently when needed.

We haven’t started thinking about a continuous glucose monitor (CGM) yet, and I am not sure that we will any time soon. If it becomes integrated with our current pump, then we will definitely look into it.

What would you tell parents of a newly diagnosed child?

I would tell parents that your child can and will thrive.

I would also say “You can do this.” I was sort of amazed that after a few days and a few classes that the doctors would entrust us with our daughter’s care. When we were taught about hypoglycemia it really hit me hard that my daughter could have seizures from extreme hypoglycemia and it was my job to get her through it.

It was overwhelming leaving the hospital and beginning our 200 mile drive home to start the rest of her life: a life with diabetes.

But you become an instant expert and you figure it out.

Though she was very compliant by the end of our hospital stay, she has had moments that she doesn’t want anything to do with injections or a pod change. Some of the best advice that the nurses gave is to give choices when there is a choice (which finger to check, what kind of bandage, where to get the injection), but that getting insulin is not a choice. It must be done.

Rufus got us through a rough patch. Sticker charts help. We currently are working toward 30 pod changes, at the end of which she’ll get some new art supplies.

What do you know now that you wish you had known at diagnosis?

I wish I had allowed myself to grieve. I went into “mom mode” and took care of business. I felt like I had to be strong for her. I think it took a long time for it to sink in. And it still hits me hard now and then.

At the time we only knew one other diabetic child. She lights up when she meets other diabetic children. I wish we had found more peers for her right away.

If you are brand new to D-Mom Blog, please read my Welcome, published on January 1, 2010, to learn more of what this website offers.

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{ 12 comments… read them below or add one }

1 Pam January 3, 2010 at 9:09 pm

Hi Leighann! I heard about your site from Kelly Kunik (who I went to high school with, lost touch, then found her blog after my daughter was dx’d). Grace (dx 1/26/09) is 8 and just went on the pump in Sept. Things here are up and down. We had a lot of trouble regulating her BG over the holidays, so I’m pretty happy they’re over. I’ve put your blog on my fav list, and look forward to sharing, learning, comiserating, and supporting!

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2 Rachel January 4, 2010 at 6:19 am

You know reading your post brought back all those emotions when Tristan was diagnosed. I could so relate to most of your answers! 🙂 I can’t wait to read about other moms! Great work! 🙂

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3 Bernard Farrell January 4, 2010 at 8:11 am

Leighann, as I don’t have a child with diabetes, I can’t relate to that experience. When my kids are sick I know how terrible it makes me feel, I can barely imagine what it means when the diagnosis is diabetes.

I do know. With the loving help of your parents, diabetes is annoying/challenging/difficult but it becomes part of life. Here I am 37 years later and doing fine for the most part. I think when your daughter is in her 40s, she’ll be enjoying life to the full.

If you’ve not come across it, Sandra’s blog A Shot in the Dark might be helpful.

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4 Cara January 4, 2010 at 11:05 am

I’m one of the kids that grew up. 🙂 I love the fact that others (especially the parents of newly diagnosed kids) can see that we have grown up, and even though diabetes is still at the center of our lives, we are healthy, for the most part, we have careers, hobbies, and talents. I think it gives comfort to those who are at a very scary time in their lives.
Plus, if those of us who lived through the “diabetes dark ages” are still doing okay, think about how much better the kids will be who are diagnosed now will be. They have knowledge and technology that we couldn’t even dream about! 🙂

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5 Tracy Shannon January 4, 2010 at 2:50 pm

great post! I’m not one that has a blog or anything, (I’m not creative and have a very hard time writing my words down), your story is very much the same as ours, Emily was diagnosed on March 15th, 2009 and was about to turn 4 in April. You have a great gift and ability in doing this blog and I very much appreciate it!
Tracy

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6 Ayden's Mom January 4, 2010 at 3:06 pm

Hi Leighann,
My son was diagnosed in August of 2008 at 18 months of age. One of the things I have learned over the last year and a bit is how diabetes connects so many moms from so many places around the world. We all suffer through the hard times, wish we could take the pain away or at least feel it, and are so proud of our children that we just about burst talking about how brave they are. I understand your story inside and out, but one point you made hit me hard. We test Ayden 8 to 10 times a day and it is starting to feel like a never ending cycle. on a monthly basis we are adding a new testing time to our regime and my worries about his numbers increase exponetially to the amount of times we test. I think I’ll take a lesson away from your post and try to scale back a bit to see if that helps. Thank you!!!

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7 Mike LeBlanc January 4, 2010 at 7:08 pm

Hi Leighann,

Thanks for sharing. It does make us feel less alone when you read of other families that are going through the same thing. I’m not sure why, but there is comfort in that.

If you’re okay with profiling D-Dad’s, I’d be happy to be featured on your blog.

Take Care
Mike (Adele’s dad)

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8 Jennifer January 5, 2010 at 11:34 am

You’ve done an amazing job of putting together this resource for D-families. Q is lucky to have you as her advocate! You should be proud of stepping out of your comfort zone to open yourself up and share with the community. Congrats Leighann!

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9 Lori January 6, 2010 at 9:37 am

Wow! I felt like I was reading our story. Our daughter Grace is much like yours. She is so wonderfully positive. She was diagnosed at age 2, just a month before she turned 3. We too have moved to a pump, and I soooo understood the relief of the less stuff to carry around.

Grace is on a CGM and if you have any questions, I would be happy to answer. We love it, couldn’t live without it.

Thanks for starting this up. While my husband is diabetic as well as his two sisters, being the mom of a little girl who is diabetic is still a very different experience, often a lonely one. I’ve grieved for quite awhile over what I felt she lost when she was diagnosed. But this fall, I decided a new attitude was needed, I needed to step up and meet this challenge with the grace that my daughter has.

I know I’ll still have moments…when I wish things were different, or how I thought her life might be (not quite so challenging)…or when she wishes she could be like her brother (who is not diabetic). But as you know, we can only take one day at a time.

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10 Kerri. January 6, 2010 at 8:42 pm

I’m honored by the shout-out, and I am so glad to see that there’s a blog for the parents of kids with diabetes. I know that my mom would have benefited tremendously by connecting with other CWD moms, but the resources just didn’t exist 23 years ago. (She does lurk on blogs now, though – and she also says hi!)

Looking forward to reading your posts. 🙂

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11 leighann January 7, 2010 at 4:58 pm

I actually want to thank YOU. You are so confident & put together and in those early months when I read your blog, it really made me realize that my daughter can have a bright future despite the diabetes.

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12 sysy January 13, 2011 at 8:57 am

I don’t doubt that parents of children with diabetes must sometimes get hit hard by the realization of what their children are living with. It’s nothing short of natural and to be expected. I’m amazed by how strong you are and as a person with diabetes diagnosed as an 11 year old child, I KNOW that the way you handle your child’s diabetes is going to help her SO MUCH to get through all the childhood and teenage years that await her. You seem tough yet sensible, which is important. I’m sure you inspire many other parents, including me.

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