Tuesday, October 16, 2012
DX-iversary
It has been 5 years since my baby was diagnosed with type 1 diabetes. 2 years of 5+ needles a day. Almost 3 years on a pump. More blood glucose toe and finger pricks than I could ever count.
I've been thinking about it for days. Very, very calmly. The first DX-iversary was almost crippling. The second was depressing. Third and fourth were sad. This one barely upsets me. I did have a mild freak out last night while watching Faith. The show was sad, and I got overly upset. Sad scenes with Lee Min Ho get to me every time, but this was excessive.
But it was okay. And I know why. Last night, just as I was soon to lose it, the candoc tweet chat started. So, instead of being in the kitchen alone, baking fish and mashing cauliflower, I was in the kitchen with other people who were dealing with diabetes. Chatting about travelling and flying with diabetes. Instead of thinking about how long and lonely the last 5 years have been as my angel's primary caregiver, about how my husband went to Regina and left me in the hospital for a week with E alone after her DX, about how I am the only one who actually does all her care 90% of the time, I was planning how to fly to Barbados. What to take on the plane, how to go through security with all those needles, and what to watch for from the excitement (read stress).
And so, I made it through with the help of the Canadian diabetes online community (candoc). As I sit here in the park, waiting for some strangers to be done wandering around my house, I realize I have accepted her diabetes. I don't yearn for a cure. I am no longer angry, or bargaining. I am at the acceptance stage. I know my baby won't live as long as the rest of us. I know one wrong insulin dosage could put her in a coma, or kill her. I know she will never feel completely normal, that almost every second of her life she will have to be aware of the big D, lurking inside her. But it is what it is. It doesn't mean she can't be happy, be as healthy as possible. As normal as possible. That's better than a lot of people. So I guess I'm happy. There is no chronic pain. No extended hospital stays, not yet. So we're okay. For now.
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We just celebrated one year. Never in my life would I have ever thought that we would make that day. The first year was hard for us but I would have never made it without friends like you.
ReplyDeleteFive years has to be rough but guess what, she is alive and doing very well. With the information you provide her with will give her the best stepping stone for self management and she will do fine. She will probably outlive some of her non-d peers because of her better lifestyle.
Keep your head up, smile and hope. You are a great mom. Don't forget that.
Here's the thing, and I know you know this but sometimes you need to hear it from an outsider looking in: your children will always pick up what you are feeling or thinking, even if you say differently.
ReplyDeleteWhen you feel and think that your daughter will never be normal, will live as long as the rest of you, or that every second of her life there will be a thought about the D....it can seriously damage her self perception and her understanmding of living with diabetes. I am saying this only because I lived the life your daughter is living. I grew up adjusting and re-adjusting to life with diabetes as my parents stayed angry, sad and lost for years. It didn't help me.
People with diabetes no longer have extremely shortened life spans, we no longer are not normal and we don't struggle as much as the media and even health care professionals try and say we do. We feel normal most of the time, adjusting insulin doses, carb counting etc is just part of my every day and it is not a negative part. It's just like brushing my teeth, just something I do. As her primary care giver helping her through the extremely important developmental stages it is more important than anything that you remain positive and empowering for your daughter.
And believe me this is not parenting advice, you are an amazing mom already and nobody can change that, it is evidenced in how you care for your daughters, how you reach out to us in the online community and how you check blood sugars at night, and how you caught your daughter's chronic illness before it was too late. This is advice for helping YOU thrive with a chronic illness in your family.
The best thing that my family and I ever did was go to a therapist who specialized in living with long-term chronic illness. We went as a group, my parents would go alone, I would go alone and the whole outlook on diabetes changed completely.
I went to summer camp, and gained independence and learned I was not alone. I strongly advise you do this when your daughter is of age. It is life changing in the best way possible.
I am living proof that diabetes is not the death sentence that we seem to be given by doctors, the media and friends and family. I live a very happy, healthy and strong life. I have a boyfriend, a dog, I canoe, walk, and bicycle. I have NEVER had a seizure or hospitaliztion due to diabetes, and I am proud to be a diabetic.
I truly urge you to get involved with the JDRF chapter nearest to you so you can meet other amazing d-parents and your daughter can meet other amazing d-kids.
No matter how alone you feel, you are not and never ever forget that.
I'm sure you're right. I try to make everything normal, but I'm not doing such a great job. I have a question. How do you achieve normalcy, and still maintain good control? We have fights over food, she sneaks food all the time. I am constantly adjusting. I am the only parent at the school at lunch time (the school requested it until the aid is back from sick leave). And her A1C is still 10. Every time I tell her she can't do something, she says that it's because of her diabetes, and she hates it. (It's not like I let her sister have brownies for supper!!) She gets on these terrible roller coasters. 30, 2, 30, 2.
DeleteI don't know. Maybe when she can meet kids her own age (there aren't any here), or when she's old enough to go to the camp. For now, it's anything but normal.
And we have used the Glucagon shot. It was terrible.
I think you're doing great. And kids will ALWAYS sneak food when they are diabetic. I did it too. It happens, and there's no reason to continue to scold her because it makes it worse. The best thing you can do is engage her in how to prepare for high sugar/fat foods (usually what I was sneaking, like chocolate bars)
DeleteBut also, those roller coasters aren't your fault, or hers! When children grow the hormones that are secreted can really play with blood sugars and nothing you or her could do could change that.
Where are you located again? I would be happy to look into getting you guys to a JDRF event or something.
Maybe if you do a Big Blue Test with her and her sibling(s) and dad? You know, you all check your blood sugar and make sure you hammer home it is only a number. You can show her and she can show you what a little exercise can do for her (and you guys!) ten minute walks are enough for that.
Maybe engaging others around her might help her accept it a little more. It's a lot to understand when you're so young (and when you're a mom!) that's why I reccomended seeking out if there is a psychologist that specializes in children with chronic illnesses. It really did help me and my family when we were going through what you are.
But again, you're not alone! Keep reaching out, it's so important. And you never know who you could be helping!