Another D Candle Day: How is a mom to let her child with Diabetes live her life?

December 6, 2011By 36 Comments

 

It is what we call here in D-world, another “Blue Candle Day.” If you are in the D-world, you know what that means. If you are one of my friends and readers who is not, let me explain: When a person with Type 1 passes away from a situation related to Type 1 diabetes, folks around the world change their FB profile pics to blue candles.

I don’t, only because my daughter and I communicate on FB constantly and I just don’t think she wants to stare that kind of thing down at this point in her life. Doesn’t mean my heart doesn’t break. Doesn’t mean I don’t care, and care deeply.

Today’s Blue Candle day comes from the sad and sudden death of a high school basketball player. According to news reports, he had a diabetes-related seizure and died. Didn’t say if it was in his sleep or while walking down the street. I don’t know the boy or his family.

But I do have friends whose children have died. One mom’s young adult daughter died of kidney failure as they flew home – across the Atlantic Ocean – for her to finally get a transplant. Her last words were, “Mommy: hold me.” And that D-Mom did – for the nine long hours of the flight she had to endure after her daughter passed away.

Another friend had to listen on the phone as EMT’s tried to save her teenaged son as she rushed home from work. I remember her telling me “I knew he was going. I could tell.”

There are other stories too.

So then, one might ask: why don’t I keep my daughter at home, in my sight and under my constant care? I mean, wouldn’t always being with them and never letting them have to deal with diabetes on their own avoid some dangerous situations?

Well, yeah it would. And I thought about that long and hard – actually for years – before dropping my daughter off at a college 500 miles away from home a year and a half ago.

I thought about having her commute to school. I thought about asking her to go to one of the gabillion great Boston schools so she’d at least be close to me and to her medical team. (And theoretically I could hide behind trees in the quad and pop out and yell “have you checked?” every few hours. Tee hee).  I thought about stopping time and just keeping her little and in my control.

But for some reason that line from “Shawshank Redemption” kept popping into my head: “It depends what you want to do. Do you wanna get busy living or get busy dying?”

Let me explain. For my daughter, going off to Washington DC for college has been a goal since, well, since just about forever. I think people in our town started calling her the Mayor when she was about three years old.  Everyone knows her amazing political experiences already. When we talked about schools, she’d look close, but her heart kept going back to DC. Whether my D-Mama heart liked it or not, her way of “getting busy living” was going to involve going far away. And being out of my control.

Lauren, second from left, getting busy living with some good friends.

I was lucky enough to have a really amazing new adult endo treating Lauren when that decision time came. Let me relive the conversation.

Me: Do you think it’s okay to send a person with her a1c far away to college?

Dr. Wonderful: Well, I was not aware they asked for a1c’s on applications. I knew they asked for SATs.

Me: Let me rephrase that. Do you think it’s okay to send a person with her low level of compliance far away to school?

Dr. Wonderful: Oh, I have a test I administer to see if that is the best choice. Would you like me to administer it now?

Me: (Gleeful!) Yes!

Dr. Wonderful: (Turning to my daughter and looking her in the eye): Do you want to go to George Mason University?

My daughter: Oh, yes, with all my heart.

Dr. Wonderful: (Addressing me again): I’ve completed the test. Would you like to hear the results?

 Point taken, and loved. Because he was right – we parents have to find a way to take a leap of faith and let our children grow into the people they want to become in the place they want to be. Even if it means not knowing how her blood sugar is on a regular basis, the most loving, compassionate and caring thing I could do as a mom was to let her live the life she dreamed of.

So, what if something happened? (And don’t think I don’t wonder that all the time). Would I feel guilty? Absolutely. Would I wish I’d made a different choice? Probably – but that would be out of pure, selfish mother love. Look – I miss my older daughter without diabetes being around all the time. But I have to let her live her life too. I have friends who have done way braver things to let their kids get busy living. One young woman with CF and diabetes has traveled the world — without her mom — and is living a rich and amazing life. Another mom of a cancer survivor daughter let her go way down to the gulf coast for college — and had to hang tight and be supportive even when it all didn’t go well. They put aside their natural urge to keep their babies close and let their young girls live.

So my daughter is away, getting busy living. We talk all the time, and she’s really good about letting me know how she is doing (Even calling me to discuss how to handle a hangover with diabetes on board. Honesty: I’m all about it). She’s met a really nice guy whom she is dating now (and whom she told me could tell if her blood sugar his high by her voice so clearly he’s met Linda Blair Lauren once or twice lol). She did an internship this semester in government advocacy. She’s in a sorority. She has a million friends. She knows DC like the back of her hand.

