Unfortunately I'm meeting more and more people that are directly affected by type 1 diabetes.
I'm not sorry that I know you or that I met you but I'm bummed about how we've met and the reasons we need each other. However! We do know each other and we do need each other and we are such a great team, all of us diabetes community types, so, good for us!
When we get together we like to talk about things that other people just don't understand. Like we are chronic illness elitists or something. Whether it's "what's your life support system?" or "how many carbs do you think this hamburger bun has?" we are guessing and learning together on a daily basis. There are loads of ways we can educate the people that are not us; with numbers and facts and examples and daily interactions. But the truth is there are things that we can't put words to. I think any parent or caretaker of a kid with a chronic condition would say the same thing: when we look into the eyeballs of someone living the same life we don't have to say a word. We want to cry and scream and hug and laugh and say bad words and pray all at the same time. We know what not to say and when to speak up.
I recently have met a few newly diagnosed families and I listen to their story and hate the next chapter for them. One thing I have thought and talked about ever since Bug was diagnosed almost 7 years ago, and something I have had a hard time explaining to people who don't speak chronic illness, is that after diagnosis you have to mourn that loss. The loss of the way everything used to be, because every inch of every second has now changed and you just have to hang on and go with it.
I've written before about the day Bug was diagnosed and how awful and scary that was, but it was the six months after that day that brought me to my knees.
I was truly in mourning. Everything that happened in that time period is in a foggy place in my brain and even now I can't remember it in full color or volume. It was lonely and terrifying and just altogether uncharted territory and I did not want to own one bit of it as my actual life.
I cried a lot. I cried because I was scared. I cried because I felt entitled to a different kind of existence. I cried because I was sad. I cried because I couldn't make Bug's baby food myself anymore because it was easier to count the carbohydrates in a pre-measured jar of green peas. I cried because everything from that point on had a big giant diabetes stain on it.
I mourned the loss of carefree and the loss of laid back. Bug has worn an insulin pump since we came home from the hospital with diabetes, and I remember after her bath, before I put her pump back on, I used to hold her and rock her extra long sometimes. I would rub her back from her diaper to her neck, over and over. It was the greatest feeling, her tiny back not invaded by a medical device. In those moments it was like it used to be. Then I would cry again, watching tears hit her back and roll past the tiny bruise she had from her pump hitting her back in her carseat over and over. I'm so grateful she was only 10 months old at the time, otherwise I would have seemed like a total loony toon with my crying and excessive back rubbing. I mourned the loss of her bare back and the way a onesie used to look without her big bulky pump underneath.
Some of it seems dumb but I'm so glad I let myself feel it all. I was unknowingly patient in my grief. My natural tendency is to want everything to be fixed and fine and comfortable as soon as possible, but in those six months, there was no hurry up and get better. It was heavy and real and would be affecting the rest of my life and the lives of my family members, every hour of every day. I was weak and afraid and feeling every bit afflicted. In my mourning and my grief and affliction, in my weakness God's power became stronger and my purpose made more clear.
I like to think about this whole situation like a rain puddle. We have had a lot of rain lately and my son goes into a deep depression if he can't be outside for at least 30 minutes every day. So, naturally we have been playing in the rain lately. A lot of puddle jumping and splashing, followed by so much laughter and joy, resulting in a positive nap time experience for the both of us. In all of the rain and his puddle joy I've noticed a few things. When a rain drop hits the puddle, the puddle gives way a bit to allow the drop to make an impact. After the impact, come the ripples and then that rain drop is forever part of that puddle. As the ripples fade away the puddle calms and is now a little bit bigger and more purposeful; better for the jumping of little feet. We need to be the puddles. We need to give way for the afflictions and feel their impacts, because then the ripples come and we can see how the Lord is made strong in our weaknesses and how he is making us new. We need to mourn and let ourselves feel loss so that we can move on and grow up and do the big things we were created to do.
If you are feeling the weight of a season of mourning, you are right to feel it. Know that after the ripples calm, there will be a bigger puddle and a higher purpose and there will be joy and jumping again.
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4
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