Acceptance. Finally, or Maybe Just for Now.

 

When a parent is handed a lifelong diagnosis for their young child, such as type 1 diabetes, a long grieving process begins. It’s incredibly hard to accept the new direction your lives will now take — individually, and together. If you’ve never been through something like this, it’s hard to understand, but you immediately begin to mourn the life you thought your child might have, the life you thought YOU would have as a person and as a parent. I remember one of the first things I said to my dad when he arrived at the ER when she was in DKA at  diagnosis was, “She’s always going to be different.” How bleak.

And that’s exactly what it is at first. Bleak. It’s ROUGH adjusting to this whole new way of living, feeling like you aren’t qualified to be a medical caretaker, fighting for your child’s life everyday. People told me in the  beginning, “It will become your new normal.” I hated hearing that. And while I still feel like nothing about living with this disease is normal, I realized that what people meant was: You will come to ACCEPT this as your life.

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Creeping in late night to increase her basal rate of insulin because she was running high. It is rare that we don’t have to treat a low or high blood sugar at least once a night. Diabetes never sleeps (and neither do Jeff and I). Oh, and that’s just henna ink on her hands.

I used to spend hours online every week, talking to other moms with T1 kids, looking at other T1 families’ experiences on Instagram, researching recipes and products, and sharing our own daily struggles on social media. But I don’t as much anymore. I don’t want my day to revolve around documenting how much diabetes sucks. I want my family to live…with diabetes in the background. I’m not letting it totally run the show anymore. I want Lily to live her life as if she never got the T1D diagnosis (as much as that’s possible). I don’t want it to hold her back. So that’s the example I’m STRIVING to set for her.

What led me to this newfound acceptance? Having a second kid. When Griffin was born, my focus really had to shift. I had to accept more help from others and let go of being the main person in control of her blood sugar at all times. It was hard. I wanted to do it all, but it just wasn’t feasible. Jeff took over nearly all nighttime duty, as well as most Dexcom and pump site changes. My parents watched Lily more, and sometimes my mom would come over and watch her numbers while the kids and I napped. Her teacher stopped texting me as much about how to handle things while she was at school. And Griffin himself was just like this little beacon of hope. The way he needed me was so natural and sweet in comparison to what diabetes demanded of me, and it healed me in a way. He has brought us all so much delight, and it’s a joy to watch Lily be so sweet and maternal with him.

 

And then there’s Miss Lily… Diabetes is no match for her resiliency. She’s a shining light in the face of the crummy daily grind of diabetes. Sure, there are really hard days with lots of tears and frustration, but she picks herself right back up and goes on like nothing happened. I’ll never forget the time when her pump site ripped out of her leg (ouch) while my mom was watching her and she told my mom, “It’s OK, just stick it back in.” (For those who don’t know, it’s definitely not as simple as that.) I know there will come a day when this positive attitude will turn into something uglier and we will need to be there for her in a whole new way, but for now, the way she handles her disease is downright inspirational. It’s crazy to think that this little three-year-old has taught me more about life than any other person I know. I’m so grateful and humbled to be her mom.

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I know grief is a tricky devil, and there will always be times when the magnitude of it all hits me like a ton of bricks. And, like I said before, I know darker days are on the horizon as she grows and understands how unfair having diabetes is. My hope is that she will let me feel the unfairness of it all with her, that we’ll be in it together always. I hope we will pick each other back up and move forward with fortitude.

Acceptance doesn’t mean complacency and I’ll always advocate on behalf of her and other type 1 diabetics. I’ll always educate people on what this disease really is, as it’s hugely misunderstood. But I’m happy to say, after about 19 months, I’ve accepted that diabetes is now a part of our family. It’s always with us, and being mad and sad about it won’t change that. Having that perspective is huge for me.

Thanks for reading. Today and always, I’m wishing you all healing and perspective for whatever challenges you may be facing. And for all those caregivers out there, don’t forget to take care of yourself.  I know this is much easier said than done. I’ve dealt with some serious caregiver burnout before and it helped me hugely to talk to professionals — so please reach out to someone — anyone — if you’re dealing with burnout! If you can’t justify taking time to help yourself, please justify it by realizing how much it will help your children.

8 thoughts on “Acceptance. Finally, or Maybe Just for Now.

  1. Beautifully written, Stephanie – I am humbled to be YOUR mom. Lily is an amazingly happy, fun, sweet, resilient little ray of sunshine in all of our lives, and she she will always be, thanks to the wonderful example set by her parents. She and sweet little Griffin are both so very precious. Love and hugs to all four A’s!

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  2. I was diagnosed at 2 years old with Marfan Syndrome. It wasn’t till I became an adult and really thought about what my parents must have felt when the dr. gave them my diagnosis. My mother and I talked recently about how she felt during that time. I commend you for sharing such honesty it truly will help someone else. Also, how you pointed out that it’s ok to talk to a professional.

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  3. What an amazingly written, heartfelt glimpse into what has been the biggest struggle and heartbreak you and your family have endured. Your strength and resilience will forever amaze me. Lily is an absolute firecracker and will handle the good and the bad times in the most amazing way. Thank you for sharing the reality and truth behind a life changing and life long diagnosis. ❤️

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