Jess and I have been working hard on site changes.
I went to a wonderful lecture at the Children With Diabetes conference that discussed some of the psychological factors involved in the caring for a T1 child, including site changes. I swallowed back tears as he told the audience that one reason diabetes is so hard is that it is a constant reminder that as a parent "you couldn't protect your child." And every blood sugar check, shot, site or dexcom change is just another reminder that we as parents were unable to protect our child. I know he is right. I spent many months after Jessica was diagnosed beating myself up for many ridiculous possible things I decided I had done that had led to this inability to protect her. I only breastfed nine months, I put her in daycare, I gave her too much cows milk, I hadn't fed her an entirely organic diet, and many other absolutely ridiculous ways that I as a parent had failed to protect my little girl. And, watching a child dread site changes and scream when they hurt is a pretty good reminder that I was unable to protect her.
He told us that if site changes were taking more than 5 minutes it was a parent issue, not a child issue. This really made me think, and was a life changing lecture.
In the beginning when Jess was diagnosed and on multiple shots a day she developed this ridiculous routine before each shot. We had fallen into the same pattern with site changes. She has to lay on the bed and go through an entire routine that involves begging "please don't do it until I relax...you can't do it until I'm relaxed"...all the while her anxiety building. The hubby and I have approached this different ways. I have felt the anxiety and anticipation is the worst part, and have inserted the site with no warning. The hubby has let her tell him when to do it with site changes often taking 10 to 15 minutes or more. Neither of us knew what to do or how best to truly handle her anxiety surrounding them.
It took talking to other families living with Type 1 and this lecture to help me understand why. As much as her site changes remind me that I could not protect her, they absolutely kill my Type 1 hubby. As many times as I and others have told him it is not his fault she has Type 1, the guilt remains. It doesn't matter that he rationally knows Type 1 is multifactorial, or that of course he has no control over his genes...the guilt remains. And, so the drawn out site changes are a parent issue, albeit it not one that is at all his fault or a conscious decision.
As luck would have it Jess had a site failure shortly after I heard this lecture. The conference took place at the biggest hotel I have ever been to, and to go back to the room to lie on the bed and do her routine would have taken the whole afternoon. Much to her protests, I told her we were doing the site change in the bathroom. She panicked and was not happy, but we did it in less than 5 minutes! Victory!
When we returned home I took over site change duty. I hate it. But, I know the hubby hates it more. We did well...accomplishing all of them in 5 minutes or less. And, a HUGE moment. Jess did the first one completely on her own.
But, one night I was stuck at work late on a site change night, and somehow we fell into the pattern of the hubby doing them again. The drawn out site changes began again, and she stopped doing them on her own. She had two in a row that hurt and her anxiety escalated. Once again the anticipation and anxiety became the worst part. She once again became her own worst enemy.
It is frustrating and heart wrenching to watch.
I have taken over site change duty again, and I am determined to conquer these fears and anxiety once and for all. I told her we are making a game out of site changes and doing them in a different room every night. Tonight we did a site change in the garage. My hope is that this will break the cycle of her needing to lay on the bed and do her ridiculous routine. I took the Tiger Mom approach earlier this week and told her if she didn't do it herself, I would and I would pick a new spot to try it (she only agrees to her buttocks and is terrified to try any other spot.) I basically yelled at her to "Push the button, push it now!" I hated myself, but she did it and it worked. And, it didn't hurt. Her numbers were thankfully great the next day, and I told her that she must have done one amazing site change. Tonight she said "If I don't push the button myself, you'll do it in a new place?" It is like she needs to hear this to force herself to do it. But, we are making progress. She has done the last two in new areas of the house and pain free. And, in under 5 minutes.
This is such a balancing act. On the one hand I want her to conquer her anxiety and be able to do these hated site changes quickly and painlessly. On the other hand I want her to know that I will always be here to help when she just needs a break, and that she doesn't need to take on this new stage of self-care.
My heart so bleeds for her. I can't imagine how she will do this the rest of her life. I have been exhausted with a too busy work schedule, home responsibilities, and all that is involved in sending a child with Type 1 back to school (not to mention preparing for our first ever meeting with her school to implement a 504 plan.) It has been an effort to come home every night and review all of her numbers and make changes. I am determined to see better blood sugar control as we enter this new school year. I mentally groan when I realize it is a site change night. I am so incredibly sick of it all. There is never, ever a break. Every vacation, every second it is there. I am constantly a cheerleader, telling her she can do it, supporting her on her "I hate diabetes days." It has been almost three years, and enough is enough. I just want it to go away. And, the guilt just fills me. How dare I feel this way? If it is this exhausting for me, how must my husband feel after 23 years? How will Jessica feel as the years march on? I freaking hate this disease.
But, I will keep working. I am determined to help her conquer this site change phobia. I couldn't protect her from getting this, but I will give her the tools she needs to fight it. And, I will stand and fight it with her.