Hi everyone. I want to start by sharing that I had read and loved Miggy’s blog years before our family became one with special needs. I distinctly remember wondering if, faced with a similar reality, I would be able to be as resilient and brave and amazing as Miggy and other moms who shared on her pages. I have to believe it’s because of them that we are navigating our “special” with any measure of the same. We are a family of four living in western Washington state. Being outside, traveling with family, finding humor in life, and impromptu dance parties are some of our favorite things. Our son, Crew, was diagnosed with type 1 diabetes last September, and this is our story!
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Miggy: Welcome Camery and thank you so much for being part of the special needs spotlight series and sharing your family’s, and especially your son, Crew’s foray into type 1 diabetes. Can you take me back to the period of time from when you knew your something was off about Crew to when you got his diagnosis? What were those first red flags and how did you feel when you got his diagnosis? Can you compare those first thoughts and feelings with how you feel now?
Camery: Thanks, Miggy! We are still fairly new to type 1, just a little over a year now, so a lot of those memories and feelings are easy to recall. Summer was winding down, although we still had a couple of adventures to cross off of our summer bucket list. As we swam and hiked and played I noticed he seemed a little ‘off’. Usually the first one up for an adventure, I was now finding him on my lap, or asking to be carried, or resting on the couch. We went on our first BIG camping trip and he didn’t perk up at all. I attributed it to the end of a busy summer and let him go at his own pace. But my concern was piqued.
He wet the bed for the first time in his life one week before his fifth birthday. And then a second time. He was always thirsty. So, incredibly thirsty.
We measured Crew on our family wall for his 5th birthday a couple of weeks later and realized he had grown nearly four inches in one year. That had to explain why he was suddenly looking so thin, right? Walking up the stairs that night he collapsed from exhaustion. His little body just couldn’t even move. I carried him up to bed and something in me knew things were about to get really real, really fast. I worried he wouldn’t make it through the night so I called a wise friend. When told her I thought Crew maybe had type 1, she paused and told me she had some family in town visiting: one, a registered nurse, the other, a type 2 diabetic with testing supplies to spare. They arrived in minutes and as her nurse sister poked the finger of my lethargic and unaware child, she told me the meter would only give a blood glucose reading of up to 500. Anything else would only show HIGH. Seconds later the screen lit up: HIGH.
We scooped him up and drove to the closest emergency room. Unfortunately we learned in the most inconvenient way that the nearest emergency room doesn’t treat pediatric diabetics. As we waited for an ambulance transfer to another hospital they ran a few tests and shared that his blood glucose level was 782. My heart almost stopped. Earlier in the week I had read of a little girl who died with an almost identical blood glucose level. She died.
Crew was in and out of sleep. When he would wake, he begged for water, which they could not give him because he would only projectile vomit it up moments later.
Finally, the ambulance arrived.
He went to sleep that night in his bed and awoke in the pediatric intensive care unit of a nearby children’s hospital. Crew had type 1 diabetes.
It was a lot of change in a very short amount of time. I remember the medical team telling us we would need to stay at the hospital until we learned how to fully care for him. Checking his blood, counting carbs, administering insulin shots, monitoring for ketones… And I distinctly remember thinking, “This room isn’t so bad. The people seem nice enough. I’ll just have our mail forwarded here and bring some different pillows from home. Because there is no way on this good earth or in heaven above I’ll be able to do all of that.”
My husband jumped right in and began learning and I followed, dragging my heels on the shiny hospital linoleum, two steps behind.
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Miggy: Will you educate us a little about type 1 diabetes and how your son and your family have had to adjust your life over the past year? What has it been like for your family to go from no special needs or medical issues to a serious medical issue overnight?
Camery: Absolutely! Type 1 is an auto-immune disease which causes the body to attack the insulin producing beta cells in the pancreas. Insulin is a hormone needed to allow glucose to enter cells to produce energy. Without insulin, glucose remains trapped in the bloodstream and that is an incredibly slippery slope toward life-threatening consequences.
His body can not regulate blood sugar on its own. This means we are constantly doing that work for him. Giving insulin to treat high blood sugar, and food to bring up lows. While he plays and eats and even while he sleeps. Mood, sickness, activity level, stress, food, all of them can drastically swing his numbers and require immediate attention. Everyday is a new adventure.
There is some general confusion as to what a Type 1 diabetic can actually eat. We tell everyone that the only thing Crew can’t eat is poison. Some foods are healthier; we aim for those foods. Some foods require less insulin, and we also try to err on that side of things. But he CAN eat everything your child can eat (and trust me he does!), he just needs insulin first!