She oozes joy every time I talk to her, and the few times I see her. She’s in love with her life. Is her diabetes care the way it would be if I ruled her world? No. But she’s moving toward making it better. And she’s happy. About as happy as any human can be.

So when I see Blue Candle Days like today, I worry for the newer D-Moms (and dads). We didn’t used to be able to instantly share like this. I’m sure when my daughter was younger this was all happening too. I totally get that it makes you hold your child closer and want to keep them close to you longer.

But when the time comes and your child wants to do something exciting and adventurous and age appropriate in a way that will not allow you to be their immediate safety net, I hope you can think long and take a leap of faith.

I did.

So the first day we dropped my daughter off at college, the last thing I said to her was “I just need to know you wake up safe every morning. Anything ….. even a quick text, would be great.”

The next morning, back hom 500 miles away, my cell buzzed that a new text had arrived. I scrambled for my glasses and read it.

“Good morning, mom! Just wanted to let you know I’m not dead!”

That girl can make a joke out of anything. I’m proud – and thrilled – that she’s getting busy living.

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Comments (36)

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  1. Sneha K Surendran says:

    You are like my Mom. All Moms of T1Ds are same. Moms you rock our(T1Ds) World!!!!!

  2. Katie says:

    Oh Moira, I think this is the BEST ONE EVER. It is hard to let them leave and become adults. Sometimes it takes a couple of running starts, with your D kid coming back home for recuperation and a restart. But we MUST let them go.

    There is nothing about keeping them home that keeps them alive. So many of these horrible events happen when the kids ARE LIVING AT HOME.

    And I love your endo’s test.

    We have to remember that any time we watch any of our kids leave the nest, there is that worry. HOW WILL THEY LIVE WITHOUT US?

    A lifelong friend of mine whose children were about the same ages as my older kids, lost her son when our sons were 23. He didn’t have diabetes. He died in a car accident, not wearing a seat-belt. Seat-belt use was a given in their house. His dad was a highway patrolman. He was home for a visit, after many adventures of the kind that turn parents’ hair grey. I will always remember what his mother said to me, especially now, when it seems so appropriate to my current situation.

    She said, “It is such a waste of time to worry. I worried about him when he was hitch-hiking across the country. I worried when he was climbing Half Dome. I worried about him when he was jumping out of airplanes. But he was home, safe, for a visit with us. I wasn’t worried at all because I knew he was home, where I knew what he was doing.”

    The point is, we aren’t God. We can’t control the universe, or our children’s lives as they grow, or even before they are grown. We can take the best care of them we can while they are young. We can teach them the right thing to do. We can obsess over every weird BG number, every a1c that isn’t perfect, every dark alley or high mountain or unsavory friend. But in the end, we must allow them the gift of living a life.

    Thanks for this excellent blog.

  3. Paula Fairchild says:

    Again, my friend and mentor and amazing D mom.. you put to words every thought and emotion I have..and made me realize some thoughts I have are completely natural as a mom.. let alone a D mom… God bless you for your words of wisdom, of humor, your compassion, your dedication.. Thank you soo much for everything. You have my respect, my adoration, and my support, always. I may hate diabetes, but I sure love the people I’ve met because of it.. and blessed to call you friend!

    • Beth McCrary says:

      Ditto what Paula just said. We have to keep it all in perspective. Children die every day of non-diabetes related causes. This just hits us all a little harder because our kids do have Type 1.

  4. Jessica A says:

    Thank you so much for this. It brings me to my knees everytime I see a blue candle. My daughter was diagnosed on Sept 16, 2011. She just turned 7 and is the bravest person I know. Sending her off to school every morning is almost as terrifying (we are blessed to have a wonderful school nurse) as letting her go to sleep at night. I cannot imagine how I will handle sending her off to college when the time comes. Of course, even at her age she calls me an over protective mom. Keep blogging and inspiring us T1 moms, it is much needed especially on days like today.

    • moiracmcc says:

      Jessica –you WILL be able to do it. As you see your daughter grow and thrive you’ll want only what she wants in life and make the leap. And I PRAY by then we have way better tools at the very least! Thanks for reading. You guys inspire me too.

  5. Kim says:

    Beautiful post with great advice, Moira.

  6. Robin says:

    Awesome post – can I call you in 10 years when I need to figure out how to let my little D go get busy living? :)

  7. Monica Kinney says:

    This one hit home!!! You voice what every D-Mom thinks … mine included … and I love that!! Keep on keeping on!!!

