Insight. I'm thankful for it, but it doesn't alone make what happened last night easy to bear. I didn't sleep well and woke thankful that I have a place to air the dirty laundry and hopefully in the process help others to not feel alone.
Jessica was exhausted. Second day back at school after a long, luxuriously unscheduled break. She had a babysitter all night due to really late work meetings for mom and dad. A social studies test tomorrow that she is stressed about. And, then for whatever reason her pump site that had apparently been bothering her all day started to really hurt. The debate...do we change it at 9:30 pm or not? And, as a side note...why in every rare while do these sites start to hurt after only being in a day or two? Scar tissue hitting a nerve??? Anyone know??? At any rate we make the possibly unwise decision to change it. Due to her once again somewhat high numbers I am unsure if it is working well, and figure the last thing we need on a busy school morning is an unexpected site change. Besides, I reason, we've gotten pretty good at quick site changes. We should be able to get a new one in lickity split and get her (and her sister) back to bed which is where they desperately need to be as it is now 9:45 at night. My T1 hubby says he'll do it (thank God) and I jump on the computer for my ever so disliked task of planning tomorrows meals and carbs.
And then I hear it....a blood curdling scream followed by hysterical crying. Apparently, we have hit a nerve. Now, I am sure it hurt. But, in my experience as a mom I have definitely learned that in a over-tired child crying breads more crying. And, in this case a complete breakdown. I know from common sense, and from the absolutely wonderful SETEBAID (we turn diabetes around!) family support weekends, that I need to let her have her emotions and just support her. But, this one was a doozy. She laid pounding her fists screaming "I want the artificial pancreas now." "No, I don't...I don't want anything, I just want a cure" followed by more sobbing and "I know a cure won't come in my lifetime....it is just too hard to do....I mean how will they get my broken pancreas out?" And then she turns to my husband "this is so much harder for me....I got it at seven....you didn't get it until you were seventeen....why did I get it so young???" This followed by even more self pity that as a parent was devastating to watch..."Why me???? Why did it have to be me????" At this point her twin sister who is there also holding her and telling her she loves her bursts out crying. Now, anyone at all insightful would realize that Courtney, being Jessica's twin sister, probably asks herself this on a routine basis. Courtney is now crying. "Jessie....I wish it was me. I wish I could give you my pancreas. I want it to be me." She then declares "Jessie-I know what I will do when I grow up...I am going to find a cure." At this point Sean and I are near tears ourselves. Well, that's a lie. I am in tears. A psychiatrist would just have so much fun analyzing this on so many levels.
We let them cry, telling them we love them. We stress to Jessica that she is not alone. She has so many who love her. I remind her of all those that support Team Jessica through walking with us and contributing. I know from medical school training that you never, ever take away a patient's hope. Sometimes that is all they have. I tell her that scientists are working hard everyday to make better technology and to find a cure. I tell her I know it will happen in her lifetime. I remind her that we don't know why things happen. I remind her of our adorable, beautiful friend who lost his little short life to cancer. It wasn't his fault, just as this isn't hers, just as all the incredibly crappy things that happen to so many are not their faults. I tell her I am sure she will do great, amazing things in life because diabetes has made her stronger. But, I tell her she has every right to feel this way...it is normal...anyone would. But, we will not let diabetes win. She hugs me tight for what seems like forever. As tears stream down my face I pray I am doing this right...being what she needs...saying the right thing. But, I also know there is no "right," and remind myself that 99% of the time she is a well functioning, happy, amazing child. And, I am so thankful she feels safe and can have these kind of breakdowns as I also know they are necessary.
I take Courtney aside. My heart aches for her as much as for Jessica. I tell her what an absolutely amazing sister and daughter she is. I tell her that it is ok she was not the one that got it. It is not her fault. It is nothing she did. None of us know why it was Jessica, but I would never, ever want Courtney to have it. I tell Courtney that she must follow her dreams. I tell her that the way to support Jessica is not to dedicate her life's work to finding a cure if it is not her passion, but to always support Jessica, which is exactly what she is doing. She, too, gives me a huge hug. And, I again try to remind myself that I have to believe she will be ok. And, I remind myself just as these events are Jessica's life story, they are also Courtney's. These events will shape both of them, help them to be resilient, and make them who they will become.
We finally get them to bed at 11 pm. I give my wonderful husband a huge hug. I tell him that as absolutely heart wrenching this evening was for me, I know it was worse for him. I remind him it is not his fault. Just shitty genes, and whatever environmental factor triggered them. I remind him what a wonderful role model he is for her. He doesn't say much...he is always the picture of quite strength. I can only imagine what is going through his mind. I tell him I love him and we will get through this together, just like we do everything.
I remind myself that things could be so much worse. Insulin exists. We can afford it. She doesn't have cancer. We have such great support from family and friends. I allow myself a few minutes of self pity in the shower. I feel alone. I am so tired of it. I'm tired of not being able to get her numbers under control as she seems to be hitting growth spurt after growth spurt. I'm tired of feeling it is my fault I can't. I know I am smart...shouldn't I be able to control these ridiculous numbers. I am tired of picturing her sticky red blood cells and worrying that they are already causing damage. I'm tired of worrying about the emotional impact this hated disease is having on my whole family. I'm tired of it taking so much of our strength, time, money.
But, I dry my tears, We will march on. We will not let diabetes win. I remind myself of all we are doing. I remind myself that life is full of ups and downs, but that it remains beautiful. I remind myself we are not alone. We have so many who love and support us, and for that I will always be incredibly thankful. I feel so thankful we have a Children with Diabetes weekend coming up in February. I will register for the next one in June. I feel thankful I realized this week that Jessica can take Courtney with her to Clara Barton camp. She has refused to go to camp as she doesn't want to go without her sister. Thank God Clara Barton has been wise enough to realize that siblings are a part of the team. I decide I will email her wonderful healthcare provider and ask for help instead of waiting until the next appointment. I remind myself that diabetes has made my family so much closer and made me a better doctor.
I remind myself that to fully enjoy and appreciate the good in life, we must deal with the bad and ugly too.