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.
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