  8. krisfitz says:

    Thank you, thank you, thank you for posting! Brought my equilibrium back. It’s easy to know in your head that life holds risks for everyone, we can’t protect our kids from everything, etc. etc., but it’s much harder to wrench your heart back into the right place. Thanks for reaching out and doing that for me today! (Hadn’t had enough coffee to muster up the energy yet.) You’re one helluva writer. :)

  9. Brianne says:

    You are AMAZING. I Know it was super hard for my parents to let me go to my friend’s houses when I was younger, however they give me freedom and stand by to support me now. My friends are amazing and always looking out for me which provide ease to my parents. It is a wonderful sisutation that you posted about and provides perspective. I think it is incredible that your daughter went so far away and is so successful.

  10. Kale Boehmer says:

    Thank you for being the d-mom all T1′s wish they had. Your article represents the same things that my mom had to go through with me, and shows others that T1′s do not need to be coddled and kept dependant. Thank you, thank you, thank you.

  11. Sally says:

    Thanks so much, Moira. Having a budding teenager with T1 is a little terrifying, but my daughter’s freedom and independence is my mantra every day! Bring on the coffee!

  12. Kimberly says:

    I just laughed uncontrollably at the text from your daughter…and then teared up. Oh the life of a d mom! Thank you for this!!

  13. Sallie says:

    thank you, saw the article about the young man, and immediatley my stomach churned and I did hold my little boy and gave him a squeeze. Levi is 5, I often think as nice as it is to share with the world, Emus sticking the head in the sand would be quite nice too. I love the Green Mile quote and thats what I shall focus on. I hope in 13 years I can be as brave as you . xxxx

  14. Aimee says:

    I absolutely LOVE this post. It made me cry. My daughter is only 7 years old. Even though I currently only struggle with allowing her to go alone on playdates and such I can totally relate to this post. I think about the future often. When I feel like holding her too close I will read this post again and focus on letting her live. Thanks for sharing!!

  15. a mom says:

    I dropped my son off for his freshman year of college just a few months after his type 1 diabetes diagnosis. No one else understood what that was like for me except other parents of cwd. I’m so thankful there are some of you who understand. Our kids must live their lives, and we’ll be there when they need us.

  16. Ash says:

    When my daughter, then 14, won a scholarship to a top London dance school we faced the very same issues. Every Saturday our girl would make a 2 hour journey across one of the busiest cities in the world, dance all day (whilst hopefully checking every hour, eating right so she didn’t go low on the 2 hour bus/ tube/ train ride home, drinking plenty so as not to dehydrate … you get the picture.

    Two years on she still goes every Saturday (and got a place at a great college much closer to home in the week) and, touch wood, is fine. Do I get watch fever around 6pm every Saturday when she should be done & headed home? Sure. Do we worry in case, as happened once, she loses her ticket and has to spend food money on travel? All the time. But … she loves it, and she loves us for not freaking out like a couple of muppets every five minutes. We try to be discrete, ask questions in a way that won’t make us sound like diabetes Nazis … there are a few knowing smiles and shakes of the head! But … she is chasing her dream. How could we stop that?

  17. Renee says:

    Just found a quote from years ago re raising kids with chronic illnesses: “We parents shoulder a huge responsibility – raising our kids to survive on their own – It’s not the status quo”….poignant reminder why it’s so hard to “detach” when we’ve been so intricately tied into these “kids” who DO grow up to be adults….I (and my daughter) allowed our fears/anxieties to keep her from traveling/exploring etc as much as she might have….but that’s what we both needed to do then..Today at almost 29, she’s newly-married & just successfully handled 2 wks in Rio on her honeymoon, despite diabetes, despite celiac…..It just took her longer to get to this juncture…..Bravo once again Moira for eloquently reminding us what a delicate dance we’re all trying to master, despite the music often being inaudible!!!

  18. MODSquadMOM says:

    this one really hit home, Moira. Thank you for putting into words the encouragement we all need to let our children grow. :) Not too much too soon, rather, knowing when the time is right. Thank you!

  19. Steve says:

    This was poignant, inspirational, heartwarming, terrifying, and chilling (but in a good way). It is precisely the point of parenthood–helping them grow into their own– that gives me butterflies whenever I think of my own T1 daughter leaving home one day. Thank you so much for sharing.

