Two Years of Love, Laughter And Diabetes

I watched her chest rise and fall, waiting for her breathing to become steady again to know she was asleep before I let the tears start. I wondered if she would wake up to hate me, still angry, not wanting me to touch her. Nothing, and I mean nothing, hurts me more than hurting my daughter. But with a life-threatening disease, sometimes I find myself having to do things I never imagined I would as a Mom. I still remember the day she was diagnosed, having to help hold her down so they could put an IV in my one and a half year old. She screamed and cried, trying so hard to break free. Her pain and fear will live in my mind for the rest of my life. Now I have to inflict a different kind of pain on her, every three days for her pump and every ten for her CGM. None of it is easy, for either of us.

The night I talk about above was the anniversary of her two years since diagnosis. We had gone to my parents or dinner, and then out for ice cream. I felt like her diaversary should be celebrated, for it marks the day her life changed forever. I felt that SHE deserved to be celebrated for enduring this disease, for not letting it take away her joy for life. Unfortunately her pump site change also landed on this special day. We are only seven weeks into Lily using an insulin pump, and while it has been life changing for her time in range, having to change the site every three das has been a challenge for me.

The thought of making pump site changes a negative experience (or anything diabetes related honestly) for Lily scares me. I don't want her to resent the pump, or worse, resent me. I try so hard to explain things to her, to make her feel like she has a choice in the situation, and that she can trust me. But I think I broke that trust on her diaversary when I changed her site while she slept. I had been trying for almost an hour to get her permission to insert her new infusion set when I hit my wall. I couldn't argue and bargain with her anymore, we weren't getting anywhere. I told her if she wouldn't let me do it I would have to do it while she sleeps. She obviously hated this idea, but I have done a few CGM changes in the night when one has quit on us and they went well. So maybe this was the answer for pump site changes. I was so hopeful.

Lily didn't want me to put on her new infusion set while she was asleep, and she made that really clear, but I was hoping she would barely feel it, maybe feel a small pinch but not enough to disturb her. I made sure to tell her what I was going to do, but neither of us were prepared for how bad it went. I waited an hour after she fell asleep, rolled her over and waited to see if she was in a deep sleep. I was able to move her arm around and poke the location her new site would be without her budging. I got everything ready and took a few breaths, grabbed her skin and inserted it. She woke up and turned to me, looked at what I had done, and looked back at me with the most heart breaking look. The look of broken trust. She instantly retreated from me, turning her back to me crying. I started apologizing and kissing her shoulder and she swatted me away telling me not to touch her. It took everything in me not to cry then. I decided to tell her I would lay with her with her but give her space. I told her I loved her and I was sorry, and she responded with I don't love you, don't touch me. I sometimes wonder if she will truly hate me one day for this. I'm so scared of this disease taking my daughter in more ways than one.

Laying beside her, watching her breathing to see when it was safe to cry, I also found comfort. I realized that although this is hard, and I am so overwhelmed with sadness and fear and confusion sometimes with this disease, I am so lucky to still have her. We are keeping her alive every day. We are extending her life when her body failed her. I felt blessed to be laying beside her, able to watch her breathing comfortably in bed at home. She is safe, and loved and cared for. If she does resent me one day, I will know that it is from me doing the best thing for her. She may not like the pump on site change days, but the difference in her care has been unbelievable. I know we are saving her anywhere from 15-30 injections every three days. That's 2,000 - 3,650 injections a year. Her arms are not bruising from all of the injections any more. Sure, she has some bruising from her pump site, but that is the lesser of two evils. Her time in range is significantly better, so we know that long term her organs will not be as damaged. She is sleeping through the night now, no longer waking up to me injecting her every two hours or getting her to sit up and eat or drink. This is improving her current and future life, but try explaining that to a three year old.

It's going to take a lot of trial and error to figure things out, and I hate that I don't have it all figured out for her, that I am learning with her. I never would have thought a little over two years ago that this is where we would be. But just like we have done these past two years, we will learn and grow. We are two years into using a CGM, maybe in two years pump site change days won't be dreadful either. Sometimes new things are scary, but if Lily has taught me anything, it is that we adapt. We are stronger, braver and more resilient than we know. I have a feeling Lily is going to do great things in her life, and make a lot of change. All of this is happening for a reason, it will all make sense one day. Until then, there will be tears, but there will also be so much love. Above everything else, she will always know she is loved.

Happy two years Lily

xoxo T1D Mommy