Falling down and getting up in the land of T1D…

There are so many obstacles on the type 1 diabetes path, so many rocks that get into your shoe, little tiny irritants that add up to one big urge to throw in the towel. There are boulders, falling from out of nowhere, blocking your path. Sometimes, like today, damn-I just want to find the nearest cave, huddle inside it with my family and pretend the world and our path do not exist. 

Right now I’m looking for that cave, and I can’t pinpoint an exact ‘thing’ that happened to make me search for it. I know a lot of little rocks have piled up, and I keep moving them, but bigger rocks keep landing in the way and I am getting weary of having to move so many. I am tired.

In the land of T1D, I don’t often admit how exhausting living here can be. I smile, I respond “everything’s great” when asked—because, well, it’s easier! Who really wants to hear that Type 1 diabetes is draining, never ending, confusing, frustrating, sad and scary?  It is a life full of explanations about  your child’s disease- at school, clubs, athletics, church, going over to a friend’s- EVERYWHERE your child goes-because explaining is needed to keep him alive. It is watching the glazed look of confusion come into people’s eyes as you explain it, the feeling of being Charlie Brown’s teacher… “blah, blah, hypoglycemia, blah, blah, bolus, blaaah, glucagon, blah, BLAAAA.” Diabetes is the struggle to find a balance of giving enough information to keep him safe and not too much -which could make people scared to have him around.  It is the tightrope you walk while trying to make sure he is medically safe without being seen as a pain in the ass-and the fact, that sometimes you HAVE to be a pain in someone’s ass to keep your child safe.

In this vast wonderland of diabetes, parents also have to balance the lives of their non-t1d. School, soccer, music lessons, and the social life of the non-t1d are just as important as all the ‘need to knows’ for the t1d. Diabetes takes no prisoners, leaves no one in its path untouched. Diabetes causes anxiety, fears, and stress-just as much for the non-diabetic as it does the diabetic. Parents have to explain THIS at school, clubs, athletics, church, going over to a friend’s too.  There is no mistaking the fact that BOTH my kids have type 1 diabetes. One physically has it and the other emotionally has it.

Not admitting  the difficulty of parenting a T1D and the affect it has on parenting a non t1d- I guess it comes from not wanting to admit weakness. I got this, I can handle this, and this disease will not stop my children from living an amazing life-all things I want to believe, but the truth is-this disease tries, and often succeeds, at doing just that—stopping our lives.  I don’t always handle it, can’t always say ‘I got this’ because T1D is sometimes stronger than I am. 

Am I wrong to admit this? I don’t know, but man, it feels good just to let it all out! Does this confession make me a bad parent? I don’t know that either, but I think my kids need to know that sometimes even parents fall over the rocks and boulders in their way. I hope it is not my falling down that they remember but my getting up and the moving on.

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2 thoughts on “Falling down and getting up in the land of T1D…

  1. Ok, I had a duh moment. Somehow Palladinos, I missed your blog. Until today when Michelle (Frankie Palladino’s thoughtful nurse at camp) sent it to me with information she hopes to share via her website.

    To all my friends who know me, but don’t really know what I live each day …. read Patty’s blog post and know what I live. Every day. This really encapsulates it.

    I especially like, “It is watching the glazed look of confusion come into people’s eyes as you explain it, the feeling of being Charlie Brown’s teacher… “blah, blah, hypoglycemia, blah, blah, bolus, blaaah, glucagon, blah, BLAAAA.” Diabetes is the struggle to find a balance of giving enough information to keep him (her) safe and not too much -which could make people scared to have him (her) around.” All this for a play date!

    Patty – you are an amazing writer! Your words are insightful and right on!

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