  20. shannon says:

    i love the morning text idea, and her response the first day! my kid is 12 and when it’s time for her to go to college, i will use your experience as guidance. thanks for sharing. :)

  21. Mike Hoskins says:

    Great post, Moira. I think you nailed it with the Shawshank line. I always think about how much we can be paralyzed and prevented from having ANY type of life by all the fears and possibilities out there, so it’s best to be aware but not let those issues stop you from living. It’s funny, too, about that call… my mom actually watches my tweets and sometimes, if I don’t tweet something (not to her, but generally to my d-peeps) she’ll send a text message by mid-morning asking, “Are you alive?” I’ve responded, “No, dead in a ditch” a few times…. humor is always helpful. Thanks for writing and sharing this, and you must be so proud to have a college-experiencing daughter!

  22. moiracmcc says:

    Mike thanks. Somehow it does not surprise me that 1) Your mom would look for you on twitter and 2) you’d respond with humor!

  23. Jenni says:

    I have to be honest – i am really battling with my 14 year old son – I don’t think boys are as concientious as girls? I try to back off and let him go on outings with his friends etc but he is just NOT managing his diabetes the way he should – misses tests and boluses and comes home HI. Have tried rewards, punishments etc etc etc but we don’t seem to be getting anywhere. He does great for about a week and then things fall apart again. Any suggestions?

    • moiracmcc says:

      Jenni

      I am on vacation in the mountains until MOnday and will respond with more detail but . . .if you look through past blogs of mine you’ll see we’ve been down the road too. Hugs — and more info coming. also see a guest blog I did at diabetesmine. excuse me asking you to google but google ‘diabetesmine freedom teens” and it will come up. Hang in there!

    • moiracmcc says:

      Jenni I forgot to get back to you! sooo — my daughter’s teen years were horrific. Control? Out the window. Compliant? AS IF! In fact, her pedi endo told me — in writing — not to send her to college. But i did. I told her it was up to her to prove she deserved it. I told her I was paying a LOT for college and if she was just going to blow it off with poor grades and not taking some kind of care of herself I’d stop paying. It was a privilege to go, not a right. It took a while but now she is a dean’s list sophomore. And how is her diabetes? Read my most recent post!!! I’m not saying it’s going to end well for everyone but right now I”m soooooo happy I let her “go free” — as hard as it was.

  24. moiracmcc says:

    Reblogged this on despitediabetes and commented:

    It seemed appropriate for me today to repost this. While as always I don’t have a blue candle on my facebook page, I have one (actually A Clara Barton Camp Candle) burning in my heart this week. We’re all remembering an amazing young woman and struggling with how we will go on without her. But at the end of the day, I know she’d want each and every one of us to Go On Living. For you, my friend. How I’ll miss you, but how I’ll see your spark in all the young women who so love you.

  25. Brenda says:

    M~
    I read your posts because it lets me peek into what my mom might have been thinking through our journey. I was DX at age 14 in ’74. Within weeks of the dx I had two outings (one a weekend church campout in a town about 70 miles away….remember no cell phones in the day!) They were serving doughnuts each morning at the campout….so mom made an appt with the RD and together they plotted a menu that could work. Bottom line…………I GOT TO GO!! These simple acts set the stage for our “can do” attitude.

    Fast forward a few decades and I had the chance to have lunch with a fellow diabetes camper. I was in her town on business and excited to see her. We had not been in touch since our camp time in the late 70s. It was a sad, sad experience.

    At the time I had just completed grad school and had success with an exciting organization that required world wide travel. I had married and had many hobbies, including long distance cycling, diabetes advocacy, stained glass, etc. And, yes, I had some complications resulting from diabetes during the ’70s and sucky compliance during my college years.

    She also had a few complications……but what struck me as sad is that her mom told her she shouldn’t “push” herself because of the diabetes……she shouldn’t attempt college, or working outside the home or ANYTHING! And she took her mom’s words to heart and didn’t. She lived with her parents until she married her husband and he continued the belief started by her parents.

    Now fast forward another decade or two……I stay in contact with her and nothing has changed, except that she now has some tough complications……..including the amputation of a leg. I continue to work for this same organization and have continued to lead a full life, including cycling, etc. I have reversed several of my complications with the help of a pump and CGM.

    I have often wondered if my full and demanding life has contributed to better health in the long run. Sure there is stress and pressure……..but I HAD to take care of myself because my busy life and schedule demanded it…….I HAD to feel good to accomplish the things I wanted to! How good do you really need to feel to lead a sheltered life?

  26. Jaime says:

    My 3 year old starts preschool in 6 days. Not because he has to, not because I need him to, but because he loved it last year before diagnosis and I know he will love it this year. It may be down the street, it might just be preschool but I feel like its a college in DC. Lol

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