• aimeepinard

Changes and More Changes

I don’t want to do this.


I don’t want to do this.


I don’t want to do this.


One month ago today, I was sitting beside my baby in an ER room, watching as strangers stuck IV after failed IV in her tiny arms. Every few minutes, someone would give me a vague update but the words all seemed to run together. My brain couldn’t catch up to what was happening, it couldn’t or wouldn’t compute because it simply refused to accept what it was hearing.


I don’t want to do this.


I followed the ER nurse and physician to the ICU room, texting updates to my husband who was making a torturous drive back home from a work trip, probably even more distraught than I was. And just as quickly as all the words had come, the beeping and whooshing of sounds, the realization that we were not going home anytime soon, it all stopped and it was overwhelmingly quiet.


I watched her in the glow of the light from the hallway, breathing hard and heavy because her blood was still too thick for her to circulate. I found myself apologizing to her over and over and over because it didn’t matter how many times the doctors and nurses told me this was not our fault, that we could not have avoided it, the guilt I felt was suffocating.


I do not want to do this.


Over the next 3 days, we were educated on how to give her insulin, what to eat and when. How to watch her sugars and what to do if they went too low or high. We were told this was not going to be an overnight fix, not by a longshot. In reality, it could take months to truly find that sweet spot but it will likely be everchanging with growth, hormones, stress etc.


I REALLY don’t want to do this.


We have had numerous people tell us about someone they know who has Type 1 and how they’re THRIVING.


That word sits like a jagged stone on my heart because I KNOW she will thrive. Not because of Type 1, but in spite of it. She will have no choice and she won’t know any better.


But WE do. We know what she’s lost. We know what we’ve lost.


As I sat, watching her, the idea that Nick Jonas has this thing meant nothing to me. Because all I could think about is how I can’t bake cookies whenever I want anymore. I thought about when she will become a teenager and what to just go have fun like her friends but will have to be more conscious of her sugars, she will have to be more grown up, faster. I thought about her college days and the stupid mistakes she won’t get to make, and the ones she will and if they will be harmless or…


I thought about wedding dress shopping and if she will feel self-conscious about her monitor or pump being visible.



She will thrive because her dad and I will move Heaven and Earth to make it so. We are doing all the research and calculating and stressing so she won’t have to – although eventually she will take some of this on and I dread it.


I don’t want to do this but I have to and I know God has been preparing me for this for years. I felt that deep in my soul in my complete and utter exhaustion, I knew this was part of our story, this was another part of what I will have to do in my life. And no, I do not want this, I am not proud of this new task… I’m devastated over the new roles each of us has to take on but I AM proud of HER… of how strong and resilient she’s been. How she handles all of this with such grace and THAT makes me stronger.


It’s been a month and we still are no more confident than when this started, but we will get there. We are a team and we will be her biggest advocates and support system.


The loss is immeasurable... the grief over the death of what I imagined for her life is beyond anything I can put into words, but we will get through this and one day I will read back over my journaling and THEN I will feel proud of how far we've come.


But for now... while we are still in the thick of it... I will allow myself to grieve and feel what I feel.


It's been a month.

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