"If you bungle raising your children, I don't think whatever else you do matters very much." Jacqueline Kennedy Onassis
"Parenthood, particularly parenting children with serious, chronic health needs is the perfect job for someone who has not yet had a nervous breakdown, but has always wanted one." Me, 2010
It is no secret that our two oldest children fight Type 1 Autoimmune Diabetes everyday. Ellie was diagnosed in January, 2008, the same week that her baby sister Katey was born. Later that year, we received the heartbreaking news that Bradley's immune system had already attacked his pancreas, and that diabetes was imminent for him, too. Since that time, and often under the haze of sleep deprivation, my attitude about how we'd handle it has gone through many incarnations. At first, we just tried to learn as much as we could, master the equipment, and keep the kids upbeat and happy. After that, I "decided" that diabetes would not be the planet our world would revolve around. We had a great life before diabetes, full of fun, friends and laughter, and I would not let that change. I would also not talk about it, post things on Facebook about it, or let it have a negative impact on all the wonderful parts of our lives. Three years later, I realize how impossible that was. I tried not talking about it. Shrugging questions off with, "Everyone has a battle, this one's ours, we are lucky in every other possible way, including how sweet and kind our kids are..." blah blah blah. That's what I did for the first year.
After the rough first few months, both kids were doing well. They accepted their bi-hourly blood checks, needles and food restrictions and scheduling. Kate was still just a little nursing baby when Ellie started Grade 1. Being in school for full days provided many challenges, and most days, I had to drive to the school 1-2-even 3 times/day. Kate never had the chance to finish a nap in her crib for the first 18 months of her life. I'm pretty sure she's still bitter about that.
The first year wasn't easy, but the kids remained happy, well-adjusted and healthy-ish.
The first hint that maybe I wasn't doing emotionally as well occurred at a work Christmas party of Gary's. I've always loved all types of parties - I even dig the fake, small talk! Gary and I have always been considered pretty fun people, if I do say so myself...(insert Sarah Palin you-betcha wink here). A few work friends I hadn't seen all year asked about how the kids were doing. Right there, in the posh and trendy surroundings of a downtown Calgary "IT-SPOT" I started to cry. At a party. I could not stop. Truthfully, it was my first night out in over a year, I was dressed up, happy to be out and and had a lovely glass of champagne that the wait staff refreshed. I didn't drink a lot... I didn't have to. Something triggered my tears - probably a combination of champagne, exhaustion, and deep, deep sadness over what this disease had done to our kids' lives. (In addition, I had just recently realized that Type 1 Diabetes had been the disease that killed Julia Roberts' character in Steel Magnolias).
The raw emotion and tears that hit me that night lasted about 2-3 days. I cried to Gary about what diabetes had done not only to our kids' bodies and their little lives, but also what had happened to our lives as a family. We rarely saw people anymore. I became very isolated. When your kids have chronic conditions, you don't feel comfortable talking to people about it, because you feel guilty saying anything that could be construed as a complaint. It's not complaining; just stating the facts about the new realities. In addition to that, some people become uncomfortable around you. Not because you are talking about the disease (I didn't) but because when they look at you and see an otherwise healthy-living, loving, happy, engaged and educated family who have had their lives ravaged pretty randomly by a wayward immune system... it makes them fearful. Fearful that the same thing could happen to them.
You know how awful you feel when you hear someone has cancer? And then you find out it's lung cancer and that they smoked for 35 years... there's almost a feeling of relief, like, "ohhh... dear... that's terrible. But they DID smoke. 'I' don't smoke..."
It's ugly, but true. The opposite is also true. When disease hits (especially young people) and it was no one's fault, not preventable and nothing that could have been done to change things, it makes some people uncomfortable.
After the crying episode, I briefly saw a therapist. The JD Clinic at the Children's Hospital had recommended therapy for us as soon as we'd received the first diagnosis with Ellie, but there was truly no time. Plus, there was no one to watch the kids so that we could get there. Children with chronic conditions, and also their parents, are more prone to depression because of the relentless nature of the disease and it's round-the-clock care. No matter how great you do with levels or a crisis one day, you start from scratch the next. Parents are more prone to divorce and a myriad of other issues. You live with full throttle anxiety and worry, and a great deal more responsibilities than parents of healthy children. Can you imagine testing your kids blood before giving them even a little Christmas mandarin orange, all day, everyday? Then measuring millimetres into a syringe and giving them needles every time they eat a meal, then worrying it might be too much insulin and that they might pass out, or worse? Not to mention the grander worries about their longterm longevity. You are literally in charge of making sure that the people you love most in the world, live. It can make for raw nerves, so therapy is wise.
I think therapy is the greatest gift you can give yourself. I have yet to meet a person without some issue. It is not something to turn to in times of crisis, but long before that. Tantamount to taking a car you care for in for regular oil-changing/check-ups. I haven't been in 18 months, and I could probably use an hour, but I'm writing this instead.
We realized this school year, that with the best of intentions, we have not done right by the kids in downplaying their conditions to the world. Especially at school. I won't get into it all, but a few incidents at school have really changed our perspective. Then, on Nov 4, Ellie had a grand mal seizure while getting ready for school. Afterwards, she passed out and vomited for several hours. I called 911 right away and she was rushed to the ACH. She remembers none of it, thankfully, but it was the worst experience of my life. I thought we might be losing her. I feel sick just writing about it. We are pretty sure it was the result of a series of severe low blood sugar she was having at night. We've made some changes and now test her and Bradley several times through the night.
Ellie is doing well, and does not like talking about/hearing about "the incident". Since it happened, and maybe because Gary was working out of the country at the time, I feel scared to be the only adult in the house. I also feel overwhelmed sometimes and afraid often. Gary has been away much of the fall. I've also become more open about diabetes on Facebook, and emails. When parents call and ask if our kids can come over for a playdate after school, instead of making up an excuse, I tell the truth. They can't.
It's hard, if not impossible, to find an original thing to say about parenthood. It's all been said, and it's all soooo cliche, but... it's been the best part of my life. The supply of my daily doses of laughter, love, hugs, messy rooms and dirty faces - once the sole responsibility of my husband, now come from the kindest, smartest, sweetest little people I always wanted to have as a parent. I love em from their toes to their nose. That we have to test their blood every two hours, then calculate the amount of insulin needed for that level, in combination with the amount of carbs they are about to consume, then make sure they eat all the dosed food, then make sure afterwards that their blood/sugar levels don't fall low, or high... and deal with that appropriately; well that is just our dues for having these little people bless our lives. And bless it, they do.
Therapy has not cured me of the odd, instantaneous tearing up episode (they still happen, not often), but it does provide perspective.