The first few months were new and terrifying, for all of us. So much to learn and such a small allowable margin of error. All of my free time was spent either learning about this new part of our family or actually dealing with it in real life. Every finger poke and every shot meant tears and heartbreaking sobs. Ours were on the inside and Crew’s on the out.
It took us a while to figure out how diabetes fit into our family, and I worried constantly about the toll it was taking on his older sister. It has been life changing for her, too.
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Miggy: Of course all parents worry about their children but how have your worries changed for Crew over the past year? And as far as your hopes and dreams for him, have those changed as well?
Camery: Oh man. Great question. I can tell you that I don’t worry about a lot of the things I worried about even a year ago. Coming as close as we did to losing a child will do that, I suppose. I could not care less about things like how quickly he learns to read or to tie his shoes or hit ANY of those milestones. I just love watching him figure life out on his terms now. He handles the diabetes parts of his life with the BEST attitude. So maybe that’s my hope for him. That he will continue to navigate life joyfully and on his terms, and that he will make wise choices with the management of his health as he grown more into that role. And that maybe others will be able to meet their challenges in the same way because Crew showed them how.
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Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Camery: Oh gosh, yes. Humor really is the best medicine!
I remember asking Crew some questions as I tucked him in one night. My intention was to get an idea of where his heart was in processing all of this. We had been home from the hospital for about a month at that point. It had been so traumatic for ME I was wondering how he was handling it.
“Mom, I think I’ve figured out what I want to be when I grow up. I want to be a nurse because those nurses who helped me were the best and I want to do that for other kids.”
“Wow, buddy, that’s great. I think you’d be an amazing nurse, “ I told him.
“Yeah. A nurse. Not a doctor. Those guys didn’t really even do anything.”
Without pausing he added, “But before I be a nurse, do you think I could also get Type 2 diabetes so I can go back there again? I just loved that hospital.”
It was SUCH a wake up call for me. He was absolutely fine and it gave me permission to be fine, too.
Miggy: While type 1 diabetes isn’t exactly a visible condition, it does come with visible medical equipment that can bring curious stares and questions. How can people best approach or respond to Crew? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Camery: It sure does. Crew now wears an insulin pump, and a continuous glucose monitor full time. Because he’s so young most kids he’s around are just curious and most adults will just ask him about it. Honestly, a lot of the ways we have chosen to respond in situations where it has been awkward or unkind has been as a direct result of the information you have shared.
We have gone in to his classes and shared ALL about Crew, not just the diabetic parts. Perhaps he is his best advocate because he’s not embarrassed by the equipment and I think that has given others the permission to normalize it as well. When he alarms, his friends help him. When he needs to stop and to check something often his friends will pause what they’re doing to wait for him. If we notice people staring, we reach out first. When misinformation is presented Crew will correct them.
We are still pretty new here but already my fears of him having some great shame about this are diminishing. Not all Type 1 kids are at this same place because they have had different experiences and I understand that, too.
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Miggy: If you could say something to the mom who just starting on this type 1 diabetes journey, what would you say? What would you say to yourself if you could go back in time?
Camery: I’d tell us both the same thing: to live THIS day. Not an imagined reality years from now. My biggest hurdle was mourning deeply the life I had planned for my son, while also trying to imagine life too far ahead of the mark. When I learned to stay present it got so much easier.
Miggy: What is the biggest lesson you’ve learned since becoming a type 1 mom?
Camery: That I have no control over my son becoming diabetic, but I have absolute control over the way I choose to live in spite of it. And that has made such a difference for our little family. Life is going to continue to be amazing. It really is. Just watch.
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Perfect last paragraph. We don’t have any control over things like diabetes or any number of situations in life, but we DO have control over how we choose to live those circumstances. And yes life will be amazing. Also, “Live THIS day.” Yes, yes, yes. If someone had told me all that we would face with Lamp I would have been frozen with fear. Luckily, like you, I blocked out all the “what ifs” and I didn’t wonder about things 2, 3, 4, years down the road I just took it one day at a time. Especially when so much can be an unknown. Live in the now. Do the next thing that has to be done. And the next. And the next. Sooner or later it will start to form a more complete picture and you will adjust to a new normal. Also, I can’t tell you how happy it makes me that you were a blog reader before this happened to Crew and that you have been able to take the hope and experience of so many previous families to help inform your situation. That is the most I could ever hope for for this little blog. 🙂 So much love to you and your family. Crew is in good hands (luckily not one of those do-nothing Doctors! haha!)
You guys! These interviews give me life! As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.
Have a great weekend.
XO,
Miggy
