At times, it can be so exhausting to stand for something.
It's not always a decision to stand. Sometimes we are pushed or pulled or, sometimes, the thing you end up caring about is a big giant hole you just fall into by accident. Other times, you see or hear something that makes you care or hurt or cry, and you feel so strongly with all of your cells, in that moment, that you want or need to be involved with whatever it was you saw or heard.
It's always pretty inspiring to me to see someone who cares deeply for a group or a cause by which they are not directly affected. They raise money, raise awareness, raise their hands and it's not going to come back to benefit them. They aren't going to be cured, or housed, or clothed, and they are still excited and willing to be where they are and to play their part in that moment.
However, these people can say, at any time, "I need a break." They take a break, get refreshed, and hopefully they decide to jump back into all those raising efforts with renewed hope and heart. I have a lot of lovely people around me that do just that. They spend countless, unseen hours for people, animals, shelters, countries, chronic conditions, and so many other deserving causes. I want to jump in with them! I want to help and give and share and just do it all along side them, and a lot of times I do and it's great! I stood for something for a bit, I feel good about it, the organization I worked with (hopefully) felt good about my being there, and then I go home and I sit and I move on.
It's the standing for something you can't let go of that is wearing. In my case, I fell into the thing I care about, and sometimes I just want to quit caring about it!
When Bug was diagnosed with type 1 she was a baby. It was easy to care and to fight for her because she was helpless! I fed her baby food with a spoon, wiped her face, gave her insulin, changed her diaper, bathed her, rocked her.... you get it. I cared so much about her being cured. I prayed every day, at least three times that this was some weird case she would grow out of and suddenly have a working pancreas. I talked about it all the time. I volunteered with JDRF as much as I could, I started this blog, I raised money, and frankly wore people out, I'm sure.
The parents I met with older kids warned me that when Bug was a teenager she would go through a phase where she would try to act like she didn't have type 1. She wouldn't check her blood sugar, she wouldn't want to talk about it, she would want to hide her condition from the other kids her age and just try to be "normal" for a while. I was so stressed about this impending doom. After all the hard work and sleepless nights my husband and I had put it, how dare she ruin that perfect A1C we had built up over time?!
But now it's me. No one ever told me that I would be the one to rebel! No one warned me that I might want to run away from caring about something.
Bug is 8 now and has been doing insulin injections, instead of wearing a pump, for about 4 months now. It has gone so well! She is so self sufficient and confident in giving herself shots. She checks her own blood sugar, adds up her own carbs (with adult assistance), and after we calculate the dosage for her, she gives herself her shot. She is very good at feeling her lows and highs and is quick to check her blood sugar as she feels needed. We are as close to normal as we've ever been.
I watch her run like crazy on the soccer field and swim for hours in the swimming pool and I can almost forget. Then all of a sudden I look up at her during soccer practice and see the color drop from her face and call her off the field to check her sugar, sending her back into the action with juice box in hand and I hate it. I don't think she minds, but I do. I'm getting these tiny tastes of life without, and it's what doctors might call "habit forming", and I am aching for more.
I have a feeling a lot of people living in close quarters with a chronic condition would say the same thing. I just don't want it to be a thing anymore! I want to care about something else and take a break from this one for a bit, but the whole "keep the human alive" thing is rather pressing, isn't it?
I want her to feel like a "regular kid", or at least that's what I'm telling myself. The truth of the matter is, she doesn't feel like a regular kid. She knows she's different and it's not all bad. It's part of her and it's totally fine and good. It has set her apart, and by being set apart she has been able to open new doors, experience new things, and meet new faces; giving and receiving hope that other "regular" kids aren't privy to. Sure, she has her moments: rolling her eyes when I ask her to check her sugar, missing recess because of a low, only having one cookie at the class party while her friends get three and four.... there are definitely thorns among these roses, but she is handling them well... for now.
I guess the issue at hand is that I want to feel like a "regular" mom. I want to rescue the lost brain space and sleep and hours in doctors offices and give them back to myself. It's selfish I know, but it's fair and good to say, in the least. I don't want to count carbs. I don't want to check her blood sugar. I don't want to do the math. I don't want to order the supplies, call the pharmacy, call the doctor, keep skittles and apple juice in my car, be afraid of illnesses. I don't want to read about the research, or the newest devices, or know all the things I know. I don't want to hear the horror stories about kids not waking up, or having seizures. I don't want to have to hold that weight at all times, but it is chronic isn't it... constant and deeply rooted.
I volunteer with the Juvenile Diabetes Research Foundation and I love the people that work there. They work, what seems like, tirelessly for a cause we fell into. I will be forever grateful for the things they do in plain sight and behind the scenes in taking steps toward a cure for type 1. 7 years ago, I was in that office all the time. I was at every event and meeting and party and walk... you name it.
I realized lately: I need to sit for a bit.
I still love JDRF. I will still be at the meetings and the parties and the volunteer moments because they are my people, that is my beat and even if Bug wakes up tomorrow with a miraculously working pancreas I will still care and stand in search for a cure for type1. But I can't do all of it, and the people that matter are fine and supportive of that decision. Just this year I did not raise a posse or even show face at the big JDRF One Walk. On that particular afternoon, my husband played golf with Bug and his brother (who also has type1), and I took a nap on the couch. The world kept turning and JDRF raised a bunch of money without us.
It's impossible to feel the greatness of such a weight while trying to be a constant source of strength amidst the struggle. The struggle is wearing enough in itself. The mental wear and tear of a parent of a child with a chronic condition is constant, so to say that our tethered energies need strengthening at times is an understatement.
I don't mean to write all of this and tell you to abandon the nonprofit organization fighting on your behalf. Stay the course. Keep your causes. Fight for your kids and your battles, but let your strength rebuild. It's ok to WANT to not care. However, I have found that even when I try to push it away, the caring sneaks back in and I can't turn it off.
I will stand for my something, and when I feel a weakening in my knees, I will sit. I will sit and vent and cry and hate all of it for a very short while and then I will look up and see the people that stood in my stead while I sat. I'll say thank you, knowing they will never fully understand the roots my sentiments hold, but I trust that they feel validated in knowing they served me well.
I want to rebel and not to care. I want my cause to be different, but I'm learning it was a purposeful fall into a path and a direction I would not have chosen. The Lord needs me on this path and my eyes focused in this direction, realizing new strengths and new weaknesses.... opening new doors, experiencing new things, and meeting new people; giving and receiving hope that other "regular" kids aren't privy to. For that, I'll stand to no end.
